Considering K-Pouch UK

I am sure other members of this forum could give you suggestions if you provided us with more specifics about your situation. What kind of pain do you have, when does it occur and how severe is it? I assume from your post that your doctors have not found any pouch problems like pouchitis, strictures, fistulas, etc. My thoughts are to be sure you have covered all of your bases before throwing in the towel on your jpouch. Removal of a jpouch is a major operation.
I have a BCIR, which is like a K pouch in terms of function and lifestyle. I had high frequency, leakage and butt burn with my long-term jpouch, but was able to adapt sufficiently to prevent having the bag. High grade dysplasia in the anal canal made pouch removal necessary. The BCIR surgery went well and I now have a very good quality of life with it. I can do any activity I want, eat a wide variety of foods (must chew it well), take no medications for it, have no pain other than a mild discomfort when my pouch needs to be emptied (I have sufficient time to find a restroom). I empty the pouch with a small plastic catheter (a painless procedure) at my convenience about 3-5 times a day and have uninterrupted sleep at night. I wish you the best with whatever you decide to do.
Bill

Hi Spogi,
Firstly, I am so sorry about your jpouch and the troubles that you are having.
Next, the reason that they do not do the K pouches as often has less to do with the NHS thinking that it is more expensive (in the long run it is less expensive than an outside bag...there are very few supplies to buy over the years)but the fact that there are very few competent surgeons that can create it.
The pouch is essentially the same as a the j pouch and if yours is healthy then they will use it to create your K pouch. It is the continent, one-way valve that is tricky and thus requires great skill and delicacy as well as long term attention.
I have had mine for almost 35yrs and to be honest (other than some major revisions and problems at the 20 yr mark) I would not trade it for anything in the world.
I am very active, eat most things (except for chunky, undigestible foods) and have what I consider to be a good life.
If you find someone competent who can preform this surgery and give you good follow-up then it is a wonderful option.
Good luck and keep us posted
Sharon

Hi again,

Sorry to take so long to get back to you all (evil computing issues), and thanks for your replies.

The docs have never found anything more than mild inflammation in the j pouch itself (cuff problems though, see below) so no pouchitis and no strictures or fistulas.

The various little pains are too numerous to describe, but I can classify them into two different phases, and I tend to swing from one to the other every few days.

The first problem is high output (just yellow liquid) which is very acidic and causes, not just bad butt burn, but nasty pains just inside (I am guessing cuff irritation). The more I go, the more I need to get it clean, the more it irritates, then I guess fissures appear as it starts to bleed a little. When it is really bad I can end up unable to walk as any movement triggers pain.

The other phase I have is almost constipation, I feel full like I need to go all the time, but when I try to empty hardly anything comes out. I feel completely swollen inside, and I have agonising right side pelvic pain. I know from scans that the jpouch has formed in two chambers with only a narrow passage between, I can't empty the top chamber. To help the docs gave me a catheter to try and empty, which works fine sometimes, but other times I can't get it in further than a couple of centimetres. It is completely blocked and feels like the bottom chamber has folded on itself.

All in all, the unsettled acid tummy, the need to go all the time (both from high output and constipation) and trying to insert catheters, the cuff is in a bad way most of the time.

I am concerned that k pouch may not be the right way forward for me because of sometimes high liquid output, the physical shape of the j pouch is causing issues and a conversion may be difficult, and I have had sporadic difficulties with the anal catheter. However, I simply cannot carry on this way, and a stoma is a no no too.

Seeing how other people deal with their k pouches is very informative as this is a huge decision for me. Thanks for your input.

Spongi, I assume in reading your posts that your doctors have ruled out a pouch reconstruction to eliminate the second chamber, which might result in a more functional jpouch. If you do decide to go with a K pouch, having occasional high liquid output would make more frequent emptying of the pouch necessary, a minor inconvenience. With a normal pouch capacity of 600-1,000 cc’s, you can go a number of hours between intubations. You will know that the pouch is becoming full when you have a feeling similar to a full bladder and should have plenty of time to locate a restroom. The valve for the K pouch keeps all stool and gas inside until you empty the pouch with a catheter. None of the pouch contents comes in contact with the skin surrounding your stoma, so there is no rash or irritation caused. The entire K pouch operation is usually done in one step, so there is no temporary ileostomy.
Bill

Spogi,
1 of your problems sounds like a case of cuffitis...an irritation of the rectal cuff that is left in during the creation of most pouches...that cuff is part of the rectum and therefore suseptible to the same problems as you colon was...there are creams and treatments for chronic cuffitis that you may wish to try before moving to the next step.
The cycle that you describe sounded so terribly familar...like a chronic blockage and I would have told you to have a small bowel x-ray done until you mentioned the 2 chamber pouch...which explains it perfectly. The stool gets blocked, some of it "stews" or macerates and causes all of that horrid yellow-bile-like juice to come through and burn everything along the way and then you feel full, blocked, bloated and burned,
With the k pouch they remove the cuff so there is no longer that risk, the 2 chamber does not cause problems either (mine is 2 chamber) and empties normally because your stool remains liquidy and comes out through a tube (intubation).
Your problem seems to be primarily mechanical and that can either be fixed by redoing your j pouch so that your cuff is stripped if needed and the chambers are joined or reduced so that your "hourglass" pouch is turned into a baloon.
Do not rush to the k pouch but explore all other options first if possible...then and only then see about finding someone very Good and kind to do the k pouch.
Sharon

Well I have had my appointment with Prof Mortensen, and the upshot is that there are two surgical options for me. The first is to try and remove part of the cuff of the jpouch to reduce the irritation, and the second is to go for the k pouch. Both have the worst case scenario of a permanent ileostomy, so I reckon I may as well go for the whole hog and have the k pouch done. Removing part of the cuff is just as risky and would only partially solve the cuff issues and none of the j pouch functioning problems. Prof has arranged for me to discuss the k pouch with a specialist nurse so I can find out a little more, though he did say that I would need to be a "little crazy" to have the k pouch.

Though I am making progress down the route of surgery, there is still a chance that a permanent dose of cipro might keep me functioning with the j pouch, so I am giving it a go. I have had many short courses of cipro before which have generally helped, but into the second month of the permanent dose, I feel like the effects are not as much as before and I feel constantly under the weather, though without any specific symptoms (just feeling rough and run down). Thinking about it, this part of the post would probably be better placed in the j pouch section - I shall start a new thread there.

Thanks to all who have given me input so far, it is always gratefully received.