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Skin Condition Related to UC

manon full

I am on the far left resting my chin on my husband’s shoulder.

Diagnosed with UC in 2010 and Autoimmune Hepatitis in fall of 2010. I am awaiting a possible diagnose of Autoimmune Bullous Dermatoses. I have about 2 BM per day except when I am about to have my “monthly” which can make me GO sometimes up to 5 times a day. Other then that I consider myself lucky as UC is pretty much under control

Some more about me:

I am a professional Dressmaker and West Coast Swing dance teacher. I enjoy going out on the town and dance on a regular basis. My husband is in Classic car Restoration (he refurbishes old cars) we love going to hot rod or drag race events in our RV.

Skin Condition Related to UC

Lately, well for about 1 year now my I have been having some weird reaction (side effect?) with my skin. Right now it is on my lower legs and forearms. Each time I happen to bump, knock or any other form of physical trauma I have those blister forming, that is if my skin don’t rip off (sort of peel off) literally. I have seen a Dermatologist who was baffled by my condition so she sent me to another Dermatologist and I ended up with a team of 9 interns hoovering over me. Apparently I should feel special… I’d rather not. They think I might have developed what they call Autoimmune Bullous Dermatoses. I am awaiting the definite diagnosis from the 2 biopsy they took on August 21. I see them September 28th for the results.
In the meantime I believe I have read on the UC website that someone who had a similar condition, if so would it be possible for you to refer me the name of your specialist(S). As well as the details of your condition and how it was treated.
What I am reading online would mean more DRUGS and I am currently trying to get off mine. The tricky part in my condition is the Hepatitis Auto-Immune I suffer from (also referred to as Autoimmune Cholengitis, though I don’t have the exact symptoms of this disease…)
To make all my medical condition more “entertaining”: My liver specialist (Hepatologist) just passed away, may he rest in peace, he was an incredibly good person and doctor. Plus my GI is on maternity leave, and here in Quebec they can take 18 months leave of absence after having a baby. So I have been pretty much put on a desk of not one but 2 replacement specialist whom have already their plate full therefore I wont be seen in the fall for my regular appointments.

Thanks in any information you might give me:)

Medications:

Salofalk for UC
Ursodiol for Hep Auto Immune
Vitamin D
Calcium

written by Manon

submitted in the colitis venting area




11 Responses to Skin Condition Related to UC

  1. Gail September 18, 2013 at 8:16 am #

    Hi Manon,
    Sorry to hear what you are going through right now. I’m not sure how many others have had skin problems but that’s what I had, which started about 4 years ago. I have not had uc but my husband had it back in the 90’s (which I am quite sure came about from overuse of antibiotics due to a recurring infection). He had to have his colon removed. My 34 yr old son has it and has been on Remicade for a little over a year. That’s why I came to this website but I believe that all auto-immune diseases are related (stemming from inflammation). I have always had very dry skin and as a child used to get canker sores a lot. Recently, though, I had what I thought was dyshidrotic eczema but then it morphed into what appeared to be psoriasis on my palms. Some “rashy” areas were in a circle, like ringworm, which is a fungus. I never got what I felt was a proper diagnosis because the only thing the doctors know is to prescribe steroid cream. My hands were the worst – I couldn’t do anything without gloves, including preparing food and showering! It was painful, red, itchy and sometimes burning. I thought I had to take it into my own hands (no pun intended) to get to the root of the problem. I went to a homeopathic doctor. What she gave me helped but it was ultimately cutting out the sugars, gluten and dairy that made the difference. I also initially cut out coffee and red wine – anything to starve that yeast! I now have 1 coffee most mornings (with real maple syrup not sugar) and I drink our own wine (bottle your own but at a store, where I have asked that no additional preservatives be added). As a result of educating myself about food, I feel we are better off without eating gluten and dairy products. Cow’s milk is only good for baby cows! I recently had a food intolerance test done and found I am very intolerant of dairy (whey, in particular). The gluten didn’t show up as a problem but I have not been exposed to it for quite a while so wouldn’t get an accurate result.

    We are fortunate in Canada (I’m in Ontario) to have equal access to “free” health care but I’m not sure if we are getting the best care. Our regular doctors are only trained by the book and don’t seem to look at the body as a whole. Our system is fine for acute care but not so much for chronic care.

    It took me months for my skin to totally clear up. By the way, now I use only pure coconut oil as a moisturizer. I also use only organic coconut oil for cooking.

    Good luck to you. I’d be happy to email you directly, if you’d like. I have more I could mention but have a hard time keeping it short!

    Gail

  2. Natalie September 18, 2013 at 2:14 pm #

    Hi Gail & MJH
    It seems that ever since I was diagnosed with UC (October of 2011), I keep getting an itchy rash on the palm of my right hand. I have used several different creams (especially for psoriasis) and nothing seems to help. My PMD prescribed a special cortisone cream and it seems to clear it up for a while, but then I get it all over again. I used to also get ulcers on the roof of my mouth, but haven’t had those in months. I think the ulcers in the mouth and the itchy palm are definitely related to my ulcerative colitis. I would assume that skin conditions are caused by some sort of autoimmune diseases. Good luck to both of you! :)

  3. Juliet
    Juliet September 19, 2013 at 6:40 am #

    Hello MJH, Gail & Natalie!!

    Firstly, I’m in agreement with Gail regarding systemic inflammation. Also yeast overgrowth (candida) is a big problem for many people. It seems, one thing the majority of diseases have in common is inflammation. And yes, doctors and specialists do everything by their texts books, only looking at the one area of the body that is presenting with symptoms.

    This is one reason why I’m off to see a naturopath doctor next week. I most certainly believe all of my health issues are related. From the minor acne and exzema, to the endometriosis and ulcerative colitis. And Gail I sympathize with you every month my UC symptoms seem worse, even if I’ve been in remission.

    MJH, I would certainly hope you receive the necessary care whilst seeing replacement Doctors. It may be a good idea for you to look at diet and products you use on your skin. I can’t even begin to imagine how distressing and painful the skin condition is, but certainly I believe they’re related. I wish you luck xxx

    • Gail September 19, 2013 at 8:09 pm #

      Hi Juliet,
      Please keep us posted after you have seen the naturopath. I, for one, will be very interested to hear what he/she suggests to you.

      If you have a minute, check out Dr. Myhill’s website. I mentioned this on Mira’s post. Along with lots of other info, she writes about yeast problems and candida, also dysbiosis – diet for yeast overgrowth. Her website is drmyhill.co.uk. Perhaps you read about her before in the U.K. but I had never seen her website until a few days ago. There’s some really interesting information on her website.

  4. MJH
    MJH September 24, 2013 at 12:44 pm #

    Hello ladies,
    I appreciate all your comment. I have started the diet only 2 weeks ago. Also found a support group for UC and EB (Epidermolysis Bullosa) both in Montreal area. There is actually a conference coming up for UC in November. I WILL BE THERE> https://www.facebook.com/events/613833068669695/?ref=3&ref_newsfeed_story_type=regular
    What I found out on EB is that it is a collagen Type VII absorption problem. Therefore surely associated to UC. I found a 74 page Acrobat Reader document mentioning the involvement of UC. thing is the document is in french as it comes from France… where there is a whole lot of EB cases in new born and young children (sensitive heart, refrain from looking up the pics, it made me cry my heart out for nearly two days as I was doing my research!) Anyhow if you would like to have the document I can email it to you. My book smart Dermatologists with enlarge their knowledge this Thursday ;)
    EB has many forms, this will interest you NATHALIE AND GAIL. One of the form EB can take is cloques
    On the upside I have received a letter informing me of an appointment with my new Hepathologist whom is the Dr who did my liver biopsy in 2010. Am glad! no news of a new GI yet. While am there Thu. Ill stop by the GI floor and see whats going on!
    Juliet keep me posted as well on your Naturopath I am too interested!

    • MJH
      MJH September 24, 2013 at 12:47 pm #

      sorry, click the wrong button, :P
      EB has many forms, this will interest you NATHALIE AND GAIL. One of the form auto-immune EB can take is rash sort of blister on the hands and feet, as well as canker sore in the mouth and nose. Canker sore in the mouth is also common with UC.
      Question!? do we all gain a PhD or some sort of Dr. certificate for educating the “doctors”?! :P

  5. MJH
    MJH September 24, 2013 at 1:03 pm #

    Darn I forgot, for my skin my sister in law recommended I use pure Vitamin E oil and a friend told me to use Emu oil(hard to find as most mix it with fragrance). Which I have been doing for the past 4 weeks. My skin is glowing, No more itchiness and appears to be a bit less fragile. I apply Vit E in the AM and Emu before going to bed , pure Emu oil has the same consistency as french fries grease and kinda smells like it too, my dogs keep on wanting to lick me! o_O
    Adam will we get to see you at the UC conference in Mtl in November?!

    • Adam
      Adam September 27, 2013 at 4:24 am #

      Hey Manon,
      I want to smell like frites…and I want to be licked by a dog all day:)

      For sure happy to hear you’ve got some things squared away as for the diagnosis. I’m sorry there’s yet another thing on your list now. But sounds like the vitamin e and emu is helping you alot, so that’s great.

      As for Montreal…OMG, um….no unfortunately. I think 10 days up there back in July was all I could handle, anymore and I’d either be caught in a jail, divorced, and most definitely broke.
      But i’ll for sure be going back there sometime and will for sure let you know.

      Take care Manon,
      -Adam

  6. MJH
    MJH September 26, 2013 at 8:09 pm #

    Diagnostic confirmed: Epidermolysis bullosa acquisita (EBA) is another rare type of epidermolysis bullosa, which isn’t inherited. Blistering associated with this condition occurs as the result of the immune system mistakenly attacking healthy tissue. It’s similar to a condition called bullous pemphigoid, which also is related to an immune system disorder. EBA has been associated with Crohn’s disease, an inflammatory bowel disease. yay me! NOT

    • rjw September 29, 2013 at 10:39 am #

      MJH,
      Little confused here. Were you diagnosed with EBA? How did they diagnose you… by a blood test? Also is the adobe file you mentioned is it only in french? Thanks

  7. Loretta Keelin July 30, 2017 at 1:00 am #

    My now adult son(30 years old) was diagnosed with the inherited disease-Epidermolysis Bullosa Simplex (no one else in the family has it) and just was recently diagnosed with a severe case of ulcerative colitis. I was not at the hospital the day he had the colonoscopy and endoscopy but apparently when he to the nurse about his skin disorder, she told him the EB was an auto-immune disorder and questioned whether or not he even had it. This website is the first time I have heard of EB aquista. I am familiar with EB-my son was diagnosed at 4 months of age. The genetically determined EB my son has, is evident in infancy and can vary in severity ( fortunity my son’s is one of the least severe). The genetically determined EB that children are born with can be as mild as a few blisters to severe internal blistering, webbing of the hands/feet as well as other issues that may lead to death.

    But I was hoping someone would be able to tell me how their EB had impacted their UC or vice versa. I was pleased to find this website, but it took me a minute to realize you could acquire EB as an adult. I had never seen this information before. I am so sorry to those of you who have acquired this skin disorder. We have spent 30 years learning how to adapt my son’s life around the blisters from his EB simplex. To diagnose him they did a biopsy on his leg when he was an infant as part of a research project. The people refer to children with EB as Butterfly kids because of the fragile nature of their skin. There is little information for EB adults but there is a group called DEBRA that is international that does research for EB and they put out newsletters and have resources for how to take car of the wounds. It is called DEBRA for Dystrophic Epidermolysis Bullosa Research of America (DEBRA). When my son was younger that is how we found out about tape that stuck to itself instead of to his skin, because if I used tape that stuck to his skin, it tore his skin off. I learned that stitches do not work the same way on him because of the way of his connective tissue.

    All of this information about EBA is new to me and may help in dealing with my son’s EB and UC which while different from EBA in some ways the fragility of the skin is the same, Therefore the difficulties of his body’s response to the ulcers are exaggerated and the healing may be slower on one side of his body which is affected more than the other and the scaring may be worse and that is concerning. So any ideas or input about EB and UC would be really great.

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