Ok I know all you have had pouchitis atleast once if not more by now. Let me start by stating I have had my pouch for 20 years now. I have enjoyed the freedom its offered and have traveled to many states and in the state I now call home well let's just say I honestly don't think they know the meaning of pouchitis. So let me ask everyone since when does pouchitis include the fallowing: flatulence, hot & cold flashes, headaches,chest pain, abdominal pain, bloody stool, anal stricture, or the feeling like going potty is your body playing a game of red light green light, and to kick it all off being told oh you have a pouchitis ulcer. What is a pouchitis ulcer?
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Well, I’ve not heard of chest pain with pouchitis, but if they heard “chest pain” and didn’t panic then maybe they have esoteric knowledge. Have you bled so much that you are anemic?
Pouchitis can certainly cause ulcerations in the pouch, and those can sometimes bleed plenty. Did they do a pouchoscopy and see the ulcer?
I may have failed to mention this has been going on for 11months straight now. Also that do this I've had to be hospitalized twice. Yes they did scopes twice one during each hospitalization.
1st time I was told by a G.I doc on verg of retirement that from what he saw in the scopes that my pouch looked like raw meat because it was highly inflamed and he could see a ulcer. For 9 months I was on antibiotics by Jun making it month 10 that's when the bleeding started for 3 whole days by day 4 I was sent to hospital by my doctor because I was anemic. I had 3 blood transfusion (of course they stopped my bloodthiners to boot) and did their 2nd scope but what strikes me as odd is I was discharged from ICU 2 days after having the scope done being told all labs were clear and they found nothing in bacteria test only to find out this month that results from scope showed I still have " pouchitis" and a anal stricture, and a "pouchitis ulcer".I did even know a "pouchitis ulcer" existed before.
As for the headaches and chest pain when I brought it up at the hospital they just told oh "your pain is radiating from your stomach".
Before I forget anything else I was told the reason the antibiotics didn't work was my pouchitis is antibiotic refractory. Oh and that my case is too complicated so I have to see a surgeon and now I find out I have to find a specialist as well since the doctors aren't familiar with JPouch.
RavenWolf, I’m not sure if you’re looking for ideas or just a friendly ear. In case it’s helpful, if I were in your situation I’d be trying a biologic medication, perhaps Humira or Entyvio.
Both actually. I have been considering asking if humira will work with my current list of medications. I haven't heard of entyvio before.
Entyvio is a frontline biologic and has been mentioned by my GI as a second choice to Remicade for inflammation of the J pouch and neoterminal ileum. It has a different mechanism of action and shorter infusion time than Remicade. My GI told me he only considered Remicade a first choice because there was more data on clinical efficacy with pouch patients. As soon as someone has a reaction to or develops antibodies against Remicade, Entyvio then becomes his treatment of choice.
Wow thank you. I will definitely be bringing theese up to the doctor. They have me on Budesonide right now and say it's for 8 weeks.
@CTBarrister, I'm unfamiliar with biologics, as those weren't around in '98. 😉. I've been told that once you go on a biologic you can never stop taking it. Is this correct?
@lclassen posted:@CTBarrister, I'm unfamiliar with biologics, as those weren't around in '98. 😉. I've been told that once you go on a biologic you can never stop taking it. Is this correct?
In the case of Remicade, that is essentially correct. You can't go on it and then off it. I have been on it for 5 years. There is also the chance that you can develop antibodies, although that hasn't happened in my case.
But the reason you can't go off it is not because it's addictive like heroin and you go into withdrawal. If you go on and then off and then back on again, it's just likely not to be effective. Also, you need to take it for a while before the results are observed. At least 6 - 12 weeks. So if it is effective, you want to stay on it as long as you can, and hope antibodies are not developed. Although if you get Covid, you do want antibodies to develop, in the case of Remicade, you do not want them to develop.