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bad/sensitive skin before surgery - how did you fare with the ostomy?

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Posted 4/16/2013 6:13 PM (GMT 0)
Hello all,
We are again facing my daughter beginning to flare (UC). I don't know if she has some sort of seasonal allergy that manifests this way but spring always means flare for her. I don't know if any of you remember but last summer she was scheduled for surgery but was "too ill" as per her surgeon (I know many are at death's door but she responds to steroids and her surgeon - one of the best surgeons working on ped IBD - felt it was not worth the risk). So, she did well coming off pred and maintaining on asas, then flared, when we went paleo, which worked great until now. I don't know why it's stopped but I'm preparing myself for the whole process to start again (akin to torture).
My question is - did any of you have very sensitive skin prior to surgery and if so, did you have problems with the pouch. I'm very concerned about this in the case of my daughter who reacts to many things since a course of cipro caused hives in December which have still not gone away (taking an antihistamine for that and seeing a useless allergist, trying to get referred to another one).

Thanks so much for you help as always.
Posted 4/16/2013 6:27 PM (GMT 0)
Hi KC, so sorry to hear about your daughter :( For what it's worth, I have always had very sensitive skin, and although my peristomal skin tends to look a little red during wafer changes, my WOCN tells me it's just from the fresh physical trauma of removing the old wafer, not actual ongoing irritation and nothing to worry about. Because my skin is sensitive it's also been recommended that I use very few products under my wafer (for example, many use adhesive remover solution, I do not) and I wash with warm water only, no soap.

I also had quite a few skin issues that arose while I was on longterm Cipro and Flagyl (about two months prior to surgery) -- mainly hives on my hands, feet, and chest. I'm pleased to report that those issues disappeared shortly after surgery... I'm not sure if I can attribute it to coming off of antibiotics or to removing my colon, and of course mileage varies greatly.

Finally it's been mentioned here many times before that you can order free samples and try different adhesives on your skin to see what (if anything) causes a reaction, just be sure to test on a patch of skin that won't be anywhere near surgery or proposed ostomy (I would avoid the entire abdomen), in case there is a reaction.

Best of luck
Posted 4/16/2013 6:57 PM (GMT 0)
Hi Pluot,
I think testing the adhesives is a great idea but it'll be quite traumatic for her. I prepped her for surgery last year only for it not to happen and now I'm going to likely do it again. Poor kid. I'll figure out a way - I guess cutting a piece of the flange (?) and sticking it on her back or something like that.
So did you take c/f right up to surgery? Cipro is a nasty nasty drug and though our GI says it's been too long for it to have been the cause it started with it. Our friend who is an MD says it's not uncommon for urticaria to be reactive for upto a year after stopping a med before the body turns off that reaction. Hope so.
Thanks for your help!
Posted 4/16/2013 7:07 PM (GMT 0)
I know, I was just thinking about how much it would suck to be sticking random ostomy appliances all over your kid. Cutting a piece sounds really good! With most you would only need a tiny sliver, like one "pizza slice" out of the circle or oval, if that makes sense, enough to get all of the different adhesives (e.g. my Hollister wafer has a tape adhesive on the outside and more of a 'putty' type adhesive in the middle).

I took C/F right up until the day of surgery. I took 1500 mg daily of each for about six weeks, and tried to taper down to 1000 mg daily for the last weeks before surgery (let me tell you how well that worked: not well!) Although I was in terrible shape and definitely needed surgery, the kick in the pants that forced me to schedule it quickly at the end (from the time I decided on surgery to the time I got into the OR was 4.5 days, and it would have been faster if I hadn't decided on a Friday) was developing optic nerve neuropathy from Flagyl. I knew that of all the things I was going through I would never give up my eyesight over fear of surgery or a permanent ostomy.

Edited to add: I actually had "idiopathic" urticaria several years ago, before UC diagnosis, that required two rounds of pred to clear up. My GI believes it was an extraintestinal manifestation of UC...

May I ask how old she is?

Post Edited (Pluot) : 4/16/2013 1:13:55 PM (GMT-6)

Posted 4/16/2013 7:31 PM (GMT 0)
Kill- sorry you and your daughter are back on the merry-go-round again. :( i was diligently trying to get adhesives and products from manufacturers but they pretty much all say they wint send anything but literature until I have surgery. I guess one should lie and cite some arbitrary stoma size. I just had another ostomy nurse consult today (local, not with facility that I will go to) and forgot to ask for some adhesives to take home- drat.
Posted 4/16/2013 8:04 PM (GMT 0)
I have some if you want me to send them to you. Got a bunch by asking coloplast and some more from the ostomy nurse presurgery last year.
It truly sucks. I have a few more potential tricks up my sleeve but I have just had it. One thing after another.
Pluot, my daughter stopped cipro in Jan but still has the hives?? I hope they go away but I don't know ***? Just hope it's not an issue with the ostomy stuff too. That would be too much.
Posted 4/17/2013 12:27 AM (GMT 0)
I have extremely sensitive skin and also have had many rashes develop from various drugs. In fact, while on IV Cipro in the operating room last fall - I was told my whole body went into some kind of rash. It was with me for days. And now - cipro is on my allergy list too.

I am on about my 5th year with an ileostomy (on the 4th ileo and now permanant one) and I can honestly tell you I have had very few skin problems. There are so many products out there, that she will be able to find one that works for her skin. Definitely for me, I tried a few products that did cause trouble, but I figured it out right away and changed to different one. It is generally thought that certain manufactures products are better for more sensitive skin. For me that is coloplast. Also - I too have found that the less is more approach is far better- both for my skin and also for sealing and holding power!

Also - I surely wouldn't bother pre-testing for adhesives. Especially since after surgery so much of your body chemistry can change. Just wait until after surgery and make sure you have excellent ostomy nurses available. And if you sense a skin problem.. address it immediately. Do not wait, even one day. And if worse comes to worse with a skin problem - there is always a magical steroid spray (kenalog). Give a shot of that on a few changes and skin is back to normal. I call it prednisone for my stoma!
Posted 4/17/2013 1:40 AM (GMT 0)
I have generally sensitive skin.

I would request a contact dermatitis test from your allergist. You daughter will get substances put on her back. Her back will then be covered in gauze/tape. She will not be able to get it wet for 48 hours. You do not get pricked for this. Just things taped to your back.

I forget which chemical set is related to ostomy supplies (or there might be more than one chemical set related to ostomy supplies). But through testing you will know if she is prone to irritation from those substances. It also tests for things like fragrances and make-up components, so this could be useful info for later as well.

Putting ostomy supply patches on is also a good idea. But keep them on for 48 hours. Obviously if the area get hugely red and itchy then take it off, but just because it doesn't react in a day doesn't mean it won't react in two days.

Here's a link to the chemicals tested using the "TRUE" test. If you click on each chemical, a .pdf opens with common items that contain that substance. http://www.truetest.com/commonallergens.aspx
Posted 4/17/2013 1:09 PM (GMT 0)
My husband does have sensitive skin which was one of my biggest concerns when we found out he was not a candidate for the j-pouch and ended up with a permanent ileostomy. I had visions of him having all sorts of problems.

Initially the Hollister and Convatech wafers with outer adhesive did ultimately bother him and give him rashes on the outer area. He tried the Hollister without the adhesive but it didn't perform (stay on) that well for him.

The Coloplast SenSura wafer is "the one" for him. He needs light convexity. It is 2 yrs 4 months ago he had his surgery and I am guessing it is close to 2 years now that the Coloplast one he has been using successfully.

There will be some trial and error involved probably to find the one that her skin favors so don't let that get either of you too excited. If you get a bunch of samples just keep a log of what one was used and the results of same to help you remember.

Also in the beginning there might be need to use additional products....ie: paste, inner seals (Eakin or Adapt rings) until the stoma reaches its personal size. In my husbands case he lost so much weight he had a crease at 3 and 9 o'clock and needed paste to fill in the crease. As he gained back weight the crease disappeared and no longer needed to fill it in.

Presently he just sprays on Smith and Nephew skin barrier prep then applies the wafer after it dries.....(5-10 secs with blow dryer on cool).

Good Luck...this forum will be a lifeline to help sort through things after the hospital and WOCN assistance and you are on your own.
Posted 4/17/2013 1:54 PM (GMT 0)
Thanks all. I appreciate all of your help. We have been so terribly unlucky (I suppose everyone on this forum feels this way) that I'm terrified of making an irreversible decision (not really other options but still "elective") only to have some serious skin issues which can't be managed. I'm hoping it's trial and error like it has been for all of you.
Posted 4/17/2013 6:31 PM (GMT 0)
Kill- why not opt for a 3 step, and in the (unlikely) event that skin issues crop up that don't have any fix (even more unlikely), one has the option of proceeding on to a jpouch in 2 more surgeries. I dnt know in the end if they will find me clearcut enough Uc to offer me two more after step 1- and right now I much prefer the sounds of a perm ileo- but I like to kmow that the option might be there for me if necessary. But I gather maybe a jpouch is not considered an option for children in your neck of the woods, by what you mentioned earlier.
Posted 4/17/2013 8:22 PM (GMT 0)
Yeah, they're very conservative about reversing in Canada - won't until she's much older and asks for it. I know they do it with very young children in the US but I know it's not best practice. A friend of mine's son had surgery at 3 but his surgeon died. They want to do the second and third steps at Boston Children's (one of the top for IBD treatment and surgery) and they won't depsite the fact that he has terrible rectal flares until he's five. My daughter's not that young but they want them to grow and get through puberty without meds if possible. Which I prefer (of course assuming it's not CD, in which case we'd be stuck with it anyway which would be terrible if the skin issue wouldn't clear). trying not to dwell on the most negative outcome but have to think it through very very carefully.
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