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!
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