I had my J-pouch take down in 1991.  Everything has been mostly fine since.  About 5 years ago I started getting very itchy areas on random parts of my body.  These can appear just about anywhere.  There is not much rash - just a small raised spot (like a small pimple).  The allergist found nothing and my dermatologist is going nuts trying to figure out what this can be.  He sent me for a very extensive blood test and CT scan.  Neither turned up anything.  He believes this is autoimmune in nature - responds to steroidal creams and Prednisone.

I was wondering if anyone else has encountered anything like this and received a diagnosis?

Thanks.

Ross

 

 

 

Original Post

Eczema can sometimes behave like that. Mine is limited to my left hand, and aggressive use of neutral, unscented hand cream has kept it at bay for about a year. SInce steroid cream can’t penetrate the palm very well, I’m glad the hand cream is working. I think the hand cream is better at preventing an outbreak than treating it, which makes it harder to apply to your situation. And I don’t know if yours is eczema.

Hi Scott -

My dermatologist doesn't think its eczema.  He says it doesn't look or act like it - except for the itch.

Glad the hand cream is working for you - much better than using steroidal creams.

Ross

 

Maybe another dermatologist could offer a different perspective. An older one at an academic medical center would probably have the best chance of diagnosing the rash.

Thanks Scott.  I've been to 3 already and my current one is the top guy in the state (NJ).  He only sees difficult patients. 

Ah, so you’re being difficult! 

I once had a tricky skin thing. I consulted 4 specialists and collected 5 diagnoses.

Good luck. At this point I hope it goes away mysteriously, never to return.

Ross, have you gotten answers????  I have the exact same thing and have a dr appt this week. It's driving me crazy. Comes and goes and starts out burning the intense itching mostly on hands and feet. I've had my j pouch for 6 years! 🤔

Hi Ross,

Have the doctors ruled out Psoriasis or Eczema, both associated with IBD?  Also, there is a lessor known ailment called Dermatographia.  An antihistamine typically helps this skin problem - hydroxyzine may help.  Sometimes an underlying low grade infection causes an immune response.  Do you ever have pouchitis when you get the rash/bumps?

Yeast/fungal infections can be suspected if you are male and you see them in arm and leg pits (jock itch) especially, and the feet (athlete's foot). Fungal infections tend to thrive in dark, warm and moist areas of the body.  You are especially prone if you take antibiotics like cipro.  Treatment (first line) is antifungal powder- DO NOT USE ANY STEROIDAL CREAMS, THEY HAVE WATER AND NOURISH THE INFECTION.  Zeabsorb AF does the job for me.  Second line is antifungal pills. Hands would be a spread from itching but once exposed to sunlight the infection will fade. Fungi like the dark, they hate sunlight. Keep the area dry and exposed to as much light as possible, if it’s yeast/fungi.

BTW any dermatologist can do a scrape test and tell you in 30 seconds if it’s fungal. Skin is scraped and looked at under microscope. 8th grade biology class all over again. You should ask for one to confirm or deny if not already done.

Last edited by CTBarrister

BTW the behavior of yeast infections is to come and go randomly and its because conditions are too dry, too cool or too light.  They start and stop with me especially in armpits and legpits and feet.  This went on for a while until I got smart and used a commercial blow dryer on those areas after showering.  You have to be smart with your hygiene or you will pay - it's that simple especially for those who are on long term antibiotics, prednisone, Entocort and other immunosuppressants.  Cipro is the most deadly to skin bacteria of all antibiotics and that is why fungi will flourish on cipro's watch.  The bacteria die, and the fungi which already are in your skin, multiply to fill those empty spaces.  This is what my dermatologist told me after my positive scrape test.

Last edited by CTBarrister

dermatitis herpetiformis

It's what I  have and what you described. 

It's autoimmune related. 

And it sucks to have it. 

As soon as my colon was removed it reared its ugly head. I use a prescription cream that keeps it at bay.  Covered areas are especially affected areas. Even long sleeves. It's mainly on my arms and fingers. But now that I have an end ileo it's under the wafer. And there isn't anything I can do about the itch but ignore it. I use the cream in between changes but make sure it's all off before I put another appliance on. 

The itch comes and goes.  I find if I come under stress my fingers break out. It kinda reminds me of when the stress would affect my colon when I had it. Stress made the situation worse. But it's gone and now I have this to deal with.  And it can be intense. Because you can't and shouldn't scratch it. It only makes it worse. Of course  

Ask your dermatologist if this may be it. There is a test. Mine used it and determined what it was right away. 

Good luck. 

Richard  

Thank you all.

Lots of suggestions on here so let me address all of them.  First, I am certain it is not a fungal infection.  It responds to steroidal creams and my dermatologist ruled this one out early on.  Second, It is not Psoriasis as the symptoms are all wrong - no scaly rash.  Third, is doesn't look or act like Eczema according to the dermatologist.  Fourth, he thought it might be Dermatitis Herpetiformis but the bioposy was negative for that. 

I am going to see him again in 2 weeks and will see if he has any other thoughts or diagnostics.  I'll report back.

Ross

Ross, 

Has a possibl allergic reaction to laundry detergent or dyes or some other substance been discussed or ruled out? With the other 4 top suspected causes all being ruled out this is a real head scratcher.🤔

Last edited by CTBarrister

Ross, did you ever discover the mystery. I still have not. I’ve been watching my diet and taking note on what I eat or drink but still nothing. I have come to the conclusion though when I drink water from a plastic water bottle is when it shows up. Well that at least my diagnosis this week. It’s driving me crazy. 

Unfortunately, we never came up with a diagnosis.  My dermatologist is sure that it is autoimmune in nature.  I have autoimmune antibodies, but they are non-specific.  So, the treatment is basically immunosuppressant drugs which are working well.  Started at a high dose and now backing it off gradually until we find the minimal effective dose.  Need to keep doing blood tests to check for potential side effects, but definitely better than using tons of very high potency steriodal creams.

Intense itchiness is a symptom of Primary Sclerosing Cholangitis, a liver disease that is often associated with colitis.  I have a Jpouch and PSC and go through bouts of itching periodically.   You should ask your doc to check it out as a possibility. 

 

Thanks for the reply on PSC.  This has been ruled out.  No other symptoms and my liver tests have all been good.

Wow, I am reading all this and going to say that I get this strange situation every fall and spring... Bumps that itch like HELL on the back of my neck and then that turns into a rash. I also get really dizzy when the weather changes like that. It's like an allergic reaction to each season and my body fights itself with nature until it settles down as I get used to the season! So weird!! but so true.. year after year the same thing!!!! I had Ulcerative colitis for years and years and years and finally got a J-pouch and I truly believe the UC is still living in my body but I was just able to get rid of a very very diseased organ.. my colon!! I have very bad athlete's foot from time to time and once in awhile, like now, I have a rash under my arms. I get tired of always going to the doctors and I am reluctant to keep trying different medicines only to have bad side effects that are worse than the itching so I just live with it. At one time, I was told I had some Chrohn's going on as well. But who knows. I do have a creame for the athlete's foot but yeah, I don't always want to use it.. I try Tea Tree oil from time to time and someone just told me about witch hazel and something else. Anyhow, all this to say, I have no solutions or advice other than to say, I just know my situation is related to a bad autoimmune situation. I'll hope you get a solution and can help us all. I have also experimented with no gluten but that didn't help either.

Hi Dancing Girl -

The immunosuppresants are working well.  My dermatologist has me on mycophenolate mofetil (Cellcept).  So far no real side effects.  We are in the process of gradually reducing the dosage to find the minimal effective dose.  If your issues are autoimmune related you might try something like this.  The other option was prednisone (which I was on and off for some time, but that obviously has side effects).  Good luck.

I am glad things are working out for you.

 

For me?? I'd rather itch then be on meds with tons of side effects. I was on prednisone for years before it was decided to take my colon out.  Good luck to you as well!  NO MORE MEDS FOR ME!!! NO NO NO!!!!

 

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