SCD/IBD-AID peeps: were you ever able to get completely off meds?

little_bear, it took me about two-three months of 100% compliance on the IBD-AID to see a change in my UC symptoms; however, because I started the diet while already in a long remission (thanks to a long period of Imuran), I'm having trouble finding similar experiences -- people who are interested in lowering certain meds on a trial period, and specifically in my case, to see if the diet and mesalamine (Colazal) can handle my UC. As a couple people have recommended, I'm looking longterm now. I might feel a bit more comfortable at a year of success, but I might not.

ASellers, my current doctor was very blasé about trying it (like, why not?!) but also has been very watchful and responsive, requesting I keep in regular touch about my symptoms, even if they stay stable, and get regular labs. I did the diet while in remission on Imuran and while it was probably more comfortable than starting a diet during a flare, I think it was difficult to notice any change in symptoms without stopping a med.

Got my CBC back and it was normal, too. We'll see what happens in a few months!

Just a quick update: I had my colonoscopy done on July 1st, and my colon looked great, no action, biopsies all negative. Still on the diet 100%, which is hard and sometimes silly —eating out is obviously 99% tougher than it was while I was on Imuran. Also extended family get-togethers have some extended incredulity about homemade yogurt and the inability to eat most brands of brats, but whatever, right? I’d say that after doing the IBD-AID almost a year and stopping imuran about six months in (but continuing my mesalimines and vitamins, and I still do today) I’ve noticed some increased gut sensitivity at menstrual time, but otherwise I feel pretty darn good. My original question had to do with eventually getting off the mesalamines, but they are so low impact and I’m feeling so good that I’m not really thinking that way anymore. Even if I eventually flare and gotta go back on something stronger like imuran or humira, I’m happy I tried this.

*edited to correct autocorrect. Humors for humira, indeed. :D

Post Edited (AnnaM) : 7/14/2019 6:10:20 PM (GMT-6)

Diet was key to getting better. Now that I'm in remission the only thing I still can't eat is gluten. Everything else, even dairy, is back on the table.

iPoop -- I don't think I'd call myself victorious ever! It's not that type of disease. It's more like pockets/periods of calm, and this is a particularly surprising period of calm. And I am definitely feeling good on the mesalamines and don't plan to stop them. I do feel like a lucky duck (albeit a beer-free duck, which still is a sad duck by my measurement). I think my original title/question was a bit too ambitious for life with chronic disease.

Hi folks, wanted to give an update on my IBD-AID/SCD diet and med changes. (I thought I’d post it here to keep it all together.)

This summer went pretty well through July and my colonoscopy, which looked good. Then in August, it all went bananas. I started feeling some real familiar flare signs, really suddenly. No blood, but so much diarrhea, so much cramping. “$&@?” I said, and went to UrgentCare. After we discussed my UC, they gave me a prescription for prednisone and took a stool sample. I went home, got ready to take my meds, and got a call from Urgent Care. “Stop!” They said. “Don’t take the prednisone—you have a parasite.”

Cryptosporidium, to be exact! After that was dealt with, my colon was still affronted/flaring and I needed a course of prednisone to calm it down. that made me feel a bit of a failure, despite the fact that the flare had been caused by the nasty crypto (and would’ve happened with imuran as well as without)—because it wasn’t controllable with diet and mesalamine.

After the pred course completed, I developed some additional extra intestinal manifestations of UC. Added to this were some concurrent major health issues for my son, and our family stress levels went to eleven. So when I followed up with my gastro last week, we discussed all the options, and I decided to go back on imuran and continue parts of the diet. We also decided to try a switch from balsaliside to lialda. (I’ll be searching the forum for discussions about that next. )

So, ultimately the IBD-AID diet wasn’t a success for me. I only managed ~ 9 months of pretty good health on it, with colazal as my main medication. I’m sorry that this path isn’t going to work long term for me, but I am happy to be working my way back to less restrictive eating and cooking/baking. (I think if one doesn’t cook or bake, this type of diet will be much harder t do.) i am also hoping for a return to diminished extraintestinal effects.

Sorry for the huge post! I hope that this narrative is helpful to anyone interested in trying the IBD-AID with supervision.

Post Edited (AnnaM) : 11/9/2019 10:30:00 AM (GMT-7)

That is awesome, Rosie! I think that there's a lot to be said for forming new healthier eating habits with these diets. I tend to comfort-eat, and while the IBD-AID was pretty dictatorial, I definitely ate much better on it, and with more variety. I figure I'll ease back into bread/sugar/starches and try to keep up the vegetable and fruit variety.

...I would love a burger (with bun) and onion rings right now. :D