Hi Evox

What do you mean by more tissue showing? Does the stoma look bigger or does it look like there is a toungue sticking out? Or are there white bumps on the pink stoma? Granulation?

I am not quite sure of what I am about to say but I do not think that the inside of the small intestine creates scar tissue ...I know that the abdominal cavity creates scar tissue (adhesions) around the sites that have been been cut or manipulated but I don't remember hearing about it happening inside of the intestines and your stoma is made out of your small intestine.

When a surgeon tells me that he needs to do an outpatient procedure I rarely worry...it means that he is not going to do surgery to me but do something small...

I do not think that he would do anything to compromise the continence of your valve or the integrity of your pouch.

Please let us know, I am very interested in how you are doing.

Sharon

Hi Sharon, thanks for your response. My stoma hole is the same size, but the actual stoma site has increased if that makes any sense. The stoma is surrounded by red mucosal tissues similar to granulation but its coming from the inside. I also think it's related to increased mucus production. Before I can get away with just a large bandaid and I'm good for a few hours, but now I've had to use gauze pads with tegaderm just to contain it.

My follow up is in a month. If this gets any bigger I'll definitely consider that surgery.

Evox,

I gave up on bandaides and tegaderm etc years ago...way too expensive. I have been using those mini packets of kleenex as patches. Very absorbant. If you are really leaking a lot, then fold up a paper towel...they are super absorbant.

I use a cut up minipad against my unddies and the kleenex against the stoma...the double protections is perfect.

I only use the bandaides when wearing a sexy dress or bathing suit.

Sharon

EVOX23- whatever happened with your issue? This past week I have had increased mucosal output that is saturating my AMP pads, mini-pads, anything I wear. I also have been leaking stool the past few days (especially at night) and as expected, the skin around my stoma is very irritated. Have any of you all had this issue? I should probably be looking at my diet, but at first thought, I have not eaten anything different to increase mucous production. I intubate more at night also – maybe thinking my pouch is too full? Do any of you have insight?

Kara,

Leaking anything other than mucus is not good...we are supposed to be continent...unless you have some skins or fibers stuck in the stoma it should not leak...how much leaking is leaking? Like a tsp worth of gunk or more? Are you leaking gas too?

Yes, the acid from leaking will burn like crazy so be careful, change your patch often (more often than before or use folded up kleenex or paper towel inside of your usual patch for extra absorbancy)...

Have you tried the bathtub test?  Fill the tub with water, submerge yourself and see if there are bubbles...(Dr C's advice)...

Is the leakage only when you are full or in specific positions?

Let me know, please.

Sharon

 Sorry that I can't provide any help on the leaking. Sharon suggestion of the bathtub is brilliant. As for the stinging you can try what people with ileostomies use, which is stoma powder and barrier no sting, or something or the other, I can't think of its name.

I have a lot of mucus out put,  which I deal with by using a quarter square of good quality paper towel that I fold up, put against my  stoma,  then put on part of a sanitary pad  and finally tape the sandwich to my body with paper tape. On a bad day a leak through all of that.   Keep us posted on the leaking and the cause of it. You might want to keep a food diary to determine if it is something like spicy food or excessively fiberous foods.  Good luck, Janet

Kara  I have the specific information on products  that will help heal the  skin around the stoma. First dust on stomaadhesive, which is made by  ConvaTec.  Next dap on NoSting skin prep.   Another suggestion is to get a product called Allevyn Life  by Smith and nephew. There's no other information on the package to describe it, other than number 66801067 that might be in order number. The stoma nurse  at Cleveland clinic gave me some at my four week check up and applied one on my skin, which was fairly angry at the time.   Happy now. I use the stomadhesive daily. 

 Have you spoken with the doctor about the leaking?   Any improvement? Hope so. Janet 

Hi Kara, I didn't have surgery. I've stopped lifting weights and only do cardio which has stopped the prolapse from getting bigger. I will probably need surgery later in the future, but right now symptoms are still manageable.

I don't think I have stool leakage but more like a mucus and residue. What I do now is I irrigate my pouch till clear water comes out everytime I empty. My surgeon also advocates this to prevent stone formation. It's a lot of work but I feel more confident and I'm good for the next 8-12 hours. I do however still have to change my gauze pad/tegaderm every 4 hours or mucus saturates my clothing.

My skin around the stoma was also starting to look like a piece of work from all the tegaderm peeling. But this product called allkare protective barrier wipes cleared all that up. As far as diet, I try to avoid fiber, fresh fruits and vegetables, otherwise I would have to empty my pouch sooner than I would like. They also tend to clog up the catheter which makes intubating a pain. 

Hi all and thanks for the advice. I spoke to the stoma nurse at the Clinic and she reiterated what Sharon had said: nothing should be leaking. But there is no rhyme or reason when it leaks so that is why I am trying to determine what I am doing. It is stool however and happens mostly at night (usually about a tablespoon is what I find of my meal the night before). I am going to try the bathtub test first, I like that idea. But for now, the stoma nurse said to irrigate several more times a day and ensure the gunk is clearing the pouch. She thinks maybe I am eating something that is irritating my valve or pouch. Since I am really having no other symptoms (no bloating, pain or problem intubating), she suggested I monitor my symptoms and food intake. If it continues, I will trek up to see Dr. Dietz. And thank you for all the skin solutions. I thought my days of irritated skin were over when my ileostomy was removed, but not quite.  

Kara, 

That is sort of good news...I have had leaks for all sorts of reasons...you can go through the list and check off the ones that seem unlikely or possible.

1. a crook in the valve (it is like an indentation in the side of the valve that holds about a tsp of gunk and sort of slips out anywhere from a few mins to hours later. (I have it, it freaked me out at first but not anylonger...By the way, it comes from when my pouch fell and me repeatedly hitting the side of the vavle with the tube). The fix? None for now.

2. You pouch is down (fallen totally or partially off of the wall) meaning that it is pulling on the valve and pops it open when overfull or for other reasons. The fix? You need to have the pouch reattached. Laproscopy is possible. This is not to be taken lightly, the pouch can eventually adhese to other organs and cause future problems.

3. Peristomal hernia. A hernia that is very close to the muscle holding the valve into place. The valve is no longer held tightly in the abdominal muscle and wiggles and moves. That can cause leakage. The fix? Laproscopic surgery with mesh to repair the hernia.

4. Valve twist. The twist pops open the valve at inconvienient times or when the pouch is full...need attending by a k pouch surgeon.

5. Valve sinks. You would know it if it happened...you would have problems reaching the valve with the tube and your skin would try to close up over it. (OUCH) The fix? Valve surgery (unfortunately)

6. You have damaged the valve through rough intubations, not using lube (there is always time for lube!) or yanking hunks of junk out of the pouch. It usually starts with pain, bleeding and then gas incontinence followed by other gunk. The fix? Valve surgery.

7. Ulcers, stenosis, polyps etc...all of the other stuff that I know nothing about. They all need to be addressed by a k pouch surgeon.

8. Pouchitis or overfilling...it can irritate the valve and cause leaks.

9. Food chunks, skins and fibers getting stuck...they eventually come out.

10. Valve stretching...it happens. Again, only a kpouch surgeon can fix this.

By the way, I am a firm believer in keeping the tube in for a long period of time to see if it scars in that way. 

If a contrast study is needed then have the radiologist start by dripping a few drops of the Opac fluid directly into the valve to visualize it and its condition first.

That's all I've got...

Sharon

 Excellent list! Thank you so much Sharon for taking the time to describe the  demons of the valve. Frightening

I certainly have been guilty of undigested chunk of mushroom, an occasional lemonseed, or  stringy onion that hangs outside the catheter holes.  I say I'll never eat that food again – – or I'll spit it out after chewing it – – but give me another two weeks and I slip up.  This list is a good reminder of how consistent and focused one must be with maintaining their K  pouch. 

It sounds like the crook in your valve has stabilized. Is that so and is it OK? I hope so. You don't need– – Nor deserve – –any more obstacles.  Janet 

Thanks Janet, 

The onion strings, lemon seeds or red pepper chunks are not really that dangerous, just a pain...so don't sweat it...what really killed me one year is that I went on a diet and ate mostly salads all summer...got big into romain lettuce...until one day I kept pulling and pulling until I yanked out a huge ball of fiber that had sort of come together in my pouch...I was sure that I had killed my valve with that...I had a few of them and there was no way to break them down so I was very careful and very slow...now romain is limited, chewed diligently and avoided if possible!

Yes, it is a conscious balancing act at all times (that I usually forget until it is too late)...you need to exercise and keep those abs firm and strong but not so much as you kill yourself and pop a hernia...you need to eat but stay thing enough not to compromise your valve but not overdo the salads...yup...this pouch is not for the weak of heart...or the lazy!

Sharon

ps. don't panic...just relax and take it slowly. You may just have a crook that stocks a couple drops of gunk and spits it out at night...no gas release, no problem. If it doesn't get worse, then don't worry too much.

Thank you for all your support. Last night was a bad night- I was up from 1am until I had to go to work changing my ‘pad’ due to stool leakage and did have some air expel. So night time is when it predominately happens and I am perplexed at the randomness. I really did not think I had an issue but after last night, something is going on. Could it be a crook or pouchitis? (I have not completed the bathtub test yet). I read through the issues you detailed Sharon and several of them seem to fit my current symptoms. Alas, I better go see Dr. Dietz. I got very little sleep last night and my skin is angrier than ever right now.  I just hope it is not something simple that I could handle at home rather than drive six (6) hours to Cleveland...

Kara

 Your situation sounds miserable and I'm so sorry for it. One option might be to contact Dr. Dietz, explain the situation, and if he thinks you need a scan ask if your  local doctor can do it and send the results to Cleveland. Or maybe Dr. Dietz talks your doctor through the procedure.   Given your condition I can empathize with not wanting to travel six hours.

 When you irrigate how much water are you using? I find that if I've eaten something that greatly thickens up the stool then I need to irrigate as much as 60  ML 6 or 7 times. It seems like a lot to me but I irrigate until the stool is very thin and watery – – not unlike when you had The  K in 24/7, for the four weeks after the surgery.

 I urge you to keep a diary, as it will help analyze when the pouch works properly and when it doesn't. Keep us posted please, Janet 

Kara, 

When is your last meal at night? It seems to meal that you are dealing with 2 seperate symptoms...leakage due to an overfull pouch and positional leakage.

It may be that one out of 2 situations does not cause leaks but if you put them together then pow...leak. And now you said that the gas is escaping too.

Can I give you test number 2 after the bathtub test? 

Go onto a full protein diet for a few days...just meat, fish, chicken, eggs, tofu or nut butters...no bread, cake, rice, potatoes or other carbs. No veggies or dairy.

You can have some green veggies like salads or steamed greens like broccoli, non-cream soups (tomato of broth based) and fruit juices.

That is it...for about 3 days. (try doing this over hte weekend)...and see if you still  leak...if not then along with the tub test I will have some answers for you.

For now, stick to protein meals for dinner and cut off food at 8pm.

Sharon

Kara

i'm curious how you are doing and hope that you are OK. Did you contact Dr. Dietz and if so what does he think the problem Is?

The other day I foolishly  ate a dinner that had eggplant and mushrooms. Although I spit out most of the food that I had chewed up,  but knew it wasn't going to pass through, I apparently didn't spit out enough. Disgusting, sorry.   My catheter was repeatedly clogged and required multiple intubations. The reason why I mentioned this is that when pulling out the plugged up  catheter a small bit of stool or a chunk of mushroom would pop out. Now this isn't anything like leaking, such as you have, but I  mention it because I was wondering if this gives some clue to your situation.  Janet 

Hi Janet – I did go see Dr. Dietz and he ended up scoping my pouch and tube. Although my valve has slipped a little, it is not enough to cause leaks; therefore he believes the leakage could be from my stool consistency. It needs to be thicker as it too loose. He says I am intubating too much, causing irritation to my valve and not intubating enough at bed time thereby allowing my pouch to get too full. I was overworking my plumbing and I need to slow it down. So I need to modify my behaviors and be kinder with my pouch. It was worth the drive since I learned quite a bit. With my skin so irritated, the stoma nurse gave me some different ‘pads’ and some different powder that quickly cleared up the irritation. So with the aforementioned advice, I will see how it goes. I appreciate your story because I have had the same thing happen to me. I do get ‘gunk’ that comes out sometimes and it never really worried me. When I eat poorly (asparagus, lettuce and green beans for example) these chunks come out sporadically in addition to clogging my tube with every intubation, it is a pain and I should know better! Thank you all for your advice and follow up.

Kara

 Glad you made it to Cleveland despite the unpleasant drive. Thanks for posting the results of your appointment as the info helps the rest of us understand how to better manage our K pouches.   It sounds like you're on a new path.

How often where you intubating and during each session would you intubate multiple times to remove the more solid foods?   I'm also curious how much you irrigate. I was told to irrigate at least twice a day. Usually I intubate four times a day and irrigate extensively each time. One reason for the extensive  irrigation is because my stool is thick.  Another is because I had chronic pouchitis and extensive SIBO.  Does irrigation negate these two problems? I don't know but so far I've been clean.

 Did either Dr. Dietz or the nurse have any suggestions for getting the gunk through the catheter, other than mucho chewing or not eating certain foods? 

Hope everything is more manageable and you are feeling better. Janet

Another question, if you don't mind. What about the  excessive mucus output?

I was intubating 8-10 times a day, thinking I had to have the pouch empty (which will not happen as the pouch expands since it was like our colon, it will always have some stool in it per the stoma nurse). I had trouble intubating sometimes and I poked and prodded and that caused irritation and more mucus. The more the valve/pouch is used – or put to work – the more mucous it produces (per Dr. Dietz). I thought I had to irrigate 3-4 times a day to clean out the pouch. This is not necessary. Dr. Dietz said to irrigate if your stool is thick so you are right on Janet. Otherwise the stoma nurse said 1-2 times a day. I just had backwards thinking (maybe still on ‘surgery’ mode thinking). After my visit, I have changed my ways and my stool is thicker, I irrigate when too thick and I intubate 4 -5 times a day. I still have leaked at night since changing my ways but I think I will give it some time to let my body adjust accordingly. The stoma nurse said with mucous, it depends on the person. Some produce more, some produce less. But the more activity (intubation, irritation) the more mucus the pouch produces. The panty liner trick will not work for me right now; in fact, I have changed to Allevyn pads to pull the mucous away from skin to avoid irritation. Hopeful this will even out soon as I still try and take care of my new pouch.  

All kinds of stuff stimulate or dry up the mucus...if you are on antihystamines then you will dry out the mucus (allergy and cold seasons kills my stoma...I need double doses of lube)...

The more you intubate, the more you produce...spicy food stimulates production too...things getting caught too.

As for irrigating and intubating...I average about 8-10xs day...before every meal plus when I wake up and before bed for sure plus mid morning and mid afternoon.

I only irrigate if I need too (thick output)...If I am nice to my pouch and drinking enough fluids (and the right ones: prune or grape juice, hot green tea, coffee and gallons of water) then my output is pure liquid and does not require irrigation...you get a feel for it...irrigation does help to remove the left over gunk that sits on the bottom of your pouch...you can 'swirl' things around in there by pushing and aspirating abut 5ccs of water (not more than that or you could hurt your pouch) when it gets really thick...That could help you too.

Some foods I cannot seem to give up...so I blend them for the taste even if I can't eat them normally (corn, peas...) and for the others I limit myself to 1 tbs (humous, anything bean related).

You can eat anything...just in moderation.

Sharon 

Kara

That's far more intubating than I could tolerate! Then again I spend so much time irrigating that the net result is probably greater duration on the toilet for me than for you. At this point I intubate 4 to 5 times a day. I'm working on some new techniques to get the gunk moving, which I will share with you once I figure out the effectiveness.

When I had the ileostomy A stoma nurse offhandedly said it takes a year to get used to it. A year?? I probably said with an irritated voice, as I planned on having the bag for only six weeks. As it was there were several complications and I ended up having it for a year. She was right, that's how long it took me to adjust. I'm applying the same thinking to the k. That way I don't get frustrated with myself when I miss aim the catheter or my system doesn't cooperate the way I think it should. Hang in there  and keep posting your progress. It was really helpful for me to read what you wrote.  

Sharon unfortunately moderation isn't a word in my vocabulary, although I'm getting much better at knowing that I can't eat certain foods anymore – and it doesn't bother me. It's amazing that my BMI is a tad bit below 19!

Janet

If i miss your call call back 20 min after... i need to chat...tomorrow is may be the surgery...

Thanks. 5148989141

hi all--i'd like to circle back to the initial topic of mucosal prolapse.  i think that's my current problem.  it all started with my hernia/valve repair surgery on 13 dec.  since immediately after the surgery the inside part of the stoma episodically protrudes out of the stoma.  the opening to the valve lies flat with my tummy, and intubation is easy.   but the rest of the stoma, which is at least 75% of it, spills out--to be graphic.  at times it protrudes out about an inch.  i can push it back in, and at times it stays for awhile.   whether or not the pouch is full doesn't appear to effect whether it prolapses.  i started to wear an abdominal support for extra protection.  wrote to the stoma nurse, but the east coast is experiencing a wonderful snow storm--a bombbogenesis here in boston.  loving it! 

anybody have a suggestion?  thanks, janet

Janet, it could be caused by a peristomal hernia, a hernia of the muscle around the stoma...it would cause a loosening of the tissue that holds the stoma in place and would subsequently allow it to release or get popped out a bit.

If, and I am not saying that it is, it is the case then a simple patch fix can work miracles.

I had a mesh stoma repair done that was 100xs more effective than the open surgery that I had had done.

I hope that it is not the case but it is one of the possibilities.

Sharon

sharon--i am worried that is the problem.  worried because i just had hernia surgery three weeks ago!!!  don't want to go through it again.  

will talk with the doc next week, as a scheduled follow up, and ask what he did during the surgery.  he had told me, several times, that he would put a mesh around the entire valve, because as you have experienced it is better than the original.  but, after the surgery he said that he didn't do that because it would have been a more extensive surgery.  during my pre-op--doc wasn't there--a nurse told me that he had scheduled another surgery so if the scope showed a greater than anticipated problem then my surgery would be rescheduled.  my surgery had been scheduled four months ago!!  am beginning to wish they hadn't done anything and had me come back for the mesh procedure.  do i have to go through this whole thing again?   arghhh!  time for a walk in the snow.  j

No, not all over again...When (and I am not saying that that is the problem)  I had a peristomal hernia, the 1st time, they tried to literally cut from under the stoma via the skin and do an outside fix...it didn't work. 

Then Dr C went in and had to move to the whole pouch and stoma...that didn't fix it either.

Finally, I had my French miracle surgeon come up with something original.

Imagine a circle of mesh. He then cut it like a doughnut, a hole in the middle, and a slice taken out of one side. He went in via lap surgery, placed the circle around the stoma, flat against the skin and stapled it down.

It was short and sweet. I only stayed in for 3 days so that I could stay hooked up and that he could watch me but he could have sent me home in 2.

In any case, it was the best fix ever.

So, there are always solutions.

Sharon

that was the fix i thought i was going in for.......

i await a call from nurse and/or doc.  another problem is that it stings and hurts.  nurse suggested lidocaine, which helps for about 3 minutes.  pain isn't symptomatic of a problem, so ignore it.

and another problem, as long as i'm at this, is my mucus output has more than doubled.  previously it was bad, but now i go through 2-3 nursing pads/day.  btw, nursing pads are wonderfully absorbent and convenient, albeit a bit bulky.  janet

Ok, I can tacle all of this:

1. it may be 'fixed' but the tissue of the valve/stoma may have stretched out due to the bend or curve that you previously had and that may cause a turtle-neck effect meaning that you have an extra-long valve now and some of it just sticks out...no leakage or air or stuff other than post-intubation (a couple of drops is normal) then you are fine...

2. Stinging or burning may just be temporary...post op trauma to the zone...you don't say where it stings or burns. Is it the part that sticks out or is it deep down inside? 

3. Mucus is indicative of irritation. The whole zone got a whomp of irritation done to it and it needs time to settle down and heal...as long as there is a bit of inflammation (and its new friend, the mesh, is a stranger for the moment and it may just be irritated about him moving in) you are going to get more mucus. 

Give it time to settle down before you decide if this is a problem or not...I always say 2 months just to be sure.

For now, relax and heal. Give things time to settle in. No hurry...

By the way, the amount of mucus that you describe is my normal...just saying. I change pads about 6xs/day plus I wear a 1/2 mini pad glued to the inside of my clothing for more protection...and I still have a few drops come through...I got used to it and deal with it normally...

Sharon