"You are like a human black cat, proof that Murphy's Law exists." - Dave, as we sat in the E.R. yesterday.
I don't know if I want to laugh or cry right now. It seems like whenever I think everything is going well, something bad has to happen and naturally, bad occurrences must come in threes because one thing just isn't enough.
First, an update on me, healthwise. For once, everything has been great. My medicine to treat the dysmotility has been working. I have been keeping food down. My weight is still dropping, though I haven't returned to any doctors because with the amount of weight I have lost, I fear they will want to give me a feeding tube and just fuck that noise. I'm not throwing up. I may not be getting in the ideal amount of calories, but I'm taking in something and it is staying down. That's progress. I've been feeling good. No pain, limited nausea. The only nausea I feel is in the morning after I take my meds because I take about 7 pills at once, including my multivitamin so I think it's the pills that cause the nausea. A new problem has arisen though, a problem that was always there, not digestive or tumor related, but I'll get into that in a bit.
I have been feeling great and happy and just filled with Christmas spirit. I went all-out with decorating this year and it looked like it puked Christmas in my house. My 2 cats absolutely love this. (We took in an abandoned kitten that we found in an alley outside Gianna's baton practice). Every morning I am picking up bulbs from the Christmas tree and fixing my garland. Another reminder why I prefer dogs, but I know it's Sophie causing the damage and not Midnight.
So, getting to the reason of the post. The bad luck that has been stringed together and has been trying to break me down and I've been trying my hardest not to let it. After what happened to me yesterday,
it's hard not to, though it's very easy to find the good. I'll start with the first thing.
I was at my neurologist appointment as a med check on my migraine medicine. My blood pressure was low, 73/42, which isn't uncommon for me. Very rarely that top number will hit the 90s and it's never been in the 100s. She had me stand up to take it, which I almost fainted, another common occurrence for me. She retested, which my blood pressure was even lower. She didn't like this, obviously. We discussed how I will sometimes space out and if this happens while I'm driving, I will get so far and have no recollection of how I got that far and for a few seconds not recognize where I'm at or where I was going. Then I have my days where I'm constantly dizzy and just feel like I'm living on autopilot. No matter what I do I can't focus on a task and am unable to hold a conversation. She scheduled an EEG to rule out seizures, but she believes I have a heart problem. I'm being referred to a cardiologist to have a tilt table test done. The neuro believes my heart isn't pumping enough blood to my brain which will explain my mental fogginess. I had gotten a ticket last month for running a stop sign because I was in one of those episodes and honestly didn't even see the stop sign! So, let's fix the digestive issues and give her heart problems. Honestly, though, I've suffered with this for years and no doctor ever seemed too concerned.
Bad luck #2. Our furnace broke. It could've been worse because we could have had to replace the whole unit. But still a $300 fix around Christmas time puts a hurting on the wallet.
Now, the big one. The game changer. The thing that changes everything. Yesterday started as a regular day. The kids and I went to church. The girls were I a little musical thing where they played bells and sang a song in front of the church. It wasn't snowing when we left and I wasn't expecting snow until later that afternoon. Sitting in the service, I started feeling a little nervous as I watched the snow fall because I had only driven in the snow once and it was 3 years ago and neither kid was with me. I saw some salt trucks pass by so my worries faded quickly. I retrieved my girls from their classrooms after church had ended and was relieved to find a cleared parking lot and cleared roads. We started on home and all was well....until we started to hit the end of 201. I started to slide a bit. So, I slowed my car down and the girls started to panic a bit. We had said a prayer and I told them not to worry because we have angels surrounding ours that would keep us safe. No sooner than 30 seconds after I said this, I hit ice that caused me to lose complete control of my car. Over a median I went, into another lane, right into the front end of a truck. As we were sliding, I braced my girls and calmly said "Hold on, mommy can't stop, we are probably going to wreck. We are gonna be okay." I heard them crying, saw white, didn't hear or feel anything for a few seconds then heard crying again. I popped up out of my airbag and turned back to look at my kids who were fine. Jenna who was screaming so loudly her face was red, was screaming my name "Mommy why is your face red?!" I touched my face, I wasn't bleeding. I wasn't hurting, my glasses were broken into two, but that was all. I jumped out of the car, went around and checked them out to make sure they were okay. They were. The woman I hit was fine. My van wasn't so lucky. Smashed headlights, my hood is all smashed in, bumper hanging off. I'm trying to exchange info, and my kids hop out. All I can think is what if somebody else slides over here and smacks my kids. I scream for them to get back in the car but they refuse to leave my side. A friend who witnessed, came and picked them up. If my car hadn't drifted where it went, she was the car in front me. I would have rear ended her and her 3 small children. God steered my car into the other lane.
Now, you hear horror stories about airbags. How they will leave burns, break noses, necks, and bruises. I have no markings. I sit right up on the steering wheel, as far as my seat can go. My husband was always nervous that the airbag would break my neck. The only thing it did was snap my glasses and I have a pretty bad sprain in my neck and am in a neck brace for a few days. This accident could have gone wrong in so many ways. I could have hurt my friend and her kids. That airbag could have seriously hurt me or killed me. My kids could have gotten hurt. But we all walked away without a scratch. I told my children that we really did have angels in our car because technically that airbag should have messed me up.
But now, I'm left without a car. We only had it for a few months and it was absolutely wonderful to not be chained to this house. We still have 5 years of payments for this car, too. I hear mixed things about how if the airbag is deployed, they will deem the car automatically totaled and they will junk the car. The car started up. No fluid was leaking, the windshield was fine...hopefully just cosmetic damage. But a $500 deductible. Another not-so-nice credit card charge that has to happen right before Christmas. I need to be thankful the accident wasn't as bad as it could have been, that we are all okay. My kids are a little messed up from it and Jenna doesn't want to leave me alone or get into a car right now. Gianna doesn't want to ride a bus because there are no seatbelts but right now she has to because I have no car to drive her to and from school :( But it was a definitely another reminder how fleeting our lives can be. How we can be one second and the next, we can be gone just like that. It makes me want to hold my children and never ever let them go.
I'm going to end this ridiculously long post. Hopefully the bad luck has left and something awesome is lurking right around the corner. But come on, this is my luck...when does anything awesome ever happen to me? Hmm...how about never? :/
Monday, December 9, 2013
Tuesday, October 22, 2013
Almost There...
So, this post is gonna be more positive than my last one. After re-reading, I was in a really bad place. Therapy hasn't been helping too much, but maybe because I have been avoiding talking about certain issues that brings me shame and try to keep hidden, which I know is the whole point of going to a therapist lol. But, we talk about other issues, like my eating disorder and my obsessive thoughts and controlling behaviors, though I don't feel it's working. If anything, these things have gotten worse for me since I started going to therapy. The medicine has been working, though. I no longer feel hopeless and don't cry over everything, so that's a plus.
I'm not as sick as I was over the summer. At least food stays down. I never have an appetite and my weight is still dropping. I'm down to 98 pounds, the lowest my weight has ever been. I look sickly. You can count my ribs and see my spine. I have no butt, and my trademark DDs are more of a D (I don't think I'll ever get rid of those things) I am trying to up my calories, but it is hard for me in more than one area. It's a mental battle, for one. I log my calories so I can get an idea of how much I'm eating. I can eat a few things throughout the day and feel full and satisfied and would think that's enough, as long as I wasn't feeling hungry. But, logging the calories, I'm not even hitting the 500 calorie mark. And with all the moving around I do ( I almost never sit down and let myself relax) I burn almost half of what I eat just by doing my normal cleaning routine and caring for Jenna, not counting the days I am able to get my walks in. So I have been trying, but it's impossible.... I hate feeling sick from being full and having to make myself eat. My husbands remedy is to eat more higher calorie foods, but I refuse to eat unhealthy. I could easily hit my 1300 calorie goal if I let myself eat ice cream and pizza and junk, but there's no nutrition. I already can't eat the normal healthy stuff like fresh fruits and veggies, so I gotta try to find a balance somewhere. If I'm gonna try to overcome this eating disorder, it has to be done my way.
Another thing that has been happening (sorry if I've been jumping around) is my youngest, Jenna, was diagnosed with level 2 autism a couple of weeks ago. She is challenging to care most days with her constant need for attention and her violent temper tantrums. I was really looking forward to her starting kindergarten next fall, but I don't think she is going to be ready. Her preschool teachers are already struggling teaching her because she is so stubborn and refuses to be taught anything at all. She won't practice writing her letters or her name, I can't get her to learn to write her name, she won't socialize with the other kids. I almost feel like we are wasting our money on preschool because she isn't getting much from it. But then we have days (like today) that aren't too bad. We haven't had many tantrums, but she's being hyperactive, clingy and needy for attention, but this is an everyday occurance for me. I am just relieved we got a diagnosis and we will be getting different therapists to come in and work with her.
So now for something completely off topic of everything. I have always had plans for myself. To do something with my life, other than being a mommy and a wife, though doing what I do is a full time job in itself and I don't really know why I would want to add more stress onto myself lol. But, maybe I am just a glutton for punishment? I always had a strong desire to be a nurse, but I think this has changed. I am juggling the thought of two different careers, both I've had a few people tell me I should pursue. A therapist, or a dietician. It's actually ironic in a way because my therapist I see weekly told me I should consider this as a career path for myself. I really don't let her do much. I shrink myself, without doing the schooling. Everything she suggests for me to do, I already do on my own. She tells me most eating disorders and obsessive/controlling behaviors are usually stemmed from something that happened in your life. I know when these behaviors started developing...around 3-4 1/2 years ago. I know what events occurred in my life that more than likely triggered these behaviors, but she doesn't. I refuse to talk about it. I refuse to bring up the hurt and pain, and shame and guilt...lots of emotion. But I know it's the key to recovery for me. Anyway, I'm getting off topic, which I do a lot, eh? She thinks becoming a therapist would be ideal for me. I've been through a lot, I still go through a lot, so I have empathy and personal experience. And apparently I already know a lot about this stuff without even having to go to school for it. Then, the child psychologist that evaluated Jenna told me to go for it. We were going through ways that I handle her, how I managed to teach her the alphabet. She told me I need to go get my degree and come work for her company. She was being dead serious about it. She actually took the attention off Jenna and was encouraging me that I need to go for it and how just by talking how I am able to handle my baby that I have a natural knack for it. Idk yet....it's an awful lot of schooling and training.
The dietician thing came about just recently. I have been through so much, learning so much about food. I have so many dietary restrictions due to my gastroparesis and ileostomy and I spend spare time researching. I've met with two nutritionists and everything they tell me, I already knew. I have friends that come to me for nutrition advice. I know all about macronutrients, micronutrients, how our body breaks down and uses these. But on the flip side, I have friends that come to me when they need advice or somebody to listen. Both careers require a lot of school, a 4 year degree minimum. That's a lot of student loans, homework, papers schooling, on top of the other work I already struggle to keep up with. It's something I really need to think about and of course my hubby is no help. He's fine if I go back, he's fine if I don't. But he knows I'll be stressing myself out trying to keep up with my girls and their school work. When will I have time for my own on top of cleaning my house and making dinner for everyone and making sure the girls are clean for bed? I get stressed thinking about it! It's not like I can totally depend on Dave, because he's not always home. Maybe it's just all pipe dreams.
Anyways....I think I have rambled on enough for this and I have sat for too long and am starting to get tired. I got towels to fold a dishwasher to empty/load and floors to sweep. And maybe somewhere in my day, I'll get dinner started and can sneak in some reading of my book so I'm not up so late tonight reading it lol.
But I would like to end this with one positive affirmation for myself, so one day when I go back to re-read this thing, I can remember and remind myself. Even though I have several health problems and always seem to be faced with obstacles, whether it's nursing, therapist, dietician, or something else entirely- I will never lose hope that one day I WILL do something important and meaningful and WILL make a difference in somebody's life. It's just a matter of when.
I'm not as sick as I was over the summer. At least food stays down. I never have an appetite and my weight is still dropping. I'm down to 98 pounds, the lowest my weight has ever been. I look sickly. You can count my ribs and see my spine. I have no butt, and my trademark DDs are more of a D (I don't think I'll ever get rid of those things) I am trying to up my calories, but it is hard for me in more than one area. It's a mental battle, for one. I log my calories so I can get an idea of how much I'm eating. I can eat a few things throughout the day and feel full and satisfied and would think that's enough, as long as I wasn't feeling hungry. But, logging the calories, I'm not even hitting the 500 calorie mark. And with all the moving around I do ( I almost never sit down and let myself relax) I burn almost half of what I eat just by doing my normal cleaning routine and caring for Jenna, not counting the days I am able to get my walks in. So I have been trying, but it's impossible.... I hate feeling sick from being full and having to make myself eat. My husbands remedy is to eat more higher calorie foods, but I refuse to eat unhealthy. I could easily hit my 1300 calorie goal if I let myself eat ice cream and pizza and junk, but there's no nutrition. I already can't eat the normal healthy stuff like fresh fruits and veggies, so I gotta try to find a balance somewhere. If I'm gonna try to overcome this eating disorder, it has to be done my way.
Another thing that has been happening (sorry if I've been jumping around) is my youngest, Jenna, was diagnosed with level 2 autism a couple of weeks ago. She is challenging to care most days with her constant need for attention and her violent temper tantrums. I was really looking forward to her starting kindergarten next fall, but I don't think she is going to be ready. Her preschool teachers are already struggling teaching her because she is so stubborn and refuses to be taught anything at all. She won't practice writing her letters or her name, I can't get her to learn to write her name, she won't socialize with the other kids. I almost feel like we are wasting our money on preschool because she isn't getting much from it. But then we have days (like today) that aren't too bad. We haven't had many tantrums, but she's being hyperactive, clingy and needy for attention, but this is an everyday occurance for me. I am just relieved we got a diagnosis and we will be getting different therapists to come in and work with her.
So now for something completely off topic of everything. I have always had plans for myself. To do something with my life, other than being a mommy and a wife, though doing what I do is a full time job in itself and I don't really know why I would want to add more stress onto myself lol. But, maybe I am just a glutton for punishment? I always had a strong desire to be a nurse, but I think this has changed. I am juggling the thought of two different careers, both I've had a few people tell me I should pursue. A therapist, or a dietician. It's actually ironic in a way because my therapist I see weekly told me I should consider this as a career path for myself. I really don't let her do much. I shrink myself, without doing the schooling. Everything she suggests for me to do, I already do on my own. She tells me most eating disorders and obsessive/controlling behaviors are usually stemmed from something that happened in your life. I know when these behaviors started developing...around 3-4 1/2 years ago. I know what events occurred in my life that more than likely triggered these behaviors, but she doesn't. I refuse to talk about it. I refuse to bring up the hurt and pain, and shame and guilt...lots of emotion. But I know it's the key to recovery for me. Anyway, I'm getting off topic, which I do a lot, eh? She thinks becoming a therapist would be ideal for me. I've been through a lot, I still go through a lot, so I have empathy and personal experience. And apparently I already know a lot about this stuff without even having to go to school for it. Then, the child psychologist that evaluated Jenna told me to go for it. We were going through ways that I handle her, how I managed to teach her the alphabet. She told me I need to go get my degree and come work for her company. She was being dead serious about it. She actually took the attention off Jenna and was encouraging me that I need to go for it and how just by talking how I am able to handle my baby that I have a natural knack for it. Idk yet....it's an awful lot of schooling and training.
The dietician thing came about just recently. I have been through so much, learning so much about food. I have so many dietary restrictions due to my gastroparesis and ileostomy and I spend spare time researching. I've met with two nutritionists and everything they tell me, I already knew. I have friends that come to me for nutrition advice. I know all about macronutrients, micronutrients, how our body breaks down and uses these. But on the flip side, I have friends that come to me when they need advice or somebody to listen. Both careers require a lot of school, a 4 year degree minimum. That's a lot of student loans, homework, papers schooling, on top of the other work I already struggle to keep up with. It's something I really need to think about and of course my hubby is no help. He's fine if I go back, he's fine if I don't. But he knows I'll be stressing myself out trying to keep up with my girls and their school work. When will I have time for my own on top of cleaning my house and making dinner for everyone and making sure the girls are clean for bed? I get stressed thinking about it! It's not like I can totally depend on Dave, because he's not always home. Maybe it's just all pipe dreams.
Anyways....I think I have rambled on enough for this and I have sat for too long and am starting to get tired. I got towels to fold a dishwasher to empty/load and floors to sweep. And maybe somewhere in my day, I'll get dinner started and can sneak in some reading of my book so I'm not up so late tonight reading it lol.
But I would like to end this with one positive affirmation for myself, so one day when I go back to re-read this thing, I can remember and remind myself. Even though I have several health problems and always seem to be faced with obstacles, whether it's nursing, therapist, dietician, or something else entirely- I will never lose hope that one day I WILL do something important and meaningful and WILL make a difference in somebody's life. It's just a matter of when.
Tuesday, August 27, 2013
Just Breathe
I have given up (or is it given in..not sure which phrase best suits this?) I have started therapy and taking an anti-depressant. I know I haven't been myself since my youngest was born, with having bouts of depression on and off and with the recent events and me being sick all of the time, I decided it was time to finally do something about it.
The doctor says its going to take about 4-6 weeks for the medicine to take effect and its only been a week so far. Nothing has really happened with the therapy yet being as I've only had gone twice and both times were alot of paperwork and worksheets to figure out exactly how depressed I am, which they think I'm severely depressed, especially since I have been having thoughts about ending my life again. I have had recurring thoughts of this since I was about 16 or so. I never had any real plan to do it, but just always that feeling that everybody would be better off.
I have been feeling like a terrible mother because I'm always sick. Anytime I eat, it comes right back up. The doctors can't figure out why. Part of it may be my fault. I had an eating disorder before all of this, an untreated eating disorder. I basically starved myself and now that I'm trying to eat, maybe my body is like "Food? This is bad, I don't want this! Get rid of it!" Who knows. I mean, it's very possible it's the dysautonomia causing it, but I've lost about 15 pounds this summer because of it. But anytime we go somewhere - to a park, a birthday party, to visit somebody - everything gets cut short and we leave early because I end up getting sick. Let me tell you, throwing up in a port-a-potty is definitely no picnic. But, I've done it more times than I can count this summer. I feel like I am ruining my kids childhood and I don't want them to look back and only remember that they had a sick mom that ruined all of their fun. I know how badly parents can mess a child up....I am a product of having two bad parents. I know that one little mistake can affect everything. And I also know that by killing myself, I would probably just cause them even more psychological damage than them just remembering having a sick mom.
But at the same time, I think about how I am feeling now. The not being able to eat anything without vomiting it up. The constant fatigue, how deep of a depression I am in...I feel totally hopeless and like I don't want to live another 60+ years like this. When does the suffering end? My childhood sucked, my teen years sucked and now my 20s are sucking since I'm being snowballed with health problems and hospitalizations and surgeries. I just wanna know when does it all end? I wanna know how I let myself get this bad? I constantly feel empty even though I shouldn't. I have a family that I love, a husband that loves me more than anything in the world. Most men would've been long gone by now, but he has stuck by my side through everything. He is on Prozac though, because of me. And the Prozac has made him become more detached and void of emotion. I'm on Wellbutrin. Is this going to happen to me? Part of me wants to stop taking it. I don't want to become a zombie like other medications have made me in the past. I don't want to gain a bunch of weight like antidepressants are known to do. I just want to be better. I want to be me again. I mean I never was the smartest kid, or the prettiest, definitely not the tallest, I never had anything that I was great at or anything that made me stand out from anybody else and I didn't have a lot of friends. But I was content with myself. I'm not happy with who I am anymore. I don't even know who I am anymore and I want a different life, a different body.
Sorry this post was so emo...I'm just not in a good place. Hopefully my next post will be a happier one but don't count on it.
The doctor says its going to take about 4-6 weeks for the medicine to take effect and its only been a week so far. Nothing has really happened with the therapy yet being as I've only had gone twice and both times were alot of paperwork and worksheets to figure out exactly how depressed I am, which they think I'm severely depressed, especially since I have been having thoughts about ending my life again. I have had recurring thoughts of this since I was about 16 or so. I never had any real plan to do it, but just always that feeling that everybody would be better off.
I have been feeling like a terrible mother because I'm always sick. Anytime I eat, it comes right back up. The doctors can't figure out why. Part of it may be my fault. I had an eating disorder before all of this, an untreated eating disorder. I basically starved myself and now that I'm trying to eat, maybe my body is like "Food? This is bad, I don't want this! Get rid of it!" Who knows. I mean, it's very possible it's the dysautonomia causing it, but I've lost about 15 pounds this summer because of it. But anytime we go somewhere - to a park, a birthday party, to visit somebody - everything gets cut short and we leave early because I end up getting sick. Let me tell you, throwing up in a port-a-potty is definitely no picnic. But, I've done it more times than I can count this summer. I feel like I am ruining my kids childhood and I don't want them to look back and only remember that they had a sick mom that ruined all of their fun. I know how badly parents can mess a child up....I am a product of having two bad parents. I know that one little mistake can affect everything. And I also know that by killing myself, I would probably just cause them even more psychological damage than them just remembering having a sick mom.
But at the same time, I think about how I am feeling now. The not being able to eat anything without vomiting it up. The constant fatigue, how deep of a depression I am in...I feel totally hopeless and like I don't want to live another 60+ years like this. When does the suffering end? My childhood sucked, my teen years sucked and now my 20s are sucking since I'm being snowballed with health problems and hospitalizations and surgeries. I just wanna know when does it all end? I wanna know how I let myself get this bad? I constantly feel empty even though I shouldn't. I have a family that I love, a husband that loves me more than anything in the world. Most men would've been long gone by now, but he has stuck by my side through everything. He is on Prozac though, because of me. And the Prozac has made him become more detached and void of emotion. I'm on Wellbutrin. Is this going to happen to me? Part of me wants to stop taking it. I don't want to become a zombie like other medications have made me in the past. I don't want to gain a bunch of weight like antidepressants are known to do. I just want to be better. I want to be me again. I mean I never was the smartest kid, or the prettiest, definitely not the tallest, I never had anything that I was great at or anything that made me stand out from anybody else and I didn't have a lot of friends. But I was content with myself. I'm not happy with who I am anymore. I don't even know who I am anymore and I want a different life, a different body.
Sorry this post was so emo...I'm just not in a good place. Hopefully my next post will be a happier one but don't count on it.
Tuesday, July 30, 2013
Blah
The title of this post confirms my current mood which is blah. My appointment came and gone with my motility doctor. He believes I have a mitochrondrial disease, but isn't ordering any tests to confirm because there are no cure for those types of diseases. His main goal is relief of symptoms. He put on Mestinon to see if it helps with motility in the small bowel. My gastroparesis isn't being treated at this time because every medicine available will make my tumor med useless. Every med will increase my prolactin levels which my body is already making too much of thanks to my prolactinoma. On top of the Mestinon, he prescribed a pill form of marijuana to help with my nausea and give me an appetite. I haven't gotten this pill filled and really have no desire to even try it. I would rather deal with the vomiting then go against my morals. My mom, dad and brother are all potheads and I promised myself I wouldn't ever try it. I know the pill isn't the same thing and its for medicinal purposes, but no thanks. This doc checked my micronutrients and they are all normal, but the low side of normal. He wants to keep an eye on that and is thinking I may require a feeding tube at one point. If it ever gets to that point, then I'll try that other pill. But only if this doctor thinks I need a feeding tube.
Now, my endocrinologist thinks I have dysautonomia. That is an autoimmune disease attacking the autonomic nervous system. I have more of the symptoms then I do of the mitochondrial disease. There is a blood test I can take to confirm diagnosis. I got like 12 prescriptions for blood work that I need done 2 weeks before my next appointment in October. He said there is no rush since I am already on one of the main medicines for dysautonomia which would be the mestinon.
I really have had enough with doctors. One doctor thinks its one thing, another doc says something else. But one thing they both have agreement on is I'm not getting better. My digestive system is fucked. I wish I knew somebody who is going through the same things as me. Another thing happening that I could do without is my orthostatic hypotension....I either faint or come close to fainting whenever I go to stand up, no matter how slowly I stand. That is also a sign of the dysautonomia.
I can't believe summer is almost over. At least my girls had an eventful summer and I got my own car finally. A Mazda5, which is a microvan. I absolutely love it and love not being stuck at home when my husband is working.
So, there is my update. Uneventful, and still alot of unanswered questions. So, with that my closing statement is this: blaaaaahhhh.
Now, my endocrinologist thinks I have dysautonomia. That is an autoimmune disease attacking the autonomic nervous system. I have more of the symptoms then I do of the mitochondrial disease. There is a blood test I can take to confirm diagnosis. I got like 12 prescriptions for blood work that I need done 2 weeks before my next appointment in October. He said there is no rush since I am already on one of the main medicines for dysautonomia which would be the mestinon.
I really have had enough with doctors. One doctor thinks its one thing, another doc says something else. But one thing they both have agreement on is I'm not getting better. My digestive system is fucked. I wish I knew somebody who is going through the same things as me. Another thing happening that I could do without is my orthostatic hypotension....I either faint or come close to fainting whenever I go to stand up, no matter how slowly I stand. That is also a sign of the dysautonomia.
I can't believe summer is almost over. At least my girls had an eventful summer and I got my own car finally. A Mazda5, which is a microvan. I absolutely love it and love not being stuck at home when my husband is working.
So, there is my update. Uneventful, and still alot of unanswered questions. So, with that my closing statement is this: blaaaaahhhh.
Friday, June 28, 2013
How Time Flies...
I really can't believe it's been over 2 months since my last post. I have been keeping busy with my girls, trying to soak up every minute of summer as I can. I am really enjoying having both girls home with me all day, even though I'm surely missing when Gianna was in school all day and I had all of that special time with Jenna. It's hard to believe in just a litle under 2 months, my oldest will be a 1st grader and my baby will be completing her last year of pre-school. I would love to have a 3rd child, but with all of my health problems, that may not be an option for me. I was truly blessed by the two that I do have and am grateful that I had them when I did because thanks to the prolactinoma I may be infertile.
My health status has remained unchanged. No good news to report. I did have 2 more hospitalizations after my last post, for the same reasons. I also had my gastric empting study done and it was confirmed I do have gastroparesis. We all knew I did, but to get treatment I needed a test to make it conclusive. I got to eat radioactive scrambled eggs and was x-rayed every 15 minutes for 4 hours to see how slow my digestion was. I hadn't eaten for 2 days prior to the test (when I'm admitted, I'm never allowed food or water) so the eggs tasted wonderful to me. Four long hours later, I still had 70% of the eggs in my stomach, so only 30% had passed. I'm being referred to the gastroparesis clinic at AGH but am just gonna wait to see the motility specialist. My only option to treating the GP is a gastric pacemaker since I'm allergic to the med they prescribe for it. And since I have the dysmotility, a gastric pacemaker may not even work for me, either.
This motility specialist I'm gonna see (the one I mentioned in the last post) believes the GP, the small bowel dysmotility and the pain I get is all secondary to something else. He had spent 40 minutes with me in my hospital room and said he thinks he can help me. I have to wait til July 22nd to see him though as he is one of 2 of these doctors in the Pittsburgh area. You even need to have a referral to even get an appointment with him. When I told them I didn't have a referral and it was him that told me i needed to come in, they had to confirm that with him first. I've been doing alot of praying that this guy can fix me, or at least put a name to what I'm experiencing.
The GP makes life kinda sucky. Veggies and fruit are the hardest to digest so as much as I love them I avoid them at all costs because I can't take the pain and nausea that follows after. I try to stick to a liquid diet as much as possible, and even blend most of my meals up at home, though I really don't eat much. I eat once a day usually and it's almost always just a meal replacement shake my husband found at GNC.
As far as my ileostomy goes, everything is fine in that department. I'm battling a nasty rash from being outside in the heat and sweating under the wafer. They tried to do a dressing with fake skin covering it to help absorb some moisture and using an antifungal powder, but that only made things worse as I was allergic to the DuoDerm skin. So I still have the fungal rash, plus a nasty rash due from an allergic reaction. My skin feels like its on fire and is super itchy. I take benadryl at night to help me sleep because the itching and burning wakes me up.
I can't wait to go back to the quality of life I had before. Granted, before the surgery I was always sick from large amounts of stool poisoning my body. And even though I'm not being poisoned anymore, I still feel the same. I wish there was a way to know before they took my colon out that the other digetive organs didn't work that well and I would continue to have problems because then I could've saved myself from having Ellie. Not that I regret getting an ileostomy because, truthfuly it doesnt bother me. But, I miss farting soooo much lol. Not the act of it, but that relief you feel afterwards. Its such a stupid thing to miss, but I do miss it. Plus, its always a laugh when you gross your husband out (i must be a 10 year old at heart lol)
I'm feeling pretty exhausted so I am gonna go lay down. I will be sure to update after my appointment with this new doctor. My goal is to keep my bum out of the hosopital untul then!
My health status has remained unchanged. No good news to report. I did have 2 more hospitalizations after my last post, for the same reasons. I also had my gastric empting study done and it was confirmed I do have gastroparesis. We all knew I did, but to get treatment I needed a test to make it conclusive. I got to eat radioactive scrambled eggs and was x-rayed every 15 minutes for 4 hours to see how slow my digestion was. I hadn't eaten for 2 days prior to the test (when I'm admitted, I'm never allowed food or water) so the eggs tasted wonderful to me. Four long hours later, I still had 70% of the eggs in my stomach, so only 30% had passed. I'm being referred to the gastroparesis clinic at AGH but am just gonna wait to see the motility specialist. My only option to treating the GP is a gastric pacemaker since I'm allergic to the med they prescribe for it. And since I have the dysmotility, a gastric pacemaker may not even work for me, either.
This motility specialist I'm gonna see (the one I mentioned in the last post) believes the GP, the small bowel dysmotility and the pain I get is all secondary to something else. He had spent 40 minutes with me in my hospital room and said he thinks he can help me. I have to wait til July 22nd to see him though as he is one of 2 of these doctors in the Pittsburgh area. You even need to have a referral to even get an appointment with him. When I told them I didn't have a referral and it was him that told me i needed to come in, they had to confirm that with him first. I've been doing alot of praying that this guy can fix me, or at least put a name to what I'm experiencing.
The GP makes life kinda sucky. Veggies and fruit are the hardest to digest so as much as I love them I avoid them at all costs because I can't take the pain and nausea that follows after. I try to stick to a liquid diet as much as possible, and even blend most of my meals up at home, though I really don't eat much. I eat once a day usually and it's almost always just a meal replacement shake my husband found at GNC.
As far as my ileostomy goes, everything is fine in that department. I'm battling a nasty rash from being outside in the heat and sweating under the wafer. They tried to do a dressing with fake skin covering it to help absorb some moisture and using an antifungal powder, but that only made things worse as I was allergic to the DuoDerm skin. So I still have the fungal rash, plus a nasty rash due from an allergic reaction. My skin feels like its on fire and is super itchy. I take benadryl at night to help me sleep because the itching and burning wakes me up.
I can't wait to go back to the quality of life I had before. Granted, before the surgery I was always sick from large amounts of stool poisoning my body. And even though I'm not being poisoned anymore, I still feel the same. I wish there was a way to know before they took my colon out that the other digetive organs didn't work that well and I would continue to have problems because then I could've saved myself from having Ellie. Not that I regret getting an ileostomy because, truthfuly it doesnt bother me. But, I miss farting soooo much lol. Not the act of it, but that relief you feel afterwards. Its such a stupid thing to miss, but I do miss it. Plus, its always a laugh when you gross your husband out (i must be a 10 year old at heart lol)
I'm feeling pretty exhausted so I am gonna go lay down. I will be sure to update after my appointment with this new doctor. My goal is to keep my bum out of the hosopital untul then!
Friday, May 24, 2013
Can't sleep
It's almost 3am and I'm laying in my hospital bed wide awake after being awoken for blood work, vital signs and pain meds. I can't believe I'm back in the hospital again...it's only been 2 months since the last time I was here.
I ended up in the ER of my local hospital yesterday morning after having a sudden onset of horrible abdominal pain that brought me to my knees and I was vomiting and nauseated. So, my husband took me to the ER. I was taken right back and it didn't take long for me to have a ct scan that confirmed a small bowel blockage and for them to tell me I was being admitted into Presby hospital in Pittsburgh (I still don't understand why they tell you Presby when they actually admit you into Montifiore). So the doctors came in this morning and tell me that they didn't see the blockage on the films of my ct scan, but the intestine was dilated as if I had a blockage. Weird. They called in a consult of pittsburgh's top motility doctor, and hopefully I will see him tomorrow. Since this is the 2nd time in such a short period of time this has happened, the one doctor here thinks I have a CIP, which stands for Chronic Intestinal Pseudo-obstruction disease. It's where your small bowel thinks there is a blockage and gives you all the symptoms of having one without there actually being an obstruction. It's a malfunction of the nerves and muscles in the intestine. Not sure if its definitely what is going on with me, but given my past history, I wouldn't be shocked. But if any doctor will figure it out, it would be a motility expert. Maybe I will get an answer as to why my digestive system is so slow, too. The kicker here is I actually have a test scheduled for tomorrow...or today since its pass midnight to get tested for gastroparesis which is basically paralyzation or slowed emptying of the stomach. Can't wait to get an accurate diagnosis of what is happening with my body so we can manage the symptoms and I can move on.
My depression that I wrote about previously has dissipated. I reported the change of mental state to the endocrinologist and he switched medicine which I seem to be doing great on. I was starting to feel like myself again, but ended up back in here. I ended up skipping a dose yesterday because the hospital didn't give me my dose, so I carried a horrible headache all day.
I had a dream just before I was woke up that me and my husband and our girls were at Erie beach. My husband and I were just sitting on the beach watching our girls chase each other as they were blowing bubbles. And I was able to feel the contentment and happiness in the dream. It's kind of funny how much can change in a years time, yet stay the same. I have gone through so much since Novemeber, with my surgery and multiple hospital stays. Finding out I have a tumor and multiple ovarian cysts. And my husband has been by my side every step of the way. All of the stress and worry that I've caused him has given him an ulcer and he gets pretty sick with it. When he feels too stressed or eats the wrong thing, he will throw up. I feel horrible that I'm the reason this happened to him. But as others have pointed out, he loves me and is difficult to just stand by and watch when the one person you love the most in the world is going through so much and there isn't a single thing you could do to stop it.
The dream made me want to return to Erie this summer. My husband bought me a pair of swim bottoms specifically made to hold and hide the appearance of the ostomy, along with a wrap and a few pairs of ostomy underwear. The stuff actually came in today but he is on afternoon shift and hasn't been able to come up and see me yet. He had all plans on coming up today to see me, but he got forced at work and is probably of his way home now. Our anniversary is on Sunday, so I hope i am out of here in time for that. If not, he is off and he said he would spend the whole day with me here. Hopefully I will be allowed food by then, or at least I hope I will have an appetite by then. I haven't had anything to eat or drink since yesterday morning and even then, I didn't have much. I was able to drink a half cup of coffee before the symptoms appeared then I was too sick to finish.
Gonna sign off for now and try to get a little more sleep. I know how early those doctors come in and hopefully I will get some tests ordered so I'm not just laying in bed all day like I did yesterday.
I ended up in the ER of my local hospital yesterday morning after having a sudden onset of horrible abdominal pain that brought me to my knees and I was vomiting and nauseated. So, my husband took me to the ER. I was taken right back and it didn't take long for me to have a ct scan that confirmed a small bowel blockage and for them to tell me I was being admitted into Presby hospital in Pittsburgh (I still don't understand why they tell you Presby when they actually admit you into Montifiore). So the doctors came in this morning and tell me that they didn't see the blockage on the films of my ct scan, but the intestine was dilated as if I had a blockage. Weird. They called in a consult of pittsburgh's top motility doctor, and hopefully I will see him tomorrow. Since this is the 2nd time in such a short period of time this has happened, the one doctor here thinks I have a CIP, which stands for Chronic Intestinal Pseudo-obstruction disease. It's where your small bowel thinks there is a blockage and gives you all the symptoms of having one without there actually being an obstruction. It's a malfunction of the nerves and muscles in the intestine. Not sure if its definitely what is going on with me, but given my past history, I wouldn't be shocked. But if any doctor will figure it out, it would be a motility expert. Maybe I will get an answer as to why my digestive system is so slow, too. The kicker here is I actually have a test scheduled for tomorrow...or today since its pass midnight to get tested for gastroparesis which is basically paralyzation or slowed emptying of the stomach. Can't wait to get an accurate diagnosis of what is happening with my body so we can manage the symptoms and I can move on.
My depression that I wrote about previously has dissipated. I reported the change of mental state to the endocrinologist and he switched medicine which I seem to be doing great on. I was starting to feel like myself again, but ended up back in here. I ended up skipping a dose yesterday because the hospital didn't give me my dose, so I carried a horrible headache all day.
I had a dream just before I was woke up that me and my husband and our girls were at Erie beach. My husband and I were just sitting on the beach watching our girls chase each other as they were blowing bubbles. And I was able to feel the contentment and happiness in the dream. It's kind of funny how much can change in a years time, yet stay the same. I have gone through so much since Novemeber, with my surgery and multiple hospital stays. Finding out I have a tumor and multiple ovarian cysts. And my husband has been by my side every step of the way. All of the stress and worry that I've caused him has given him an ulcer and he gets pretty sick with it. When he feels too stressed or eats the wrong thing, he will throw up. I feel horrible that I'm the reason this happened to him. But as others have pointed out, he loves me and is difficult to just stand by and watch when the one person you love the most in the world is going through so much and there isn't a single thing you could do to stop it.
The dream made me want to return to Erie this summer. My husband bought me a pair of swim bottoms specifically made to hold and hide the appearance of the ostomy, along with a wrap and a few pairs of ostomy underwear. The stuff actually came in today but he is on afternoon shift and hasn't been able to come up and see me yet. He had all plans on coming up today to see me, but he got forced at work and is probably of his way home now. Our anniversary is on Sunday, so I hope i am out of here in time for that. If not, he is off and he said he would spend the whole day with me here. Hopefully I will be allowed food by then, or at least I hope I will have an appetite by then. I haven't had anything to eat or drink since yesterday morning and even then, I didn't have much. I was able to drink a half cup of coffee before the symptoms appeared then I was too sick to finish.
Gonna sign off for now and try to get a little more sleep. I know how early those doctors come in and hopefully I will get some tests ordered so I'm not just laying in bed all day like I did yesterday.
Sunday, April 28, 2013
Hopeless
The title of this entry pretty much says it all. It's exactly how I feel right now, and how I've been feeling for awhile now. Just completely hopeless.
I found myself in a depression. A deep depression that I can't seem to will myself out of. I am completely void of any energy, any emotion other than bitterness and apathy. I feel like a hollowed out version of myself. I never have any energy to do the smallest task, something as simple as putting away laundry or making chocolate milk for my little girl. I don't know if this lethargy is from me being depressed, from the tumor and my hormones being all out of sorts, from the new medicine I am on, or a mixture of everything.
I haven't talked to anybody about how I've been feeling. I can tell my husband knows something is up because I'm either crying or in a bad mood. He is probably waiting for me to come to him to talk, but I won't because I'm stubborn and I've given him enough to worry about.
I found out that I have multiple cysts on my ovaries, the biggest one being about 4 inches big. They don't like to do surgery unless they start to twist the ovary and they are confident they will dissolve on their own. The tumor is what caused them so they think the cabergoline will help to dissolve those. I hope so. I am relieved I got to avoid another surgery for now.
As far as this depression goes, I don't know what to do about it. I can't talk to my family doctor about it....I'm in the process of finding a new doctor. Dave was about ready to punch my doctor in the face. I haven't been eating. I'm pretty much walking a thin line of having an eating disorder. I rarely get close to about 700 calories a day. But, even eating so little, I still gain weight. I know it's my hormones being all out and hormones have everything to do with it. But according to my doctor, it doesn't. He told me flat out that I am gaining because I am eating too much. Dave told him I barely eat as it is, which my doc replied "she's eating too much for her size. Try 500 calories a day and you may maintain." Dave retorted with "you don't tell a woman who almost has an eating disorder to eat even less....are you trying to send her back to the hospital?" He was very upset. Meanwhile, all this is being said and I'm just sitting there crying, feeling like a cow even though I'm not even overweight according the BMI charts.
I'm just a mess, physically, mentally, emotionally. All kinds of fucked up and I just want to go back to normal. I forget what normal feels likes. I just want my energy to come back. I had this big surgery to feel better and not sick and only to get diagnosed with more shit and I even feel guilty for feeling down about this because there are people out there right now fighting for their lives, struggling wi cancer. Little kids dying of cancer, little kids losing parents to car accidents, murders or sickness. And here I am, bitching and letting some benign tumor and a couple pound weight gain push me over my edge. I don't even feel worthy to live when I put it all in perspective.
I'm really glad nobody reads this thing. I'm half tempted to stop posting anyways....I only do because in some way, writing is therapeutic to me and I need something therapeutic in my life instead of going on long walks or taking long baths just so I can cry and let it out.
I found myself in a depression. A deep depression that I can't seem to will myself out of. I am completely void of any energy, any emotion other than bitterness and apathy. I feel like a hollowed out version of myself. I never have any energy to do the smallest task, something as simple as putting away laundry or making chocolate milk for my little girl. I don't know if this lethargy is from me being depressed, from the tumor and my hormones being all out of sorts, from the new medicine I am on, or a mixture of everything.
I haven't talked to anybody about how I've been feeling. I can tell my husband knows something is up because I'm either crying or in a bad mood. He is probably waiting for me to come to him to talk, but I won't because I'm stubborn and I've given him enough to worry about.
I found out that I have multiple cysts on my ovaries, the biggest one being about 4 inches big. They don't like to do surgery unless they start to twist the ovary and they are confident they will dissolve on their own. The tumor is what caused them so they think the cabergoline will help to dissolve those. I hope so. I am relieved I got to avoid another surgery for now.
As far as this depression goes, I don't know what to do about it. I can't talk to my family doctor about it....I'm in the process of finding a new doctor. Dave was about ready to punch my doctor in the face. I haven't been eating. I'm pretty much walking a thin line of having an eating disorder. I rarely get close to about 700 calories a day. But, even eating so little, I still gain weight. I know it's my hormones being all out and hormones have everything to do with it. But according to my doctor, it doesn't. He told me flat out that I am gaining because I am eating too much. Dave told him I barely eat as it is, which my doc replied "she's eating too much for her size. Try 500 calories a day and you may maintain." Dave retorted with "you don't tell a woman who almost has an eating disorder to eat even less....are you trying to send her back to the hospital?" He was very upset. Meanwhile, all this is being said and I'm just sitting there crying, feeling like a cow even though I'm not even overweight according the BMI charts.
I'm just a mess, physically, mentally, emotionally. All kinds of fucked up and I just want to go back to normal. I forget what normal feels likes. I just want my energy to come back. I had this big surgery to feel better and not sick and only to get diagnosed with more shit and I even feel guilty for feeling down about this because there are people out there right now fighting for their lives, struggling wi cancer. Little kids dying of cancer, little kids losing parents to car accidents, murders or sickness. And here I am, bitching and letting some benign tumor and a couple pound weight gain push me over my edge. I don't even feel worthy to live when I put it all in perspective.
I'm really glad nobody reads this thing. I'm half tempted to stop posting anyways....I only do because in some way, writing is therapeutic to me and I need something therapeutic in my life instead of going on long walks or taking long baths just so I can cry and let it out.
Friday, April 19, 2013
Domino
I am gonna give myself a new nickname...the Human Domino. That's how I have been feeling, though I'm sure that nickname won't stick lol.
My MRI came back positive for a tumor. I have an appointment with an endocrinologist today to find out what comes next. I'm gonna assume they will want a biopsy to see if its cancerous or benign. I'm scared shitless that I have a brain tumor, but relieved I have an answer for some of my symptoms. This is why I get headaches and could explain my unrelenting forgetfulness and memory loss, not to mention I have been easily irritated and can get hostile, which if you know me, I don't really have a "bitch bone" in my body. I can forget things almost instantly and my mother-in-law had a theory that its because I'm just not paying enough attention. Pfft. I now legit have an excuse..."sorry I forgot...I have a brain tumor" lol. At least I am able to laugh about it. I don't know how to tell my girls, maybe I won't have to. Jenna is constantly expressing her worry about me having more surgery and going back into the hospital, which may be happening for the ovarian cysts. And depending on what they tell me today, I may have to have the tumor removed, but after doing research they try meds to shrink it before resorting to surgery.
My husbands ultrasound came back negative for gallstones, but now they want to do a gallbladder function test. He is putting it off...he believes its just an ulcer from his worrying about me. He is still in shock that I have a tumor. Seriously...what else can go wrong with me? Ovarian cysts and pituitary tumor. I'll take that with a side of cancer please.
Anyway, a more upbeat update on things not even relating to health issues. My oldest daughter, Gianna, went and got her ears pierced! She chickened out the first time and we left the mall, only to return back after we stopped for dinner and she went through with it. My big girl didn't even cry! Now, all she talks about is getting her ears pierced and trying to talk more of her friends into getting it done. She told me this morning as I was cleaning her ears, "I think I am ready for more holes in my ears." I told her no more piercing a until she is at least 13 lol. I wonder when my Jennabug will be ready for her ear pierced?
Ugh I gotta start getting ready for my appointment. I will admit, I'm kinda scared. I called yesterday to make the appointment and the secretary told me he was booked until July, but was gonna ask him if I was able to hold off until then or if she should squeeze me in, "I wanna see her tomorrow." Was his response. All of my lab work and scans were sent over there. I remember how I was saying that I was wondering if all of these problems could somehow be symptoms of 1 big medical mystery. I as doing research, and it could be lupus. Lupus will attack your organs. My thyroid levels are almost nonexistent being a whopping 0.3. The colon went, my stomach and small intestine are super slow, crap going on reproductively, the tumor. So my digestive, endocrine and reproductive systems are taking a hit....and lupus is the only thing I was able to find that will attack those. I may bring it up to the doctor today and pray that he doesn't think I'm crazy. All it requires is a blood test...doesn't hurt to bring it up though, right?
We will see. I'll be updating this at some point to write about what they are gonna do for this stupid tumor and these cysts in the ovaries. Until then....
My MRI came back positive for a tumor. I have an appointment with an endocrinologist today to find out what comes next. I'm gonna assume they will want a biopsy to see if its cancerous or benign. I'm scared shitless that I have a brain tumor, but relieved I have an answer for some of my symptoms. This is why I get headaches and could explain my unrelenting forgetfulness and memory loss, not to mention I have been easily irritated and can get hostile, which if you know me, I don't really have a "bitch bone" in my body. I can forget things almost instantly and my mother-in-law had a theory that its because I'm just not paying enough attention. Pfft. I now legit have an excuse..."sorry I forgot...I have a brain tumor" lol. At least I am able to laugh about it. I don't know how to tell my girls, maybe I won't have to. Jenna is constantly expressing her worry about me having more surgery and going back into the hospital, which may be happening for the ovarian cysts. And depending on what they tell me today, I may have to have the tumor removed, but after doing research they try meds to shrink it before resorting to surgery.
My husbands ultrasound came back negative for gallstones, but now they want to do a gallbladder function test. He is putting it off...he believes its just an ulcer from his worrying about me. He is still in shock that I have a tumor. Seriously...what else can go wrong with me? Ovarian cysts and pituitary tumor. I'll take that with a side of cancer please.
Anyway, a more upbeat update on things not even relating to health issues. My oldest daughter, Gianna, went and got her ears pierced! She chickened out the first time and we left the mall, only to return back after we stopped for dinner and she went through with it. My big girl didn't even cry! Now, all she talks about is getting her ears pierced and trying to talk more of her friends into getting it done. She told me this morning as I was cleaning her ears, "I think I am ready for more holes in my ears." I told her no more piercing a until she is at least 13 lol. I wonder when my Jennabug will be ready for her ear pierced?
Ugh I gotta start getting ready for my appointment. I will admit, I'm kinda scared. I called yesterday to make the appointment and the secretary told me he was booked until July, but was gonna ask him if I was able to hold off until then or if she should squeeze me in, "I wanna see her tomorrow." Was his response. All of my lab work and scans were sent over there. I remember how I was saying that I was wondering if all of these problems could somehow be symptoms of 1 big medical mystery. I as doing research, and it could be lupus. Lupus will attack your organs. My thyroid levels are almost nonexistent being a whopping 0.3. The colon went, my stomach and small intestine are super slow, crap going on reproductively, the tumor. So my digestive, endocrine and reproductive systems are taking a hit....and lupus is the only thing I was able to find that will attack those. I may bring it up to the doctor today and pray that he doesn't think I'm crazy. All it requires is a blood test...doesn't hurt to bring it up though, right?
We will see. I'll be updating this at some point to write about what they are gonna do for this stupid tumor and these cysts in the ovaries. Until then....
Friday, April 12, 2013
Trying to remain hopeful
I realize its been awhile since my last post. I have been extremely busy with mom stuff and more health issues. The medicine they have me on isn't working very well, so I have an appointment coming up to find out more options and probably more tests.
I had an ultrasound at the beginning of the week that confirmed I have ovarian cysts. I find out the 26th if surgery will be needed to remove them. I have an MRI that needs scheduled because my prolactin levels were pretty high and that typically indicates a tumor on the pituitary gland. Yep, I got 1 problem fixed and a bunch more are gonna surface. I'm left wondering if all of these problems are somehow linked to one giant issue?
Also, my hubby is having issues of his own now. He's been nauseated for weeks and will often throw up if he eats his regular portion sizes (which is usually like 4 servings of something in one sitting lol). He either has given himself an ulcer from all the stress he's been under or has a gallbladder issue. He went and got an ultrasound of the gallbladder today, checking for stones. I hope everything turns out fine with him and its just something simple like an ulcer. He used up all of call off days for my surgery and can't take off for a surgery of his own.
Even though all of this shit is going on, I am hopefully that things will turn out alright. Maybe it's silly to believe in symbolism, maybe it's not. But this morning, I opened my door to leave and standing about 1 foot in front of me was a red cardinal. My first thought was that it was hurt because as I bent down to look at it, it didn't move. I pet his little head and then picked it up. It didn't try to flap or run away from me. Jenna came out and was petting it. After about a 5 minute visit, the cardinal flew away. It wasnt hurt and was able to fly that whole time. After an Internet search, it said that cardinals have a symbolism that they can appear in dreams as a sign that in times or darkness or uncertainty that everything is going to be alright. Now, I didn't dream about it so I dont know if the meaning is the same....but kinda odd how a cardinal appeared on my porch and let me hold and pet it during such a hard time right now. So who knows? Maybe this was a sign from God that everything is going to be alright.
I sure hope so.
I had an ultrasound at the beginning of the week that confirmed I have ovarian cysts. I find out the 26th if surgery will be needed to remove them. I have an MRI that needs scheduled because my prolactin levels were pretty high and that typically indicates a tumor on the pituitary gland. Yep, I got 1 problem fixed and a bunch more are gonna surface. I'm left wondering if all of these problems are somehow linked to one giant issue?
Also, my hubby is having issues of his own now. He's been nauseated for weeks and will often throw up if he eats his regular portion sizes (which is usually like 4 servings of something in one sitting lol). He either has given himself an ulcer from all the stress he's been under or has a gallbladder issue. He went and got an ultrasound of the gallbladder today, checking for stones. I hope everything turns out fine with him and its just something simple like an ulcer. He used up all of call off days for my surgery and can't take off for a surgery of his own.
Even though all of this shit is going on, I am hopefully that things will turn out alright. Maybe it's silly to believe in symbolism, maybe it's not. But this morning, I opened my door to leave and standing about 1 foot in front of me was a red cardinal. My first thought was that it was hurt because as I bent down to look at it, it didn't move. I pet his little head and then picked it up. It didn't try to flap or run away from me. Jenna came out and was petting it. After about a 5 minute visit, the cardinal flew away. It wasnt hurt and was able to fly that whole time. After an Internet search, it said that cardinals have a symbolism that they can appear in dreams as a sign that in times or darkness or uncertainty that everything is going to be alright. Now, I didn't dream about it so I dont know if the meaning is the same....but kinda odd how a cardinal appeared on my porch and let me hold and pet it during such a hard time right now. So who knows? Maybe this was a sign from God that everything is going to be alright.
I sure hope so.
Tuesday, March 19, 2013
Back To Square One
Yesterday was exactly 3 weeks since I had my total colectomy. I am writing this entry from the comfort of my hospital room. Yep, back in the hospital. I've been here since Saturday evening.
It started on Saturday when I had increased nausea and a lot of cramping with no output from Ellie from 3-8. I called my nurse, who said go to the hospital. I called my doctor, who also said go to the hospital. I didn't want to go. My husband made me go. He called his mom, who took me since he had to be at work in the morning at 7 am. We had to drive to Pittsburgh and went through the packed ER and they took me right back...I didn't even have to sit in the ER. We thought I had a blockage. An x-ray and CT scan later, it confirmed there was no blockage and doctors were stumped why Ellie didn't want to work and why I was in so much pain and throwing up. We knew I was impacted and constipated, which should NOT happen with an ileostomy.
At 4 am early Sunday morning, I was brought to my room with an NG tube in, sucking out my stomach contents since the Zofran I was receiving was not helping me much.
I went Sunday and Monday with no real answers from my doctors and no tests being ordered. I heard different residents ideas on what they think was happening, but again, there were no tests being done to confirm or dismiss their theories. This morning, I finally saw some doctors! What they think is happening is since I had the dysmotility in my colon for as long as I have, they think it turned into a whole digestive track problem, meaning my stomach and my small intestine isn't working right, either.
My husband asked the doctors why they didn't test these things before the gutted me and stuck me with a permanent ileostomy. They replied with that the tests testing for stomach and small intestine
wouldn't have been accurate since my colon was keeping everything backed up and not moving as it is. Now that the colon is gone and Im not filled up to the rim with shit, they can start testing the other parts of the digestive track. I am going to be having a barium swallow with small bowel follow-through, checking for any kinks that may have developed in the small intestine, plus to see how fast the barium passes through the stomach and into my bag. Then they said on either Thursday or Friday, they will put me to sleep and stick a camera in through my stoma and through my small intestines, similar to a colonoscopy, but no colon and they won't be entering through my ass. The doctor said they want to do these simple tests before they start getting into the tests that diagnose motility and nerve problems.
This really figures and I've been a mess today, crying constantly. I agreed to this surgery because I thought it was going to end my suffering. I put my body through such trauma and changed my body forever by getting an ileostomy. Now, I'm back to having the same issues as before with no organs that don't work...just as my colon was pretty much paralyzed. I'm back to being separated from my children, which is absolutely killing me. Dave, my husband, told me that my youngest, Jenna hasn't been herself. She's been withdrawing herself, been very quiet and just wants to be alone and is mad all of the time. She was here this morning and was kinda mean towards me. I think she is mad at me for not being home and probably resents me in some way because she doesn't understand what is happening. All she knows is mommy is gone again and probably thinks its my choice to be here, when I want nothing more than to just be home. My oldest absolutely understands what is happening and Dave tells me she's been crying every night because she misses me and is worried sick over me. She's afraid I'm going to have another surgery and afraid I'm going to die. We were video chatting the other night and I sang them their lullabies and she just started sobbing, going on about how much she misses me and wants to hug me and she can't hug a screen. I started crying because she was crying and I see how hard this is on her. I was gone for almost a week, finally home and wasnt even home for 3 weeks before Im back in the hospital for another week. It's making me depressed being away from them for so long, so my mother in law is bringing both of them up to see me and I finally have my ipad so we can FaceTime instead of relying on crappy Google Talk on my android phone.
I am too young to have all of these problems. I just have to stay positive and remind myself that I could be worse off. I could be dying or have cancer, but I don't. I am simply facing motility issues and am very much alive. Though, I would be lying if I didn't wish a few times that I would just die already because I'm tired of living like this....living with one problem after another and I know I shouldn't think that way...but I can't help it. I just need to try harder to keep a positive outlook on this and hope they have medication that I could take to help speed up the digestive process so I won't be constipated and so I I don't feel sick anymore. If not, they were telling me I may be a candidate for a small bowel transplant...but I don't want to think about that until/if we even cross that bridge.
That's all for now. I'm gonna try to get some rest since they like to wake me up
all hours of the night to poke me with needles and check my blood pressure. I'm really looking forward to going home!
It started on Saturday when I had increased nausea and a lot of cramping with no output from Ellie from 3-8. I called my nurse, who said go to the hospital. I called my doctor, who also said go to the hospital. I didn't want to go. My husband made me go. He called his mom, who took me since he had to be at work in the morning at 7 am. We had to drive to Pittsburgh and went through the packed ER and they took me right back...I didn't even have to sit in the ER. We thought I had a blockage. An x-ray and CT scan later, it confirmed there was no blockage and doctors were stumped why Ellie didn't want to work and why I was in so much pain and throwing up. We knew I was impacted and constipated, which should NOT happen with an ileostomy.
At 4 am early Sunday morning, I was brought to my room with an NG tube in, sucking out my stomach contents since the Zofran I was receiving was not helping me much.
I went Sunday and Monday with no real answers from my doctors and no tests being ordered. I heard different residents ideas on what they think was happening, but again, there were no tests being done to confirm or dismiss their theories. This morning, I finally saw some doctors! What they think is happening is since I had the dysmotility in my colon for as long as I have, they think it turned into a whole digestive track problem, meaning my stomach and my small intestine isn't working right, either.
My husband asked the doctors why they didn't test these things before the gutted me and stuck me with a permanent ileostomy. They replied with that the tests testing for stomach and small intestine
wouldn't have been accurate since my colon was keeping everything backed up and not moving as it is. Now that the colon is gone and Im not filled up to the rim with shit, they can start testing the other parts of the digestive track. I am going to be having a barium swallow with small bowel follow-through, checking for any kinks that may have developed in the small intestine, plus to see how fast the barium passes through the stomach and into my bag. Then they said on either Thursday or Friday, they will put me to sleep and stick a camera in through my stoma and through my small intestines, similar to a colonoscopy, but no colon and they won't be entering through my ass. The doctor said they want to do these simple tests before they start getting into the tests that diagnose motility and nerve problems.
This really figures and I've been a mess today, crying constantly. I agreed to this surgery because I thought it was going to end my suffering. I put my body through such trauma and changed my body forever by getting an ileostomy. Now, I'm back to having the same issues as before with no organs that don't work...just as my colon was pretty much paralyzed. I'm back to being separated from my children, which is absolutely killing me. Dave, my husband, told me that my youngest, Jenna hasn't been herself. She's been withdrawing herself, been very quiet and just wants to be alone and is mad all of the time. She was here this morning and was kinda mean towards me. I think she is mad at me for not being home and probably resents me in some way because she doesn't understand what is happening. All she knows is mommy is gone again and probably thinks its my choice to be here, when I want nothing more than to just be home. My oldest absolutely understands what is happening and Dave tells me she's been crying every night because she misses me and is worried sick over me. She's afraid I'm going to have another surgery and afraid I'm going to die. We were video chatting the other night and I sang them their lullabies and she just started sobbing, going on about how much she misses me and wants to hug me and she can't hug a screen. I started crying because she was crying and I see how hard this is on her. I was gone for almost a week, finally home and wasnt even home for 3 weeks before Im back in the hospital for another week. It's making me depressed being away from them for so long, so my mother in law is bringing both of them up to see me and I finally have my ipad so we can FaceTime instead of relying on crappy Google Talk on my android phone.
I am too young to have all of these problems. I just have to stay positive and remind myself that I could be worse off. I could be dying or have cancer, but I don't. I am simply facing motility issues and am very much alive. Though, I would be lying if I didn't wish a few times that I would just die already because I'm tired of living like this....living with one problem after another and I know I shouldn't think that way...but I can't help it. I just need to try harder to keep a positive outlook on this and hope they have medication that I could take to help speed up the digestive process so I won't be constipated and so I I don't feel sick anymore. If not, they were telling me I may be a candidate for a small bowel transplant...but I don't want to think about that until/if we even cross that bridge.
That's all for now. I'm gonna try to get some rest since they like to wake me up
all hours of the night to poke me with needles and check my blood pressure. I'm really looking forward to going home!
Saturday, March 16, 2013
Almost Back To Normal
Just a quick update to what is happening with Ellie and I. I do have an abscess and fluid building up, but am on 2 pretty strong antibiotics to try and clear it up (Flagyl/Cipro). Whatever appetite I had before starting those meds is now completely gone. I'm barely eating, but am drinking so I don't get dehydrated. I don't know how well these pills are working, though because I'm still having that pain. So, maybe that's not even related to the abscess...who in the hell knows. Also, I'm told that my liver is probably fine and had something to do with timing of the contrast upon taking the CT picture. The doctor I saw last Monday was not my surgeon, but rather the heartless woman that screamed at me 2 days after my surgery that I needed to get up and walk around and being in pain wasn't an excuse. She walked into the room and was like "I remember you from the hospital!" and I'm thinking in my head "And I want to punch your face in..." I can't wait to actually see my surgeon and go for my repeat CT on April 2nd.
For the most part though, I'm feeling back to myself. I'm moving around more and doing more with the kids. If I get up and down too many times, I start getting sore and it still hurts a bit to bend. Once I know longer feel nauseated and my jeans stop irritating my incision, I will be happy. I truly hate wearing sweat pants all of the time...I miss my cute jeans. All is fine as long as I'm standing...but as soon as I sit down, the top of the waistline just starting cutting into where I'm glued. Owwww....
I truly can't wait for summer to get here. I should be not in any more pain and I should be mostly healed, at least on the outside. I hope I don't get sick of my pouch...for now I love the thing because it's working and for the first time in my life, I can say I'm shitting every day, multiple times lol.
For the most part though, I'm feeling back to myself. I'm moving around more and doing more with the kids. If I get up and down too many times, I start getting sore and it still hurts a bit to bend. Once I know longer feel nauseated and my jeans stop irritating my incision, I will be happy. I truly hate wearing sweat pants all of the time...I miss my cute jeans. All is fine as long as I'm standing...but as soon as I sit down, the top of the waistline just starting cutting into where I'm glued. Owwww....
I truly can't wait for summer to get here. I should be not in any more pain and I should be mostly healed, at least on the outside. I hope I don't get sick of my pouch...for now I love the thing because it's working and for the first time in my life, I can say I'm shitting every day, multiple times lol.
Sunday, March 10, 2013
Oh Boy
I don't even know where to start. Since I've been home, I've been having this pain in the lower right part of my stomach a little below an incision. It really only hurts when I move a certain way, sneeze, cough or laugh too hard. My husband decided it was time for an ER visit after I sneezed in front of our kids and screamed out in front of the kids and almost blacked out from the pain. We didn't go to the hospital that did my surgery, but another hospital close by because I didn't think it was due to the surgery because its not the incision that hurts me.
They did a CT scan and bloodwork, and the results has me scared shitless. But the hospital I went to refuses to do anything because their surgeons won't touch another surgeons work. So my surgeon needs me to make an appointment first thing Monday morning.
Basically, my white blood cell count is elevated. My bilirubin in the bloodstream is elevated. I have a large quantity of free-floating fluid that is accumulating in my abdomen, the doctors seem to think its caused from an absess in the incision. Plus, the CT scan showed "large multiple wedge-shaped hypodensities in the periphery of the liver." I googled that and it means that those areas are a red flag to doctors that parts of my liver tissue isn't normal. With the elevated white blood cell count and excessive bilirubin, I'm just praying that its not liver cancer. I didn't come into the ER with complaints relating to the liver, so they can't do further studies, my doctor will need to do that.
I have been so sick since being home. I can't eat and when I do, it's very small amounts. I think yesterday I had a couple of saltines and a half of a half piece of chicken...I couldn't even eat the whole half. My stomach is distended partly due to I'm still swollen internally from the surgery and partly due to the large amount of fluid that's accumulating.
I am 26 years old and it feels like I have problems that people don't experience until their senior years. And even then, I know lots of seniors that never even really had a major health problem that comes close to what I've been through. But, trying to remain positive and remember that no matter how bad you think you have it, there is always somebody out there who is going through worse. So, I'm just hoping that whatever is going on with my liver isn't as scary as it sounds and the draining of the fluid can be done easily without a hospital stay because all of my family have used up their off days to help me with this surgery. My parents are worthless and I could never ask friends to help when most of them have their own families and jobs to worry about.
Today is a day of complete rest for me. I am only allowed up to use the bathroom lol. My husband has been overly worried and has been taking my temperature once an hour because if I spike a fever, we need to go to the hospital ASAP. No high fever yet, but it's bouncing back and forth from 98.9-99.7 which technically is a fever to me because my "normal" temp runs about 96 degrees.
So hopefully my surgeon can see me tomorrow so I don't have to think and worry about this for a long period of time. I think the wait is absolutely horrible....probably worse than the actual condition. But me and my husband both struggle with anxiety and he's been having multiple panic attacks today because be thinks he's gonna lose me. He said last night he should've married somebody he hated so if he lose them, it wouldn't be a big deal. I told him, "if you married somebody you hated, that would be a miserable life." He replied with "No, a miserable life for me is to not have you around anymore." I about cried....he can be so sweet sometimes and I hate myself that I make him worry because seems like everything tends to go wrong with me. I know I have no control over what happens, but still. It doesn't seem fair that he has to worry over me
Well I am off for now. I'm due for pain meds and a nice nap. I might try to eat something since I haven't eaten yet today. It sucks having to make myself eat...but hey, it's the best kind of diet lol.
They did a CT scan and bloodwork, and the results has me scared shitless. But the hospital I went to refuses to do anything because their surgeons won't touch another surgeons work. So my surgeon needs me to make an appointment first thing Monday morning.
Basically, my white blood cell count is elevated. My bilirubin in the bloodstream is elevated. I have a large quantity of free-floating fluid that is accumulating in my abdomen, the doctors seem to think its caused from an absess in the incision. Plus, the CT scan showed "large multiple wedge-shaped hypodensities in the periphery of the liver." I googled that and it means that those areas are a red flag to doctors that parts of my liver tissue isn't normal. With the elevated white blood cell count and excessive bilirubin, I'm just praying that its not liver cancer. I didn't come into the ER with complaints relating to the liver, so they can't do further studies, my doctor will need to do that.
I have been so sick since being home. I can't eat and when I do, it's very small amounts. I think yesterday I had a couple of saltines and a half of a half piece of chicken...I couldn't even eat the whole half. My stomach is distended partly due to I'm still swollen internally from the surgery and partly due to the large amount of fluid that's accumulating.
I am 26 years old and it feels like I have problems that people don't experience until their senior years. And even then, I know lots of seniors that never even really had a major health problem that comes close to what I've been through. But, trying to remain positive and remember that no matter how bad you think you have it, there is always somebody out there who is going through worse. So, I'm just hoping that whatever is going on with my liver isn't as scary as it sounds and the draining of the fluid can be done easily without a hospital stay because all of my family have used up their off days to help me with this surgery. My parents are worthless and I could never ask friends to help when most of them have their own families and jobs to worry about.
Today is a day of complete rest for me. I am only allowed up to use the bathroom lol. My husband has been overly worried and has been taking my temperature once an hour because if I spike a fever, we need to go to the hospital ASAP. No high fever yet, but it's bouncing back and forth from 98.9-99.7 which technically is a fever to me because my "normal" temp runs about 96 degrees.
So hopefully my surgeon can see me tomorrow so I don't have to think and worry about this for a long period of time. I think the wait is absolutely horrible....probably worse than the actual condition. But me and my husband both struggle with anxiety and he's been having multiple panic attacks today because be thinks he's gonna lose me. He said last night he should've married somebody he hated so if he lose them, it wouldn't be a big deal. I told him, "if you married somebody you hated, that would be a miserable life." He replied with "No, a miserable life for me is to not have you around anymore." I about cried....he can be so sweet sometimes and I hate myself that I make him worry because seems like everything tends to go wrong with me. I know I have no control over what happens, but still. It doesn't seem fair that he has to worry over me
Well I am off for now. I'm due for pain meds and a nice nap. I might try to eat something since I haven't eaten yet today. It sucks having to make myself eat...but hey, it's the best kind of diet lol.
Monday, March 4, 2013
1 Week Post-Op
I can't believe today is officially one week since my surgery and having my ileostomy, Ellie. I know I wanted to chronicle my experience in the hospital, but I was not up for blogging and, honestly, I don't remember too much of the first 3 days.
I do know that I did not have an epidural like they told me I would. I had a pump that would dispense Dilaudid every 8 minutes. If I fell asleep, you can guarantee I was waking up in some pain since I couldn't push my button while asleep. No NG tube, either, thank goodness. I was rather scared about that. They was able to do the surery half laparoscopic and half open. I have about 4 laparscopic incisions and then they reopened my old c-section scar, only made it longer. At least it's not going up and down my stomach.
The anesthesia stayed in my system for about 3 days and I was falling asleep quite a bit and was saying some off the-wall things. Apparently, I have 11 children!
I had a non-surgical complication the first night regarding my IV. It came out of the vein in my hand (I told them that always happens to IVs in the hand, and they didn't listen). I was paging my nurse for about an hour complaining of severe pain and my hand hurting, but she never came. About an hour and half later, a resident came into the room to check my incisions and he saw my ballooned hand. It was literally 3 times its size. He brought in this device to check bloodflow when I told him parts of the hand were numb and I wasn't getting any blood flow to my index finger and thumb. So, the severe pain was from me being slices open not even 12 hours prior to this and all of my pain meds was being trapped under my skin instead of going into the vein. He yelled at the nurse for not doing her job and coming in whenever I paged. NEedless to say, a few people were calling that morning after I told them to file a complaint against that nurse...too bad I coudnt remember her name.
I got to come home that Friday because they said I was healing very well and there was nothing they couldnt do for me there that I couldn't do at home.
So, a week after surgery and I'm still in some pain, especially when changing positions. I still walk like a grandma and tire very easily. My husband is doing a great job at taking care of me and our kids and has even been keeping up with the housework. People from church have been bringing us meals so we dont have to worry about eating my hsubands cooking, though my appetite is nowhere normal and I have a bit of restrictions on what I can eat. I eat a half a cup of pudding and feel unbelievably full so I'm lucky if I eat about 300 calories a day, if that.
Ellie isn't a big as a pain as I thought she would be. She needs emptied about 5-6 time a day and it only takes a minute to do. I havent had a problem with leaks or with my wafer, but I understand I will have an accident at some time, hopefully that can be avoided though. Ive lost a few pounds in the hospital, mainly from not eating anything for almost a week and probably from the loss of my colon. The doc said my colon looked like a long snake and was about 13 1/2 feet long.
I know with every day I will feel a little better. I just can't rush myself to heal and need to take it easy and put everything on Dave, but I'm so used to doing everything that doing nothing is driving me crazy. I should try my best to enjoy this break :)
I do know that I did not have an epidural like they told me I would. I had a pump that would dispense Dilaudid every 8 minutes. If I fell asleep, you can guarantee I was waking up in some pain since I couldn't push my button while asleep. No NG tube, either, thank goodness. I was rather scared about that. They was able to do the surery half laparoscopic and half open. I have about 4 laparscopic incisions and then they reopened my old c-section scar, only made it longer. At least it's not going up and down my stomach.
The anesthesia stayed in my system for about 3 days and I was falling asleep quite a bit and was saying some off the-wall things. Apparently, I have 11 children!
I had a non-surgical complication the first night regarding my IV. It came out of the vein in my hand (I told them that always happens to IVs in the hand, and they didn't listen). I was paging my nurse for about an hour complaining of severe pain and my hand hurting, but she never came. About an hour and half later, a resident came into the room to check my incisions and he saw my ballooned hand. It was literally 3 times its size. He brought in this device to check bloodflow when I told him parts of the hand were numb and I wasn't getting any blood flow to my index finger and thumb. So, the severe pain was from me being slices open not even 12 hours prior to this and all of my pain meds was being trapped under my skin instead of going into the vein. He yelled at the nurse for not doing her job and coming in whenever I paged. NEedless to say, a few people were calling that morning after I told them to file a complaint against that nurse...too bad I coudnt remember her name.
I got to come home that Friday because they said I was healing very well and there was nothing they couldnt do for me there that I couldn't do at home.
So, a week after surgery and I'm still in some pain, especially when changing positions. I still walk like a grandma and tire very easily. My husband is doing a great job at taking care of me and our kids and has even been keeping up with the housework. People from church have been bringing us meals so we dont have to worry about eating my hsubands cooking, though my appetite is nowhere normal and I have a bit of restrictions on what I can eat. I eat a half a cup of pudding and feel unbelievably full so I'm lucky if I eat about 300 calories a day, if that.
Ellie isn't a big as a pain as I thought she would be. She needs emptied about 5-6 time a day and it only takes a minute to do. I havent had a problem with leaks or with my wafer, but I understand I will have an accident at some time, hopefully that can be avoided though. Ive lost a few pounds in the hospital, mainly from not eating anything for almost a week and probably from the loss of my colon. The doc said my colon looked like a long snake and was about 13 1/2 feet long.
I know with every day I will feel a little better. I just can't rush myself to heal and need to take it easy and put everything on Dave, but I'm so used to doing everything that doing nothing is driving me crazy. I should try my best to enjoy this break :)
Saturday, February 16, 2013
9 Days To Go
Yesterday I had my pre-surgical appointment. I learned about what to expect when I wake up from surgery, and had bloodwork and an EKG done. The one thing they did that completely caught me off guard was the nurse had to tattoo the mark for my ileostomy for my surgeon. I have a small tattoo on my shoulder, and told my husband I will never get another tattoo again because for me, it hurt too bad to want another one. I'm a wimp and me and pain aren't BFFs. So when the nurse brought in the needle and ink and told me she had to tattoo me, my eyes shot open wide and before I could even think I blurted out "No, you're not." lol.
They told me that for a few days after surgery, that I will have an epidural in place to help minimize the pain. Because of the epidural, I will have a catheter because obviously I won't be able to walk to use the toilet because I will have no feeling in my legs, which is fine by me. She said to expect to have an NG tube to keep my stomach empty. Usually the NG tube is used for feedings and putting liquid into the stomach by those who can't eat. In my case, it's going to be sucking out any stomach acid and should also keep my nausea to a minimum. I'm a little scared by this because I've never had one before. As long as that's in place, I won't be seeing my girls because I don't want to freak them out. They also said that it's possible I could wake up with an IV in my neck if they run into some problems and I need alot of medicines. For the first few days, I won't be allowed anything by mouth, not even water. But they also told me that I won't want anything by mouth. Not happy with that statement either because that implies a lot of pain. I know surgery=pain, but was kind of under the impression that an epidural would take that away for me.
It will be a minimum of a 7 day stay, if I don't run into complications like an infection. Which means, earliest I will be home is March 4th. My oldest's birthday is March 8th so I hope I'm home in time for that. We actually celebrated both of my girls birthday yesterday (their birthdays are 6 days apart)because we dont know how I am going to be feeling. Instead of them having a party, we took them to Build-A-Bear and they loved it. <3
I can't believe my surgery is in only 9 days. The appointment yesterday just made it seem more real. I look at the tattoo on my stomach where the ileostomy will be and the bracelet that I have to wear to match my number to the bags of blood I will be receiving during the surgery...it freaks me out.
I still haven't totally come to terms with getting an ileostomy and having the colon removed and I probably won't be able to accept it until I actually have it. It's a life changing thing. But, I have amazing and supportive friends and family who have helped encourage me and pick me up whenever I need it. God has blessed me with an amazing husband who has seen me suffer with my problem the whole time we have been together and who has pushed me to find out answers. I am ready to move forward with my life and am done letting my stomach and bowel prevent me from enjoying my life, my family and my friends...but that doesn't mean I'm not scared shitless about the journey that lies ahead of me. But, I've been through my share of hardships and got through all of them stronger, I know I will get through this.
They told me that for a few days after surgery, that I will have an epidural in place to help minimize the pain. Because of the epidural, I will have a catheter because obviously I won't be able to walk to use the toilet because I will have no feeling in my legs, which is fine by me. She said to expect to have an NG tube to keep my stomach empty. Usually the NG tube is used for feedings and putting liquid into the stomach by those who can't eat. In my case, it's going to be sucking out any stomach acid and should also keep my nausea to a minimum. I'm a little scared by this because I've never had one before. As long as that's in place, I won't be seeing my girls because I don't want to freak them out. They also said that it's possible I could wake up with an IV in my neck if they run into some problems and I need alot of medicines. For the first few days, I won't be allowed anything by mouth, not even water. But they also told me that I won't want anything by mouth. Not happy with that statement either because that implies a lot of pain. I know surgery=pain, but was kind of under the impression that an epidural would take that away for me.
It will be a minimum of a 7 day stay, if I don't run into complications like an infection. Which means, earliest I will be home is March 4th. My oldest's birthday is March 8th so I hope I'm home in time for that. We actually celebrated both of my girls birthday yesterday (their birthdays are 6 days apart)because we dont know how I am going to be feeling. Instead of them having a party, we took them to Build-A-Bear and they loved it. <3
I can't believe my surgery is in only 9 days. The appointment yesterday just made it seem more real. I look at the tattoo on my stomach where the ileostomy will be and the bracelet that I have to wear to match my number to the bags of blood I will be receiving during the surgery...it freaks me out.
I still haven't totally come to terms with getting an ileostomy and having the colon removed and I probably won't be able to accept it until I actually have it. It's a life changing thing. But, I have amazing and supportive friends and family who have helped encourage me and pick me up whenever I need it. God has blessed me with an amazing husband who has seen me suffer with my problem the whole time we have been together and who has pushed me to find out answers. I am ready to move forward with my life and am done letting my stomach and bowel prevent me from enjoying my life, my family and my friends...but that doesn't mean I'm not scared shitless about the journey that lies ahead of me. But, I've been through my share of hardships and got through all of them stronger, I know I will get through this.
Saturday, January 26, 2013
Introduction
On February 25th, 2013, my life will be changing....hopefully for the better, though I am sure it will take me a while to see it as a better life.
This is going to be a subject that most people won't want to hear about unless they themselves have had or having similar issues, so if you have a weak stomach, I suggest to not read anymore. You have been warned.
I am 26 years old, and since I was a child I have suffered from chronic constipation. While its normal for everybody to experience this in their lives, the extent I have suffered with this is not normal. "Normal" for me was going to the bathroom once every 2 or 3 weeks, and then being so absolutely miserable until I would go (I never used laxatives due to a horrible reaction I had). November 9th, 2012, I was admitted into the hospital for upper bowel impaction. Not sure how long I have had it since I was having stomach pains since the summer that had just intensified as the months went on. Everything they were trying to get the impaction to break up was not helping. 5 days later after what was torture, they finally got me cleared out and I was allowed to go home, with a diagnosis so far as having a severely redundant colon. Instead of my colon being the average 4-5ft long, mine is between 12-14 feet long.
I started having more tests done, a Sitz marker study and a rectal manometry test. After failing both tests, I was referred to a colorectal surgeon in Pittsburgh. My diagnosis? On top of the redundant colon, I have colonic intertia with rectal nerve damage. After years of dealing with this, my colon doesn't function anymore. The doctor gave me 2 options. I can have the colon removed and have a ileorectal anastamosis, meaning he can take the ending of my small intestine and "hook" it up to my rectum. The odds of this not working for me was 60-70% due to the nerve damage and would end up having option 2 anyways. Option #2 is having an ileostomy bag on my stomach.
After much debate and discussing it with my husband, we decided the 30-40% chance of it not working and end up with another surgery was not worth the risk and having a second surgery was not an option for us. Opting for the ileostomy bag was 100% guaranteed success. So, I made the call and set the surgery up to have the ileostomy.
My surgery is a month away, and I'm having days where I feel positive about it, then the days where I completely freak out about the thought of having a permanent bag and want to call and completely cancel the surgery. Days where I can't wait for it because I feel miserable and days where just thinking about it sends me into multiple panic attacks and days where I cry off and on the whole day. I keep thinking that if my parents cared enough to have this problem looked into whenever I was a child, I wouldn't be in this spot today. Then I feel hatred for myself because I have been on my own since I was 18 and didn't do anything about it myself, simply because I thought that it was normal.
My purpose for this blog is after doing much research and finding blogs of people that are going or went through this, I thought I could blog my experience -the good and the bad. And hopefully help somebody else who is going through this.
Right now, I mainly feel fear. Fear of how it's going to change my life, physically and mentally. I already suffer with body image issues, so I can imagine this is going to make that worse for me. I have 2 small children, a soon-to-be 6 year old and a soon-to-be 4 year old. They were both afraid to come around me in the hospital because the IV in my arm frightened them. Whenever I come home with an ileostomy bag, I am afraid they will never want to hug me again. I've been trying to explain them what is going to be happening and reassuring them they won't hurt me, but my oldest has already admitted that she is going to be a little afraid of me. I'm sure it will lessen over time.
It is going to be a huge change for me and my family, and I pray every night that I am making the right decision for my health.
This is going to be a subject that most people won't want to hear about unless they themselves have had or having similar issues, so if you have a weak stomach, I suggest to not read anymore. You have been warned.
I am 26 years old, and since I was a child I have suffered from chronic constipation. While its normal for everybody to experience this in their lives, the extent I have suffered with this is not normal. "Normal" for me was going to the bathroom once every 2 or 3 weeks, and then being so absolutely miserable until I would go (I never used laxatives due to a horrible reaction I had). November 9th, 2012, I was admitted into the hospital for upper bowel impaction. Not sure how long I have had it since I was having stomach pains since the summer that had just intensified as the months went on. Everything they were trying to get the impaction to break up was not helping. 5 days later after what was torture, they finally got me cleared out and I was allowed to go home, with a diagnosis so far as having a severely redundant colon. Instead of my colon being the average 4-5ft long, mine is between 12-14 feet long.
I started having more tests done, a Sitz marker study and a rectal manometry test. After failing both tests, I was referred to a colorectal surgeon in Pittsburgh. My diagnosis? On top of the redundant colon, I have colonic intertia with rectal nerve damage. After years of dealing with this, my colon doesn't function anymore. The doctor gave me 2 options. I can have the colon removed and have a ileorectal anastamosis, meaning he can take the ending of my small intestine and "hook" it up to my rectum. The odds of this not working for me was 60-70% due to the nerve damage and would end up having option 2 anyways. Option #2 is having an ileostomy bag on my stomach.
After much debate and discussing it with my husband, we decided the 30-40% chance of it not working and end up with another surgery was not worth the risk and having a second surgery was not an option for us. Opting for the ileostomy bag was 100% guaranteed success. So, I made the call and set the surgery up to have the ileostomy.
My surgery is a month away, and I'm having days where I feel positive about it, then the days where I completely freak out about the thought of having a permanent bag and want to call and completely cancel the surgery. Days where I can't wait for it because I feel miserable and days where just thinking about it sends me into multiple panic attacks and days where I cry off and on the whole day. I keep thinking that if my parents cared enough to have this problem looked into whenever I was a child, I wouldn't be in this spot today. Then I feel hatred for myself because I have been on my own since I was 18 and didn't do anything about it myself, simply because I thought that it was normal.
My purpose for this blog is after doing much research and finding blogs of people that are going or went through this, I thought I could blog my experience -the good and the bad. And hopefully help somebody else who is going through this.
Right now, I mainly feel fear. Fear of how it's going to change my life, physically and mentally. I already suffer with body image issues, so I can imagine this is going to make that worse for me. I have 2 small children, a soon-to-be 6 year old and a soon-to-be 4 year old. They were both afraid to come around me in the hospital because the IV in my arm frightened them. Whenever I come home with an ileostomy bag, I am afraid they will never want to hug me again. I've been trying to explain them what is going to be happening and reassuring them they won't hurt me, but my oldest has already admitted that she is going to be a little afraid of me. I'm sure it will lessen over time.
It is going to be a huge change for me and my family, and I pray every night that I am making the right decision for my health.
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