Struggling with a Flange Allergy and Feeling Isolated

I haven't been on this site for a while. I actually considered this to be my last post. I don't like to be Debbie Downer. I have had some serious issues this last month. I developed a severe painful rash under my flange. Doctors were giving me cream to use but of course I can't because my flange won't stick. The doctor said it is a skin infection. Finally, my wound care nurse came to see me and turns out it's not an infection but an allergic reaction to the glue in the flange. Why now? So now I have to switch to a new product from a new company. For people with sensitive skin. It's very expensive. It is not sold in Ontario but has to come from Montreal. So as you see, things for me are not improving. I feel alone. Pammer

 

 

 

Hi Pammer, I don't know if I can be delicate here, but this is me trying my best. I know you have been having a hard time with this. If I remember correctly, it hasn't been a year yet since your surgery. I still hate mine - don't think I will ever like it; but I have come to a sort-of terms with it. It will be a year in about 2 days since my surgery. I have replied to most of your posts and wrote that if you want someone to talk with just ask Anoniem18 (Ed) - he has my Skype and FB (although I don't really like FB) and, I think, my e-mail. But I have never heard from you. You come on here and write these topics and then disappear for a very long time. So it's kinda hard to try to help someone or be their friend if it seems they really just need to vent.

A lot of people have replied to your posts. A lot of people care. They wouldn't answer if they didn't. There are quite a few people from Canada here that can probably help you figure out how to get what you need. And really, (stepping on eggshells here) things are improving because now you know what the leaking and skin problems are. There are different products out there too. They gave me a get-up when I first got out of the hospital that I had to use that sticky, gross, messy glue and cut the flange... bleh! I have since switched to a pre-cut, no glue, just stick it on and pop the bag on that (well actually I pop the bag on first then stick it on) - but it's much easier. It's still not perfect but I'm happier with it. I don't know how it is with sensitive skin.

Whether you want to be my bosom buddy or not isn't the point here. I know there are people willing and ready to be here for you. I, for one, don't mind listening to you complain. This isn't a fun thing any of us have to go through, deal with, or wake up to on a daily basis. You don't have to be alone mentally with a site like this. Physically, not much I can do since I'm not independently wealthy so I can't fly up to see you every weekend. :) You really are not alone.

I started my 5 year journey with this permanent ostomy gaining support from the local chapter of the UOAA. Nothing beats a support group to realize you are NOT alone and many people have had similar problems. I don't know where Midland is, and you may have already tried it, but just in case:
http://wp.ostomycanada.ca/support/canadian-chapters/

Best wishes that your journey eases with time. Mine certainly did. Pinky :)

That was a great reply Zywie. I hope Pammer appreciates it.

Pammer,

I have had that problem in the past.  My ostomy nurse said it might be a reaction to the dye in the flange or picture frame around the flange.  I kept using the same product except in white instead of flesh colored.  Cleared right up.  I use convatec products and now I alternate every time I change my pouch, I'll use the stomahesive wafer without the picture frame one time, the other flange with the picture frame the next so I'm constantly changing what is against my skin.  Seems to work for me since I haven't had any other problems.  Hope you get a solution that works for you.  Barry

 

Words of Encouragement from Ostomy Advocates I Hollister

Hi Pammer. I have had a very similar issue with adhesives and tapes. My cancer surgery was over 20 years ago, so my colostomy experience has been extensive. I started on Convatec products but during the early couple of weeks, I ended up going to Emerg to deal with what I thought was some sort of infection: it was an allergic reaction (I cut off all of the tape and spent a week with just the flange and pouch). I too discovered that the colored flanges were an issue for me.

I began taking over-the-counter Benadryl (25 to 50 mg) tablets frequently because they help me manage the problem. In point of fact, if I feel the slightest "twinge", I pop one right away and if it's time to change my appliance, I take one about an hour beforehand. There are generic versions which are much less expensive. I have a foil wrap in both of our cars.

With a number of years under my belt, I noticed another reaction which I thought was another allergic reaction but the Benadryl didn't slow this one down at all! I managed to get an "ET" (Enterostomal Therapist) to our house and as she sat down across from me, she diagnosed the problem. I had a yeast infection under my flange: it was a raging mess to which nothing would stick! She gave me some Arglaes Powder which worked very quickly (and the flange sticks well to it). I keep a bottle close at hand where I change my appliance so that whenever I notice something suspicious, I apply a small amount.

I don't know where you are in Ontario but I'm just east of the GTA. Theresa Henderson started a company called Partners in Community Nursing (http://www.picn.ca/). She has 120 RNs/RPNs on her team. You'll note on their site that they offer an array of services including Enterostomal Therapy and Wound Care Consulting. You can connect directly or go through CCEA's Home Care Program.

After a number of years using Convatec products, I changed to Hollister and things have been going quite well. If you connect through their website, you can directly communicate with an ET working directly for them. For example, I was having some issues with my appliance and went onto the Hollister site and within a couple of days, I was contacted by their ET in Calgary! In any event, she sent me boxes of samples to test out a new approach to what I'd been wearing for years!

Also, for years I have dealt with Shopper's Home Health for my ostomy supplies. I'm not sure where you've been purchasing yours but it shouldn't matter where they are sourced if the local provider is knowledgeable. I've found that by joining a local Ostomy Association, the newsletters are very helpful and full of ads with various suppliers.

Bottom line, Pammer, I'm not sure why you have an ostomy but, in my case, it's meant that each morning for 20+ years, I'm reminded that my ostomy means I've won another day!

There's no need to feel alone, you have each one of us.

Thanks, Snookies Mum - wasn't really trying to get pats on the back from anyone, just trying to get through to Pammer; but I appreciate the reply. Not even sure she'll be back to read any of this, but it's worth a try.

See, Pammer - what did I say? People are ready and willing!

Great response, Zywie, to Pammer's post. Hi all... I'm Marsha, and I took a long break, but just renewed my membership...

For Pammer... I have had my ostomy for 50+ years. I was 15 at the time, and after 4 years of coping with ulcerative colitis, my ileostomy was my "gift" of a life returned to me... And believe me, back in the "old days", it wasn't easy... It was clunky rubber reusable discs, and rubber pouches that had to be washed out and reused. Disposable meant disposable... plastic & cardboard with some tape, and that didn't work for more than an hour. I was "dragged off" kicking and screaming to an ostomy meeting in NYC, and there I met other teens & young adults with ileostomies. We bonded together, became friends, and started a Young Adult group. I learned that by helping others cope, I was also helping myself. I'm not going to get self-righteous and preachy... as I've had some difficult times too. I found out that what looked like a "pimple" next to my stoma was really an "ulcer". It hurt like hell, and the doctor wanted me to see a surgeon. But I refused... One day, I emptied my pouch in a friend's white bathroom... and it was a pouch full of blood. I quickly removed my pouch, and red blood spouted all over her white bathroom... walls, floor, towels... That was an emergency trip to the hospital where the doctor diagnosed it as "Pyoderma Gangrenosum," which is really ulcerative colitis on the skin. Yes, the large intestine may be gone, but the autoimmune condition is systemic and can pop out anywhere. I've had several other lesions, which came from irritations... and I knew they weren't infections because they just got deeper and deeper. Sigh...

Twice it happened under my flange, and although it wasn't easy, I found products (creams) to heal the lesion, and then covered it with a bandage, and then tape, and then put the flange on top of that. I had to change daily at times... which was a "pain", but then some people without ostomies get hit with diarrhea and poop in their pants. Life is "relative". As far as dating... I was 15 and finally healthy, so I wasn't going to let a little thing like an ostomy bag get in the way. We weren't as active sexually back then... but my philosophy then, at a very young age, was that if my partner had an issue... with me or my ostomy, then he wasn't for me. I had more rejection for my weight than for my ostomy. And now, I'm divorced 20 years, and am back to dating. For some men, the ostomy is an issue, and yes, I've had guys walk out in "disgust". Not fun... but I try to remain pragmatic. We gals have to kiss a lot of frogs before we might meet that "prince". And then, when you meet a guy for whom your ostomy or your weight, or your height (or lack thereof) is not a problem... you can smile and see the good in the world. It takes optimism and the belief that there are still good times ahead... and then go for it. The US Constitution says it all... we are guaranteed the "pursuit" of happiness, not happiness itself...

On Tues, I will be off to Australia (Brisbane) to visit my son and his family. I answered a member's request... Janet from Papua New Guinea, and I'm bringing a suitcase full of supplies for people who have none. That to me is a horror. I just had to pitch in and do something... Someone at the ostomy association on the Gold Coast will get the supplies to PNG...

Hope you come back, Pammer... lots of good people here...

Best of luck to you, and best regards to old friends and to new ones I haven't met as yet.

Just thought I'd let you know that the reason Pam hasn't been back is that she is at a cottage. Luckily, her stoma nurse came through with some emergency supplies for her trip, since her order was returned by accident. Like some of us, she is at times lost. But I know she appreciates the support.

We just won't leave her alone whether she is done or not.

Ed