I'm doing well after my Jan surgery, but dealing with bouts of pouchitis. I'm noticing it usually comes about or gets worse when I eat sugar or certain foods. Anyone else have this problem?

I miss raw veggies so much! I can eat strawberries, raspberries and squash, but I'm scared to try anything else. Even cooked peppers w/o skins can be a bit difficult going through my Medina cath. I think my body just doesn't digest veggies the way it used to, because I can "see" the veggies in the output now! Any good suggestions for me to get peppers (my fave) and other "tough" veggies back in my diet?

ALSO, I've been flying to my parent's house in CA and going to Scripps to deal with my pouchitis. It's easier than going back to Cleveland since I have somewhere to stay and it's relatively easy to see Dr. Salganic in emergency situations.

But I do need a 'last resort' for Omaha, NE. I've called so many GI docs, and some of them didn't even know what a K-pouch was!!!! I'm taking a chance with a Dr. Thorson that I'm going to see on the 24th, but I have no idea if he even knows how to help if I am in an emergency situation. Does anyone know a GI doc or surgeon that I can trust to understand k-pouches in Omaha? Doubtful, but I thought I'd try and ask.

ALSO, I hate that my pouch seems to puff out after a meal! I know that I have a very small frame and the pouch expands outward, but dammit, I want a FLAT ABDOMEN! It just looks kinda weird having that little pooch after I eat. Anyone else have that problem?

Hi...sugar and simple carbs can cause gas for some, or milk products if lactose intolerant...it's really about what works for you. LGlutamine is a natural healer for the small intestines and may work for you (I take it every day). Others take Flagy, Cipro etc. But sometimes I think it's not really pouchitis, it is just a bit of food poisoning or something.

I didn't have a doctor who was aware of Kpouch I met my GI dr during a hospital stay at St. Josephs in Apr 08. He understands the pouch/valve and has taken good care of me. Keep trying to find one. I'm his only kpoucher of course, but he has alot of jpouchers and is very gentle doing a scope through my stoma (uses a pediatric size tube, not adult).

Yes, your stomach is going to pooch out when the pouch is full. I used to be skinny with a very flat abdomen and just emptied it more then normal if out somewhere that I cared enough about it. Though, I don't find it any worse then when I had UC bloating (or during my periods).

Alot of folks eat almost everything - it's about chewing chewing chewing until it's mush. Skins will stick along the catheter that is the only real reason folks avoid it. You can always juice your veggies or make soups. Celery is the only raw veggie I avoid..a freakin nightmare.

I'm glad you're adjusting, though. It takes time...I'm at almost 30 years still get surprised every now and again.

Pouchitis is generally not caused by foods, but various foods can worsen your symptoms. Sugar in high concentrations promotes diarrhea, so that is why that can be problematic for you. Pouchitis only exists if there is inflammation.

Anyway, aside from the challenges of what foods you can eat on a mechanical basis, the Kock pouch has pretty similar issues as the j-pouch. It can be examined by scope, just like a j-pouch, but your GI should educate himself regarding the structure of your valve. Having your surgical records sent to you new GI would be a good idea, so he will be able to read about how your pouch was constructed.

From what I have read from others' comments, as long as you avoid tough skins and stringy foods, you should be OK. However, you need to be diligent about chewing your food into pulp before swallowing, otherwise, chunks will clog your catheter. You actually digest the same as before. It is just that without the colon, it does not get further digested by bacteria as much and compacted into firm stool. That is why you see the remains of plant material. No human can digest cellulose, which is what makes up the cell walls of plants.

Jan

It's odd though, since I never had problems with any veggies with my regular ileostomy (if in moderation), I guess I just notice the bits of onions and stuff now that I have to watch it pass (and clog) up the cath. Is it possible to end up with a very serious problem if a veggie won't pass through the cath?

I'm able to insert my cath then pull out and stubborn large peices of food will be partly in the hole of the cath and the rest of the chunk outside of the cath. I'll find alot of these until they are all out. I have had no problems for 30 yrs...just takes time to empty. I find some peices from something I ate the week before or month before. It doesn't hurt to have peices of food sitting in your pouch.

I've also had a huge chunk of food come out of my stoma during the day...it gets lodged at the valve and then moves out on its own. Don't be alarmed..

I remember that Dr. Fazio told me that he had been called upon to correct emergencies from mushrooms more than from any other food item. I haven't tried a mushroom, either fresh or cooked since!

It's good to know I can eat most things if I chew well, but often it's just not worth the bother of a long intubation process. I hate having to get up and rinse out my catheter when it gets clogged. And to do it repeatedly is a bore. When I want the taste of something like red cabbage, I put it through the Cuisinart. It may look awful, but it tastes the same.

I am at my 30 year annivesary of (George the 1st!)my pouch and have found that the best little gadget in the world is the hand held electric thingy that you can plunge directly into a pan, pot , bowl or jug..;takes seconds only to mix or liquify fruits, veggies etc...puree soups or yes, make red pepper dip (add a touch or yoghurt to the peppers and spices) gives me the flavour and none of the yuck in the tube...hubby is used to seeing me mix up my dinner ( I am a really lousy chewer and have had a number of tooth problems lately) ..
On my hit list of not to eats are: pineapple, mushrooms (the chinese ones are even worse!), all peppers, leaks, anything but the very tips of the asperagus (makes me look like a real snob! )and large qunatities of salad...even well chewed turn into a 'ball' at the end of my tube and the Does not Come Out!...I litterally prolapsed my new valve that way...I went on a romaine lettuce frenzy 2 months post op and yanked my valve right out of my pouch! (ouch )
Popcorn amazingly enough works for me but not the hard kennels..just the fluffy part (snob again?)..it is all trial and error (ouch again) but it is also how mmuch time you care to spend with tweezers or fingernails plucking fiber out of your tube in a public toilet! usually it is enought to turn me off of certain foods...
By the way....the flat stomach problem...I had washboards for years after George the 1st....prune juice and coffee every morning flushed the pouch right out (I was always squeaky clean afterwards)..just remember that it takes about 3 hours to take effect....when traveling I used to keep a small bottle of it on my bedside table and take a few swigs at 4am...so that at 7am I was up and go..go...go...and go!
Milk product make a lot of us bloat and pizza is a toxic chemical in my house...but a little cheese sprikled on the pasta is fine for flavour (goat and sheep cheeses work great too)...
Just keep testing and keep a log going on what works for you...and share your successes with us too..
sharon

It doesn't seem to matter how much I chew veggies and fruits I still get clogged cath - what a pain. Yesterday it was cantaloupe and It was so ripe and soft and I chewed and chewed but it didn't matter. what a nightmare to get back out again flush and flush and pull it out and remove stuck pieces and flush and flush, took me like 20 mins got get it all out. I guess I just ate too much of it but it was so good!

I Don't eat many carrots (cooked even) cause they just don't break down enough. I occasionally have a cole-slaw type salad like Chinese cabbage salad but in small quantities.

yeah and forget the flat belly I look like a swallowed a watermelon once that pouch fills up!

Sometimes its frustrating but... well my quality of life b/f the k-pouch was total crap *no pun intended* so the sacrifice is well worth it!

its just trial and error, eventually you figure out what you can eat and in what quantities and go from there. I figured I'd never eat corn again but I can eat a whole ear and don't have a problem so you never know...

good luck!

--
katie

Katie, you ate a whole ear of corn!?! you're crazy girl! I would never even dare.

But as most have already said, i kinda weigh out the pros vs cons. the internal conversation in my head goes a bit like:
"ooh...look at all that watermelon and pineapple, i bet its super juicy and cool...and its so hot out, it would be so refreshing.....bbuuttt...becca do you REAAALLY want to spend an hour in the bathroom later? Or make way too many more trips than your normal 3 or 4 times a day?...eeehhh...my jaw would get tired chewing all that enough...ah, i'll just take a bite."

I love cooked carrots, and i sometimes just can't resist a slice of fresh green or red or yellow pepper, or broccoli floret. I guess the sad thing is, i'll eat a little bit here n there, but i'd never eat a substantial quantity. hell, its usually limited to 1 or 2 pieces of raw veggies, or maybe a teeny bit more of some cooked veggie. It just seems like the more you eat, the more you're askign for it.

I haven't had a salad in about 3, going on 4 years. (well, traditional salads. I'll eat a tomato-cucumber-basil type salad, or with feta and olive oil. greek styleee. But again,i dont eat much in one sitting,cuz i'll be sorry later)

i once ate a wwhoooolllee bunch of sour patch kids all in one sitting (on a road trip), and not only did i wreck my tongue (stupid citric acid) but boy was that fun later in the day. talk about taste the rainbow. and some interesting looking chunks coming out.

but all in all, i am a foodie. and get ssssoooo pissy at all the limitations on my diet. It seems like the only fool proof, no-thinking foods to eat are the worst for you nutritionally (mac n cheese, plain ol' bread n meat. mashed potatos. pureed soups like broc-cheddar types. or potato chowder types. or just any processed food. i miss my former diet of fresh veggies n fruits without having to think twice about inhaling a good macintosh apple in two bites, or needing lunch and being able to absentmindedly just order a big ol' tasty looking salad.

and that starts me wondering, if we see all this plant matter coming back out, and people can't digest cellulose etc. is it worth it nutritionally to put up with chewing your ass of for one piece of veggie? Are we gaining the nutrients from it, if it comes out almost exactly the same shape it went in?

If i chew to mush a big ol thing of carrots, but it all comes right on out intact, did i benefit at all from the vitamins, etc in it?

I love that we have this forum to share! 30 years ago I felt so alone!

It's also funny how many of us can eat salad and other veggies. In the first few years I was afraid to eat anything. Now I eat pretty much all except things we've shared here such as mushrooms (although others say they have no problem if chewed), anything stringy (but I can do watermelon!) Go figure.

Sometimes it's about rotating your foods too as too much fiber just makes the poo damn to thick!

Yes, you do get the nutrition of veggies and fruits, even though they seem to be unchanged coming out. Trust me, people with colons do not chew any better than those without.

And I guess if you want quantity, a juicer or blender would work well. At least you'd get the flavor.

Jan

Hi Jan...that's pretty funny and true. If those with a colon actually looked through their poo - god knows what they'd find!

Yeah, well, being a nurse, I have seen more than my share of poop from numerous folks.

Jan