K pouch help!

Hey Jenny,

I'm happy for you to get the k-pouch I hope you have great success with it.  I've had mine for 15 years now.  I think you will find that there is a great variety in what k-pouchers can eat/tolerate.  I believe it has more to do with how many intestinal surgeries you've had less about the k-pouch itself.  You will find, however, that no matter what you eat you will have to chew chew chew or it will clog up your catheter which is a big pain. 

I cannot tolerate eating many fruits or veggies.  So I don't eat more than 1-2 servings a day. I started getting a lot of small bowel obstructions and my GI told me flat out to stop eating them or I'd keep ending up in the hospital.  But that really has very little to do with the k-pouch itself and its more about adhesions from multiple surgeries. 

Having said that, I have eaten pretty much everything and have found primarily that some things just aren't worth the hassle of getting them back out no matter how much I chew.  Sweet potatoes for instance.  I love them, but they are so fibery that it turns my output into very thick sludge and i have to irrigate and irrigate and irrigate to get it all back out again.  Like trying to suck sweet potato through a straw..  not fun.  so, I don't eat them anymore.  I cannot eat the skins on most fruits or veggies.  I can't chew it small enough, I don't digest it and it clogs up my catheter.  Again, its more of a convenience thing.  I'm just not spending 20 mins in the bathroom trying to get it all back out again.   I can eat raw spinach, like in a salad, with no issues, but once its cooked I can't seem to chew it well enough and then it comes out in long stringy sections (sorry if thats TMI)

I have no problem with grains unless they aren't cooked well done, and I eat plenty of nuts, just chew thoroughly.

My suggestion to you is to reintroduce fruits and veggies one or two at a time, take your time and see how it goes. 

good luck!

--

katie

Thank you so much! You answered EVERYTHING I was worried about. I am grateful for your feedback as I am terrified. I’ve had an ileostomy for 3 years. They closed it last February to see how I did and it didn’t work out so well. 20-30 trips a day…you get it😂. I knew nothing about irrigation! I’ll do some more research. Thank you!💙

Jenny, when I mentioned irrigation I meant that I have a 60cc bulb syringe and a cup of warm water.  I fill up the syringe and squirt that warm water up the catheter and into my k-pouch to help loosen the stool.  You can't feel it    There is a large Facebook group of k-pouchers and if you join that group you will get many more answers to your questions.  I don't think many people check this website anymore. 

Thank you again! Couldn’t find the fb page. Only j pouch. I’ll keep searching!🥰

https://www.facebook.com/groups/2303404103235641 

Ostomy, J-Pouch, K-pouch Education

Also look for BCIR (Barrets continent intestinal reservoir)

Some of these sites are private and you will have to ask to sign up.

I hope this helps.

Hmm .. try this

https://www.facebook.com/groups/30300094937

I have had a K-pouch for 46 years with very few problems.  I don't eat corn, peas or mushrooms (they don't break down & block the irrigation tube).  Same for asparagus & other stringy vegetables  and potato skins.  I don't do well with beans, lentils & the like and don't eat gassy vegetables (broccoli, cauliflower) when travelling. I also drink a lot of water (minimum 2 litres daily).  Good luck!!

Thanks everyone!🙏🏻🙏🏻🙏🏻

I’m going to try to attach screenshots of the two most active FB groups. They are good for information- remember, most of these folks are new to an K pouch, or have had one for awhile and are having issues or complications, which is why they are posting. Besides those of us trying to offer them advice or share our experiences, there are many folks with no complications that don’t participate in the groups. I just didn’t want you to think that the average seasoned  k pouch patient is dealing with a ton of complications. I’ve had a K pouch for 41 years (since I was 21). You can request to join these by completing the membership questions.
are you having your surgery in the USA?

Kim--thanks for posting these sites.  In order to join one needs to be on Facebook, which I am not.  Any way around this?

Than ks also for mentioning that participants on this site are either newbies or ones seeking help for problems.  In the end we have all been there for each other.  This site has helped me in countless ways, and thanks to all of you.  

Jenny--I too am curious where you expect to have surgery.  Dr. Dietz--Cleveland--did mine and every NYC/Columbia doctor since has commented on how well my pouch was made.

Agree w comment on eating raw spinach, but not cooked.  Same with carrots.  Asparagus, only the tops.  Other veggies are doable if overly fried/burnt.  Peas never.  Mushrooms, only if pureed.  Corn I slice the kernels in half after cooked.  No to sausage, unless casing removed.  I'm fine w pasta, others find output is paste.  Paste it is with french fries.  Consider homemade veggie smoothies--romaine, cukes (like blueberries high in antioxidants), fruit of my liking (frozen), ginger and coconut water, which gi tract absorbs better than water.  I make large batch and freeze

One finds their own food grove, often by passing into the wrong one.

Peace and good health to all, jan

Thanks for this great information!! I’m having it in ZRY Dr Kira at NYP

☺️

Sorry. NYP in New York!

Dr. Kiran is my hero. He did a repair surgery on me in 2019 and I’ve been doing great ever since. He has a great Team! There’s also an organization called Quality Life Association or QLA for short. There’s a small fee for annual membership. They have a newsletter and an annual conference. This year’s conference was in Florida. Several of the pouch surgeons were guest speakers again. It is really nice to be in room with them and while they don’t have a lot of time for one on one discussions, they are very supportive and approachable. Dr’s Kiran (NY), Ashburn (NC), Shawki (MN) and Miller- Ocuin (OH) were speakers at the conference in September. Miller-Ocuin works with Dr. Dietz. Unfortunately, the Facebook groups are the best source of on-line support. They are very active groups and a good source to search for information using key words.

Next year’s QLA conference will be in Cleveland Ohio. The hotels have become very expensive for our conference’s so the organization is trying something new for 2024 and Dr’s Dietz and Miller-Ocuin have offered use of University Hospital’s conference services. There is a hotel across the street from the hospital where folks will be staying.

Hi,

I've had my K pouch for 45 yrs now (yikes!) and have had different periods in my life where my diets has varied.

Firstly, your best friend, at least for the 1st year, will be an immersion blender. The hand-held kind that allows you to blend anything you like into a purée or a soup. It chops up chunks and breaks down fibers.

Depending on the condition of my pouch at the time, I have just turned my fruit salads into smoothies and my vegetable soups into creamed soups (without the cream!).

I do better with whole grains rather than white bread and too much potato or white starch is harder to evacuate than fiber. It thickens the output.

I eat tons of nut butters, all meats & fish, had cauliflower and pumpkin for dinner yesterday.

Just take it slow and try experimenting with small quantities of anything first before you dive into it!

Join us at poucherlifestyle  (the group) on Facebook if you like....

Sharon