Vasculitis UK
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I have M.P.. I also have had a colostomy for 25 years

I have M.P.. I also have had a colostomy for 25 years. Since starting treatment 5 years ago, I have had skin "problems" caused by the repeated removal of the base plate, Manuka honey has worked ,but only in the short term. Has anybody with these conditions had this problem & if so do you have a different remedy?

Tony

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hi tony, I don't have any answers, but didn't want you to feel as if no-one is reading posts - we're all n at different times. can I ask what MP is?

regards,

sandra.

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Hi Sandra

Thanks for the reply. I must admit one just wonders what life would be without.Vasculitis UK

M.P. is Microscopic polyangiitis

Regards Tony

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Hi Tony I too have mp and a colostomy althoufh my surgery was only in 2009 I suffered terible skin problems . dreadful soreness I tried all kinds of things. I suppose you tried cavalon ? altrhough it only worked for a short time with me I them moved onto skin wipes and have found these amazing LBF barrier wipes.They may work for you. they have for me. My skin is so tender as I am on High dose of Steroids which as you know make yor skin very thin and sore do try them and let me know.

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Hi Patsy thanks for the reply, I have tried wipes , barrier creams & moisturises, but I haven`t tried Cavalon, I`ll let you know how I get on. I remember when I was on high doses of steroids & this all started, I wont` go into detail,but this is when I tried Manuka "as a filler" it healed very quickly but no good for long term use

Now I have a larger area which can be very sore. I can use a two piece but after 2 or 3 weeks my skin starts to reject them & they won`t stay on, back to the one piece, different kind of sticky, "what fun"

Ah well back to the kitchen. I`ll make some pasta, nothing to do with the problem, but I`m just getting into Italian cooking, & my wife seems to like it

Thanks for your help

Tony

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H Tony have you tried the Welland flushable bags I have been on them now for 2 weeks I dont know how I survied without them.!!!!!!!!!! I dont know if its because the are flushable but the adesive does not cause me any problems, Hope this helps. Nice to hear of a guy in thekitchen.

Regards Patsy

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Hi Patsy,

over the years I have found the coloplast adhesive the only one I could relie on, but I`ll get some samples of the Welland, & give them a try.

Thanks very much

Tony

P.S. have you ever tried chicken kiev cooked in cling film, heaven

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Sounds like a must to me!!!!!!

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Dear Tony,

I'm also confused as to quite what MP is.....Now I KNOW that were all stupid but....... Can you enlighten me (us) please. By the way have you tried mosturisers, some available through your GP only. Have a friend, who has had a stroke, and is perscribed them. Sorry not to be much more help!

Best wishes anyway

AndrewT

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Hi Andrew thanks for your reply

I don`t think I`ve met anybody that was stupid, only people out of their comfort zone & thats where I often find myself, anyway the answer to the question is, Microscopic Polyangiitis, just another branch in the Vasculitis tree.

Thanks for your sugestion

Tony

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Hi Tony,

I used to work in Stoma care for a manufacturer, and you shouldnt accept sore skin. Go back to your GP and ask to see a specific stoma care nurse (most hospitals have at least one, and they are there for your exact problem) they will be able to help you. Also, call up charter Healthcare and get some of their advice books - they will help, the info is also online look here: coloplast.co.uk/ostomycare/ the information is factual and wil help - but you must not accept sore skin as normal.

I hope this helps.

Jane

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Hi Jane, thanks for the reply, I do have a very good stoma care center, the problem would seem to be that the vasculitis has affected my skin, the skin creams, & wipes that used to work before vasculitis, don`t seem to pass muster any more.

A cup of very salty water held over the area does work, but I`m hoping to find something a little less "--" if you follow what I mean.

I think I`ve tried most things, but I`m sure the urika moment will come.

thanks for caring

Tony

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