Hello lovely people, a quick question please - I'm borderline Limited Scleroderma. Diagnosed in 2016, no heart or lung issues, slight Raynaud's (comes & goes), tho I've had dreadful gastro issues since June 2016 resulting in an emergency Ileostomy September this year 2021 in Oxford. I now have stoma and unfortunately dreadful skin issues both under the stoma pouch and across a large part of the skin on my abdomen. I've been diagnosed with (probable) Delayed Contact Dermatitis, waiting on a Patch Test, also in Oxford. One brand of stoma pouch has Manuka Honey in the adhesive, which (fingers crossed!) may be helping, time will tell. Steroids do help clear the dermatitis, I'm not prepared to spend my life on those! Topical hydrocortisone helps slightly, the itching and discomfort is sometimes unbearable. Does anyone else struggle with this skin condition please? Any info gratefully received. Thank you.
Limited Scleroderma, Skin Problems - ... - Scleroderma & Ray...
Scleroderma & Raynaud's UK (SRUK)
Heard lot of good reports on silver spray and creams worth a try
I use Aveeno Dermex Body/Face wash. I get it across my face and legs from time to time.
hi angel ok for skin problems aquapor cream, coconut oil is great. ask about celebrex and i use wild lettuce extract for pain ebay or mt rose herbs. ask about pt also and a social worker to go to bat for you and a pain doctor do not take any crap make noise. demans answers . love julie
Thank you for your reply, apologies for delay getting back to you. My issues are probably autoimmune related to a very rare cancer I had several years ago. I'll look into the preparations you mention, thank you. There will be an answer somewhere, it's finding it that is the challenge. Thank you Julie.
Hi,Just read your post and can only answer re the ileostomy side I’m afraid. I’ve had mine as a result of emergency surgery, scleroderma related, from 2010. I did suffer the same problem under the ouch for quite some time until I found a suitable bag (I tried lots). I have used the one with the Manuka honey although didn’t stay with it.
Are you thinking it’s the same issue under the pouch as it is across your abdomen, or is it due to leakage from the pouch and skin reaction to that? If it’s the latter, that is what I had the problem with until I eventually found the appropriate system to use. My stomach was disappearing too at first which didn’t help matters! I now use the Sensura Mío Convex bag with the Dansac Tre seal and have no need for any barrier cream or barrier wipe as the seal is impregnated. It’s the best I’ve ever used. I use Bullen Healthcare as you can access their stoma nurses and they will come out to see you and advise re the best system for you. Alternatively you should have a stoma nurse you can access via your hospital?
I hope your problem is resolved quickly as I know what I went through with the skin under my bag for months and it’s unbearable x
Thank you Kimmo, very interesting reply. At the moment I'm trying Welland convex pouch with Manuka Honey, which is certainly helping with the irritation under the pouch, so far. It is not helping with the irritation across my abdomen, the hydrocortisone is helping so long as I apply twice a day.
I spoke with Dansac about their TRE in the adhesive, I wanted to know what it is so I can research it, I drew a blank on that enquiry, I need to know. I want to trial the Dansac convex after the Welland Manuka Honey, very interesting that you are using this pouch. I can't use any barrier wipes or creams, it was a Vit E barrier wipe that caused the irritation under the Salts Confidence pouch, I only used it once, never again.
It is not leakage from my pouch causing the problem, I had minimal leakage with the Salts, I have virtually none with the Convex pouch. It is something in the adhesive causing the irritation both under the pouch and across my abdomen. I also have an allergic reaction inside my elbows when I give blood, the same reaction I'm getting with the pouch. My elbows are currently coming out in sympathy with my abdomen, limited & hopefully it will stay that way. I had a very rare cancer several years ago which is being seen as the cause for this allergic reaction, autoimmune problems, no one really knows.
My stoma nurse is excellent, and my GP is helping all they can, sometimes there are no easy answers. I'm so pleased you found a resolution, it takes time, and thank you for your response, very useful. I'm seeing a Homeopath in January, hopefully they may identify a Remedy that can balance my physiology to cope with these issues. Homeopathy can be very powerful, magical even. I've benefited hugely from it over the last 40yrs, my horse and dogs have had successful Remedies too.
Thank you again for responding, I wish you well and good luck with your stoma. Best wishes.
PS - how strange your stomach was disappearing! Mine is the opposite, it's never been so huge! I hate this high carb diet, I've been keto, low carb for many years, carbs not my thing. Take care.
Have you seen a Dermatologist besides your Rheumatologist. Sometimes Dermatologists have a bunch of samples of various ointments and creams to try.
I saw a Dermo several years ago for a basal cell carcinoma and I discussed my Sclero after I had my MOHS surgery. She gave me a prescription for a cream, but since I moved I no longer see her and don't have it anymore. Sadly I can't think of the name. But the manuka and other suggestions are certainly worth a try.
Now I use plain old Vaseline for most everything. It's a great moisturizer and sealant against irritants penetrating the skin. Not good if you'll be going out in the sun on exposed areas though : )
Hello Sophiebun11, apologies for my slow reply, I don't log into this forum very often. yes I've seen a Dermatologist, they diagnosed Delayed Contact Dermatitis, which covers a multitude of issues, it is probably autoimune problems caused by a very rare cancer I had several years ago. Vaseline made things hugely worse, I am very sensitive to many things. I used to be able to do regular Fasting, this allows the body to heal itself if its possible. Sadly with Ileostomy I can no longer do this. Thank you for your reply.
The 'normal' adhesive probably has rosin in it, this is a pine resin derivative that is very common in glues. Google rosin dermatitis . 'Elastoplast allergy' is the most common example of this type of contact dermatitis - the traditional fabric elastoplast has it in the adhesive. The condition is actually quite common but many people do not realise it is the adhesive ingredients that are the problem.
I have known since childhood I am affected by it because my Mum told me, so I always managed to avoid it. Then one day I had an injury dressed in the local Minor Treatment Unit and the nurse did such a super smart job of putting a pica dressing (of elastoplast) on my thumb I completely forgot to tell him about the dermatitis. So I thought I would let it run and see what happened. I was fine for about 36 hours then in the space of a few minutes my skin under my thumb became so itchy I could have screamed, I just had to tear the dressing off and my skin was covered in weals.
Ever since then I've been very conscious of it and several times had dressings applied for infected calcinosis that have also caused the problem, when I have explained, they have given me different ones that are OK. I also realised that for years when I got itchy around my vagina on my period it was probably a bit of adhesive from the sanitary towels, I found a sensitive skin one in Wilko's and I was fine. I also experienced it when wearing the sticky pads for a 24 hour heart monitor.
I am afraid I cannot offer a solution, other than finding a product with a different adhesive, I would have thought that in the long term it would become worse if your immune system is constantly trying to fight it, even if you are trying to overcome it with a medicated cream. You need to find a non-rosin adhesive, hopefully the manuka honey may be OK.
Thank you for your reply cowhide. Sadly there is no easy explanation, I can use elastoplasts, band aids and the like without any problems so long as the skin is not punctured or an incision. The adhesive due to stoma pouches is another problem. Yes it could easily be rosin. I'm due a patch test in Oxford organised by my Dermatologist, I will ask for rosin to be included. Thank you for taking the time to reply.