I had chronic pouchitis for 5 years. In November, a ball of infection was noticed on a MRI---surgery for this turned into another emergency surgery for Ecoli. After that large incision, I ended up with an anal fistula and had a seton placed in January. I went back to the dr. on Thursday and more infection was found over my seton itself (which is why it has been so painful). At this point, we have to get rid of the infection, but the dr. thinks my pouch may be bad. So, question-----do I try Remicade? I am so nervous about the chance of getting lymphoma (was told 1/1000 chance). Or, do I have surgery for a permanent bag---this will obviously stop the fistulas but it is so permanent. Anyone on here take Remicade? Has anyone made this grueling decision and have advice? I need to make my decision soon. Thank you.
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Rare but serious side effects can be hard to process. Sometimes we ignore them (e.g. birth control pills) and sometimes we inflate them to near-certainties. I don't know the right choice for you, but it would be surprising if the rate of serious complications from the surgery you're contemplating (as an alternative to Remicade) were substantially less than 1/1,000. Surgery is very far from risk-free.
If I were in your shoes I'd try the Remicade. It probably won't help if there's a structural defect in your pouch, but if the infections are caused by smoldering disease it could make a big difference. Good luck!
If I were in your shoes I'd try the Remicade. It probably won't help if there's a structural defect in your pouch, but if the infections are caused by smoldering disease it could make a big difference. Good luck!
Did you have the opportunity to try Remicade before you had your j-pouch operations? I did and decided not to do it. Mostly as I saw it as prolonging the inevitable and I was in my 50's and not getting younger. Plus I didn't like the cancer risk. I had the surgeries and was one of the unlucky ones to get chronic cuffitis. I think the likelihood of that was 4% in the booklet the surgeon gave me. If it were me I still wouldn't take it but now I'm 3.5 years older and have seen what it's like to be in the 4%.
It seems like you have a lot of things to over come and I'm very conservative these days.
Please write down all the things that can go wrong and assign a probability that it will go wrong or right. This is what I would do. If you have too many variables that have to go right in order to save your pouch then maybe it is not meant to be.
Do you have enough small intestines to make a second pouch or a BCIR pouch? Why is it one j-pouch and nothing else? I know of a lady in the U.K. that just got her 2nd j-pouch.
It seems like you have a lot of things to over come and I'm very conservative these days.
Please write down all the things that can go wrong and assign a probability that it will go wrong or right. This is what I would do. If you have too many variables that have to go right in order to save your pouch then maybe it is not meant to be.
Do you have enough small intestines to make a second pouch or a BCIR pouch? Why is it one j-pouch and nothing else? I know of a lady in the U.K. that just got her 2nd j-pouch.
I was diagnosed with Crohn's just about two years ago and after a very long talk with my doctor, we decided Remicade was worth a try. I am in 100% remission. Yes, there are risks, but he said think of stadium filled with people, maybe 10 would develop cancer. It really a personal decision, but I'd give it a chance before taking out your pouch.
Best wishes.
Best wishes.
Another consideration is the fact that they do not know if the constant state of inflammation is a contributing factor to the cancer risk. This would mean that it is possible that the reason you need Remicade or other biologics is the primary factor, not the biologic itself. It is known that lymphoma risk is higher in those with rheumatoid arthritis, and they are the most studied population that has used biologics. The IBD factor has not been studied much.
Another consideration is that it is unknown if you may still require the same drugs after ileostomy (just like there was no guarantee with colectomy). I wound up with enteropathic arthritis a decade after colectomy, and have been on one biologic or another for nearly a decade. No cancer yet, and I get my blood tests every 3 months.
For me, quality of life trumped the risks. I take Simponi now, but have never taken Remicade. Glad too, because I was not interested in IV infusions.
Jan
Another consideration is that it is unknown if you may still require the same drugs after ileostomy (just like there was no guarantee with colectomy). I wound up with enteropathic arthritis a decade after colectomy, and have been on one biologic or another for nearly a decade. No cancer yet, and I get my blood tests every 3 months.
For me, quality of life trumped the risks. I take Simponi now, but have never taken Remicade. Glad too, because I was not interested in IV infusions.
Jan
If you go to a bag can they leave the j-pouch? My doctor and I talked about me going back to a bag and he told me they would leave the j-pouch because there may be medical advances where the j-pouch could be used again. Maybe he was just trying to make me feel like there is some hope.
I was on remicade for a year when I had uc.
It worked well for me but then they stopped it.
A few years later when I had a nasty flare I was put on it again but I had a bad reaction during the first infusion and it was stopped and I ended up having surgery.
I would say usually it is tolerated fine but the long term effects of taking it are not known and you may eventually have to stop taking it or is may stop working.
So it's fine for a few years but who knows long term...
It worked well for me but then they stopped it.
A few years later when I had a nasty flare I was put on it again but I had a bad reaction during the first infusion and it was stopped and I ended up having surgery.
I would say usually it is tolerated fine but the long term effects of taking it are not known and you may eventually have to stop taking it or is may stop working.
So it's fine for a few years but who knows long term...
I've been on remicade for several years and it has worked well. I have Chrohns in the pouch although my diagnosis was always UC. I am told that the risk of cancer is increased when the patient is also taking an immunosuppressant like many UC or Chrohns patients are. I do think about it at every treatment but not in between.
I was in your situation 4 years ago. I tried the remi but got so sick on it I had to stop after the second dose. I did get 3 years of remission from it. Now Im no longer a candidate for any bios cause I had a past melanoma.( not from the remi)
Do you have Crohns? I had a GI doc that was insistent that I try Remicade and wasn't open to anything else. I was adamantly opposed to it and switched doctors. I've been doing Anti-MAP therapy for a couple of years and am in complete remission. Please, please google this therapy. Anything you choose will come with risks but for me this was a better choice and again for me, I would opt not to do Remicade and would take a permanent ostomy before that. But that is something each individual has to decide. I may still end up with a permanent ostomy someday but for now Anti-map is working.