Can anyone help me understand how diet affects pouchitis when you have an ileostomy? Also, does anyone have autoimmune pouchitis. Is there any light at the end of the tunnel?
To have pouchitis you need a pouch...so do you have an ileo or a j or k pouch?
If you have either pouch then yes, diet can effect it...For example, sugars brew yeasts in the pouch...not just the obvious sugars but white flour, cakes, cookies, candies, all of the good stuff...
A diet low in carbohydrates like cake, pasta, cookies, candy, rice etc and high in proteins and veggies can help your body to produce less yeasty based sugars and thus suffer less.
The other thing is with K pouches your pouch empties out just about completely daily and we irrigate regularly (some/most of us) so it gets washed out too...gets rid of all the gunk and stuff hanging out on the bottom that can fester and rot (euphemism)...which in turn builds more yeast and gas (sort of cause/effect).
J pouchers tend to not irrigate their pouches and paradoxically empty out less completely...leading to an array of symptoms like gas, bloating, cramping etc which is not necessarily pouchitis...but just a side effect of yeast build up or other problems.
I was just home for 2 months...and ate "American" which means that I let myself go and ate whatever I liked...and not what was good for me.
I ate tons of sugar and ice cream (I do that already but here there are no huge barrels of it...just tiny containers...meaning I can only eat a pint at a time!)...I ate way too much white everything: flour, sugar, fat, dairy...
When back in Paris I eat lean meats and fish, chicken and some cheeses, lots of fresh veggies and ripe fruits...my pouch is a happy pouch then...back home my pouch was miserable, I gained weight and bloated...so yes, diet is a major factor in pouch happiness.
You can try an elimination diet...start with 12hrs on nothing but clear fluids (its usually 24 but 12 will do)...Then start with a simple protein like grilled or barbequed chicken for 1 day and slowly add other proteins, 1 at a time...don't add carbs for at least 4 or 5 days.
You should keep a diary to see how your body reacts and what your pouch feels like.
No miracles, just method and patience.
Thanks Sharon for the info. I have an ileostomy & was diagnosed with pouchitis at NYU in July. I am trying low carb diet & no sugar. It is definitely trial & error.
Hopkins, are you talking about a loop ileostomy and an unused J-pouch?
Yes- My pouch was not functioning & in February I had my second ileostomy placed at NYU. My first bout of pouchitis started this summer.
I am a newbie at this. So much conflicting information.
Diet isn't likely to have much effect on pouchitis in an unused pouch. Are you sure it's autoimmune pouchitis rather than diversion pouchitis?
Scott, I am just guessing. I have an autoimmune deficiency and I give myself Gammagard infusions weekly. Can't get scheduled for a scope until October 17th & will have biopsies to get a definite diagnosis.
Thank you for responding to my post.
I agree with Scott,
Diet wouldn't effect an unused pouch...no food going through it so no "contamination" by the food...
So sorry, but I am lost for any ideas on unused pouches...
Keep calling to see if there is a cancellation...