Hello! Please forgive if I do this wrongly--my first post.  I'm 63, diagnosed Crohn's but turned out to be UC; I had my colon removed Jan. 2017 (2 years ago) and my J-Pouch surgeries June and August 2017, so it's been about a year and a half since my J-Pouch went online. My Question: should I go to a K-Pouch? I only discovered them (and BCIRs) due to this forum; I had formerly thought that if my J-Pouch went bad, my only recourse was my Ostomy Bag, which wasn't terrible but also not comfortable. My J-Pouch works, but now that I see this other K-option, I'm noticing my pouch doesn't work well.  First, I have to eat a very bland diet and I'm terrible at that, as a way of life for the next 20+ years..  (Not the only one, I know. With my Ostomy, I could eat a burger and fries with a milkshake. Not now.) Second, I still get either mild pain or horrible pain if I can't get to a toilet. Third, I poop often, and enough in the middle of the night that it disturbs my sleep (4-10 times a night).  I've just written my GI doctor to ask if Kaiser does K-Pouches.  Meanwhile:

Comments and advice on J-Pouch to K-Pouch? Thanks in advance!

Original Post

Six years ago, I had to have my J pouch removed for medical reasons.  During the 30 years I had the J pouch, I was able to adapt my lifestyle for the frequency, butt burn and occasional leakage.  It would be preferable, in my opinion, to try to save your J pouch rather than have another surgery.  There are many posts in this forum with suggestions that might improve the function of your pouch.

 I was fortunate to find an excellent surgeon to give me a BCIR and thus avoid having the bag for the rest of my life.  For me, the BCIR has given me a very good quality of life.  For starters, I only empty my pouch 4-5 times a day at my convenience, eat almost anything I want, and can do any physical activity I want. Although some people experience complications with these procedures, I was willing to proceed in light of the quality of life that most people enjoy with them.  Sometimes, insurance companies can be difficult to get approval for a procedure, particularly if the surgeon you want is out-of-network.  If you decide to proceed, be sure to get a surgeon who has done many of them and has a good track record.  If you would consider a BCIR, Dr. Don Schiller in Los Angeles has been doing them for many years and is highly respected.  Please feel free to send me a PM if you have any questions.

Bill

 

before thinking about a k pouch, i'd like to ask if you and your doctor have explored what could possibly be wrong with the j.  possibly pouchitis, or hemorrhoids, or pelvic floor disfunction or a host of other ailments.  you can research many of the symptoms and solutions on this web site.  

Welcome to the J-Pouch Group, Kirsten,

I have to 2nd (or is it 3rd?) the replies from Bill and Janet. First determine if life where you're at can be improved... this is another major surgery with a great deal of risk. Any doctor who can recommend the surgery would also first need to determine if you were even a candidate as it's not an option for everyone. If totally successful, it is still provides another new, imperfect lifestyle at best. 

You mention what you can/cannot eat. In general everyone's tolerance for certain foods and capacity to hold them improves with the age of the pouch and you are still in the relatively early years. Both the J & K are still "pouches" just with different "exits" so some problems can persist depending on the cause. Gas is worse since it can't be expelled without intubating. I eat a some things now that I hadn't, but there are new things that take their place so it's really a wash. All those lovely restaurant mashed potatoes with the skins mixed in, any dente vegetables or ones with hearty skins, leafy greens, hidden things in chunky mixes...all problematic for me. You will likely be surprised at what comes out undigested when you are face to face with trying to get it out through a Marlen 30fr catheter and its two very small holes. 

You also mention pain when you can't get to a toilet or before you have to go. That could be due to a number of things, those Jan mentioned, diet, inflamed rectal cuff, rectal muscle spasms, etc, for which there may be a remedy. I also had some pain before, but nothing like what I live with now. I take pain meds for chronic abdominal pain and rectal pain, which both become even worse if I don't get to a bathroom regularly or even immediately after I've eaten something that upsets my K-pouch. I'd hate for you to jump in only to find that your pain doesn't improve, or that it worsens as a consequence of the additional surgery or new complications.

As for sleep, no improvement for me on that end either. I've heard some people with the k-pouch say they can go 6-8 hours without intubating, but I have to go at least every 4-5 hours. If you are still going 4-10 times every night, you should definitely follow-up with a gastroenterologist experienced with pouches, as that is understandably not good. In addition to diet changes or treatment for possible dysfunctions, you might simply be able to take medications which slow motility or thicken output. Your doctor should definitely want to determine the cause, either to find a remedy or to know whether the k-pouch would be a fix. 

Lastly, when I had a J-pouch, I could technically use the bathroom whenever I wanted. I carried a makeup bag with supplies only because I leaked regularly and was always at risk of an accident when away from home. But now, I literally cannot use the bathroom without a catheter. They're not sold at the corner drugstore, at best it comes in two-days from a medical supply company. I have found myself 3-hours from home or farther on several occasions having forgotten my supply bag and immediately returned home in pain. I have also found myself in a public bathroom stall on numerous occasions unable to irrigate because I forgot a water bottle or had water but no syringe or enema bottle to get the water in the catheter. And forget about port-a-johns! Everyone is a little different, but you get the idea -- it's another major lifestyle change.

Reading postings from those with k-pouches on the forum would give you better insight into everything that comes with it. Everyone I know got a k-pouch because their J-pouches presented major health problems... enough so to warrant the risk of another major surgery with no assurance of lifestyle improvement. As for k-pouch or bcir docs, there is a list here on the forum people try to keep up. To date, I've never heard of a Kaiser doctor, but I'm not with Kaiser. Getting a continent ileostomy is not a common procedure -- we've got great docs in Michigan, but none with significant experience with continent ileostomies. I had to go to Cleveland Clinic to get help with my j-pouch and then eventually for my k-pouch surgery (a return to the ostomy bag was not a medically viable option.) I wish you the best of luck with your progress and hope you continue to find this group as helpful a resource as I have!

--Jennifer

Thanks, Jennifer; very helpful reply.  I now appreciate my J-pouch and all that goes with it in a new way, which is exactly why I posted.  If there is even a possibility that I'd go through that surgery and still have pain and broken sleep, I won't consider it yet.  It's still been helpful, because it's gotten me to actually pay attention to what I am going through, attention I had to put on hold for over a year because I still had to work so much that a lot of my experience was gritting my teeth and pushing through. Now I don't have to push through, metaphorically--still kind of have to literally (a bit of J-pouch humor there).

I'm also reassured by the idea that I'll be able to expand or even change my diet later, that my J-pouch is still young. That's hopeful and helpful.

Finally, thanks so much for the length of your reply. It was ALL good for me. Brevity may be the soul of wit but sometimes thoroughness is better.

--Kirsten

I am so glad you found it helpful, Kirsten. I was concerned it was too verbose, but thought I better post it as is or I'd wait to edit it and then forget to post it at all :-) All my major experiences with this disease have been emergencies, through no fault of my own, and it's been an especially difficult learning curve. I have often been frustrated to find myself in a new position with no help, no understanding of what was happening and then medical professionals that acted like, "what did I expect?" Not to be where I am! That's what I expected! As a result, in addition to experience, I've gathered a lot of health/medical knowledge in the past 10 years. I hoped my post would paint a realistic picture -- not positive or negative necessarily, just some possibilities to consider.

I am so glad to hear that you are able to focus more of your attention on your health now -- it takes up a lot of time and energy to keep up! And I am very hopeful that the attention will make a positive difference in your experience. Bless you on your road ahead! -- Jennifer

Thanks again. And I'm sorry you are suffering so much! It puts things into perspective for me. Yes: my focus now has to be on taking care of my body. (Yawn. I'm so tired of that. But it may get interesting in and of itself soon.) Again, very very helpful and a blessing in and of itself.

Hi Kristen,

Jennifer have you a really good idea of what life can be with a Kpouch! Of course all are different. I got my K after 2 Jpouchs.I was left with a severe motility issue and went from an altered diet to just a handful of items I can digest and/or pass through that 30 Fr tube. Jen is so correct about telling you that is the only way to pass gas also. All of a sudden your belly is huge and you are frantically looking for the John.It has now become problematic to get supplies in a reasonable fashion also.

I have to intubate 10 to 12 times a day. NO sleep,Can truly limit your life. It becomes quite hard to find restrooms to empty in and then clean up yourself and the equipment discreetly.I am now carrying a backpack with a medical tag so I can show that I need the handicap or family facilities. Not wanting to pile on the bad things, I will say, I push myself to enjoy all of life I can , the next step is probably not an option as the last time I had an ostomy things went quite poorly.

It really takes one to two years to be fully recovered from these huge surgeries, so give yourself lots of time, don’t make decisions without thinking a very long time. Jen said it correct, the medical pros treat you like you should have known what to expect.

When truly, they don’t know themselves how we will turn out, if their honest. I’ve been told so many times that they are learning from me 🤦‍♀️, just what you need to hear, haha.

Well, chin up , ( to us all) you have time to improve and the numbers are on your side.

Enjoy life best you can🤗 and I really wish we had some support groups around 

Thanks for everyone’s info 

Jan

 

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