I had to brag, right?

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run4pancakes
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Date Joined Oct 2008
Total Posts : 938
   Posted 6/7/2011 5:47 AM (GMT -6)   
So I was just here talking about how well everything was going, and now....well the you know what is hitting the fan. Ok, it's not that horrible, but I am having a rough time all of the sudden.

I got the fun of learning that the secondary opening of my loop end ileo can and, apparently now will, generate output. That was exciting as I thought I was defective and had visions of needing a stoma revision until my great CC nurse calmed me down. Well, it's resulted in multiple seal losses including the mother of all blow outs that woke me up at 5:00 a.m. this morning. When I got into the shower to clean up, my pouch was only attached by the very bottom strip of the wafer...the top and sides had completely blown out and the bag was virtually empty. Luckily, I tend toward thick output and the belly band I wear 24/7 kept everything very well contained. Didn't even have to change my sheets!

I am really distraught at this point that I keep losing seals. This is the second time in less than a week and I just put this most recent pouch on late Sunday night. I'm going to call up to CC and try to talk to a stoma nurse. I may drive up if needed so they can help me with this. It's 2 1/2 hours in the car, but worth it if they can help me fix this problem. I think the output from that secondary opening is getting underneath the paste ring and then compromising things??? I tried to cut my wafer a little bigger on that side to allow room for that opening...but something is obviously not right or working well.

How do you guys deal with leak situations like this? It is really undermining my confidence as far as going out in public, running, etc. I feel like I'm constantly checking on the pouch now and I hate that feeling. I know I won't sleep well tonight as I'll be worried about a repeat performance. Any advice is much appreciated!

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 6/7/2011 7:12 AM (GMT -6)   
So sorry, what a drag..... I had a leak yesterday too, after having things under control for a while.

It sounds like you're doing the right thing getting in touch with a stoma nurse, as your problem might be very specific. I was having a lot of problems and my nurse switched me to a convex wafer and things had been great until yesterday (and that one was right at the beginning w/a new pouch, so either I didn't press it down right or it was defective)

Does immodium or lomotil work for you? Could you take a lot of it tonight and get some sleep?

Might a belt help? Just tossing out ideas, as I really don't know the answer.

Great that the belly band kept things in. Do you have sure seals? They can help too.

I think it's going to be hard to avoid checking all the time until you figure out what's going on.... so asking here and talking to the nurse are probably the best things to be doing.

I hope you get some relief soon!
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 6/7/2011 8:31 AM (GMT -6)   
Thanks for the reply. I saw you were having some trouble, too. It's so tough...especially when you just start feeling confident about things. I do wear a belt and had it on, too. I'm sure that was a good thing with as far as the wafer was blown off! I have only used immodium when I've been watery. I hadn't really considered taking it before bed, but I might!
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 6/7/2011 8:47 AM (GMT -6)   
So Sorry your having problems at the moment but its nothing that cant be fixed. I think your stoma nurse is the best person to help sort it out as she can see first hand where its not fitting properly. I must be one of the lucky ones as I have had my ileostomy now for just over 2 years and only had 2 major leaks and that was within the first couple of months after surgery, as my stoma was changing in size etc. I tried several different samples from appliance companies and my stoma nurse suggested I needed a flat base plate rather than a convexity and I also use a 2 piece system so I can see exactly where Im placing the base plate and all I use is a small amount of paste around the stoma and it works a treat. I used to use sure seals and stoma collars but found my output would leak under those so since I have been using the paste I haven't had a problem. But I know a lot of people on here swear by sure seals but with everyones stoma being different shapes and sizes it doesn't work for everyone. Only other thing I can suggest is make sure you are completely dry around the stoma before putting a new appliance on, and also doesn't hurt to heat seal it with your hair dryer once you have it in place. Hope you are able to get it sorted soon. I also made some dashes to the hospital in the early days to ask my stoma nurse several questions about my stoma and appliances and she was a wonderful help.
Take care and good luck,
Keep us posted on your progress
Doreen

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/7/2011 2:37 PM (GMT -6)   
I have an End Loop Ileostomy and did on occasion have issues like that but, for me, it was when I covered up the lower hole...when it needed to evacuate it would just stay under my wafer mad and cause leaks/blowouts. I did see my WOC Nurse and we figured it out fast what I was doing wrong :-)

When I had just a Loop Ileostomy I had issues with having bm's so my surgeon (CC doc) would put a few sutures in to 'close' the lower hole so I wouldn't have that issue. If you are connected below that may be something you could do.

To be honest, it would be worth the day of driving to give you peace of mind...confidence in your appliance is important!
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/7/2011 7:37 PM (GMT -6)   
It must be another one of Murphy's Laws, as soon as we say everything is going great, here comes a problem, right? Thank goodness, this one is fixable!

My recommendation is to try an Eakin Seal under your wafer (if you're currently using Stomahesive paste) and put the wafer onto dry skin (ie - no Skin Prep, etc.)

If you're still having leaks, consider trying a different wafer. There are so many to choose from, and the manufacturers will mail you free samples.

I've been using the Coloplast Assura Extended Wear wafer (item #2833 with matching pouch #13986) for over 5 years and have only had one leak, which was my fault, because I tried to push it past 7 days. They stay on really well and are waterproof and sweatproof. I know... I live in Florida. :-)

Hope all goes well with your visit with the ostomy nurse, and let us know what she recommends.

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 6/8/2011 9:01 AM (GMT -6)   
Us too....not a leaking situation which I hope you can get a handle on real soon.

Initially his leaking was contributed to the fact he was using a seal under the convex wafer. He gained weight and I asked him to humor me and let's try this change with just the wafer. He had gained about 8 lbs at that point and his stoma is not very large and does no protrude much so I reasoned out at that point there was too much convexity causing the leaking possibly??? Well that did the trick for him UNTIL his skin decided it did not like the adhesive. We tried the all pectin wafer type before switching to another brand but that was not secure enough.

So here were are now using the convatech moldable wafer and lovin' it and having great results for the past 6-7 changes but on Sunday there is some irritation developing at the outer adhesive area which is a bummer. Granted it is great to have a wafer that does not leak but we certainly need his skin to like it too.

So we might be onto #3 to try. I truly understand your frustration trying to find the right balance and a dependable system. I hope that happens soon for you.
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 6/8/2011 9:19 PM (GMT -6)   
Thanks for all of the kind replies! I did get to speak to a CC WOC nurse and we have a multi-step approach going on. Initially she agrees with the thought that output from that lower opening is getting under the wafer. The problem is, even when I cut a little bigger, the Adapt ring I was using swells and turtlenecks so much it still covers it up. So step 1 was to swap the Adapt ring out for Stomahesive paste which doesn't swell as much. I did change things out last night around midnight and the pouch has felt better throughout the day today, but I'm still not completely comfortable. She is also sending me some samples from Marlin of a convex wafer that is supposed to be more flexible and will move better with my body. It's a one piece, but I don't really swap out pouches or anything so there is no reason I have to stay with a two piece. It's just what I've always had. If none of this works, then I will go in. I've been losing weight and the curvature of my stomach is a bit different, so it may be time for a change.

I'll keep you guys posted. Thanks again for all of the support. :)
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 6/9/2011 7:40 PM (GMT -6)   
Run4 hope the new wafer works. I had to change when I gained some weight, so makes sense that losing weight would lead to a change. Glad you have a plan.

UC wife, hope the irritation is minor and you don't have to go pouch shopping so soon....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 6/9/2011 7:56 PM (GMT -6)   
Hope you have good luck with the new system. It must be so frustrating to find something that you are confident with and works well, only to have it stop working and have to start over. Sounds like loop ileos are tricky.
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010
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