I do know with biologics they say you need about 3-6 months to truly determine if they're going to work. Also, there are other biologics beside Humira (like Remicade) that he might get a better bump from.  I've not suffered with pouchitis much through my years, so can't elaborate on other treatments like some of these folks can. I do know dietary changes can "help" some. Has he tried eliminating simple carbs, etc.?  Like with Paleo diets, things like that?  Some folks seem to get some relief doing that. 

 

However quality of life is very important, and if he cannot bear it, maybe an ostomy would be the better option for him, at some point. I do know, though, the issue with body image.  I was 19 when I had my loop ileostomy, and I knew if I had to do it, I could've lived with an ostomy, but as a 19 year old, I was also pretty happy I didn't have to. 

Hi Rachel,

 

His GI said "we'd know in a month if it was going to work" so I'm thinking he won't suggest waiting it out.  Meanwhile DS has a dozen poops/day, getting up at night, accidents at night etc. 

He certainly does not eat as well as he could.  I put him on the SCD when he had the UC and it was terrible - he hated it and I was stressed trying to make everything from scratch.  A neighbor recommended Paleo recently and even bought him a bunch of dry pasta, etc. but he loves his carbs and lives on bagels, grilled cheese, pizza, chicken, toast, crackers plus a minimum amt of fruits and veggies.  He is 16 after all and just won't get on-board with changing his diet.  It doesn't help that the GI won't prescribe nutrition changes either.

BTW he's been taking VSL 3 DS almost every day since the start of pouchitis and I give him an extra probiotic with his supplements daily.

Yeah, it takes 3 months to achieve maximum benefit, but I would expect some sign of improvement in a month, if it was going to work.

 

You can encourage carb reduction without it being an all-or-nothing type affair. Get skinny crust pizza instead of thick or regular crust. How about salads? We eat fresh salads every day and I put sliced apples or strawberries on top, along with shredded carrots and cabbage. They make some very good low carb pastas now (Dreamfields and Barilla we like best). They are loads better than the whole wheat. But, realistically, it probably is not all just diet.

 

Does he respond to prednisone? I know it is not a long term solution, but if he can get into remission, maybe the other things can have a chance. There also is Simponi and Cimzia.

 

Jan

Hi Jan,

 

His GI wants to give the Humira more time.  He's doubling up and going to be getting injections every week instead of every other.  The GI feels that there are more things to try before giving up on meds all together.

Prednisone does work for him some-what but he gets incredibly irritable on it and eats non-stop around the clock which isn't good either.

So we're hanging in there for now.  He is dead set against going back to ileostomy.

 

Thanks for your thoughts,

 

-Chris

Hello

 

What about VSL3?

Did he try it?

 

Regards

Eitan,

 

Yes he has been taking VSL 3 DS all along - just one packet a day. 

 

-Chris

Seems like a reasonable approach. When I was on Humira, I needed weekly injections. A positive response to prednisone is a good sign, when it is prednisone resistant, it is less likely to be medically manageable.

 

Jan

 

My son is having a rough time.  Still no change with weekly humira injections.  Things are worse if anything since starting almost 8 weeks ago.  I'm thinking about getting him admitted today for bowel rest, iv antibiotics etc.  Perhaps if pouchitis clears up in hospital we can have a fresh start and try 2 VSL3 DS/day and maybe essential enzymes?  Not sure if dietary changes are realistic for my 16 year old.  He's so angry and depressed, our family is in crisis trying to cope with this.

So sorry. At 16, one cannot always see the big picture, and of course 16 year olds are often "immortal" in their own eyes (ie. Why they won't always follow along with dietary changes, even if it might help).  I know I was, to a point, as a child suffering with UC. Hope things get better soon. I imagine I'd be asking for some med changes if the Humira isn't working soon.

How about a consultation with Dr. Shen? If I were having similar problems I would go to the  Cleveland Clinic to see him.

I'm sorry that your son and family are going through this.

Thank you all for your advice.  He is in the hospital getting iv antibiotics; not sure what the plan is beyond that.  He seems to be ready to make "some" dietary changes so we'll see about that.  I think his GI will recommend another med.  I've thought about consulting Dr. Shen - my GI knows him and is willing to help us do that.

Vsl3 does not help everyone . When my son tried it - it increased his bms. Also, i think it could have some irritants in it ( gluten or lactose? I cannot remember).

 

My 14 year old son is on a restricted diet, humira, methotextrate, rifaximin, acacia fiber supplements etc....He feels better on the diet and that has given him the will power to stay on it. It is not easy though. I hope you find what works.

Hi Boys Mom:

 

Can you give me an example of what your boy eats for Breakfast, lunch, dinner, snacks?

 

Thanks!

 

Brendan's Mom

Breakfast: scrambled eggs with grass fed butter, a tiny bit of onion and a bit of smoked salmon with no added sugar ( fewest ingredients possible). He eats a brand of bread that is available in NYC area called "bread alone" that is very fresh, only 4 ingredients and he eats the flavor - french sour dough that has no yeast.  I also put out blueberries for him because of the humira - blueberries to help ward off colds. Also berries are lower in sugar than other fruit.  Other breakfast could be some kind of meat - small turkey burgers, that I use to add bone broth and cilantro to ( to get some greens into him - but so minuscule that may not be enough to matter.) Or else I order breakfast sliders from US WELLNESS which is all grass fed meat. I order a lot of their products. 

 

I will write more later re other meals etc....