Pouchitis /valve revision

Hi Leslie,
I am probably the one on this site who has had the most revisions, 3 including the creation of the pouch, at 6 month intervals, then fine for close to 20 yrs, except for my pouch falling off of the wall and needing it reattached. 20 yrs down the road my valve started to "stick its tongue out" which was the beginning of a slip and prolapse.
I had a nasty revision which left my valve invaginated or sunk about an inch into my abdomen and twisted. Impossible to intubate. Took me 4yrs to find my original surgeon (thank you J pouch site) and have it fixed. I was fine for almost 2 yrs then I herniated and all hell broke loose. Ended up having 5 more surgeries including a few emergency ones due to repeat hernias around the valve so he redid my valve all in all I think 6 or 7 times...now I need my pouch put back up on the wall because it has slipped again and is the whole pouch is twisting causing my horrible lower back pain (what they call raported pain). They are not simple or easy surgeries. Other than the last hernia revisions which were all done through laparoscopy the others are all open surgery.
I survived them but the first week is always hard...thank goodness for morphine drips.
Because my pouch is twisted I have to aim upwards towards my bellybutton in order to intubate. It works fine for me now that I have learned the trick but in the beginning it was a bit terrifying until I found the direction to aim at.
Good luck and don't hesitate to ask if you need any suggestions or advice.
Sharon

Hi Sharon! Nice to meet you. Thanks for answering. I can't believe how much you have gone through. You are a true survivor! The last time the gastro dr scoped me he said the valve wasn't straight and tipped like a hockey stick. He believed I could manage this without another valve revision. The surgeon wasn't so sure that the valve might be starting to slip again. Right now I bandaged the tube back in because I had trouble with it again.We had a holiday weekend here in the us and I didn't want to spend it in the er. Monday I will take it out and try again. I see you've gone through numerous operations to maintain your pouch. My question is what causes the valve to slip???? It seems like it has a mind of its own. I will definitely go through a third operation if I have to. Also, I'm wondering if stress plays a role in any of this.

Hi Leslie,
Nice to meet you too,
I honestly do not believe that it is stress or psychosomatic or anything like that...it is purely physical. Tissues tear, sutures pop, things happen and then you have a torsion or a twist or slip...there is not much, as far as I know, that we can do to change things...other than lube, avoid trauma and be nice to our pouches (chew, chew, chew...),
You get to know what you can and cannot do with your pouch...I eat dairy...just had yogurt,
white cheese, cheesecake and goodness knows what for breakfast...(very, very, exceptionally unusual for me...am on vacation in a fancy hotel and for the first time I am taking advantage of the huge breakfast buffet...ouch, I will pay later but for now my heart and tongue have won out over my brain and pouch)...
I do eat certain dairy foods regularly, yogurt, ice cream (been eating tons of that here) and cheeses although I gave up on pizzas 20 yrs ago.
I also avoid most carbs most often. Rarely eat bread, cake or pastry, pasta or rice. When I do I stick to whole grains because they seem to be pouch friendlier. "Whites" seem to turn to wallpaper paste inside my pouch and are more difficult to get rid of.
My diet (except for this week) is pretty much the same: fruits, fruit juice, coffee or tea for breaky with assorted vitamins and meds. No solids. This allows my pouch to really empty out in the mornings and "lightens" me for the day. Personally, I believe that it helps me to avoid pouchitis (this is not a medical fact. It is an opinion but when my pouch empties completely every morning I do not "build-up stuff" inside it and thus feel as if I don't "over-brew" bacteria in there).
My lunch and dinner when not working or on vacation are pretty much the same. I eat an animal protein (meat, fish, chicken, eggs or cheese) with cooked green veggies and a salad of some sort or a soup. I have been doing this for 25yrs and it works for me. I can tell the difference between "vacation pouch" and "normal pouch". Vacation pouch is pasty, cranky and pouchy (gassy, bloated, thick output and difficult to empty). Normal pouch is a good consistency, limited gas, little bloating and somewhat easy to empty ( except for the fiber in the greens that sometimes get stuck in the tube openings).
I do not take antibiotics or probiotics unless needed but take vitamins like B's, D, Calcium, a chewable multi with iron and minerals and the occasional "extra" when needed.
There are no hard and fast rules. I eat nuts but chew them well, avoid peas, corn, pineapple and beans. Chew and spit out some other fruits and veggies but mostly live normally.
Hope that this very long post helps.
Sharon

Hi Sharon. I'm going to start paying more attention to the diet. Right now my surgeon requires that I still keep the tube bandaged in every night. You mentioned that u travel. What happens if you are in country with doctors unfamiliar with k pouches and there's a problem?

Hi Leslie,
Yes, I travel a lot. I even went to Turkey (one of my ab fab vacation spots...the Miami of Europe!) when my pouch and valve were both compromised (I had just had hernia surgery and my sutured holding my insides together popped the 1st day there).
First off, you lean your biology well. You learn everything that there is to know about your pouch and valve. 2nd, you learn everything that needs to be done to and for you if you have a problem. 3rd, you carry supplies (I keep a min or 3 kits (1 or 2 different types of tubes, strait and curved or stiff and soft, 60cc syringe, lube, child's water bottle etc in each kit)I keep 1 on my body at all times, a fanny pack or small purse, 1 in my Purse (big thing that has all my meds and scripts too) and one in my suitcase). 4th, I keep 'emergency supplies' in my luggage (1 or 2 leg bags, tape, flanges (those disks that they use to hold the bag on), belts to hold the flang on, various things for strait drain and hook up, different sizes of emergency tubes (urinary cath which is tiny and strait just in case I can't get mine in, a metal wire guid etc) and a data stick with my full medical records on them including scans, x-rays and any other relavent info needed. I have translated into French but should do Spanish and a couple or other languages.
I have rarely needed these things while out of town or country but still feel safer with them.
You learn to find a comfort zone and stick to it.
I have found ways of hooking a tube to my pouch, plugging it and going to work that way for months. Once you know what to do then you feel a lot freer.
Maybe I am over cautiuous but experience has shown me that if you are you don't need thing but if you don't take them you regret it!
Hope that this doesn't scare the pants off of you!
Sharon

Hi Sharon I was wondering if you ever experienced profuse leakage of the stoma even when the catheter had been bandaged in for many days? The leakage has caused tremendous concern and anxiety because I'm hoping this isn't a red flag indicating valve malfunction. I want t o remove the catheter to see if the leakage subsides. However if I can't intubate then it's back to the er. Monday I will speak directly to dr. Thanks for listening. Leslie.

Yes and Yes Leslie,
I would put a guide wire(so that you can then thread your tube over it to get it back in) or thin tube (block the end off so that it doesn't leak that way) into the stoma before you pull out the tube. Lay in the tub and twist and turn your body in different directions to see if it is directional leakage ( that could mean that your valve is twisted up or sideways and it is pulling your valve open to allow for leakage).
Different leaks can mean different things, some serious, some not,
Peristomal hernias where the hernia is really close to the stoma and causes muscle weakness around the valve is one possibility. A valve or pouch twist is another one that can pull the valve unnaturally open. Ditto if your pouch has dropped off of the wall and is sitting lower than the valve. When it fills up it pulls the valve open and causes gushing leakage.
But then again you are in full strait intubation which can cause swelling of the valve and thus leakage.
Dr C gave me tests to do.
Fill the tub with water then fill your pouch with liquid. Clamp the tube so that nothing comes out and then get in the water. Are there bubbles? Is the fluid coming out? ( use coloured liquids:add a few drops of coloured water for example or a drop of natural food colouring)> NO? Twist right, left, get on your knees (akward!) or lean forward and backwards...
You will know then if it is leaking and how.
This will also offer more data to your surgeon on the where and why.
I have had my pouch drop 3xs ( is still down...I leak whenever I squat down on my haunches).The surgery to pick it up is rather easy...laporoscopic. A few sutures and you are done.
Try this and get back to me.
Sharon

Hi I went back to the dr and got scoped. I have severe pouchitis. I'm on cipro and flagyl. I'm able to catheterize without a problem but the leakage is still quite frequent and severe. Patiently waiting for the meds to work. Thanks for answering.

Hi there. I've been on flagyl and cipro for 3 days and the valve is still leaking!!!!'i,m waiting to hear from the surgeon. I,m still able to catheterize. I hope this isn't another red flag for a valve revision!!

Hi Sharon. I went in the tub. No bubbles out of the stoma.... Stoma still leaking . Surgeon wants another scope on Monday...

Hi there. There is a pinhole fistula in the valve. Back in the operating room again!!!!!

Crap!
Good luck...I when did they want to fix it? What are they going to do?
Sharon

Hi within the next two weeks. I'm meeting with the surgeon next week. I will give u the details then. I know I will be in the hospital for a week. Thanks. Leslie

Do not forget to make a list of questions to ask and make sure that youu get all of the answers so that you know, within surgical limits, what he is going to do...
Is there a chance that they may need to move the stoma site? If so make sure that the potential new site is marked and comfortable for you...
I had a nasty wake up when no one told me that it was possible and found a very uncomfortable and totally unpracticable surprise...he put my stoma under my bellybutton!
So make sure that all the bases are covered and that you feel at ease with the responses.
Good luck
Sharon

Does anyone else wonder how Sharon from she says, Paris, France has had every possible thing that could ever happen to a kock pouch. (inc putting it under her belly button) that was a good one. I wonder if you are really full of BS and a psycho???? Do you have life?
Jeanne Scott, Placerville, CA RN

Psycho? No. I think she has oodles of problems because she also has a disease (Elhers Danlos syndrome) that prevents her body from forming appropriate scar tissue, so she does not heal normally.

As for the belly button thing, I believe she was meaning "below" the navel (as a stoma site), not that her k-pouch was put behind it.

Yes, it is bizarre how many complications she has, but this stuff does happen.

Jan

Jeannie,
I wish that I was a psycho but unfortunately I am not...I would be so much better off than being so sick.
That is what happens when you are born ill...the accumulated effects of genetic disease, surgery and meds that were given young create loads of complications later on.
No surgery seems to be without complications and that is the big problem...until they discovered the D'heller's-Danlos syndrom there was no explination for everything possible falling apart...now, even if we cannot fix some of the problems at least we know why they exisit and what are the best methods of attack to treat them.
By the way, D'Heller's-Danlos is both heriditary, genetic and extremely underdiagnosised. Many patients with multiple post op complications, hyperlaxity of joints, hernias, dehyssing on through to things not "holding" and fragile veins that blow constantly under I.V., poor vscularisation (the cause of my dad's problems) should at least look into it...there is a check list and it is a rather long one...if anyone has more than 4 of the symptoms then they should look into it.
It may just be the answer to a number of people's medical questions of "why me? Why again?"
Sharon
Ps...The original reason that I wanted the k pouch was to ensure a good quality of life and the freedom to travel and live my life the way I saw fit (and at the time I did not believe that an outside bag was for me)...it has been a very long and lumpy ride but I do my best to live up to my dreams and do not allow my medical situation to control my life if and when possible. I also live up to the promise that I made to Dr Cohen, my surgeon. I promised to not waste my life with futility and to take full advantage of the gift that he gave me. That takes stamina, fortitude and a good deal of laughter. He is proud of me and what I have become in spite of this disease...and that motivates my whole life.

Hi right now everything is on hold while things calm down. I will keep you posted.

Leslie,
Did they tell you why the valve is leaking? Is it slipped or is it twisted? Have they checked for some sort of peristomal hernia that could be the cause of the valve being lose and not holding tight on the tube (thus allowing for leakage)?
How are you feeling? How is the irritation around the stoma doing?
Sharon

Hi I was told there is a pinhole fistula at the base of the valve. It still leaks intermittently. I'm not sure how it got there. Possiblities could be some form of necrosis after stapling from the surgery.Possible from weakness of skin and catherization hit the spot or during scoping.... I was scoped in april. Nothing was seen but pouchitis. Then scoped two more times in the last two weeks. The hole was finally found . There is some irritation around the stoma. Are you familiar with short bowel syndrome. I was warned about that. In which case I would end up with a permanent illeostomy. I Still want this k pouch even though I encountered all these issues early after surgery. I would still recommend it . I hope I answered some of your questions.. Right now still waiting.

Ok, So I am going to play dumb (not a long stretch) and ask why a pinhole fistula would cause the stoma to leak?
I have a vague conception of the anatomy of a pouch and valve but I do not get it.
Unless it is tracking from the inside of the pouch to the valve...in which case I do get it.
As for short bowel syndrom...according to Dr Z Cohen from Mt Siani in Toronto, it is really rare to end up with short bowel...you have to remove a lot of small bowel to get to that point.
He has told me that in spite of my original pouch and the numerous valve revisions and reconstruction, I still have enough bowel to rebuild another k pouch if needed.
So, I guess that it depends on if you are on your 1st or 2nd pouch and how much gut was used...and if the valve ends up compromised but the pouch is healthy then they just reuse the same pouch but "snip and flip".
What it means is that they unhook the stoma/valve from the abdominal wall on 1 end and cut the intestine about 1 foot from the pouch (the incoming or afferent limb of the intestine that leads into your k pouch) leaving it attched to the pouch, then they flip the whole thing over. They rebuild a new valve with the foot of intestine and after removing the old valve they sew the pouch to the rest of the intestine.
(I am making a mess of the explination but according to Dr C it isn't that complicated and saves a lot of intestine...it also means that you could potentially have numerous valve revisions without ending up with short gut syndrom).
So, if all else fails...a person could lose their valve and still not lose their pouch.
I hope that you don't get there but this may reassure you if do.
Keep us posted on your progress.
Sharon

Jeanne Scott, RN, Placerville, CA,

FYI,
Sharon is from Paris, France. We have corresponded and the postmarks were from Paris, France. Please be careful before you call someone a psyco or anything else. I suggest if you have any questions like this in the future that you click on the triangle in the right hand corner of their post. Then you can ask the administrator if you have doubts about the poster.

With warmest thanks to Sharon, whose very kind and generous contributions to this forum, are so greatly appreciated by myself and so many others.

Emme

Hi Sharon,
you had remarked about having a tube you wear with K Pouch? Is this normal outside of emptying the pouch?
thanks.

Thank You TE, Emmi...this is the first time that I have ever had to defend my disease or self on this forum and it hurt terribly. I come here to give and recieve help when others are scared and hurting or when I am.
@Lifecircle,
I only wear an indewelling catheter when there is a Big problem. Usually it has to do with a valve twist or henia or other valve related problem. It is rare. But it is the go-to solution in a pinch when something does happen like you cannot get your tube in easily and are forcing regularly (which can cause swelling and bleeding) so you just tape it in or hook it up to whatever system your hospital used on you post-op. The result/thinking is that if you leave it in for days/weeks (depending on what is going on) the valve will have time to heal around the tube (scar in) and the problem may be resolved that way. It does work for many problems but not all...but honestly it is a painless and free solution to many problems. I also use it when I have a stomach virus (the normal ones) and just cannot stand intubating for the 20th time that day...it allows me to sleep through the night too.
It does not hurt the pouch or valve.
I had to do it when I had severe valve twists and prolapse due to hernia. I rigged myself up in a way that I could go downtown to work everyday and no one knew. It lasted a couple of months until I could have surgery. It was a pain but not painful.
sharon

Sharon was very supportive and helpful when I was going through a difficult time!

Hello everyone. I made it through the third operation. The fistula was repaired. I'm on the road to recovery once again!

Yoohooo!
Sharon

Hi Sharon... Btw.... I never really got a
Straight answer as to why that fistula occurred. Former surgery from staples or my insertion of a weak spot of necrotic skin.. Very non committal answers. I wish there was more specific info on the internet regarding surgical repairs. I also wanted to say that I think you are very informative and knowledgeable on these posts.

Unfortunately you may never know Leslie...some things just happen. There are 100 reasons why or why not but they happen anyway.
Let's just hope that they do not happen again.
Thanks....I try to be helpful and use both experience and good sense whenever I give advice or opinion...but I can be wrong too.
I am not a doctor ((sigh!)) and have no medical diplomas...just way too much experience at these things.
I also try to have a sense of humour in it all (not always easy!)...
hugs and stay healthy
Sharon

Great News Leslie! I hope you are all done with fissures, dead skin and repair surgeries et all!!

Hi Leslie! How are doing since your latest surgery? I've been approved for BCIR surgery and am waiting on the call to schedule surgery. Your posts and Sharon's are so helpful. I think of you both often and am amazed at how much people go through (multiple surgeries, etc.) and are committed to keeping their inner pouch. It will be a true miracle for me, to experience life without an outer pouch. I never thought I'd live to see the day.

Hi there. Tube came out today after six weeks. In dr office no leakage because I had liquids only the day before. I ate some meals and stool is leaking again. Who knows what tomorrow will bring? Back to the dr office. Trying to stay positive.

Leslie,
please post and let us know how you're doing and what the verdict/treatment is. Have you had any valve revisions? Sorry, I've seen so many posts on different sites, I kind of get everyone mixed up. So is stool leaking from your opening?

Darn, drats...I am so sorry Leslie,
I was sort of hoping that it would scar in and heal...What is the next step?
Sharon
ps...did they look to see if it isn't a peri-stomal hernia that is preventing the valve from staying tight?
Hang in there kid...we are rooting for you.

Hi Sharon I just got scoped. The valve is good. Pouchitis is back. I'm on cipro again. Surgeon has to review the photos to determine the next step. Could be another fistula or the same one as before. It leaks on and off just like before the last surgery.

Darn, will this never end?
I can only hope that it is something fixable or non-surgical that can be patched up easily....hang in there.
Have they looked for peri-stomal hernias or if the pouch has fallen?
Both can cause leakage while the valve is still intact and in perfect conditon.
Get that pouchitis taken care of...
and take good care of yourself
Sharon

Hello Ladies I am new to this site. I have had a Koch Pouch for almost 40 yrs now and am starting to have a slight problem intubating. It feels like the nipple valve has slipped or the pouch has come off the wall. I have been reading your comments and hope you are doing well. I have not had any major problem is the 40 yrs that I have had my pouch other than a couple small bowel obstructions. I would not trade this for the world. I have lived my life like normal. Eaten anything that I wanted. Was active as much as I wanted. Grew up only knowing this pouch as I had it done when I was 10 yrs old. Oh yeah and I probably abused my body more than I should have but I still had no problems until now. I am going to see my surgeon in a couple weeks to find out what the problem is. Sharon I live not too far from Toronto and have heard of Dr Cohen. My surgeon is also from Toronto Dr. Wm W Rudd. Hope you are all doing well...take care.

Dave

Hello everyone, 3 months after a fistula repair, leaks have continued on a daily basis. A second pouchoscopy revealed that I do have a fistula. I'm told a 4th surgery is highly risky. I'm disappointed that the last surgery did not give me the desired results. Right now my body needs a break. Has anyone out there had numerous surgeries for fistulas? Leslie