K-pouch vs. ileostomy vs. current status

While a K-pouch might work for some, I'd be hesitant to get one. My reasoning relates to the fact that there aren't many doctors who create these and there aren't many that can fix related problems that might creep up. I wouldn't want to have to travel to have a problem resolved. Rose

Debbie--First off, I am sorry for what you are going through and also what changes you need to face.  A couple of thoughts to get you started.

Reading the posts on this site--especially Sharon's posts--will provide you with an excellent background.  Remember people who have--or had--problems tend to be on the site.  That skewing implies you read about problems--but also resolutions.  Despite that drawback, it also informs on what you are getting into.

When I was 68 Dr. Dietz created my k-pouch from a failed J, failed due to chronic pouchitis.  I am returning to him, now that he is in NYC.  So yes, he is excellent.  Perhaps he can create a new J pouch.

Whether you end up with a K or ileostomy, both take additional time no different than what you are now experiencing (I acknowledge you have other problems).  Others can weigh in on this, but for me the K takes more time than ileostomy.  That said, I prefer the K.  I'll let others weigh in on their pros and cons and will chime in later with more of my thoughts.

Peace, Jan

Hi Rose Violet - Good point - I am concerned about that.   Do you have a k-pouch and if s have you had any trouble getting to your surgeon if needed?

Hi Jan- What do you mean by “both take additional time”?  Do you mean as compared to a properly functioning j-pouch?  Sadly that is not an option and Dr. Hull did not think I am a good candidate for a j-pouch redo (and since it was already redone once I’d rather skip that process).

Thank you both very much,

Debbie

I had a j-pouch for 30 years but had it excised a couple of years ago when dysplasia kept showing up in scoping biopsies. Didn't want to deal with biologics. Don't need any meds other than occasional loperamide. No more scopes, no more G.I. visits, healthy small intestine. Rose

I assume that means you have an ostomy and not a k-pouch?  Happy with your choice?  Doesn't bother you?

Thanks again,

Debbie

Yes, have an ileostomy. Am actually happy that I got up the nerve to remove the j-pouch, which served me well but was plagued by chronic pouchitis, which led to the dysplasia. Am okay with the ileostomy. Didn't wear a support belt at first so got a hernia and had that repaired. Since then I've worn a support belt and have had no further problems. Am not even aware that I'm wearing the belt and I don't think about the ileostomy all day except when it's time to empty. Rose

I had problems with my J pouch that made its removal necessary.  I was 68 when I got  my BCIR (very similar to a K pouch.  I am on year 12 with it and have no regrets for my decision. I lead a normal life, eat almost all the foods I like and can participate in every activity that I enjoy. I published an article entitled, "Researching My Options" in UOAA's magazine, The Phoenix. You can read this article on the Quality Life Association's web page (www.qla-ostomy.org).  The direct link to the article is: https://www.qla-ostomy.org/ost...arching-my-options/,  Please feel free to message me if you would like more information.

Thank you.  I’ve read your article.  Any downsides from your perspective?  Which foods can you not eat? Have you needed any revision surgeries?  Who did your BCIR?

Thanks so much,

Debbie

The main downside is that some vegetables do not digest well enough to pass through the catheter when emptying.  This involves removing the catheter, removing the offending pieces and then re-inserting the catheter.  Emptying the pouch takes a bit longer.  I still eat corn, asparagus and mushrooms knowing that they may clog the catheter.  I have had no revision surgeries and Dr. Ernest Rehnke was my surgeon. He is now retired.

@roseviolet posted:

While a K-pouch might work for some, I'd be hesitant to get one. My reasoning relates to the fact that there aren't many doctors who create these and there aren't many that can fix related problems that might creep up. I wouldn't want to have to travel to have a problem resolved. Rose

I was going to write this comment you beat me to it!

THIS COMMENT is spot on!!

@roseviolet posted:

I had a j-pouch for 30 years but had it excised a couple of years ago when dysplasia kept showing up in scoping biopsies. Didn't want to deal with biologics. Don't need any meds other than occasional loperamide. No more scopes, no more G.I. visits, healthy small intestine. Rose

I think we all need to get scoped at least every 3 years.

Mary 2017, what exactly is there to scope of one has not colon, anus or rectum?

@roseviolet posted:

Mary 2017, what exactly is there to scope of one has not colon, anus or rectum?

The small intestines of course. We still need to get that checked. I get mine checked through the stoma hole

Debbie--in answer to your questions....  the k requires time because you need to eliminate 6-9 xs daily and I irrigate the pouch almost every time.  If I happen to eat I shouldn't have--think anything that doesn't digest, such as mushroom, corm, peas, any insoluble fiber fruit or veggie--or didn't chew well enough then the evacuation process can be more complicated.  The ileostomy requires time as need to change the bag and part that attaches to body.  I had to deal with problematic skin irritations due to the adhesive, but that's not everybody's problem.  

Greater food selection with ileostomy.

The post-surgery recovery from ileostomy is much less time than the K.

While I live in Boston and Maine, and travel to third world countries alone, it doesn't bother me not to be near a K specialist.  I understand it would bother others, so on that matter one needs to understand their tolerance.

I still prefer the K to the bag.  It is a very personal decision.  Sorry a J revision isn't in the cards.  Keep us posted after your visit with Dr. Dietz.  Peace, Jan

Hi Jan- Thanks so much.  I too am worried about skin issues as I used to get very yeasty under the bag during the two times when I had a temporary ostomy.  As a swimmer I'm also concerned that water will get under the wafer, adding to the yeast problem (per Dr. Hull). A very wise person suggested I try wearing a bag filled with applesauce before making the decision and I will, indeed, try that.  I am surprised you have to empty the k so often as I was told 4x/day.  But I have very high output so am likely to be like you especially since I love to eat fiber.  I live in California but spend summers in New Hampshire so perhaps we will meet at some point.  I very much appreciate your input.

Best,

Debbie

I've had my k-pouch for 47 years with several revisions to the stoma and will try to keep my pouch as long as possible. I recently moved to Cleveland where I grew up, as my colorectal surgeon in San Diego will be retiring soon, and knew there were colorectal surgeons here who can do those revisions if needed, my doc here is Dr. Ron Charles, I suggest you look at his bio, very impressive, good news is he's staying put in Cleveland and young enough not to be retiring anytime soon!

I’ve never had a J pouch or Brooke Ileostomy, the K pouch was my original surgery over 42 years ago. I’ve had a few revisions (and would do another if need be). I empty 3-4 times a day and flush the pouch every time. I can be in and out of the bathroom in 5 minutes. There are occasions when it does take longer or there is an extra trip or two, usually if I’m sick or I ate something that I know will require a little more time, but I can typically choose when I want to eat those things and make sure it is convenient for me. Since there are a limited number of surgeons with the qualifications and experience to construct the ouches and valves, there will be travel involved, which can be expensive.

Hi DGS and Kim -- Thanks so much for the info.  I'm going to see Dr. Dietz in NYC next week (I'm in the Bay area).

I’ve never met him, but many folks in the Facebook groups really like him. I use Dr. Kiran in NYC.
best of luck at your appointment!

I thought a K-pouch needed to be emptied every 3 hours while awake?

No, definitely not. Immediately after surgery the doctor will give you a schedule and instructions for the post op period. During this time, the pouch will settle in and expand. So immediately after surgery you will be emptying frequently. After a while you will be emptying on as needed basis. For me, it depends on what I eat. If I eat sensible and cook at home, I empty 3 times a day. If I eat like a heavy dinner restaurant meal like something spicy or greasy, then it will probably be an an extra emptying that night. Sometimes with foods that cause gas, there might be an extra time or if I have a couple of glasses of wine or a couple margaritas. If you have the stomach flu, you will empty extra times.
But my normal day is 3 times, sometimes 4.

I posted above and anyone with a K-pouch can empty as infrequently or frequently as needed,  I would hate to think that people who empty much more frequently are doing it 'wrong' or something is not right with their pouch or stoma. After 47 years and a few revisions in between and not wanting to go through a potential revision, I empty often. Every body is so different, what works for one person may not work for another. I wish there was a perfect answer for your concerns, but like life, it's trial and error.

DGS- totally agree. Not everyone has the same experience. There isn’t a right or wrong. I didn’t mean it that way.