Thanks for the info! I guess I should elaborate a bit on the past, as others have here. I'm 5 years post pouch, complicated by sepsis and pelvic abscess postop. I became severely anemic due to hemolysis on remicade, which drove me to surgery 6 months after initial dx. Even prednisone did not put me in remission with my UC, and my GI felt nothing would after a double dose remicade infusion helped for only two days. Single dose worked for a few hrs.
I'm trying Cortifoam for cuffitis because I couldn't get any response from canasa. If I go back onto systemic immune suppression, I will have to stop working, as I work w kids and get every germ they come in with when on the drugs. Still, I will if that is what it takes! This isn't living. I was looking up something else and came across this forum, and felt a bit better to know that this is not unusual, though I hate it to happen to others. I have been so sad about the loss of my 'life' for the last 5 years. I had a terrible time with the ostomy because my skin broke down and it leaked constantly. I am so scared to end up there again... anything but another ostomy. I have terribly sensitive skin.
yesterday I was talking w a patient about wearing a back brace and how important it was. She burst into tears and cried, 'I wish I was normal!' It was awful to see this 11 year old say that, so I shared a very vague description of my own not-normal state with her (minus gory details). But I know very much how she feels, and she calmed down. She has multiple issues, and I had to learn to be flexible about the stuff that is not as critical now. Easier to do this for my pts than for myself.
Sometimes I think I was given this problem to make me a better doctor, but in reality, I have maximized the lessons in patient care and treatment from it, and now it's hurting my ability to care for others. The lack of sleep from 8-10 bms a night, every night, is really catching up with my memory and temperament. I could just drink liquids and resort to this when I need sleep, but that is not a way to live just to work. It may be time to put my health before my career and call it, but that is sad in a way--trained 10 years after college only to practice for 10. And the last 5 years have been a battle to stay healthy and still do what I do at work. I made it for a while by putting all else aside, but that is exhausting.
Anyway, thanks for listening. I know everyone here understands this inner conflict far better than my friends and family can. They see the outside, not the inside. I am lucky to have a dear friend who has a j pouch for the same reason, 9 years out with minimal issues--doesn't even need the diarrhea meds that I still live by. She even has a little boy who is 3. I talk w her because she had been there with the severity of her UC. TPN for months, all kinds of mess. But she got the right care from the start, while I didn't, and our contrasting results speak to that. I'm so glad she is well.
By the way, my surgeon was totally unhelpful with chronic problem management. I'm working with a new GI who is much more hopeful. But we are digging me out from such a deep hole that it is hard to believe it can work. As a surgeon myself (different field), I was hurt by how he washed his hands of my concerns months ago, leaving my pouchitis to fester until I could get in with the new GI. That is very poor care. I'm tempted to write him a letter filling him in.
Have you had any experience with bone broth reducing gut inflammation? I'm strictly allopathic in my beliefs and training, but this would not be tough to try out... that's what I was looking into when this forum popped up on google. ��
Happy holidays to all--I am looking forward to the chance to rest! Working the whole time but it will be slow hopefully.
Athena
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