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Please help - Stoma Shrinkage/retraction? Skin Irritation

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Posted 6/27/2007 3:19 AM (GMT 0)
Hi!  I had an ileostomy Feburary 2006.  Things were going relatively o.k. until recently.  I am experiencing stoma shrinkage or maybe I should say, it seems to change in size without any indication.  As a result, I am having really bad skin irritation problems.  My stoma is normally 1 inch across (irregular in size and I have to use Convex barrier).  Now, at times it shrinks into a smaller size, thus creating a lot of leakage.  I had to change my barrier and bag 3 times within 12 hours between last night and this morning.  To my horror, this morning, the stoma shank into smaller than the size of a penny and is retracted below the skin!  Fortunately, it comes back out after a couple of hours.  I have tried on different barrier, barrier film, powder but still can't get a hold of the size changing stoma.  My skin is all raw, swell up and weeping.  It is both itchy and painful at times.  I would greatly appreciate it if any of you have been through this and how do you keep things under control and bring back healthy skin?  I am so exhausted and am worrying that I would have more problems down the road.

Tintin

Posted 6/27/2007 8:36 AM (GMT 0)
I've had an ostomy for 18 years. At first I leaked a lot also. See your ET nurse ASAP! I can't tell how to fix your problem without seeing you. I'm sure there's a solution and the ET nurse will help you find an appliance that works for you. Don't wast time and money on appliance that aren't right for you. I know it's frustrating, but believe me, there's always a solution!
Posted 6/27/2007 11:45 PM (GMT 0)

vette guy,

Thanks for your reply.  I did go to the ET nurse after having the skin irritation problem for a couple of weeks.  She did seem to think that it was a big deal because she had seen people with much worse and damaged skin.  She gave me a sample ofconvatec moldable convex skin barrier to try.  It was working great at first because the ring "snug" around the stoma.  It is supposed to "memorize" the stoma size.  However, two days ago I experienced some irritation around the area, it was then I realized that my stoma had shank and my skin was exposed to the output.  I don't know how to correct the situation.  I was told that it was normal that the stoma shinks sometimes and I shouldn't worry about it as long as it sticks out again.  In the mean time, I have this skin problem that I don't want to let it get out of hand.   Also. I notice that when I sleep, the output tends to "cake" around the stoma and the acid "eats away" the barrier ring.  I wish I could sleep standing up!  I hope anyone out there who had been through all these can give me some pointers.

Thanks again for writing back.

Tintin 

Posted 6/29/2007 2:35 PM (GMT 0)
I use the Eakin seals, and the convex flange, this combination is the only thing saving my skin. I put the Eakin seal around my stoma as close as possible (they are moldable and hold up much better than paste), if the stoma is flat or low at the time, I even put the edge over the stoma. I center the convex flange on top of that (I use a small mirror on a stand on my bathroom countertop), and it holds for a good 24 hours, sometimes longer. I've had a problem stoma for years now, and this is the only combination that has helped. Oh, and don't forget to use No-Sting barrier wipes, any brand will do, because of the irritation.
Posted 6/29/2007 9:41 PM (GMT 0)
Dear JudyK89

Thanks so much for sharing your experience.  I greatly appreciate it.  Good tip on putting the edge of the seal over the stoma.  I had never thought of that.   I have Kaiser Permanente and I think they only provide Hollister appliances (the ConvaTac barrier is just a sample that the E.T. nurse happened to have).  I hope that Hollister Convex barrier and ring barrier would work just as good. Also, I had to request a few times to get enough supply (stoma rings) for appliance change every two days.  (Before it was a box of 10 rings per 3 month!)  I guess I will have to pay out of my own pocket if I do need to put on a new ring everyday.   Will see what is going to happen.  As long as the occasionally retracted stoma is not an indication of anything more serious inside and that my skin has a chance to heal, I am happy.  I guess we all have been through so much that we really long for some "normalcy" and peace in life. 

Thanks again for your help!

Tintin

P.S.  Good luck on your surgery in July.  Hope all will go well.

Posted 6/30/2007 4:16 PM (GMT 0)
I used to sell ostomy supplies and while it may have changed, usually as long as you've seen an ET nurse and/or doctor, you can get more supplies. They usually have to get a new Rx from your doctor, so as long as he/she knows and understands what's going on they should be authorized.

The retracting stoma can be an indication of something going on inside. It could be adhesions, or it could be disease. In my case it was the disease returning which caused inflammation and shortening of the bowel which pulled from the inside.

If you have any other symptoms (or if you don't if depending on if the reason for your ostomy is something like cancer) I would have it investigated.
Posted 7/1/2007 2:59 AM (GMT 0)
Thanks for the info on ostomy supplies.  Do you know if there is a limit on how many barriers/pouches/rings that one can get?

Oh, my, a retracted stoma can be a sign on the illness coming back?  I am a Crohn's patient and had been through a lot before my ileostomy surgery last year.  When I had a case of stoma retraction last December, my G.I. doctor just brushed it off and did not seem to think of it as anything worth looking into since the stoma came back out.  Now I am getting a little worried.  My stoma retracted again this morning when I took a shower and then came back out later.  Do you mind telling me whatelse to look for so I can convince my G.I. doctor to check on it?  One of my biggest hurdles besides dealing with all things that come with the illness is to get my doctor(s) to help me.  I was in pain from 7 am to 3 pm in the ER last year before my guts was bursted because the G.I. doctor on duty did not think that I was in any emergency.  He was the same guy who turned me away the night before when I went to Urgent Care with obstruction problem.  Same guy who discharged me from the hospital when I was passing out blood.  I have so many bad experience with uncaring doctors that my fear for getting (or not getting) treatment is almost as great as dealing with the illness itself.  I am sorry that I just keep spilling out my problems.  It's like I do try to get a hand of treating the illness before it gets out of control but my doctors don't seem to care.  They always claim that this is just how this illness is supposed to be.

I do thank you from the bottom of my heart for sharing your experience with me.  Sometimes I really think I learn a lot more from this forum than anywhere else.  I hope all will work out well for you.

Posted 7/1/2007 10:36 AM (GMT 0)
You'll have to ask about limits, every policy is different. Kaisar used to give out all you needed, as long as it was medically necessary but I hear now that they have co-pays and limits. All the insurance companies are doing it now. I never used to have to pay a penny for my supplies (way back when in the dark ages), now I have a co-pay and a yearly limit.

Also, Kaisar didn't use to only carry one type of appliance and I don't see how they can now. If you like your appliance (which most people do because it's all they know) don't worry about it, but if you're having issues you may want to send for some samples from other companies or different styles from Hollister. If you find something you really like, or maybe before you even start looking, call Kaisar and ask them if they can order specific appliances.

If your stoma is retracting and coming back out, I would say it could be a hydration issue. Or it could be part of your normal paristalsis (spasming of the intestines to move the food along). As long as it doesn't retract and stay that way it's probably okay, except for fitting your appliance that is.

Mine retracted and actually the entire area around it pulled inward, but since it happened over time it was hard to tell at first. Just keep an eye on it. That happened because of the Crohn's.

Now that you've been diagnosed with CD you "should" get better care if you need it. It's that no man's land when no one knows what's wrong that gets most of us. If you ever have to go again, being able to say "I have Crohn's Disease and may be having a bowel obstruction" usually gets some attention.  Having said that however, some ER's are just notorious for slow and/or inadequate care if it's not a visible trauma. Now that you have a GI, call him/her before you go to let them know you're having issues, or even your GP if you have a good relationship with him/her. They may make a phone call and pave the way a little.
Posted 7/2/2007 6:59 AM (GMT 0)
Sedona gal, I had the following surgeries Hemhoidectomies in 1985, 1991, 1993 also other female surgeries lots, in 1994 Colon Resection, 1995 Ventral Hernia, Nov 2005 other female surgeries, May 2006 Colon Resection, Aug 2006 Bowel Obstruction, Feb 2007 Colostomy/ Ventral Hernia repair without Mesh. I now I'm having problems with swelling around my stoma with red irritation it looks as if my stoma going under my skin, I have severe abdominal bloating, my fear is another Bowel Obstruction because there is very little fecal matter coming out of my stoma, is this normal ?

Does anyone have any suggestions?
Posted 7/2/2007 6:00 PM (GMT 0)
I suggest you go see your GI or surgeon. You have something going on that needs to be addressed but it could be anything with your history.

Good luck and let us know what's happening.
Posted 7/4/2007 2:38 AM (GMT 0)

Judy,

Thanks again for all your help. 

Well, my "Crohn's" was diagonised 13 years ago after repeated hospitalization and a J-pouch which quit working last year.  Before that, the G.I. doctor just told me that I had colitis.  He didn't do anything when I was having bloody diarrhea and in terrible pains.  Not until I dropped 14 lbs. and my blood pressure went down to almost nothing in one week that he put me in the hospital.  Anyway, he is supposed to be the most senior G.I. doctor there.  So I switched to antoher G.I. doctor who is stationed further away from my house (and the hospital I checked into).  I did info the ER doctor that I had Crohn's and obstruction problems (I was already hospitalized twice right before then) but he didn't seem to have a clue.  So he checked with the same G.I. doctor whom I switched away from.  And that's how I ended up with a busted intestine and spent some time in intensive care.  Anyway, it is a good idea that I should try to get my own G.I. doctor involved ASAP when it happens again.  (The problem is, she seems submissive to the more senior G.I. doctor who turned me away).  That's why sometimes I feel so hopeless with my situation.  I am so afarid of having to go to the E.R. again and I know that with my pre-existing condition, I won't be able to switch to another insurance coverage.

What do you think of Immuno suppressent drug?  My G.I. doctor wants me to take it.  I took it for a while but I got a nasty cold last winter and it lasted for over a month.  So I stopped taking it and have been off since.  I have taken Prednisone before but it didn't do anything for me.

Whatever your surgery will be, I hope all will go well and that you will have a good recovery.  Thanks again for your help to all of us here.  Life is not easy but you have helped make it a little easier for people like me.

Tintin

Posted 7/4/2007 2:55 PM (GMT 0)
Tintin,

Sounds like you've had a rough go of it.

You need to make an appointment with the GI you feel most comfortable with, and obviously now that you've been diagnosed with CD, you've been vindicated with the other idiot GI, and you need ongoing treatment.

You should go over the the Crohn's Disease site and do some searches on the different drugs. The important thing with any of the drugs we need to take is that we need continuing care and blood tests. If you have any problems you have to let your doctor know.

The thing I've found to help the most is do your research, know what to expect, and don't be afraid to be aggressive and/or assertive with your own treatment and doctors. It's your life. If a treatment doesn't work, move on, if a doctor's not working out, move on also.

Thanks for your good wishes on my surgery. I'm having yet another resection but I'm ready. Tried all the drugs once more, and once more they didn't work.

Keep us posted, I'll be checking if I can get my computer to work in the hospital.
Posted 7/7/2007 7:37 AM (GMT 0)

Hi! Judy,

I don't have any new questions.  I just want to let you know that you have done a lot for many of us here and I (we) cannot thank you enough.  You have been a great inspiration for me and that people like yourself have really helped me in gaining the confidence to keep on living.  Sometimes I just cannot believe some of the things that I (and many other crohnnies and colitis patients) have to go through.   I am sorry that you are having another resection (and I thought that an ileosomy will greatly reduced the need for it!).   I hope all will go well and that you won't have to spend too much time in the hospital.  I have been thinking of you, that's why I am writing so late at night (it's after midnight in California). 

Please take good care of yourself.  I am waiting for you to come back and write to us.

Tintin

Posted 7/9/2007 2:49 AM (GMT 0)
Hi!  Stacie,

I am sorry about your problem.  I am not sure if you have the same problem that I have but my experience is, my stoma shrinks sometimes which makes the cut out hole not fitting anymore.  The ET nurse gave me some Convatec sur-fit durahesive moldable convex skin barrier (if you don't have a dip on around your stoma, then you probably don't need a convex one) which has an opening that snugs around my stoma like a turtle neck.  So even when my stoma "shrinks", it still "hugs" around.  By doing so, it helps prevent the spill onto the skin.  It seems to work (even though my skin is still red and patchy, at least it is not weepy like before and the irritated area doesn't seem to spread).  Please make sure that it is the kind that is "moldable" because you mold it around your stoma.  I only had a couple with me, so now I switched back to Hollister convex barrier, plus the barrier rings.  I think right now your skin maybe so irritated that it is all weepy and raw, that's why you are feeling the pain and the barrier is not sticking.  Make sure that you tell your nurse about it and hopefully she can give you something to try.  When I was with the nurse, she muttered something about my skin was not "big" enough or else she could use some kind of a "plate" to apply on the infected area for protection before you put on the barrier.  Maybe you can check that with her.  I think it is important to get that under control so the infected area doesn't spread.  Right now I am still wondering when I will get my healthy skin back.

Good luck on your visit to the ET nurse.  Hope she will help you find a solution.  Keep us posted.

Anyone out there who has successfully treated this skin problem, please give us your advise.

Posted 7/9/2007 3:01 AM (GMT 0)
I am having a major problem with itching around my stoma tonight. I had very runny stool and it looks like stool has gotten on my skin under the stomahesive. I am going to try the Eakin seal tonight and see if that helps. This itching is just awful!
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