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J-Pouch with Crohns anyone?

Hi everyone. I've been living with IBD since 19, I'm 37 now. Never reached out to others like me before which I regret because reading everyone's stories even though sad certainly brings a sense of calmness knowing we are here for each other, I was just not one to ask for help I guess. I sure could of used it though. I started off with being diagnosed with UC in 1997, it was pretty severe. Was stubborn to get surgery so I suffered for 4 years thinking there would be a pill eventually that would make me better. But after 2 blood clots and many many accidents and years of max prednisone use, I finally gave in to having an ostomy. Life was so much better, I should have not waited. A year after I decided to go for a J-pouch. It's had its issues, especially when they told me I now will have chronic pouchitis, but a few days of cipro always took care of it and gave me a relief for a week or two. I got used to it and just didn't want to do the ostomy thing again. Put up with it till I noticed in early 2014 I was bleeding way more then usual. Eventually a trip to ER showed I had a hemoglobin of 39 , was scoped and told that unfortunatelyi have Crohns now. I was confused. I never even heard that you could have both but was told that what happened was that I had Crohn's all the time and was just misdiagnosed. It hasn't fully hit me till maybe 3 months after rediagnosis that its dejavu again. Numerous blood and iron infusions it got to 120 which I'm happy with. Only things I'm on are weekly Humira injections. They tried to sell me on MTX but I just didn't want to put that in my body after reading about it ( maybe I didn't read enough). I take warfarin to prevent clots also. Other then that the best thing I've found was meta-mucil, with out it my bm's are too watery. Got checked in December and my inflammation has gone down roughly 75% and I no longer bleed. But I can't get more then 1-2 hours with out needing to go again. It's frustrating. Especially when it's less then hourly. It's just mentally draining. I've gotton a couple partial blockages so it's hard to fine tune it. I take lomotil also to slow my system down but I don't want to take too much of that. Just once a day, occasionally twice. I tried some other drug to slow me down, it's a anti depressant but I stopped it since it didn't have much effect besides making me more tired. I keep my diet in check and do best I can trying to balance meta mucil and lomotil but I just go too dam often. Having no colon probably is to blame. Or my pouch isn't working well anymore. I don't want to go back to an ostomy. Just hope hope to find some people here with j- pouch and Crohns to give me some hope. It's been a struggle too long. I never complain to anyone really but hope here between fellow sufferers it's ok. Thanks to anyone who took the time to read my entire story, sorry it's hard to put 17 years on paper. God bless.
 
I have a similar situation. Was told I had UC in 1998 at age 16. Pills kept things under control for about 8 years, then stopped working. Was then told I had Crohns colitis due to symptoms of both and through colonoscopy. Remicade worked for a couple years then stopped working. Cimza and Humira did not work at all. I was taking Prednisone to get by but conditions were getting worse with my colon. At my last colonoscopy, GI suggested I consider surgery because of the condition of my colon. Before surgery, the test showed UC. In December 2013, I had surgery to remove the colon and had a temporary ostomy. The Pathologist determined that it looked like UC. In Feb. 2014, I had the revesal. I now have a J-pouch. Everything went well for about 6 months, then experienced Crohn's symptoms. After a pouchoscopy in November showed pouchitis, it was determined that I have Crohn's. Cipro helped a little but that is where I am now. Just started Entyvio last week and hope that helps.
 
Hello Kr81Fl. I do hope that Entyvio helps. We have the Surgery Forum, I am pretty sure you will find members that can relate with you. Sending a lot of hugs and support your way.
 
Araceli, I started humira in June last year. I think it's working because I have no bleeding. I'm generally good except I go so often, like 15-20 on good days. It's like my pouch has anxiety and does not want to hold anything in there. My scope in December showed little inflammation still but I don't want to take methotrexate unless I'm bleeding. Just bought some probiotic to see if that helps with maybe not having good flora in there.

Kr81fl, hope things get better for you. Never heard of entyvio before. Maybe it's something I can use my self. I'll ask my GI when I see him in March. Have you tried playing with met-mucil to slow thongs down, it's the best thing I found to get rid of loose stools, even better then meds....but the meds are good for stopping the bleeding.
 
Entyvio is new, its an infusion similar to Remicade. I haven't tried metamucil, but do occasionally take some fiber and it seems to help during the day. I'll try it.
 
Like I said before, I don't know a lot about J-pouch but I think you should not be going that many times. If you still have inflammation is not good. In my opinion Humira by itself is not doing the trick. Again, Just my opinion. About the bleeding. My daughter has never bleed, not even once but her disease progressed. What I am trying to said is that no blood, does not mean everything is ok.
 
Yes your right it's still there even though I'm not bleeding. I'm just not that fond of putting all these chemicals in my body especially MTX which they push on me but I'll ask about the entyvio when i see them next.....Looks like it's ibd specific instead of it being for 5 different diseases like humira. I'm not big on side effects..... I took max doses of prednisone back when it was colitis in 1997 and it was terrible.....I have stretch marks all over my body to remind me for life.

Kr81fl, you noticing any side effects from this entyvio? Does it feel like it's kicking in for you?
 
Haven't noticed any side effects yet. I've only had one dose, go for my 2nd next Friday. It seemed to help for a couple days after the infusion, things were a little better, but it seems to be wearing off. I'm still on the loading doses though. Everyone I have heard from says that it takes a while, maybe up to 6 months to start working.
 
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