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!

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.

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.

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 :)