Hi everybody I was wondering if anyone happened to be in a similar situation I'm currently in, as it has been a struggle for the past several years for me since my initial diagnosis. Anyway, I've been on Humira every week for almost a year now to treat my pouchitis and I still have well over 12 bowel movements a day. This takes a massive toll on my body and my social life as I get anxious if I'm not near a bathroom. During my gym workouts I have to stop in between my sets to use the bathroom, which is very annoying. I take two Imodium 2mg pills each morning but still only marginally helps, if at all. I eliminated bread, cheese, whole grains, and almost anything you could think of that would cause irritation. I drink plenty of water, I even experimented with alkaline water to see if that would help.  Unfortunately I've been stuck in this position and it's holding me back on a lot of the activities I used to love doing like skiing, swimming, going to concerts, and attending long lectures. I'm still finding new ways to experiment with my body to see if I can make any future progress, but so far has been looking pretty bleak. Thanks for the taking the time to read my story, its been long over due since I've sought out support. Happy holidays, lets make 2019 a year everyone can improve! 

Original Post

Hi, Mike. That’s a tough situation. Do you think the Humira is doing *anything* for you?

One thing you could try is dramatically reducing all carbohydrates. Some folks with Chronic Pouchitis get a good result from that, but it takes determination and patience.

Another thing that might help is VSL #3. I take a maximal dose, and it seems to help me substantially. 

Finally, are you using any soluble fiber, like Metamucil/psyllium? That doesn’t cure pouchitis, but for some people can help a fair amount, by bulking up the stool.

I'd say consult your surgeon/GI about adding fiber supplements like mtemucil/pysillium husk to your diet. It bulks up stool and helps clear the pouch not making going too often. Also talk about adding probiotics like VSL3#. Yoghurt is a natural probiotic but then its dairy so take it if you're not lactose intolerant. Probiotics and antibiotics are not recommended simultaneously many times. Also adjusting to fiber can take a bit of time but many people found it great once your body adjusts to it. Also try doing some pelvic exercises it'll help strenghthen your muscles to hold back for longer period. Good Luck bro 👍

Scott F posted:

Hi, Mike. That’s a tough situation. Do you think the Humira is doing *anything* for you?

One thing you could try is dramatically reducing all carbohydrates. Some folks with Chronic Pouchitis get a good result from that, but it takes determination and patience.

Another thing that might help is VSL #3. I take a maximal dose, and it seems to help me substantially. 

Finally, are you using any soluble fiber, like Metamucil/psyllium? That doesn’t cure pouchitis, but for some people can help a fair amount, by bulking up the stool.

I actually verified that the Humira is indeed working with a blood test not covered by insurance. I'm reluctant to remove anymore carbohydrates from my diet as my body weight rapidly decreases if I don't consume enough. I also tried VSL #3, Metamucil, and psyllium husk ask well but had no success with any of them either. 

kta posted:

What is your history as far as meds? Have you done the antibiotic route?

I have gone through the antibiotic route just over a year ago trying Flagyl which made me violently nauseous so my doctor switched me to Cipro, which had no results the doctors were aiming for and that's how I ended up being put on Humira.   

I’m over a year out from takedown and I usually go 10x-12 a day. I feel like that’s normal for me but I’m sure it’s all relative to what you are used to. What is your goal, in terms of number of times going to the bathroom? 

Have you considered staggering out your Imodium? I take one at lunch, one at dinner and one before bed (if needed). That seems to help me. 

Do you have leakage and stuff at night? Or any other bad symptoms of pouchitis, or is your main concern the number of times per day that you’re going? 

Bubba1028 posted:

I’m over a year out from takedown and I usually go 10x-12 a day. I feel like that’s normal for me but I’m sure it’s all relative to what you are used to. What is your goal, in terms of number of times going to the bathroom? 

Have you considered staggering out your Imodium? I take one at lunch, one at dinner and one before bed (if needed). That seems to help me. 

Do you have leakage and stuff at night? Or any other bad symptoms of pouchitis, or is your main concern the number of times per day that you’re going? 

My goal would is to go 10 times a day considering the number of times I go now. I will also try staggering the Imodium I haven't thought about that. Also I rarely have leakage at night anymore which is a relief. 

Mike.Sos posted:
Scott F posted:

Hi, Mike. That’s a tough situation. Do you think the Humira is doing *anything* for you?

One thing you could try is dramatically reducing all carbohydrates. Some folks with Chronic Pouchitis get a good result from that, but it takes determination and patience.

Another thing that might help is VSL #3. I take a maximal dose, and it seems to help me substantially. 

Finally, are you using any soluble fiber, like Metamucil/psyllium? That doesn’t cure pouchitis, but for some people can help a fair amount, by bulking up the stool.

I actually verified that the Humira is indeed working with a blood test not covered by insurance. I'm reluctant to remove anymore carbohydrates from my diet as my body weight rapidly decreases if I don't consume enough. I also tried VSL #3, Metamucil, and psyllium husk ask well but had no success with any of them either. 

Did you try Psyllium Husk (Raw) or the capsules? If you haven't tried the Psyllium Husks (are a soluble fibre derived from the seeds of Plantago ovata); try some, mix a teaspoonful with a juice, see how that works.

 

I don’t understand why you have been on Humira for over a year while having 12 plus BMs per day. Humira isn’t usually the first biological drug attempted to treat Pouchitis - Remicade is. It’s not clear why Humira was the first biologic drug attempted or why you have stayed on it without attempting Remicade, Entyvio or others that are typically used before Humira.

CTBarrister posted:

I don’t understand why you have been on Humira for over a year while having 12 plus BMs per day. Humira isn’t usually the first biological drug attempted to treat Pouchitis - Remicade is. It’s not clear why Humira was the first biologic drug attempted or why you have stayed on it without attempting Remicade, Entyvio or others that are typically used before Humira.

I actually have been on Remicade for several doses prior to my Colectomy.  

Add Reply

Likes (0)
Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×