A UC question related to azathioprine

DebE13 · Post by **DebE13** » Mon May 23, 2016 5:06 pm

I know UC is a different beast than MC but poop is poop and this is the place for helpful answers. My son has been on prednisone for almost a year now. I dislike that fact more than he does. His taper is not working. His D is back to the point of him starting to complain. He rarely complains but is miserable. He takes Lialda- not sure how well that is working. We just saw his GI last week and now that college finals are over he had him drop the prednisone from 20 to 15 mgs. No good. He tried tapering before that but the D became worse and when he increased it the D didnt really improve. That sounds like my experience with it. We were told the azathioprine can take months to notice any improvement. He just increased it to 150mg/day on April 13th so it hasn't been that long. So he just has to tough it out til then? And in a few months it may or may not work. In the meantime, he has burning D and pain. Frustrating for a mom and worse for him. He is working full time for the park department so bathrooms aren't always nearby. I know he will manage but it could be a long summer for him.

The next step the GI mentioned is a biologic. That scares the hell out of me. I'm not sure which one will be suggested since he has a liver disease (PSC and AIH) but that seems to be the plan. I know he will be willing to take anything that makes life normal again. He starts his senior year of college in the fall and will begin an internship while taking classes and also holding down a part time job. I give him a lot of credit. I feel helpless not knowing what to suggest next. He is starting to be more receptive to food suggestions so thats a start.

Any helpful suggestions would be appreciated.

brandy · Post by **brandy** » Mon May 23, 2016 5:57 pm

Hi Deb,

My girlfriends stepson was on every drug under the sun for u.c. as freshman in college. He was in the hospital a lot. none of the drugs were working. Next step was going to be remicade a biologic. None of the 4 parents were crazy about the biologic option. He ended up meeting some random dude on line in a uc forum and the dude told him to get the j pouch surgery as the j pouch was the only thing that had worked for the dude. He talked to the dude on the phone and ended up doing the j pouch surgery and skipped the bio logics. My understanding is that the j pouch had not been presented as an option by the gi docs--they were pushing remicade. Kevin is doing well now.

Another option would be to go hardcore paleo over the summer and see if he gets improvement.

Best wishes, brandy

brandy · Post by **brandy** » Mon May 23, 2016 6:18 pm

Robb wolf is the paleo guy who had uc, was scheduled for surgery to have part of his colon removed. Decided to go paleo diet and was able to cancel his surgery. http://againstallgrain.com/about-me/
Is about Danielle walker also had uc and went into remission with paleo.

He can read up on Robb wolf and Danielle walker on Internet.

Sorry this is brief, I'm on a primitive tablet.

Post by **tex** » Mon May 23, 2016 8:25 pm

Deb,

Have you or your son read some of the posts on this forum by Nathan (username NJ)? Nathan developed UC at the age of 19, tried the drugs, and has been controlling his UC with the same diet changes we use for years (without drugs). You can find a couple of posts by him in the thread at the following link:

Son just diagnosed with ulcerative colitis

The J pouch is done by removing the colon and attaching the ileum to the stub with a pouch formed at the end of the ileum. That option was available to me, but I chose to pass on it. It's sort of a modified diarrhea arrangement with a small holding pouch. If he has pancolitis, and he refuses to do the diet, a J pouch is certainly better than nothing, but if a diet would work, it would probably save his colon.

Tex

DebE13 · Post by **DebE13** » Tue May 24, 2016 3:43 am

Thanks for the suggestions. I will have to keep reinforcing the idea of diet and keep sending him the information so he sees it works for others.

brandy · Post by **brandy** » Sat Jun 25, 2016 12:33 pm

Hi Deb,

I keep meaning to clarify my post on this. Kevin, my girlfriends stepson with UC never tried diet changes. The Mom was familiar with the paleo diet from using it for weight loss and the Mom was familiar with the fact that it might help for UC. The four parents talked about paleo diet and diet changes amongst themselves and with gastro docs at four hospitals. Gastro docs at all four places said diet wouldn't matter. He was only told to eat low fiber. My friend who is a dietitian at one of the hospitals thinks the paleo diet is unsafe and too extreme. Ultimately the four parents did not want Kevin to feel different from his friends by being on a special diet. He ate a lot of pizzas and his Mom's lasagna during this time. He was hospitalized a lot. Gluten free and paleo were never tried.

I've often wondered if he would have kept his colon by going paleo.

I'm really impressed your son was able to stay in college. Kevin had to drop out of college when all of this was going on as he was hospitalized a lot.

When I lurked on the UC forums (generally depressing places), to read up on Entocort, people would try GF for a week or two but then give up. As we know one week of so is not long enough so diet discussion on the UC forums is generally about diet changes not working.

Tex is right, our colon that we are born with is better than J pouch. J pouch involves three surgeries. You "go" more times a day with a J pouch. As we know that is inconvenient. J pouch is also subject to getting infections....something called pouchitis.

Post by **tex** » Sat Jun 25, 2016 3:17 pm

Yes, UC patients who have undergone a colectomy and the J pouch surgery often develop pouchitis. If you read the gory details involved with treating it, the J pouch loses a lot of it's appeal (IMO).

Pouchitis: A Practical Guide

I still believe that diet changes are by far the most reliable, safest treatment for UC.

Tex

Gabes-Apg · Post by **Gabes-Apg** » Sat Jun 25, 2016 3:18 pm

I still believe that diet changes are by far the most reliable, safest treatment for UC.

not just UC, not just IBD's but for all health conditions!!

Post by **tex** » Sat Jun 25, 2016 3:31 pm

Tex

DebE13 · Post by **DebE13** » Sun Jun 26, 2016 7:49 pm

Thanks for the additional comments- always appreciated. He does have a lot of problems but hasn't gotten to frequent hospitalizations yet. That has been a big concern for me but so far, it's been good. He starts his senior year in the fall and will be doing his internship with the juvenile justice system for the County, taking classes, and working. I pray everything goes well. I know he fatigues easy but he has never really been slowed down yet and I am thankful for that. He lives life.

I think I have a harder time with it than he does. It goes back to the control thing- I like to be in control of everything so the idea of his health turning at anytime and everything that will effect makes me very at odds. He, on the other hand, takes everything one day at a time and always says that there's nothing he can do about it so he isn't going to worry about it.

I think the aziathioprine has finally had enough time in his system to start helping. He is still on prednisone so we are still working on that. He hasn't complained lately of any D issues but it's hard to tell since he doesn't live at home anymore. We see his GI in a couple of weeks so we will see what happens.

Hopefully he is continuing to watch his diet. I agree, that is the way to go.