I will share quite frankly here, as I am near wits end. While I try to remain positive, given my situation, please be prepared for a negative perspective of my (short) life with the k-pouch. For those who read on, I am surely open to any ideas/suggestions you may have for me.

I had my k-pouch installed by Dr. Fazzio at the CC nearly 5 months ago, and have found it, from the start, to be the most trying time of my life. The pouch requires emptying 7-15 times per day, (not including the multiple tube removal/reinsertions/twists each time to clear the tube), I am nearly constantly bloated, in low to mid level pain, tired, and often nauseaous. I limit my diet to avoid blockages of the tube, which are sometimes painful as I can't seem to clear the pouch. Between the time/mess spent in the bathroom as well as the pain/nausea I have found it difficult to return to work. While I have some good moments, other than the fact that I have re-gained nearly 20 pounds since surgery, I have found few positives with the pouch. Dr. Fazzio
has inspected and run tests and can find nothing wrong. Cipro seems to have reduced the strong end of the bloating/nausea.

Previous to this I had a J-Pouch, which had its own similar issues, plus anal problems. Previous to that I had an illeostomy, initially an end, then a loop. I did great with both illeostomies - adjusting to the bag, and regaining full health, weight and function. I am a very active person, who likes to eat, travels often-for work and fun, and loves(d) life. So, it is quite likely, lacking significant improvement, that I will choose to have the pouch removed and return to an illeostomy. Even if I still have "upstream" problems, (which I and some Docs think will go away with the pouch), at least with the external bag the bathroom trips are quick and clean, so I have a life!!! After 3 years of surgery, I would like to be healthy and live my life as I did after my first (illeostomy) surgery.

I have discussed my problems with the ET nurses at the Cleveland Clinic as well as with Dr. Fazzio and they seem to have given the best of their advice. I am surely open to any of your ideas or suggestions, previous to making my decisions. The pouch would not come out previous to at least 6 months time. Questions are welcome. Surely, I might learn something from those who have had success.

Thank you, Joe

Joe,

First off, let me say that I am sorry you are still having such difficulties.

If Fazio didnt see anything wrong, than I am not sure any of us are going to have any better suggestions. While 7 times a day is within the norm I think, intubating up to 15 is probably outside the norm and would be in my assumption "a poorly performing pouch".

Prior to entering yet another surgery, I would definitely try everything possible (probiotics, emptying longer, making sure you arent chewing gum, drinking carbonation, drinking through a straw or other things that might cause air in the system).

When you intubate, do you hear/feel the air evacuate that has caused the bloating feeling? If its just air that is causing the bloating, you may want to try something like Gas X and or Lactaid when eating dairy.

Just like the JPouch, the Ostomy and the KPouch, there isnt one right answer for everyone. If you cant figure out what the problem is, and you were ok with the Ostomy before, then it very well may be a good option for you.

Best of luck and I hope you find some answers.

Mike S

quote:

(not including the multiple tube removal/reinsertions/twists each time to clear the tube),

When I reread your post, I wasnt sure where you were going with this. If I understand you correctly, you are pulling the catheter out then putting back in multiple times during one intubation? When in a hurry, I have done that once or twice on emptying, but have since found it easier to irrigate to get rid of all the contents. When I recently went in to see Fazio, he had me intubate prior to him scoping. Once I got the catheter in and the initial flow stopped, he irrigated with water to get more out. Repeated this step several times without ever moving the catheter. This method seemed to work pretty well so I have taken to using it often.

Mike S

Also, have you considered irritable pouch syndrome (IPS)? That's what they call pouchitis symptoms without any actual evidence of pouchitis. Maybe you could do with some antispasmotics and/or antidepressants.

Jan

Thanks for the responses. I am avoiding, as far as I know, most things that causes gas. And, I have tried off and on, pro-biotics, which I am familiar with starting from my time with Colitis. When I have gas and even when I don't, I find that, bending over the toilet, pressing on my belly in various places helps to move things along - including the gas. I have had "spells" when I think the pouch "works well". I put the tube in, leave it, rotate it, and things flow well, most nothing gets stuck, I am patient, and it feels as though it empties. That occurs occasionally. Otherwise, I normally must put the tube in, wait, "push" things out, press on belly, etc. to get things to flow. Then, I must remove the tube, clear blockages in sink, then reinsert, repeat. Still then, don't feel as though its emptied. I only intubate in the AM and PM, and then sometimes pay for it with hours of nausea from the gas that can't seem to escape. Most evenings I am in and out of the BR several times so that I can clear the pouch, and sleep, and not feel as though I must also urinate (pressure I think). Hope that answers questions. (Even 7 times a day to me seems like a lot of times per day to find a BR and empty the pouch. I was hoping for 3-5...Am I wrong?)

I am curious, after you have "fully" emptied the pouch, how long before you "feel" the pouch in any manner? Immediately, minutes, hours???

Thank you. Joe

Jan, can you further explain "pouch syndrome" and how the use of those drugs might help? Thanks, Joe

Joe,
I'm trying to understand something.
When you said :

quote:

I only intubate in the AM and PM,

did you mean irrigate?
I can only tell you what I do and you may want to try...if the stool is even a little sluggish I irrigate.I may irrigate each time I empty depending on what I eat. I use a piston type syringe NOT a bulb.There is never air going in, only water. I may irrigate w/30cc of water 4 or 5 times at one empty. If this helps, then I do it. There is no harm here.I empty 4-6 times/day.Even with my first pouch.

You say you have to remove the cath to unclog it. This leads me to believe you need to chew your food better so that it goes through the holes and stay away from the foods that cause this.

Dairy causes bloat for me so I look for lactose free products. Some raw fruits and veggies as well. And I am still discovering things I shouldn't eat.

I'm sure Jan will explain irritable pouch syndrome (I don't know it).

Leslie

I am not sure it really applies, as I have only seen reference to it in regard to the ileoanal pouch. However, I don't know why it would not also apply to the Kock pouch. Basically it is a functional bowel disorder characterized by bloating, pain, and diarrhea/constipation without any evidence of inflammation. A common lay term is spastic colon and is known as irritable bowel syndrome for those with a colon.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retri...003434&dopt=Abstract

Jan

I am wondering if you are having adhesion trouble above the pouch. The pushing on the abdomen makes me think this or a kink. Have you had an upper GI?

Another thought food allergies or like Jan has said Irritable Pouch Syndome. But it seems like the trouble is even above the pouch which makes me think adhesions.

If your stool is too thick you aren't getting enough out without irrigating 40cc, about 5 syringe full each time you empty. If the stool is too thin, then you need to start a food diary and figure out what is causing so many emptyings and the thin stool.

It sounds like you aren't chewing well enough either since you are having so much trouble with a clogged catheter.

Magnesium Supplements thin, coffee thins, grape juice thins and prune juice. Along with lots of water drank during the day to make up for the water absorbtion that the large intestine did before your colon was removed.

So are you too thin or too thick? Then we can go from there.

You may want to lie down and massage your abdomen daily to work out any adhesions if possible.

Chewing is "major", so is drinking enough. Why are you emptying 7-12 times a day. I need more information. You haven't had the pouch very long and may need to try something else, food wise, or learn to chew better. You may also be swallowing air when you talk and eat, this will cause gas.

I was thinking of food. Two months out of surgery I started adding more foods. For several days I was eating a cereal I could easily eat with the end ileo. But now all I had was bloat, cramps, and more trips to the bathroom. I stopped that cereal and felt better. I used to eat whole wheat pasta. Made it for dinner one night and it messed with me for days!

I'm not saying that your concerns are or are not food related. But take a look at the foods you are eating..are they high in fiber.

Just a thought (based on my experience)

Thank you all for your continued responses.

In response to questions/comments: I "irrigate" twice a day, AM and PM, rather than each intubation, (did I get the descriptio right, finally?), primarily because I find it a "pain", time consuming, often causes gas, and sometimes the pouch will take no more input. (And, I have been told by others that is all they do, if that. And, I am often not in a location to easily irrigate). But, based on this advice I am already trying to irrigate each time. Regarding food: Based on what I am reading I am unfortunately and probably eating a wider diet than I can, (though have learned to avoid most dairy), and I can try to chew...even more. I drink ALOT, mostly water, grape juice, water, tea, coffee. I will look into the Magnesium. How much do you take? CT-Scan...just had one...no problems were seen. Blood test showed me a bit low on hema?, something that has persisted since the j-pouch install. Dr. Fazzio not concerned about blood, though I am. Took some Iron and I already have more energy...yes I realize that can create thickness, but I have nearly always been thick, anyway.

Gotta be honest here...I wish that I found this web site BEFORE surgery, (I had been to j-pouch site, but not here). Had I realized that so many had major diet restrictions and the time/effort/tools required to constantly empty the pouch, I would have likely NOT had this surgery. I LOVE to eat and am normally VERY active, including alot of travel...this pouch appears to squelch that. Unfortunately, until post-surgery, I feel I was given a much more rosy picture at the Cleveland Clinic, including the references that I was given to contact pre-surgery. In my experience, the illeostomy had FEW of these restrictions/requirements. Oh well, life marches on...

Please keep your thoughts and ideas coming, as I am surely open to things that will at least help me to at least feel better, and I will surely try all that seem appropriate. Thank you again!!! Joe

You are still in the early stages with your Kock Pouch, in time things will get better.

You need to chew, chew, chew, and drink, drink, drink. Magnesium Supplements, the daily requirement is 400 mg/day; if you have no heart or kidney trouble otherwise consult a doctor.

You will be able to eat more foods in time. I eat almost everything. I do avoid watermelon, it gives me blockages. Mushrooms do clog my catheter but I eat mushrooms on a pizza anyway, if I want to deal with a clogged catheter and more time in the bathroom to empty my pouch.

The main thing is learning to chew, not swallow air and drink a lot of fluids. Sounds like you need more fluids or to irrigate more during the day. Yes, it takes time and patience. You may also have a food allergy which you would have to figure out. If you have Irritable Pouch Syndrome you would need anti-spasmatics. The Kock Pouch is a wonderful option and I wish more doctors around the world would do them. You have to remember you had surgery and adhesions will affect all operations, ileostomy, Kock Pouch and the J-pouch if you have them. I had adhesions in the beginning and mine loosened up on their own and I no longer have that issue.

So chew better, drink more and massage your abdomen. Keep a food diary and see if a certain food is causing you trouble. I would avoid carbonated beverages for now and gas producing foods. Eat easy to digest foods until you are more comfortable with your digestion without pain.

Thank you Jasmine...Joe

Joe
This may just be a rough spot till everything settles down and what is now new becomes second nature. Keep positive. You are only 5 months out of surgery. From what I hear about the Jpouch, it seems that the diet is almost reversed; where for the J you want to thicken the stool and with the K you want to keep it fluid. You may very well be eating a wider variety of foods right now than you should, but that could change as your pouch grows and matures. I eat popcorn and nuts (dairy was always a problem)...but not 5 months out.
With my (first) Kock I travelled including going to Russia (spent the night on an overnight train...quite an experience), I've hiked. spent the day at the beach and gone rafting for the day. I am getting ready for a trip to Italy in April.
Even with the end ileo you will be told to watch what you eat. You will want to avoid foods that could cause blockages. Gassy foods will make your pouch look like a blimp until you empty it. You will be advised to chew the food well. I learned to adjust my food so that if I didn't want to visit the bathroom often to eat thickening foods. If I wanted a cup of coffee I had to know where I would be an hour after to empty the pouch where all the coffee would be But you know that. I also travelled with the end ileo.

I think where I'm going with this is that there is an adjustment which ever way you go.

We are here to cheer you on and help....

It took me so long to write this that Jasmine posted first and in essence I'm a "ditto"

joe,
i'm a newbie too, and lord knows i've had my share of grievances. but you seem to be on the offense already. i mean, your original post you're talking about things being better with an ileo.
I think most of the kpouchers here got the operation in part due to the prospect of not having a bag or external appliance.
if that is not a concern to you, then yes, maybe a kpouch wasn't ideal for you, maybe you would be happier with an ileo
i for one know that i would not be as happy with an ileo. and so i'll take the extra frustrations i'm getting now.
BUUUTTT since you also said that any decision you'd make to remove the pouch and go ileo would be at least six months, that gives you lots of time to continue to adjust to your new plumbing.

I know that when i was learning about the kpouch, i didn't get the rosy picture you talk about.
if anything my initial surgeon (before i met Fazio) wasn't too keen on the idea. i mean, ultimately he knew it was going to be my decision but first off he told me right away the success rates of the kpouch and the potential downfalls.
but i was determined. it sounded like something i could manage. and Dr. Fazio thought so as well.
But i don't think i ever went into it thinking it'd be a breeze.

As for fluids, etc. I know i see a pretty obvious difference on days when i don't drink enough and days that i do.
Maybe you think you're drinking alot, but perhaps its not enough. maybe you should try keeping track of how much fluid you intake (maybe take a big nalgene bottle or something, and see how many times you go through it. etc)

also, has Fazio ever mentioned putting the constant drainage back in? seems if you were having difficulties that'd be something they'd recommend.

perhaps worth a shot.

I know it's a tough road. and i'm on it with you. good luck to you.
Becca