crohn's after having j-pouch surgery

If you do a search, you'll find many here with a Crohn's diagnosis and others with chronic pouchitis or unclassified disease. There are also many who have tried various versions of paleo diets (low carb/high protein), SCD, and FODMAP. Some have done well, but most wind up back on meds (antibiotics or biologics), and some have opted for pouch removal.

I have chronic pouchitis and tried some diet changes without much effect, but I admit I did not do anything strict. I opted for Remicade and azathioprine, and am doing well. But, I do know that there are risks and it is a high cost option.

Jan

I started on Humria in July and havent felt so good in years! I never realized how horrible I felt till I felt better. Im in the muddle of another bout of puchitis and now my surgery site of a fistula is acting up. love how it progressed to Corhns, but I will get throuh it. Mainly because of my great docs at DHMC!

I had my J pouch surgery in 1997. I rolled along for almost 15 years with few problems. In fact I wasn't even seeing a GI. If I had a problem I'd go see the colon/rectal surgeon. In 2013 I noticed I was having more diarrhea than normal. The GI I started seeing ran some tests and decided I had an issue with my gallbladder so I had it removed. No change. I kept asking my doctors if it was possible I had Crohns. They said no. 

Finally I went to the Mayo Clinic in December 2014 and they diagnosed me with Crohns. Not what I wanted to hear but it confirmed my suspicion.  How can life be that unfair?

I'm not on any of the diets you mention, but I too have a jpouch and Crohn's. I'm starting Stelara next week after searching for something that works for almost 4 years. 

I had chronic pouchitis later determined to be Chrohn's in the pouch.  I have been on Remicade for about three years with good results.  My only concern is possible side effects of Remicade including lymphoma.  But I understand this is more likely if on an immunosuppresant as well.

Jan, I know you have been on Remicade as well.  Do you have similar concerns?

Semicolon (Jerry)

Yes and no. My understanding is that the real risk factor is the disease itself that leads to the need for anti-TNF therapy, not necessarily the treatment itself. At least that what I read from the more recent literature. Lymphoma risk is higher with RA and Crohn's regardless. Who knows? Time may tell. But in the long run, I need to be functional. I don't plan on living forever and I want to live as well as possible.

So, I have some concern, but no more than I have concern about being in a car crash or some other calamity like a heart attack. The risk is low, even if higher than the general population.

Jan

Jan,

Thank you for your reply.  You have given me fresh perspective.  Best wishes to you for a Happy New Year.

Jerry

Hi! I had my pouchoscopy almost 10 years ago, but my GI recently  determined that I too now have Crohn's. I was also given the option to take biologics or immunosuppressants, and like you, was NOT up for that! I've been taking Budesonide (Entecort) for over a year now, and while it worked initially doesn't seem to be helping any more (I take a really low dose) and my GI wants me to start a drug regimen sooner rather than later to avoid surgery... 

I'm already on a lactose and gluten free diet and try to limit my sugar (with less success!) but I never heard of the Maker's diet, and will have to ask my nutritionist about it. I think she (my nutritionist) didn't think a paleo diet would work for me as I have trouble gaining weight, and that diet probably wouldn't help? In terms of foods I stay away from, I think (if you look at other posts here) that it's pretty individual, I know I can't eat a lot of stuff that other folks don't have any  problems with (hence no dairy or gluten.) 

I'm afraid I'm in the New York area, I wish I could suggest someone (I don't even know of one here, luckily the practice I go to is very open to alternative remedies.) Best of luck! And thank you!