Hi all,
Well I had my consult with Dr Fazio today. He agreed with Dr Remzi that my fistula really can't be fixed and even IF it could I would have poor pouch function. So thats my bad news.
My "good" news - trying to see the good in never going to the bathroom like a normal person again - He said I make an excellent candidate for the K-pouch despite the crohns diagnosis. I am happy about that because it seems a much lighter future without a plastic bag permanetly attached to my side. He said because of my age, the stage and location of the disease, my motivation that it would be a very good option for me. With the advent of the biologics my chances of keeping the k-pouch are much better. And of course, I'd have it done at CC so that would be huge. I've had 2 Remicade infusions and he thinks I should have 2 more and then I could get my K-pouch. Either he or Dr Remzi will do it. I see Dr Remzi again in 3 weeks and thats when I have my 3rd Remicade infusion so we'll get the final word on when then, thinking late spring, early summer.

While I'm sad about losing my j-pouch I am encouraged because so many of you just LOVE the k-pouch and I will hopefully be joining the K-pouch ranks in a few more months. I'm already trying to train myself to CHEW CHEW CHEW just because of my ileo. Any other advice? Foods you cannot eat with a k-pouch? Help for getting used to the internal pouch? I've been reading these forum posts since Dr Remzi mentioned the K-pouch back in Nov and I'm trying to soak it all in.

thanks all of you

--
katie

I'm sorry that your J-pouch can't be salvaged.

I am happy that CC thinks a Kock Pouch would work for you. Good luck with the Remicade treatments and keep reading the posts. Learning to chew, chew, chew is "major" with the Kock Pouch...along with drink, drink, drink.

Mushrooms, corn, celery, watermelon, potato skins and gas producing foods are foods that can cause trouble. I eat corn and cooked celery and mushrooms (mushrooms are good at plugging up the catheter). I do avoid watermelon and potato skins...for some reason these 2 things cause me too much trouble. Watermelon for some reason gives me blockages. Cocoanut gives me cramps unless it is chopped up like in Mounds and Almond Joy. I'm not too much into sugar these days or junk food unless it's a pizza .

Does the Cleveland Clinic give out a book on thickeners, thinners and gas producing foods? The Mayo Clinic did when I had my Kock Pouch done in 1978 and it was a big help to me. In the beginning with the Kock Pouch you should eat easy to digest foods and go from there, one new food at a time.

NSAID's are an irritant to my digestive system, like ibuprofen, etc..

I'm big on probiotics, acidophilus, is cheap and works for me. I eat Yoplait yogurt, it has live culture bacteria, and tastes good; no sour taste. I take vitamins, calcium....flax seed oil is a good anti-inflammatory supplement 2/1000 mg a day. I use olive oil as my lubricant for my catheter, now I use a dropper to put it on my catheter, so the olive oil doesn't get contaminated by the catheter being dipped into a small bottle. I use washable nursing pads or I cut a serenity pad in half. Antihistamines help with the drainage of clear water and mucous from the flush stoma, which will be more at first, if this is an issue for you.

I'm a Weber and Judd catheter user...love that catheter!!!! It works great for me.

Follow the schedule for emptying the Kock Pouch so it stretches to it's capacity. I sleep all night long, which is big, without having to empty my pouch in the middle of the night. I try not to eat 3 hours before bed, or try not to eat alot at that time period.

Each poucher will tolerate different foods and drinks. We each will have our own way of doing things and our own preferences for supplies, catheter and patches. It's good we come here to share our experiences and ideas. Good luck, Knowledge Is Power !!!

This message has been edited. Last edited by: Jasmine,