Indiana pouch leaking, need advice :(

[tehuti88]

Hello, I posted an earlier topic viewtopic.php?f=8&t=25917 which no one responded to, though the situation has changed for the worse since then. I could really use some information or support right now. I'm sorry this is so long but I bolded some important parts.

I no longer seem to get the "gas pains" that signal when the pouch is full and needs to be emptied, and now I find that I miss this, because the pouch has taken to leaking by surprise, and it REALLY leaks. The way it started was it would leak somewhat AFTER I'd cath/empty myself, which was confusing, since shouldn't it be empty then?? Then it started leaking a few hours after a cath. Now, when I remove the gauze bandage over the stoma, it's like it's spat out a gob of yellow mucus whenever this happens, and it's quite messy. My mucus production seems to have increased though the only diet changes I can think of are that I've started taking a probiotic (Align), cranberry pills, and have resumed taking cholestyramine, to combat my diarrhea. (Seems to be helping, but now I wonder if one of those is causing these pouch issues?)

I also notice that the stoma passageway isn't as "tight" as it was previously; sometimes it would seem to clench around the catheter as I inserted/removed it, but it no longer does that.

Previously, I could go 4-6 hours easily before needing to cath, and the only issue would be the gas pains or a little leakage. Now, it varies between 3-5 hours and I only know I need to empty when I've leaked all over myself.

The amount of urine in the pouch doesn't seem to matter--the average I hold seems to be around 12-14oz before problems ensue. But I've had these leaks occur when there's only 8oz in there, and at other times I get 14oz without a leak! This is especially perplexing, considering that before this issue started, I got up to 16oz in there without leaking, just with the gas pain. So I KNOW the pouch isn't spouting out mucus and urine solely because it's full.

I was thinking, well, at least I can still sleep with only one bathroom break at night and without leaking myself...but it's gotten worse. I leaked myself twice in my sleep last night. Went to bed around 2:30AM, awoke at 6, gauze pad wet, emptied about 12oz. Woke around 9, feeling gas pains in my insides; I thought, well, the pouch will hold, I'm getting up at 10 anyway. Then woke again around 9:45 with urine streaming down my side. It soaked through the gauze AND the washcloth I had folded and pressed over the stoma. Emptied and it was around 12oz. Should NOT have caused a leak like that.

I kept a careful eye on the gauze pad the rest of the morning--dry, dry, dry, then BAM, about 3hrs, 45min later, I just suddenly started leaking all over. Emptied it--it was only 8oz! So the pouch wasn't full, and there's no warning, no gradual leak, it just happens all of a sudden. I no longer have any warning pain to empty before an accident occurs.

I guess I'm going to have to waste bandages (they're expensive and always sold out) and empty every 3hrs just to be safe. But this is so frustrating. I've had this pouch since December. It held up to 16oz before without leaking, just a few days before this issue started--now it can leak with as little as 8oz. How is it supposed to expand if it leaks before it can get full? And why is it leaking when it's not full? This is acting just like pouch spasms, which I used to have when I still had indwelling catheters/bags, but I don't FEEL a spasm like I used to. Why not? And why would I suddenly be getting spasms again when those stopped over a month ago?

I go to see my surgeon later this week but I hate the thought of going through this indefinitely, and I'm just so frustrated and sad that I seem to be going backwards and this is so unpredictable (it's a 6hr drive down there, with limited rest stops). I'm also worried this will get worse. Is this normal? Will it improve?

I could really use some support or advice about this, so I hope somebody can reply or show this post to somebody who has info.

[tehuti88]

My doctor recommended me this forum, but I guess I'm on my own.

If anyone knows another forum I could go to for advice or support, I'd appreciate it, it hurts to have to go through this alone.

Also, anyone who may be getting an Indiana pouch soon, feel free to contact me. I'm painfully shy and I can't say I'll have answers to questions about followup since I'm pretty much dealing with this as I go along, but I can at least describe how the experience was for me personally, and can offer a sympathetic ear. I don't want anyone else to feel so alone in this.

Thank you all anyway.

[Amina414]

Hello,

I have been living with an Indiana Pouch since the end of 2012. This is the first time responding to an entry but your post really moved me to respond. I can remember needing advice and having no one to ask that was not just speculating. I hope I can share some helpful advice.

In my particular situation, the small port/stoma is located about three inches over to the right of my belly button a little below my waistline. My Indiana Pouch has leaked since its inception. Please do not equate the pouch leaking with it being defective. It is not as nature intended and this substitution comes with some livable challenges....leaks are one of them.

To get a handle on this situation, Tegaderm has become a part of my cathe process. I set my cell phone alarm to ring every 3.5 hours and cathe at regular intervals. I use a Bard catheter kit, a 4x4-3/4 tegaderm sheet, and a 4x4 sterile gauze pad each time I cathe. I wipe the area with a baby wipe, cathe, and then cover the stoma/port with a tegaderm sheet with a folded sterile gauze pad in the middle.

The tegaderm with the gauze pad generally captures any leaks, keeps my clothes dry, and shields me from infection. Most of my leaks are subtle and just dampen the gauze pad until it's time to officially cathe. If it leaks too much or erupts suddenly the tegaderm/gauze pad combo will generally capture it and give me a 3-5 minute window to get somewhere to properly cathe. This allows me to go out in public with more confidence. Although I do stick to my official cathe intervals even through the night, the tegaderm/gauze combo has served to keep me from wetting the bed.

I make it a point to drink only water and hot tea with no sugar. On very rare occasions, I will have fruit juice with no sugar added. Sugar and my pouch do not work well together. I drink at least 16-24 oz of water in the morning and repeat this regime in the afternoon and evening. I will also spit on a bottle of water throughout the night. This keeps my pouch functioning more smoothly and seems to cut down on the mucous.

The cost of using a new catheter kit, sheet of tegaderm, and sterile gauze pad was initially very expensive. I became very resourceful and negotiated with my insurance company for more coverage. I had to get a note from my doctor explaining the advantages for having these supplies with detailed information on how many of each item was needed per month. I researched and negotiated better co-pays with medical supply companies until I found one that I could afford. I continue to order supplies from Ebay and Amazon particularly when there is a sale.

Even with all of my tactics, I will still occasionally have a sudden high output that completely catches me off guard and wets the bed, my surroundings or my clothes. I typically keep a change of clothes in the trunk of my car and at work. On the bed I have a cover that protects the mattress and I have several sheet sets in the event. No matter how much I plan for it, I am always discombobulated when it happens. When I start feeling a little down because I wet myself, I just remind myself that this is my new normal and I'm lucky to still be alive.

[Lisalgwb]

I had my Indiana pouch done at the Cleveland Clinic 20 years ago. Getting on a strict drinking, eating and draining schedule is the first order of business. Your old life and ways have to make way for your new situation. Soon that will become the norm. Do you have a good enterstomal therapist? They are invaluable. If you don't have one find one at a major hospial. Irrigation needs to be done also, the therapist will help you determine how often and how much each time to be effective. It's sad to say but not all doctors performing this type of surgery are experts. They just do a passable job and you have issues down the road. If you are thinking about this surgery go to the best. It cost more and they don't baby you like your local doctors. But the end results are well worth some embarrassment at their gruff treatment. They quickly decide if your a possible surgery patient or not and move on. Others just as ill are waiting too.
I empty my pouch 3 - 4 times daily and maybe every 6 months have a leak. The schedule is everything. Soon you will be able to tell. You can't overdo it or ignore it and expect great results. I also stopped eating seeds, nuts and oatmeal to stop or control the intestinal cramps since they seemed to cause the re-section to be agrivated. Please contact me if you would like to pick my brain. I made it my mission after surgery to do well! Before surgery I wasn't living just existing so I saw my surgery a an opportunity to become a whole person again.