Eric, no your pouch shouldn't be leaking when it is full. Why are you in pain? Surgery in June, I would think you are healed. The pain makes me wonder if this is something else going on. I can't see waiting a month, why? You might have pain from adhesions or pouchitis....it needs to be checked out, now not in a month!!!!! I'm so sorry Eric, call that Drs. office and make an appointment. I would be irate!!!

The pain is not constant, but if I don't maintain a level amount of Percocet in my system, I get horrible abdominal pain, and I also believe I have pouchitis, which I'm taking cipro and flagyl for. You're right, I shouldn't have to wait just because my hypaque study didn't show major damage (showed its slipping and not creating a tight seal though)...stay tuned!

Just throwing this out there, since you've seen Dr. Cohen and have had imaging done, is it possible at least some of this pain is opiate withdrawal? You mention the relationship to attempts to lower your dosage...

The leaking is another story. I certainly can understand your impatience, but since you were having valve and intubation problems, with all the trauma and bleeding hat caused, I can see why this is going to take some time to resolve.

Jan

Eric,
Where is the pain? How does it feel (sharp/dull/persistent/sudden???) How often do you feel it?
No, the valve should not leak when the pouch is full...that said, mine does but I know why...my pouch is partially down and slightly twisted so when it is full=too heavy it pulls on the valve and spontaneously opens it up...I do not have 'pain' per-say...I have sacroiliac pain, other joint pain, a tiny bit of muscle/adhesion pain and a pulling, internal pain from when the pouch is over-heavy and I feel like I am pregnant with a watermellon...but no 'other pain'...the k pouch shouldn't be a source of pain any more than a stomach should unless it is overfull or gassy.
I understand where Dr C is coming from...he has made me wait and see if things straiten out (on rare occasions it has!)...he wants to know why it is doing this...and if it is damaged from rough intubations which could heal (swelling could go down, a rip could heal...)
I understand the impatience of the wait (been there too on numerous occasions) but I would rather see you antsy from the wait than have to fly out to hug you in post op!!!
Hang in there sweetie...and cut down on those pain pill to see what/where the pain is coming from
Hugs
Sharon

I hope this is resolved soon. You deserve a better life than this, that much I know.

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Just to chime in (hopefully this can be a civil thread). I was in hell this whole year after surgery. I went to Cleveland Clinic since I was really bad lately and was crapping blood out and more mucus and smell coming out of me. No real leaks but the blood that came out with mucus was bad. I tested positive for C.diff and now a lot better once on Vanco. Shocked nobody tested me this whole damn year. Everyone said I had pouchitis and valve issues when it was C.Diff the entire time never once had pouch issues.

How are you feeling now Vanessa? Is the problem resolved or resolving correctly? Is your pouch working properly now? How does your valve feel?
Sharon

I am not doing to well. Right now I am pretty feverish, have to go to Hopkins tomorrow in Maryland. Not sure if it C.diff causing it or this huge mass that has formed in my butt that hurts so bad.

I wrote a big long blog article about the whole experience http://www.arsetopia.com I would never go to the Palms of Pasadena again. Ugh To think Cdiff can kill people as well.

I don't know if I should switch valves or not. According to CC the violent gas movement I get around my valve was never pouchitis it is the intestine that is wrapped around my valve.

I can't get a damn break lately.

Shen gave me Belladonna and Opium suppositories so see if that helps the valve pain and spasmatic pouch over all.

Suppositories? Do you use them? Are they even possible with a K pouch?
Vanessa, why is the piece of intestine that is wrapped around the valve causing the problem (unless it has slipped, unstapled or twisted)....it is supposed to created stability and not pain...What are they suggesting for you? Why do they want to change the valve? To what? A classic valve or just a tweeking of the one you have?
Hope that they get to the bottom of this and fix things up for you.
Sharon

Nobody is saying I should change the valve I am debating it. Stool and gas goes through that part of intestine. The BCIR has 3 entries unlike the kpouch that is more simple and has 2. They said it is a common complaint he has scoped over 200 BCIRs.

Suppositories are easy. I looked at him funny when he told his assistant to write the script. Told me to stick it in and push with catheter. So i did it last night and went in like butter. Actually think it felt better than a catheter. :-) he is trying to get my pouch and valve pain down. I was diagnosed with a spasmatic pouch but hate the side effects or bentyl and levison so this doesn't do that. Just does the job in the pouch.

Vanessa,
Excuse my naivity but what do you mean by 3 entries? The kpouch has the affenent limb side that leads waste into the pouch (1) and the valve/stoma leading out of the pouch (2) conducting waste to the outside of the body...how/where/why is there a 3rd entry/exit? I am confused.
Thanks for explaining
Sharon
ps...thanks for the head's up on the suppositories...will try!
Sharon

Right you are correct in the kpouch. He drew illustrations for ne explaining the difference in bcir vs. kpouch. The 3rd entry is considered the small bowel wrapped around the valve or I am explaining it wrong but i get stool and gas that spurts into my pouch causing me a lot of pain. I have to push on my stoma/ valve to help move it along is it is trapped there. That is due to the small intestine wrapped around the valve. They don't do that with the kpouch.

You have raised an intriging question there for me...I have a section of small bowel wrapped around the valve as well (a living colar for more valve stability due to repeated twists, slips etc)...but I thought that the piece, although obviously alive and vascularised was not connected to anything but itself and the valve...if yours is somehow still connected to the afferent limb then yes, that would be a serious problem...but for the life of me I do not understand why (I am not a doctor so, yes, I rarely do understand the details) or even how they would have that piece hooked up as an inlet...but I know nothing about the BRIR other than the fact that it is a modified k pouch and that it has some valve modifications that are supposed to be great improvements...but that sounds awful for you! How do they suggest fixing it????
Sharon

Vanessa, I am so sorry you are having such a boatload of problems! As if C. diff is not enough? But, I am glad THAT got sorted out (but be forewarned, it can become chronic, since it is a spore-forming bacteria).

Anyway, I guess this "living collar issue" is completely unexpected, but it sounds like Dr. Shen encounters it fairly often. Too bad, since it seemed to make a lot of sense.

I can see why they would want to keep the living collar in the fecal stream, though. If you disconnect portions of small bowel, they can become inflamed (diversion ileitis). It happens with the old style bypass surgeries for weight loss. The intestinal mucosa needs the fecal stream to maintain its health.

I wonder if your interstitial cystitis has anything to do with the spastic pouch thing, or if that is just something new to deal with. The B&O suppositories sound like a good plan, since you get the local treatment without so much of a systemic effect from the belladonna. A lot of people cannot tolerate the systemic effects of Bentyl and the like.

Good luck, and let us know how it turns out. Sounds like it would be useful info for others.

Jan

I just tried to google the schema of the surgery to see how they do it...very interesting procedure...I am still not sure of the details because there is only one picture of it and it looks like the small bowel in 'woven' into the pouch and comes out to wrap itself around the valve...wow! I am blown away at the concept...I had never seen the pics before...mine is totally different...it just looks like my valve is wearing a turtle neck sweater...so technically, your living collar actually has stool running through it...that empties out into your pouch? Wow. Is that what is hurting you? The passage of stool and gas in the collar? Is it where the cramping is? What can be done to reduce the pain/cramping? without actually thickening the stool and making it even more complicated? Are they suggesting that you keep your stool thick or thin? Are you drinking prune juice to keep things flowing? Have you tried digestive enzymes to lower the gas output and improve digestion? Papaya enzymes or some probiotics?
Anyway let me know if or in what measure I can help if possible...
Sharon

Vanessa,
I've been thinking about you all night (not like that!!!) and wondering about your diet...I know that you are very athletic and eat healthy...how much fruit/veggies do you eat? How is your fiber load? Do you eat/drink milk products? Whole grain breads? I am wondering how much of what you feel or are suffering can/could be controlled through diet...No, I am not kidding....(diet does not fix a broken valve or clear up C-diff but it may help with the gas etc)...it is spring here and I am gorging on asperagus, strawberries, green salads etc and suffering like a martyr...I forgot how hard green leafy veggies, stringy veggies like leeks, artichokes etc can be on a pouch/valve/k pouch...I am litterally spending an hour at a time trying to clear out my pouch/tube and have more gas than ever so it lead me to wonder what you eat...you are living with the double whammy of a 2 part input into your pouch on top of everything else and that may make things even worse for you than for k pouchers...
Just a thought
Sharon
ps...I have heard of k pouches being converted to BCIRs but rarely the contrary...not sure if they can save your exixiting valve and just do a conversion or if they would need to build a whole new one...generally they reinforced the k pouch valve with either a mesh collar or a mylar ring but they may need something more original for a conversion....have you spoken to your surgeon about it?

Thanks Josh! For the reply and PM.
I did have an abcess, I have 2 actually that were so tiny CC wasn't concerned with but this one just got huge real fast. Was a total pain since it wasn't real liquid, just real thick stuff with a lot of blood. The surgeon just had to dig it all out with a Qtip. And now I have to be super clean there and pack it so I don't get an infection since I have cdiff taking another antibiotic can be a big problem. If I have signs of infection then they said no choice, got to take it. I am going to consult with Shen over this.

Skn69 I have actually been on a candida diet since the Palms thought I was having yeast issues in my pouch. Veggies do not digest for me at all, only things I can usually eat are cooked carrots, peas and cucumbers or I juice things like cucumber, celery, etc. I think that is because I have had most of my stomach removed. I was eating super strict and I was at my absolute worst. Shen said no matter what, no sugar since that contributes to bacteria overgrowth.

Thanks guys. I am tired. Been up for 16 hours at the ER at Hopkins, excellent care once I got out of the ER and into observation. 3 am they finally started working on this and I was discharged at 6 am so I am exhausted. I also do not sleep well on pain killers so I doze off then wake up.