Re: Considering K-Pouch

I have a BCIR which is very similar in function to a k pouch.  I have had mine for over 3 years and am very satisfied with the quality of life it has given me.  Here are my responses to your questions:

1. How big is the stoma?  Mine is about ¾ of an inch wide ad flush with my skin.
2. Where is the stoma usually located?  It is on the right side below my belt line, just above the hip bone.
3. How big is the catheter?  Picture an 18 inch long, ¼ inch diameter clear plastic tube like you would get in the hardware store. It can easily be rolled up and slipped into your pocket or even in your sox.  A small flexible case also works well.  It is not necessary to have it on your person at all times, just available should you need it.  You can delay emptying your pouch for an hour or so if needed.
4. Will I need to carry lubricant wherever I go? Are there any other supplies I will need to have on hand?  I carry just the catheter and a small dressing in my small case, but in my car I have a larger case with a catheter, lube, a 60cc syringe for irrigating my BCIR (but have not had to  use it) and several dressings.  I generally have not had to use lub when out and about, but occasionally pus some saliva on the catheter tip.  The stoma usually has sufficient moisture to allow easy insertion of the catheter.
5. Is it possible to empty the pouch without using water? If I need to empty the pouch quickly while I’m out and about, is this going to be a problem?  Generally, no.  The only time I have found it necessary to use water when emptying my pouch is when the contents are thick (foods like mashed potatoes, pasta, etc. cause this).  If your stool is not thick and your catheter is no clogged by food particles that don’t digest, you can empty in a couple of minutes.  You don’t have to empty the pouch completely if you are in a difficult situation (e.g. someone pounding on the restroom door).
6. Will I still be able to use public restrooms or even outhouses if need be?  Definitely, I do it frequently.  If water is not available to clean the catheter (outhouse or out in the woods), I just roll up the catheter, wrap it in TP and clean it when I get home.

You can get lots of information on both the k pouch and BCIR on the internet.  Personally, I would go with an end ileostomy only as a last resort if everything else failed.  It is great to not have to buy all those expensive ostomy supplies (which can cost under $200/year with a k pouch) and have to deal with other issues that may arise with an ileo.  If you proceed with the surgery, make sure that your surgeon has successfully done many of them.  Good Luck!

Bill

I recently had a Kpouch done at Cleveland Clinic & it's the best thing I ever did! I hated my ostomy (like Bill mentions, the cost alone was high) along with skin issues, leakage, it just didn't work for me. Bill explained the Stoma & emptying perfectly so I don't have much to add. I would also emphasize finding a very experienced surgeon to perform the surgery. I would also emphasize researching the K pouch or BCIR thoroughly as it isn't necessarily for everyone- it takes commitment to take care of your pouch & valve; any issues normally require surgical repairs. I would typically recommend the Clinic for a Kpouch but the top 2 Kpouch doctors left, so it may take some research depending on your geographic location. Use the Kpouch Korner forum too, wonderful information from experienced Kpouchers.  All the best in your decision! Kara

Hi nomoremeds,

Although Bill did a great job I am going to add my 2cents.

My stoma looks like a little pink dime, just below the pubic line and very discrete.

I cover it with folded up kleenex that I keep in my pocket or purse.. no one questions kleenex. Paper towel works great too.

If you want to keep your tube in a pocket then zip locks are great friends....diposable and useful when you can't rince the tube. 

I keep a baby sports tip water bottle in my bag. Makes it easy to rince things when there is no sink. I can fill the bottle at a fountain. Or a sink...no problem,  no questions. 

I have been camping, traveled through Europe and other parts where hygiene and water were rare...I take my precautions, eat low fiber, high protein and drink juice to keep things liquidy.

Makes for easy intubation.

I don't always use lube but use the mucus like Bill or use tap water to keep it easy. 

I am a professor and use public toilets all day, every day...just fill my little bottle and go into the stall.

I keep tools for years, hide my stuff in a pencil case and unless I have a problem I do not see a specialist. 

Hope that this helps.

Sharon 

My two cents. 

If you have doubts go with the bcir or the K. 

The end ileo.... well..... It's the end.  It's what you will have the rest of your life.  I have an end ileostomy.  I'm very happy with it.  But I know there is no going back.  That doesn't bother me.  Use what options you have. 

Good advice was given.  With good descriptions of what you have to do. 

If you have good insurance ileo supplies are not that expensive.  I have good insurance.  Heck.  I've only had it nine months and I have a years supplies of appliances and supplies.  I just pay a small deductible and I get so much every month.  Twenty bags and wafers a month.  I only use eight a month so I am stock piling so I won't have to buy or pay my deductible next year.  

I am very fortunate.  It works fine for me.  Some hate them.  Have skin issues but I think no matter which way you go there are situations that you will have to deal with. 

Good luck.  We all wish you the best. 

Richard. 

An end ileostomy does not have to be the end of the line (pun not intended).  A significant percentage of folks with a k pouch or a BCIR have converted from an end ileo for a number of reasons.  The main qualifications for conversion are having sufficient small intestine to construct the pouch and the absence of medical conditions like Crohns.

It's the end for me.  I'm done messing with it. 

This is the first time in four years I have not been to the Dr's office and or hospital every other week.  9 months.  I am free from all that stuff.  I just change every four to five days and I'm done.  No drugs.  No Dr's.  No hospitals. 

I never expected this.  It's wonderful. 

I am in a good place.  

And after all.  Isn't that what we are all looking for?

Richard. 

Hi all, this is my first post i joined today.

i have been struggling with colonic inertia i am 46. I have a conventional ileostomy since February this year.  It's good I don't have to spend hours on the toilet to have a bm anymore. But I still get bloated and pelvic pain sometimes very bad. My surgeon warned me that this might happen. The next step is a proctocolectomy removal of entire colon and rectum, which I finally agreed to. 

I went to another surgeon for another opinion, he said I'd be a good candidate for K pouch. I looked this up before but heard horror stories.  He said there have been revisions and most people are satisfied. I am encouraged from what I read from people's experiences and willing to give it a try. 

I heard that the main complications with the are slipped valve  and pouchitis. As for the pouchitis the dr. Said most people are prone to this if they have existing ibd which I never had. As far as valve slippage 50 percent of k pouches may experience this. The larger chance if you are overweight I am only150 lbs.  

Part of me thinks I should leave well enough alone and keep the regular ileostomy. I can easily handle it, but it can be annoying, I do get occasional sores and rashes which are painful. So, right now I am willing to gamble a little bit and do the K pouch. The dr said if I have difficulty, I can go back to the external pouch. What does the community think?

Todd

Welcome to the forum, Todd.  One thing to keep in mind is that these forums are a good place to come with pouch problems, but the majority of people with properly functioning pouches seldom visit here.  Your surgeon has given you good advice about the k pouch, but his estimate on valve slippage for k pouches may be on the high side.  That complication is resolved by surgery.  A positive factor for getting the k pouch now is that there is usually just one surgery in which the colon and rectum are removed and the k pouch is created.  A small percentage of k pouches ultimately have to be removed and an ileostomy created, but I believe that risk is well taken in light of the quality of life you will get.

I have a BCIR, which is similar to the k pouch and has worked out very well for me.  I do not have to deal with the issues that many people have with ileostomies. There is an excellent web site for the BCIR (www.bcir.com) which would supplement what you already know about the k pouch.  For either of these procedures, you will want to select a surgeon who has done many of them.  Best of luck with whatever option you select.

Bill

Hi Todd and welcome!

I had Kpouch surgery in December 2015 and absolutely love it.  My valve did slip in March and I had that corrected in July.  I have no regrets getting my Kpouch even with the valve slipping.  I encourage you to read, study, educate yourself on the Kpouch or BCIR - the more you learn about it, the more you can understand the commitment and care.  This forum is a wonderful place to start, but I also read articles from the Mayo Clinic, Cleveland Clinic and browsed the BCIR website.  And if you end up liking what you read, ensure you find an experienced surgeon.  That is essential! As you stated, any repairs needed with the Kpouch are usually surgical.  And valve slippage - as I understand - happens to approximately 30% of patients.  But all in all, it is an excellent option as opposed to the ostomy.  The supply cost alone is so much lower and skin issues are minimal.  Keep reading and browse the Kpouch Korner that deal with specifics of intubation, irrigating, diet...I found it to be so helpful.  All the best to you in your decision. Kara

 Todd – – I checked where you live, NY.  you  could see Dr. Kiran at Columbia Presbyterian. I had my surgery at Cleveland clinic, but I am now seeing Dr. Kiran for annual check ups. And very pleased with him.

I concur with what Bill and Kara have  written, Especially going over old posts on this forum.

 The surgeon, Dr. Dietz, had said the k pouch failure rate within the first year is 10%.  that  is a different statistic from valve slippage over a lifetime   I suspect that the 50% figure is dated. Surgeons who are well-versed with the surgery have a much much lower failure rate now  

 Keep us posted. It was a tough decision for me and looking back what helped  me coming to a conclusion was getting information from very knowledgeable doctors.  Janet

To add to Janet's post: I initially consulted and worked with Dr. Kiran when he was at Cleveland Clinic for the Kpouch (Dr. Kiran left for NYC so Dr. Dietz did my surgery).  As Janet stated, he is a very good surgeon.  Detailed, thorough and conservative, meaning he ensures Kpouches are the right option for the patient. 

Hi Todd,

I am one of the veterans of the K pouch (37yrs) and have seen most of what is good and bad in it...I have had very long periods of perfect health and some unhappy periods of valve & pouch complications...all in all, I have always adored my pouch and would never trade it for anything in this world...my initial battle was to not have an end ileo and fought for this surgery...I have lived a relatively normal life other that said complications.

A great surgeon is your first step, then a good support group (us?)...

Have they checked you for Heshsprung's disease? Often lazy bowel can be misdiagnosed.  It won't change the outcome but is good to know.

Keep us posted and come back often for answers.

Sharon

Hi again all,

I will be having my K pouch surgery, and colon, rectum removed October

3, by DR. KIran here in NY where i live. He seems very knowledgeable and courteous. his team also seems competent.

Sharon,  i don't  have HIrschprungs  (sp) disease that something your born with.  I was basically very healthy until my twenties, when i developed gastroparesis ( abnormally slow stomach) that was hell in itself, it was idiopathic. 

As i progressed through my 30s I gradually became more and more constipated. When I hit my 40's i was very ill. My stomach and colon weren't moving.  Some doctors threw  a dx of pelvic floor dysfunction which actually delayed the real reason why i was so constipated. 

Last year i found a GI motility specialist who via a nuclear scan was dx with colonic inertia and sitz mark study confirmed this. Ironically, my stomach motility improved quite a bit from earlier scans. -I attribute this to stopping PPIs which I was on for years. 

I am basically ready for this operation, with my colon gone I should not have any more pain with bloating or mucous. 

My one question now is with diet with the K pouch. Due to my gastroparesis I am already been on low fiber, fat diet for decades. I don't eat raw fruits, or veggies. I do like protein shakes like Orgain, ensure. How much solid food is okay? A sandwich, a burger?

Todd

Hi Todd, 

The k pouch does not require any specific diet other than 3 basic principals. The first is to avoid lots of fiber. It can ball up and clog the tubes which in itself is not dangerous just a pain...you would have to manually remove the fiber from the flute holes in the tube...that takes time.

Next, Chew, chew, chew...then chew some more. Well chewed food digests better and your pouch will thank you.

Finally, many if not most pouchers tend to be lactose intolerant. Milk and cheese then to cause gas, bloating and cramping so many of us avoid it. I find that yoghurt and ice cream (unfortunately for me) do not cause me a lot of problems (unless I eat very rich ice cream which contains high milkfat).

Also, I tend to avoid white flour products. They turn to wallpaper past in my guts and get all thick and pasty...I can counteract this by either drinking prune or grape juice or substituting whole wheat or whole grains...they tend to become less pasty.

Do not worry about your diet, just heal. Shakes are fine but you may not need them anymore. If your stomach motility is fine then the rest will follow.

My general rule is to try everything 3xs...once within the 1st 3 months to see if it works, again between 6 months -1 yr after if it didn't work out and then again after a year...

Don't sweat it for now...just worry about healing and the rest will follow.

Sharon

todd--checking in with you as you should now be home.  how did the surgery go and how are you feeling?  as my surgery was a year ago i can still recall that the first four weeks are really tough.  am very curious how it is going for you and hope you are upbeat and feeling ok.  be well.  best, janet

Hi all,

I am sorry i took so long to respond. I had my surgery as scheduled on 10/3 by Dr. Kiran. The surgery itself went well Dr. Kiran was able to do everything laproscopically both colon, rectum removal and K pouch creation in about 5 hours. 

However a few days later serious complications occurred.  I developed an ileus. Which caused me extreme nausea and vomiting of bile. In fact they originally sent me home Oct. 10 but started vomiting as as i got home and had to be rushed back to the hospital that night. They had to place an NG tube down my gut to suck out the bile. Extreme agony! I already have a bad stomach and this was extra hard! They tried to discharge me even though I was still very nauseated. Nausea is an awful feeling. When i feel that way I am a zombie. I pleaded with them i could not go home yet and to fight with the doctors and administrators to remain in there. After about two and a half weeks i felt I was ready to go home.

I am home now and still recovering from the nausea. The  K pouch itself i really have no issues with it. It is a bit annoying I have to flush it  a lot more than i like to get the stool out.  Only time will tell if this will work out better than the regular ileostomy. right now i have mixed feelings. 

I have an appointment FRiday with a Medical Marijuana doctor. I feel this the only thing that can make a real difference for nausea and better appetite. BTW, I am on TPN now because I lost more than  15 pounds. The TPN is helping me restore my weight and keep me nourished until I can eat like a normal person!

This experience was a major ordeal I never been in such agony for such a prolonged time. At times i feel this surgery was a waste and just made things worse! But also I feel in the long run it will probably pay off once hopefully my nausea is better.  

Todd

Todd, I am so sorry that you are suffering...you are going through the worst of it...ileus is a common side effect of abdominal surgery and general anesthetic...I had never had one until 2008 and then I learned the horrors of them...

Once you get past that, the healing starts. It is not a hard a road as it may feel at the moment...the k pouch is very manageable once you start eating normally and can ingest either grape juice or prune juice & coffee...those are the fluids that keep your pouch contents liquidy and permit you to not have to irrigate as much.

Your diet will take time to adjust to and it is a real learning curve...proteins digest easily (chicken, fish, white meats, seafoods and eggs), carbs like potatoes and pasta will thicken the contents so the juices will be your friend. 

Fruits and veggies need to be really well chewed in order to not leave you with chunks that can block your tube.

Milk products can make your output bubbly and gassy. They should be limited in the beginning to avoid over stretching your pouch too quickly or causing gas cramps. 

You will learn what it takes but for now, just heal...Get well and it will all work out. 

You have already done the hard part. 

Sharon

Remember to stay hydrated with plenty of water. A good rule of thumb is 1/2 oz per body weight, ie 150 lbs = 75 oz of water/liquid

Ray