Survey – Skin Problems Related to Ulcerative Colitis

Survey Results are Here,

(Real life, and maybe I should repeat, very real life pictures submitted from many brave UC’ers along with details of their skin conditions.)

Thank you to all the members of the ANG – active newsletter group, who participated in the Ulcerative Colitis Skin Survey.  There were over 500 participants who completed the survey, and many people who shared personal pictures of what the skin problems look like they are dealing with(or have dealt with in the past).

We’ll jump right into the survey detail below, but again, a very big thank you to all who participated.

Like previous ulcerative colitis surveys from the past, I have included details that were submitted along with pictures from participants at the bottom of this webpage, so please check those out too, as they will answer many questions you and future generations of UC’ers may have.

Issues with the skin on our bodies (which is our biggest immune system 24/7 is very difficult to cope with, especially with other “GI” related things more closely associated with UC, thanks for participating and reading other’s replies.

 

 

Question #2 Below:

ulcerative colitis skin conditions

Other answers that were manually typed in included:

Erythema nodosum, Chicken skin (KP), Also small bumps on the back of my arms, DARK purplish rings around my eyes and stys., vasculitis skin only, Fingernails and toe nails brittleness, break easy, almost invisible (very small) SUPER itchy bumps on the backs of my hands– unclear what it is, Pyoderma gangrenosum, Erythema Nodosum, Bruising that get hives, granuloma anulare, Cellulitis and basal cell carcinoma, Hives, Rosacea, skin very thin, blood buises very easily, Lichen Planus, Dermatitis, painful, inflamed, deep cysts on my face and neck., Hives and large patches of discolored skin all over body., Since diagnosis I have had extremely sensitive skin/very dry, various random but mild rashes. For past 5 months I have had severe, diffuse itching but no rash. Improves with steroids but then comes back., Inflammation of the skin around my left eye, continual rashes, revisiting shingles., on top of feet and shins, cysts or boils along a lymph node line and itchy scalp, Alopecia scabbing, Red bumps on my legs. Sometimes bleed when scratched, White scaly sores, itchy and when the white scale falls off they bleed some, Tineas versicolor, Fungal attack on the armpits, Oral Lichen planus, Chronic Idiopathic Urticaria, PMLE, Not sure if it’s psoriasis or Eczema, rash GP & consultant are dismissive, but I am certain a scaly, itchy rash on my lower back and isolated smaller rashes on my upper legs & hips is related to my UC, Palmar keratoderma, Linear IgA bullous dermatosis, Increase in Actinic Keratosis and Evolving Squamous cell carcinoma. From medicine that I take for UC. Imuran and Humara, Pseudomonas, Red bumps on buttocks only., Cystic acne, Ulcers on fingerprint area and along fingers, Sweets syndrome, Atopic dermatitis, Occasional bump on leg that took a while to heal, cracked, peeling, swelling lips that gets worse the week before Remicade, Actually they said it was Lupus, Squamous cell skin cancer, Tinea Versicolor, Dandruff, Don’t know formal Name. Red irraatant on legs only below the knee., Looks like contact dermatitis on my palms. Small patches of flakey, rough skin sprinkled on my thighs (about the size of a nail head), Possible hidradenitis suppurativa, given the presence of recurring boils in armpits / shoulders / inner thighs. Not open wounds though, hidradenitis suppurativa,

 

Question #4: 

If you have been able to heal or stop your skin condition, HOW did you do it?

Eczema I find Curel Daily healing helps, plus Vaseline helps the dryness
Psoriasis stopped when I started taking immuno suppresant
since taking remicade have had eczema type dry skin appear on inside of my feet.
Psoriasis exacerbated by treatment with remicade. Use bepanthan creams and antihistamines.

Psoriasis well-controlled when on steroids for UC flares

Have them burned off.
Lots of cream
Soaking cotton gloves and socks in apple cider vinegar and wearing them for a few hours/to bed
I control ulcerative colitis, eczema, cystic acne, and hidradenitis suppurativa through mostly Chinese herbs, homeopathic remedies, vitamins and antioxidants, and eating an anti-inflammatory diet and avoiding food triggers. I also take apriso all the time and take rowasa enemas during UC flares. Food triggers are usually what sets off a flare, and most of the time the skin issues come first before any blood or mucus in my stool. Taking the holistic route and working with a naturopathic doctor has been the best thing I’ve ever done and I have been able to get off Remicade and keep my flares to small mild ones.
Lots of body lotion to keep itchy skin mellow
cystic acne . medication from dermatologist, larged mass different areas on body.- severe dry peeling hands on knuckle side.
Itchy dry skin Cereve cream and cortisone based rx cremes
This is for the dermatitis, I have to use shampoos that treat the scalp and keep it moisturized, such as apple cider vinegar rinse, Tcell shampoo, Briogeo charcoal shampoo; and combo with folic acid and biotin. (I’m on Entyvio and methotrexate, the latter of which is often paired with folic acid).
Obtaining remission from ulcerative colitis has worked for me
Antibiotic steroid cream
Fist prednisone then on Stelara for eczema
Eczema and itchy skin- I don’t do anything specific . It just gradually clears up as a flare gets better. I do take prednisone when I flare.
Changing my diet. Cutting out things that I am sensitive to … any double carbohydrates
eczema: I’ve seen multiple skin doctors over time. None relate my rashes to UC but it’s reasonable to conclude that there’s a relationship.
All they have to offer me is a variety of cortisone-based topical ointments. They’re generally helpful to control itching, but they’re not a cure
Otezla
Eliminating gluten
Getting off of asacol helped with the acne.
It goes off with Prednisone
It goes away. When i go into remission.
Acne,I use the neutrogena acne mask and acne pen.
Itchy skin
For my scalp, I haven’t found anything that works.
For my dry and itchy skin, moisturize 24/7
Laser removal
Zyrtec pill daily basis keeps hives from forming.
Use of rubbing alcohol eases and promotes healing
Psoriasis. I try eliminating foods I have sensitivities to, and I also try to use natural topical treatments.
pityriasis rosea – lay in the sun and waited until my burnt my skin burnt red. The sores would pop and dry out
eczema on eyelids – from Remicade – finally subsided (months) after stopping medication

dry, itchy skin, rashes – more winter (seasonal) related. It eventually goes away

Wound that wouldn’t heal – time
Eczema- steroid cream
Hydrocortisone cream
I really didn’t do anything. It has just been in remission…just like my UC. However, there are times when the psoriasis acts up….not bad, but it will itch in the area but will not last long. I think I may have a reaction when I get stressed out about certain things.
Put steroid cream on and it went away, hasn’t came back.
Taking a high dose of antihistamines and E45 cream.
Contact dermatitis on my palms and small patches of flaky, dry skin on my thighs (about the size of a nail head) It has improved using a topical cream, but it’s been 3 months and it still hasn’t gone away. I also had larger dry flaky patches on my face at the corners of my mouth, eyebrows, around my nose and underneath my eyes, but these did clear up.
Pure Aloe Vera Gel
Mild psoriasis after starting Humira. Went away after a few injections. Diagnosed with vitiligo about the same time as UC diagnosis.
I still have acne breakouts now that I’m Med free. Full colon removal May 2017. I would love to hear what others do for acne.
Anti itch cream. I put it on at night so I can sleep.
My Psoriasis was as a result of taking the biologic, Remicade. As soon as I stopped taking it my Psoriasis slowly went away.
Antihistamine tablets
Getting the flare up under controll
mostly my neck and chest specially during summer and in the sun. I apply cortisone cream and it helps a lot
hyrdrocortisone cream
Acne – doxycycline
Small patches of eczema that heralds a flare up and clears as flare up eases.
Eczema – Dermol Steroid cream helps when it flares up.
I use Vanos creme. aka Fluocinonide
This is a good fix. However they always come back.
Dermatologist says it’s not serious and they know what it is. But when I bring up that UC is related to this, they are clueless.
Itchy skin used Sepia 30c which after 3 days cleared up
Stopping gluten and dairy and sugar helped immensely. After a few months on a clean diet, my skin improved so much. I used to get a huge itchy rash every winter, and I haven’t had it for years now.
I had pustular psoriasis after taking Remicade. Immediately after stopping the Remicade infusions, my skin returned to normal. It has been five years since the outbreak and I have not had any issues with psoriasis after stopping Remicade.
Switched to Dove soap and slather lubriderm all over my body after showering. I also use hydrocortisone ointment for the stubborn stuff.
Prescribed creams
I marched into my Docs office and told him that Humira gave me psoriasis on my feet and hands. At this point I was covered with sores on my feet; my hand had less sores but more patches of rough itchy skin.

I got in right away to see a dermatologist. She took some skin samples and told me that I had a lot of fungus growing on my feet and gave my steroid cream to apply once per week. The diagnosis of fungus makes sense as I am on Humira and mercaptopurine and so my body can’t fight off the fungus.

My fungus cleared up somewhat. When I went to Mexico my skin got much better being in the salt water I think. However, I do still have rough, itchy skins that sometimes breaks down into sores. I think underneath the fungus I have psoriasis.

Eczema: the use of topical steroids help for occasional patches that flare. Also, understanding what foods cause inflammation assists. Plus, use of moisturizer (cerave) to keep the dry skin at bay.
Use Dermarest shampoo and moisturizer
Angular cheilitis – topical antibiotic cream
Dry skin mostly over all parts of my head,face,chin & ears..Under control with a really fat cream, protopic 0.1% but always comes back after a week or two.
I only recently started with dry skin on my left elbow …I have never ever had anything like this. The Keto diet is what is helping me with everything!! Especially how my pouch behaves, which is great since I am only 18 months since final surgery.
Topical steroid cream
I guess a lot of sleep and not eating any gluten helps with Tinea Versicolor.
Spots on my legs
And edge of lips I’m creases
Medication.. remicade and imuran
Put Vaseline on mouth edges
Leg spots went away
Mohs
Dermatitis: I pretty sure it goes through a cycle. My hands dry out, then the skin peels away, cracks and is itchy and sore.
I live in California so I’m fortunate for the time being that there are topicals that can help, also some internal tinctures
I am doing this survey on behalf of my son who was on long term antibiotics for acne prior to UC. Gets huge spots on his back before a flare & also gets steroid acne. It can be very painful & angry looking.
Anal fistulas and acne on face and shoulders.
Originally, I took gluten out of my diet and it helped a little. My fistulas come and go.
Moisturising my face every night
constant moisturizing
Vaseline
Psoriasis – Steroid ointment
Foliculitis- Oral Antibiotic – Pan Oxyl wash alternating with Hibiclens wash
Dry Skin – Aveeno Lotion
Steroid creams from GP . Have about 5/6 different ones so far. It clears up then comes back . Take Piriton for the itchy skin .,
Nothing I’ve tried so far has helped.
Eczema on legs (very itchy):
Taking extra care of my skin, moisturising and ensuring I’m dry after a shower as especially bad legs if rushing in the gym and not drying properly. Staying very hydrated seems to help. 2 litre of water plus.other drinks.Eczema/psoriasis on face:
I tried lots of different moisturisers but found Nivea aftersun works best for me a and works out cheaper than expensive lotions. Also my skin seems so OK with continual use where it didn’t like normal moisturisers and I seemed to get acne.
It only cleared up when my UC went into remission with IV hydrocortisone
Hydro cortisone cream
Excessive water drinking. Topical eczema OTC creams. Allergy medication
I stopped the Entivio infusions that I was receiving. Fired all of my western medicine doctors and went to natural/homeopathic ways of treating my UC. I was on 8 different medicine regiments over a 1.5 yr period and the meds did nothing and I believe were killing me. European and Eastern medicine is the way to go. American Big Pharma is only out for profits and not concerned with cures. If you practice western medicine, STOP IMMEDIATELY! They are slowly killing you.
Acne by using aquamarina from lush
I had a major breakout coming off Prednisone. I use Rodan and Fields unblemished regimine. Little issues since.
Psoriasis and eczema – Started taking cod liver oil tablets, which worked quite well; then switched to one tablespoon a day of hemp oil, which totally cleared them up.

Acne – Put anti-bacterial hand sanitizer on my skin before bedtime and it stopped outbreaks. Getting enough sleep and limiting sugar consumption also key.

Dry Skin
I just take several cold showers a day (not all the body, generally only the legs)
Dry Skin – VERY, VERY dry skin mostly on my hands.
Rosacea – on my face and neckWhen I follow the Specific Carbohydrate Diet to the letter, both of these conditions improve significantly.
I use bio oil for my face and it seems to help with the dry skin.
just stopped by its self
Itchy skin. Tried different lotions
retin A
Eczema-steroid topical, cetaphil cream, sun
Acne-diet, sun, topical help
Moisturise
Roaccutane
Eczema, Dry Skin: Triamcinolone acetonide ointment 0.1%
Stop it temporarily using steroid cream
I developed eczema in 1990 on my hands and feet only. I was diagnosed with UC in 2015 after I quit smoking (at the age of 57), I was also diagnosed with breast cancer the same month. It was a tough 2 years. I tried many different meds, enemas, and suppositories for 1 year, (along with cancer treatments) and then started Remicade and have been in remission since. I will never know if smoking was the reason I wasn’t diagnosed earlier in life. Anyway after about 6 months of Remicade I developed eczema on my scalp and torso which I had never had in those areas. The Dermatologist gave me Fluocinonide ointment for it and it is now gone. For my scalp, I used a tar based shampoo and it worked very well.
Hand cream and a reduction in contact with dusts.
Psoriasis: exfoliating than applying organic ghee – temporary relief

Acne: explanation and avoiding dairy products

Solar urticaria
Take a daily antihistamine tablet and wear high factor sunscreen
What helped was a dessert essence coconut hand and body lotion.
I have been diagnosed with Proctitis Colitis, approx 17 yrs. I am lucky that it is managed well; I tend to get an episode if I am experiencing to much pressure/demands in life causing stress. cycle is I get run down, this affects my immune system and i get a flare up, pattern has been every 2/3yrs. flare can last from start to finish around 6 months.

leading up to, during and for months after a flare up I experience cystic acne on my face, around my chin, nose and more recently on my neck. I am under a specialist dermatologist and have been prescribed various treatments but usually until the episode of PC has passed i continue to have painful blind spots over my face. I tend to get a period in between when my skin improves, but always have some sort of breakout, although it is milder when i am well.

i have tried different forms of antibiotics , long term treatment with tablets and lotions; however the short term antibiotics are most effective for me but the Doctor will not prescribe frequently.

Medication
I used diluted wild oregano oil on my scalp and it made a big difference after a couple of applications
Excema use cortisone cream.
N/A
Itchy rash – improves with treatment of prescription topical ointment Fluocinonide 0.05% and occasionally with lavender essential oil
Pyro ganggreensum started shots of presidome every week for a month went away had 3 shots of humaria went away now it’s back again on my left leg
Pyro ganggreensum started shots of presidome every week for a month went away had 3 shots of humaria went away now it’s back again on my left leg
Acne-Currently being treated.I am filling out the survey on behalf of my 14 year old. He was diagnosed in August. He is only 4 days into the acne treatment.
Coconut Oil, destress, steroid cream, Humira
I suffered from dry, itchy skin related to extended Prednisone use. Once I was able to heal myself naturally, internally, I began to work on healing my skin naturally with oils. 27 days and my skin was back to it’s previous soft and supple skin.
With terribly itchy skin and small patches of eczema, the OTC skin cream, Eucerin has helped, so has hydrocortisone cream.
Sweets gradually resolves over time but prednisone is a short term fix.
No diagnosis. Just incidents of itchy skin plus my skin in general is very dry and sensitive
Itchy dry skin. Not healed yet
Stopped humara
Eczema and dry and ichy skin – prednisone temporarily helps, but otherwise i use lotion or aquaphor
Sensitive skin: avoiding chemicals in toiletries. No parabens etc. Eating organic food. Using non bio laundry cleaners.
Condition: Psoriasis
Treatment: Betamethasone ointment (topical steroid) and bathing with sodium hypochlorite
The opens wounds, I am not able to control. I am awaiting a Dr. appointment to follow up on this.
the Eczema, I use Eucerin lotion or ointment and that seems to help heal up or stop my issues
Diet
Dry scalp,itchy skin all over body except face,dry skin on back and face,
E45 dermatological cream for dry skin,
Nizoral shampoo for scalp,
Itchy skin comes and goes,
Eczema and lichen planus both went away when I went into remission. On a subsequent flare, the eczema returned but again retreated when the inflammation did.
Itchy skin,
Doctor prescribed Benadryl to be given with my Remicade infusion and it helped with itchy skin, probably 90 percent improvement .
Skin cancer, all 3 kinds. Lots of sunscreens. Several skin removal surgeries. Many areas burnt off.
I believe the itching is due to food sensitivities for most people – even those with UC. I would venture to say most with UC have many food sensitivities / leaky gut issues. My naturopathic physician has food sensitivity tests I have done every 6 months (as food sensitivities can change) and as long as I avoid my allergens, my UC stays pretty much under control and there is also no itching. If I eat something I know is on my list, I may get itchiness on my legs but it goes away once a short period of time goes by after I’ve eaten the food to which I’m sensitive.
I stopped prescribed drugs (as they didn’t help my UC anyway)
Applied topical hydrocortisone sparingly to affected skin area – maintain healthy diet based around the SCD – try to keep stress and bay :)
Eczema – over the counter creams work for me. Eczema as I get older is more mild.
lotrim ultra
Simponi eliminated all extra intestinal conditions. Been in remission for exactly 3 years now, after 30 years of dealing
I follow a very strict diet until the kin clears. Little to no grains. Lots of water.
Cut out oils as much as possible and began eating plant-based (no dairy, eggs, or meats) in July 2017. Has helped tremendously.
Itchy bumps. Betamethasone lotion mixed with a good moisturizer.
Prednisone and stopped taking sulfur based drug.
I have bumps that come on my face and scalp, doctors don’t know much they think it’s something not caused by colitis, will consult with them further.
Not applicable (because I have NOT had any skin conditions)
Skin rash on both palms of hands, left forearm, and on legs.
Ice massage and intermittent fasting.
Dermatitis herpetiformis – inadvertently consuming gluten often results in an outbreak. Stopping all gluten eventually results in halting further breakouts and healing takes around 2 months with use of calamine lotion to dry out blisters and then aloe Vera, msm and colloidal silver creams to heal and moisturise
Enbrel and humira
Cystic acne – started only when I got UC, had it for a few years, got worse with change of meds… acne.org treatment finally stopped it
I had puva therapy
Skin creams
Lavender oil & peppermint oil helped most. Layered with lanolin, Shea butter, coconut oil, etc. Still hasn’t gone completely away. A trip to the beach (aka sunshine, vit. D) almost cleared it up. Recently flairing, diaper rash cream helps me sleep some.
Steroid creams. I had eczema 32 years before ulcerative colitis.
topical steroids
Pyoderma gangrenosum- steroids and anti bacterial medications
My UC had to go in remission.
Watch my diet.
Dermatitis/ eczema. By trying not to scratch and hydrocortisone ointment at night
Change in diet and topical steroids
Prednisone helped short term. Sulfasalazine got rid of it and put it into remission. I am now off both prednisone and Sulfasalazine and the hives are gone.
Rash ointment 1% cortisone
NO
I use an old prescription of Halobetasol Propionate Ointment 0.05% on affected areas.
It mostly occurred on the backs of my hands and in the winter. I was flaring at the time so once the flare was under control, I washed hands less. Less irritation from soap and drying plus getting my immune system to settle down got rid of the rashes. That and tons of quality hand lotion
Pre Skin cancer. Using topical cream Fluorouracil.
I manage it with moisturizer, wear gloves, pumice stones. Skin thickens, dries, peels, skin underneath is red and raw, bleeds at times
My uc rash usually only kicks up in the winter. The doctor prescribed several creams that didn’t work but finally prescribed betamethasone Diproplonate augmented. If I apply it as soon as I get a spot or patch it clears up. I have to apply it right away because it is horribly itchy especially if I make the mistake of scratching it! It also spreads quickly if I don’t treat it. When I first got it which wasn’t until my fourth uc flair it spread like wildfire over both legs and my face while they were trying to find a cream that worked. I haven’t had anymore problems with my face which by the way I had to use a much milder cream on my face. Can’t remember what it was.
I tried using organic make ups, gluten free make ups, keeping my skin as clean as possible.
I had periodic success, but never lasing.
Eczema I put lotion on the area, but the cuts seem to take a long time to heal
Since developing UC I have also developed PMLE, which happens if I spend too much time in the sun without physical sunblock. I don’t get it if I am wearing enough sunblock, but it took a couple of years to figure out how much was enough.
Dry itchy skin – Lotion
Prednisone for the wounds along with seeing a dermotologist and using hydrofera blue wound dressing. The eczema is new and I’m still trying to heal. The last of 9 leg ulcers has just closed (over 5 years)
Coconut oil
Once I get out of flare, skin symptoms generally decrease. AIP diet seemed to decrease psoriasis symptoms in ear and on scalp as well.
Whenever I bump into anything, I bruise. This never happened before UC
Excess. Ceratopsian lotion helped
I had skin issues while on Remicade. I switched to Stelara. All clear right now.
Psoriasis. The best my psoriasis every responded was to cosentyx injections but it made my UC worse so had to stop taking it. Remicade helped some but not completely clear. Use topical steroids when psoriasis flare. Lots and lots of moisturizers, especially in the winter. I use cetaphil cream that was recommended by my dermatologist.
After years and years of every conceivable remedy out there I found relief with an ointment to be applied daily or more often if want – it is Fluocinonide Cream, USP.0.05% – almost 100% relief – have a few spots yet on ankle and elbows but that’s it.
I had Psoriasis on my scalp. I massage my scalp every week with egg yolk and olive oil. I stopped coloring my hair using products with Amonia. I did not Shaompoo my hair every day.I used medicated Shampoo but it dried my hair, so I stopped it.

I had Psoriasis before I was diagnosed with UC

Psoriasis went away after UC was under control with Entyvio.
Steroid mouth rinses
Specific lotions & soap. Diet helps but isn’t the only contributing factor apparently.
My skin itches randomly. Sometimes allergy meds help. Lately I have a rash on my wrist that doesn’t seem to go away. But I’ve only tried OTC creams
I experience a dry itchy rash on my ankles along with any UC flare. When in remission, the skin issue clears up. Skin lotions help ease the dryness and itchiness, but it only ever clears completely when my UC is under control
The condition has not been diagnosed by a doctor, but have heard that other UCers have had the same problems. The sacly spots respond to coconut oil, but the sore spots on the scalp have resolved.
Undergoing ayurvedic treatment and doing yoga for itchy skin .
Pyoderma Gangrenosum healed by a powerful steroid cream falsely diagnosed as an infection at first antibiotics did nothing to it for 4 weeks.. I currently take remicade and after my infusion I get these red eruptions that are hard lump like and take weeks to heal Drs told me it was folliculitis but I dont buy that..
not applicable
Eczema – I have gotten relief by taking prednisone for my UC, but the eczema comes back when I’m off prednisone.
Prednisone. Sometimes Epsom soaks help followed by serious repeated moisturizing. Feet legs arms heavy applications of moisturizer 7 – 10 times a day. Before bed I rub in as much as I can on my feet, then another thick layer, then heavy socks.
Vitamin D supplements
Bouts of what l believe is rosecea on face but notice it clears when l stop taking wheat grass tabs which contain vitimin b. I believe the pines wheat grass helps with us though so it is taken off and on. I also get what l think us ecezema on my legs, but it is easily cleared with over counter cortisone cream.
Pyoderma! And I used Flonase spray on it with the direction of my doctor. It took a long time to heal but it did.
Cutting out all sugar helps.
Had them a lot, on my thighs, under my breasts, some in my torso and a lot on my head. Mostly when I was in remission and not on meds. Now that I’m on meds I very rarely have these sore itchy spots
Getting off Humira really helped, using medicated skin cream on my hands at night
They precede a flare. Sort of a canary in the coal mine. When flare is over bumps are gone.
Rosacea (face) – Keeping skin clean with premium skin care products-organic is best. Drinking a ton of water!
Acne/boils

It went away on its own.

Honestly not 100% sure. I know a few things: when I’m on UC drugs I get it more. When I changed my diet while still on UC meds, it got way better. When I stopped UC meds and kept on my diet it went away. Now I have acne or rarely a single hive; idk why the hive. Sometimes when I’ve had gluten free bread too often I get a hive. The acne comes when I allow too much sweets (still compliant with the dietary guidelines I follow, but clearly a sweet treat not a necessary part of a nutrient dense diet).
Acne—treated with Spironolactone (only prescribed for women)
Psoriasis: steroid cream help to delete kris information, Excimer laser also helped decrease inflammation, neither making it go away. Wrapping my foot in cellophane in the evening to help keep it moisturize also helps temporarily. Otezla helps even more but is nauseating and too strong. Using a pumice stone helps to decrease excessive skin. There is also a soap MG217 that helps to relieve some information and itchiness when showering. It is also very soothing. Again, nothing has made it go away just trying to keep the itchiness away.
Use of medicines, but reacure
Retin A and manual exfoliation with body shop coconut scrub
Acne-10% Benzoyle peroxide wash.
Dry skin-Non-comedogenic moisturizer on face, Gold Bond moisturizer for diabetics on body
Pustules on scalp-Ketoconazole shampoo
Eczema (on fingers) – Advantan cream. Make sure to rub it in fully. Works like a charm.
Eczema on left foot – Anti itch cream and Advantan cream.The other skin conditions I just live with.
Getting my UC under control
Metronidazol seems to help a lot with clearing the skin provided you do not experience side effects like I do
Stopping prednisone
Psoriasis – used E45 cream as I did not want to go down the steroid cream route.
It ended up “eating the skin off my feet for 2 years” it basically ran its course and has not returned. Happened when I first got diagnosed in 2010. The photo depicts the beginnings of it. I have some salve on it that made it appear more red than it actually was. At it’s worst- both bottoms of me feet were affected and I had to wear plastic baggies with Vaseline on them just to walk. Second photo is just of my healed feet with some Henna Glam art I did.
I was using cosyntex for psoriasis. However my Dr thinks this is what also triggered my UC
Itchy skin in soft areas and acne.
It becomes worse with prolonged steroid intake.It heals once steroid is discontinued and with use of medicated oinments.
Aqueous cream
They stopped after the infection calmed down a bit. Never came back after I quit remicade.
Going grain and dairy free and also using Khiels skincare
Steroid cream
Pimples on scalp.When I ate 1/2 hour later small pimples came on scalp. Sometimes large welts. I,m partially in remission now so not so bad.
getting diagnosed and taking mesalamine.
Rosecea
Oddly, the skin on my forearms and around my ankles gets really itchy, especially in the middle of the night. I’ve found that putting on lots of lotion before bed helps tremendously.
Topical steroid
Using coconut oil externally and internally. Avoiding alcohol and foods that include yeast.
All my life I’ve had very dry skin. I was diagnosed with UC in 2010 and every inflammation comes paired with dry skin issues (dry, red and painful), in my case not medication, but UC related. Last year I went to Cambodia and Vietnam on the back end of an inflammation and after a couple of days my skin was smooth and radiant, I believe it was the humidity that worked wonders!

Interesting fact (to me at least :)): in Chinese medicine they believe the large intestine, lungs and skin are connected and when one isn’t functioning properly, one of the others could also have issues. Skin is one of the most commonly affected organ systems by IBD, caused either by the illness or treatment of illness. Also, pulmonary issues caused by IBD was first recognised about 45yrs ago, another interesting topic for a survey sometime?

Cortisone injections for hand eczema

Methotrexate for psoriasis

Psoriasis, I don’t eat red meat, tomatoes, eggplant and pepper. Less sweet and no junk food at all.
Eczema, dry itchy skin.
I fined it’s more so when I am not following SCD diet and have too much sugar.
Also my arms itch heaps if I have been in the sun to long.
I have a cortisone cream that I use to relieve the symptoms.
Also get a very itchy scalp.
Vitamins D B Iron
itchy
prednisone and pro and prebiotics with spirulina along with diet precautions
sometimes using topical creams such as aveeno helps
dry and itchy skin : moister, moister and moister and drink more (water :-)
moisturising cream
I have been using Wild Oregano Oil and it seems to be very helpful in keeping the boils and cysts in check.
Stopped taking the meds ( infliximab) which were causing my multiple skin problems
Psoriasis/Eczema I went to a dermatologist and she gave me some spray and gel to use. I did work.
Dry skin dandruff-like. Controlled by dietart changes
My condition happened twice. Both times was related to a post regimen of Prednisone, diagnosed as pyoderma gangrenosum. This happened after I stopped the two or three week dosing of Prednisone, my legs and feet swelled up. After the swelling subsided I got terrible painful welts on my feet and ankles, but not the soles. The welts started of as little bumps and then turned into welts about the size of a thumb print. Then they cratered into painful orifices that lasted probably close to two months. The doctor gave me a double medicine of antibiotics, but the name escapes me. Maybe Kelvan but that could be totally wrong. but it was two meds in one pill I remember. Topically the only thing he did was to have me put on Aquaphor healing gel underneath the non-stick gauze, as the sores were quite weepy. Then I would wrap my feet and ankles in saran wrap at night to keep the medicine on without getting absorbed from my socks. Other than keeping soap away from it, there wasn’t much else, but just to let them heal themselves. It hasn’t happened anymore as I have vowed to never take Prednisone again, as it apparently sped up my hereditary osteoporosis and I had a very bad accident which caused compression fractures in 5 vertebrae. Luckily I’m not crippled, but just became one of the people who have to manage long term pain that will never go away.
Mercaptopurine ( 6mp) completely healed my moderate to severe psoriasis.
Medication and creams but I do not remember the names of the
Meds
For dry and itchy skin I use trader joes body butter and it works!
Eczema
using steroid creams
Dry and papery skin like crepe paper, since being on the SCD diet and coming off all my medication which includes azathioprine and pentasa I have no more issues.
Benadryl
Lots of creams/oils
When I was on Remicade, I ended up with something similar to Pyoderma gangrenosum, although neither the dermatologist or other doctors would confirm the diagnosis). It took almost a year to heal, and finally, after going a wound care center for months, using everything from medical honey to steriods, it finally went away after my third biologic (currently Simponi). That has healed, but now taking Simponi, I get psoriasis on the back of my neck and scalp as well as inside my ear. I use a Clobutosol foam (sp?) for that, but that its just a temporary fix….
No
acne and itchiness are treated with a 5% benzoyl peroxide rich soap from Walmart followed by a local acne treatment – Dalacin – 1% Clindamycin Phosphate
prescription at least once daily, ideally twice after cleaning with the cleaner – was effective for me, but have to do it every so often as symptoms and acne comes back – am taking 40mg of Humira weekly for 5 weeks and had previously been taking 40 mg every 2 weeks for several months when most problems came up.
I have psoriasis on my scalp, which then typically turns to dandruff. When the psoriasis is patchy and pink I use a steroid spray called topicort. My scalp looks the best after a week at the beach–I think sun and salt water combo might be the magical cure. I only started getting these outbreaks after beginning treatment with Remicade. Also have other random bumps that crop up on hand, legs, feet.
Avoiding a whole bunch of antibiotics , to the chagrin of dentists and urologists who should , but don’t know better !
Acne: My skin cleared up after a month on the SCD diet. Your skin is another organ and when your digestive system isn’t working properly, your skin pays the price. I not only ate the homemade yogurt but used it as a face mask twice a week. I had read that the enzymes in yogurt is beneficial to skin. My friends commented on how great my skin looked. The fat in the yogurt is also moisturizing. I still use on occasion, when the winter has been hard on my skin.
No I haven’t stoped the condition
I went completely gluten free 9 years ago and that ended almost all of my life-long skin issues. I had always assumed they were unfortunately genetic because my dad also has them. He is not on a gluten free diet and continues to have those same skin issues. I was diagnosed with UC 3 years ago after 10 years of symptoms.
Increased use of moisturizer.
Itchy skin and rash comes and goes. Sometimes lower my dosage of medicine if I find my skin unbearably itchy. For some reason itchy around my midsection.
Also rash on my neck and shoulder. Had to go to a dermatologist for the
rash on my neck and shoulder. He stated that he too thought is was the
medicine I was taking that was causing this (asacol). Now had to switch
to delzicol and only itching remains.
I tried regular cream but that did not help. Then an over the counter cream with hydrocordisone but that was not enough. I finally used a steroid cream from my derm. That did the trick. I am on the SCD diet and I find this rash starts when I stray from the diet and also when I detox.
antibiotic
Cortisone ointment and moisturising creams
Diet
Itchy and dry skin , I have used Tricortone cream which is also known as Triamcinolone cream , which is another steroid based product , but it did help me .
Rosacea
Changed my diet to a paleo diet
Benadryl and getting off the particular steroids.
For the cellulitis, antibiotic. For the skin cancer, Mohs surgery
Psoriasis Uceris when I have to take steroids short term
I have psoriasis, which I only got after being on Humira for a year…I suspect the Humira brought it on. I use Elidel and Desonide, both ointments, for my skin, and Clobetasol Propionate solution when it occurs on my scalp. These treatments work wonders for me, and I am currently free of psoriasis.
Medication called Clobesterol. I use it for the hives I get from dairy which I also believe is a result from UC
Biopsy confirmed anti-tnf induced Psoriasis – mostly from knees down and 2 lesions on palms of hands. Started Humira in August 2016 and the psoriasis developed around February 2017. I began a ketogenic diet in May 2017 and continue a low carb diet today (carefully avoiding refined sugar and flour). I stopped taking Humira in August 2017. The rash did not improve right away though my UC is in complete remission. I use a steroid cream from my dermatologist on the psoriasis lesions and moisturize my legs daily. I take Lialda daily as a prophylactic measure for my UC. It is now January 2018 and the psoriasis is almost completely gone with the most dramatic improvement taking place in the last 3 weeks as weather got colder. I don’t know why it has taken this long after stopping Humira. I never had psoriasis before taking Humira.
When I have an itch I can’t get rid of I put a little hand sanitizer on it and it stops .
Cream
Anti histamines
Erythema Nodosum The first episode came during a major colitis flare. The doctors sent a biopsy to specialist to verify since two doctors hadn’t ever seen it or not seen for 20 years. First episode treated with prednisone several weeks. Second episode didn’t want another round of prednisone, dermatologist researched and we tried Potassium Iodide oral 1 gram solution 5 drops three times a day mixed in liquid. This medicine is not available in pharmacies, found it in local Compounding Pharmacy (also on the internet). Took for at least six weeks then slowly tapered off. The skin condition was very painful they were swollen and felt like bruises. They cover my legs from the ankle to above my knees. The condition took at least four months to clear but dark marks remain longer.
Hydrocortisone cream… but now the bumps are showing up in other places, and the cream doesn’t seem like a sustainable solution (nor does it’s topical properties last super long).

My Mom had UC and Pyoderma Gangrenosum, which was so incredibly painful and disfiguring… nightmare.

Gp cream
Dry, itchy skin and brittle nails…
Use Amophor regularly, Finacea is excellent for acne type problems
establishing regular visits with dermatologist critical with skin issues relating to ulceratve colitis if time when not extremely ill or in flare. Not missing remicade also helps with skin issues. treatments for vascultis skin only: short dose prednisone, acne: Tretinoin 0.05% Gel 45gm (Onexton 1.2% – 3.75% Gel 50gm as needed) and Blisovi FE 1/20 Tablets, psoriasis of feet: Clobetasol Prop 0.05% Cream 60gm, Eczema: Hydrocortisone Val 0.2% Cream 60gm. dermatologist has special body wash that helps. OXY face wash can be used all over on acne spots.
cortisone lotion
n/a
Stys….I use bacitracin ointment. The darkness around my eyes fades when I’m out of the flare.
paraffin wax was the only thing that helped with eczema,
returning to a normal diet helped with the dry skin (the dry skin came with a severe flare where I was barely able to eat or drink)
I used to use JR Watkins Lavender Salve (the old version) and it seemed to heal up any minor or medium skin issue I had. But then they stopped selling it. Now they have a new version but it does not have the same ingredients and so it does not have the same effects on my skin.

I have used argon oil and extra virgin olive oil on my skin and that seems to help some issues.

I have used Aquaphor and have had limited success on some skin issues. I have only been using this for a couple of months off and on.

Acne whilst taking mercaptopurine (6mp) for 3 years. Didn’t have it all of the time but my skin was in a bad condition more than in good. Switched to infliximab and my skin is so much better now.
It only seems to appear in the wither months. Itchy dry skin on ankles. Dry open cuts on my knuckles and hands. It just seems to appear in the winter time but not any other time of year. When it happens I usually use Gold Bond Medicated Lotion in the light green bottle. It seems to help a lot.
With Skinoren
Changed medication
Itching have not been able to cure
I sometimes get skin flare-ups when I eat certain foods, and combinations of foods. Before I was diagnosed with UC I would get severe reactions from coffee. Open sores and watery welts. This had nothing to do with the caffeine and more with the beans I was told.
Consulted a Doctor who gave some ointment and antibiotics
eczema born with it

Individual Answers with Pictures are Below:

listed as “itchy and dry skin”

listed as “itchy and dry skin”

listed as “acne” and “Chicken Skin KP”

Listed as: itchy skin, dry skin, open wounds, and also some more details: It only seems to appear in the wither months. Itchy dry skin on ankles. Dry open cuts on my knuckles and hands. It just seems to appear in the winter time but not any other time of year. When it happens I usually use Gold Bond Medicated Lotion in the light green bottle. It seems to help a lot.

Listed by the participant as: “Erythema Nodosum” and itchy skin. Also commented the following: Erythema Nodosum The first episode came during a major colitis flare. The doctors sent a biopsy to specialist to verify since two doctors hadn’t ever seen it or not seen for 20 years. First episode treated with prednisone several weeks. Second episode didn’t want another round of prednisone, dermatologist researched and we tried Potassium Iodide oral 1 gram solution 5 drops three times a day mixed in liquid. This medicine is not available in pharmacies, found it in local Compounding Pharmacy (also on the internet). Took for at least six weeks then slowly tapered off. The skin condition was very painful they were swollen and felt like bruises. They cover my legs from the ankle to above my knees. The condition took at least four months to clear but dark marks remain longer.

 

participant listed this as “psoriasis” also added: Psoriasis Uceris when I have to take steroids short term

 

another participant listing this as “psoriasis” , but has not found a way to heal yet.

 

listed as: Lichen Planus, and is yet to find a solution

 

listed as psoriasis and dermatitis

 

listed as Psoriasis(another picture from same person below)

psoriasis(picture above from same person)

 

listed as: Dyshydrosis and eczema (picture below from same person as well)

Also, participant added the followoing: “It ended up “eating the skin off my feet for 2 years” it basically ran its course and has not returned. Happened when I first got diagnosed in 2010. The photo depicts the beginnings of it. I have some salve on it that made it appear more red than it actually was. At it’s worst- both bottoms of me feet were affected and I had to wear plastic baggies with Vaseline on them just to walk. Second photo is just of my healed feet with some Henna Glam art I did.”

 

I had skin issues while on Psoriasis: Remicade. I switched to Stelara. All clear right now.

 

Pyroderma gangranosa & Eczema (foto below is same person)
participant added: Prednisone for the wounds along with seeing a dermotologist and using hydrofera blue wound dressing. The eczema is new and I’m still trying to heal. The last of 9 leg ulcers has just closed (over 5 years)

 

This plus the next foto from the same participant: Chronic Idiopathic Urticaria

 

listed as eczema(same person submitted the next picture too)

 

Pyoderma gangrenosum

this plus following picture from same person: Pyoderma gangrenosum- steroids and anti bacterial medications

 

picture below from same person, listed as:
Dermatitis rash: Lavender oil & peppermint oil helped most. Layered with lanolin, Shea butter, coconut oil, etc. Still hasn’t gone completely away. A trip to the beach (aka sunshine, vit. D) almost cleared it up. Recently flairing, diaper rash cream helps me sleep some.

 

Cystic acne – started only when I got UC, had it for a few years, got worse with change of meds… acne.org treatment finally stopped it

 

listed as eczema and bruises, of note, this participant also listed that they have had their colon removed.

 

listed as open wounds and eczema plus: The opens wounds, I am not able to control. I am awaiting a Dr. appointment to follow up on this.
the Eczema, I use Eucerin lotion or ointment and that seems to help heal up or stop my issues

 

this plus next picture from same participant: Pyro gangrenosum started shots of prednisone every week for a month went away had 3 shots of humaria went away now it’s back again on my left leg

 

Cystic Acne: I have been diagnosed with Proctitis Colitis, approx 17 yrs. I am lucky that it is managed well; I tend to get an episode if I am experiencing to much pressure/demands in life causing stress. cycle is I get run down, this affects my immune system and i get a flare up, pattern has been every 2/3yrs. flare can last from start to finish around 6 months.
Leading up to, during and for months after a flare up I experience cystic acne on my face, around my chin, nose and more recently on my neck. I am under a specialist dermatologist and have been prescribed various treatments but usually until the episode of PC has passed i continue to have painful blind spots over my face. I tend to get a period in between when my skin improves, but always have some sort of breakout, although it is milder when i am well.
I have tried different forms of antibiotics , long term treatment with tablets and lotions; however the short term antibiotics are most effective for me but the Doctor will not prescribe frequently.

 

next picture plus this one from the same person, listed as Atopic Dermatitis

 

listed as psoriasis and itchy skin, also of note, this participant listed they have had their colon removed.

 

this plus next picture from same person, listed as: eczema, acne, itchy skin.
Excessive water drinking. Topical eczema OTC creams. Allergy medication

 

 

next picture is same person, listed condition as “psoriasis and eczema”

 

(next picture below same person too) eczema: Steroid creams from GP . Have about 5/6 different ones so far. It clears up then comes back . Take Piriton for the itchy skin .,

 

this plus next picture same person, and condition listed as: Actually they said it was Lupus

 

this plus next picture same person, listed as “nail psoriasis”

 

listed as psoriasis and/or eczema plus: I live in California so I’m fortunate for the time being that there are topicals that can help, also some internal tinctures

 

next picture from same participant, listed as Psoriasis

 

This plus next picture from same person. Listed as potentially psoriasis, plus some details: I marched into my Docs office and told him that Humira gave me psoriasis on my feet and hands. At this point I was covered with sores on my feet; my hand had less sores but more patches of rough itchy skin.
I got in right away to see a dermatologist. She took some skin samples and told me that I had a lot of fungus growing on my feet and gave my steroid cream to apply once per week. The diagnosis of fungus makes sense as I am on Humira and mercaptopurine and so my body can’t fight off the fungus.
My fungus cleared up somewhat. When I went to Mexico my skin got much better being in the salt water I think. However, I do still have rough, itchy skins that sometimes breaks down into sores. I think underneath the fungus I have psoriasis.

 

Psoriasis: I had pustular psoriasis after taking Remicade. Immediately after stopping the Remicade infusions, my skin returned to normal. It has been five years since the outbreak and I have not had any issues with psoriasis after stopping Remicade. (same participant submitted the picture below too)

 

name of this now known..: I use Vanos creme. aka Fluocinonide
This is a good fix. However they always come back.
Dermatologist says it’s not serious and they know what it is. But when I bring up that UC is related to this, they are clueless.

 

Raynauds plus acne (same person with picture below as well), Acne – doxycycline

 

eczema

picture below from same person: listed as itchy and dry skin: Itchy dry skin Cereve cream and cortisone based rx cremes

 

 

eczema which lasted only 5 days





6 Responses to Survey – Skin Problems Related to Ulcerative Colitis

  1. Bev January 21, 2018 at 1:03 pm #

    Thank you for this Adam!

    • Adam
      Adam January 21, 2018 at 1:39 pm #

      Thanks Bev, much appreciated. A very eye-opener survey I think.
      I’m still having a hard time digesting all this.

      Happy New Year to you and your fam, and hoping 2018 is starting off well for you!!

      Thx again Bev and the BC Clan,
      Adam

      • Bev January 21, 2018 at 5:13 pm #

        I’ll always be here…best site on the web for UC!

  2. Nolan January 21, 2018 at 1:12 pm #

    Curious as so many symptoms show up with this disease. I wonder how many show particular symptoms with chocolate? I usually have a two day flare with it and then it’s over.

  3. Larry Jones January 21, 2018 at 2:13 pm #

    Thank you Adam you have really help with some of my problems particularly when I was first diosmosed.
    Keep up the good work and keep helping and bringing awareness to us.
    Stay up on any new treatment and let us know.

  4. Rosanne
    Rosanne Robinson May 23, 2018 at 6:57 am #

    Wow! How did I miss this survey? Thanks to all that submitted pics. Makes mine seem minor! Also reinforces what I suspected that some meds could be behind my skin issues.

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