Has anyone else had this issue, as its baffled my gastro doctor and dermatologist!?!?!

Hello I've been dealing with Ulcerative Colitis and then Crohns for a good number of years now. At a year and a half I was diagnosed with Ulcerative Colitis, sadly my doctor at the time thought it was a winter flu and let me go longer then he should of before finally getting referred to a gastro doctor that then had fun trying to get me under control after being let go for so long.

To my severely unfortunate luck the regular medications they use for Ulcerative Colitis such as Asacol, Azulfidine, and Dipentum did not help and instead it was found I was allergic to the 5 aminosalicylic acids. So on top of being let go then the meds they tried just made things worse off even more. Finally it was found a mixture of Immuran and Prednisone worked to help get me under control. So for 13 years I was very lucky to be managed with those 2 meds. Sadly in 2004 after my yearly colonoscopy (I've had 13 so far in my life and I'm only 21) it was found that my Ulcerative Colitis which was always on the door step of being Crohns had finally changed to Crohns disease. 3 years later my body stopped using my immuran the correct way and even with the immuran predisone combo with flagyl added did not do anything to help me.

I around the exact same time had started losing weight extremely going from 139 down to 115 and looked horrible. I was admitted to the hospital and it was found I now had Gastroparesis (this was due to another health issue) but while in there they wanted me to start on Humira & Methotrexate. Which when your underweight and skinny trying to give yourself pen injection from those retarded pen injections that shoot the needle out like a bullet its painful and I'm used to needles from blood work, shots and IV's.

Sadly after being on it for awhile I found Humira & Methotrexate were completely worthless. I was then placed on Remicade and have to admit out of every Crohns med out there Remicade is a wonderful medication. I had to be on a higher dosage to make it work then normal but still it worked FAR better than any other medication I was on. As we all know there is no medication that makes you 100% perfect from crohns effects, especially in the fall when flare ups can just pop up no matter what your on and how good it is.

My problem is I've been on remicade for over 4 years and started to notice a bad skin reaction on my back end. To the point its very uncomfortable and very embarrassing. Its a skin problem (which I've still not found out what it exactly is) that has huge pieces of skin flake and peel off and then goes bright red and itchy (SEVERELY Itchy) which then weeps and bleeds and I'm not talking a little bit I'm talking enough to soak through boxers and shorts in a matter of a minute. It will continue to weep and bleed a lot till it dried up and then goes back to being skin flaking and repeats the cycle all over again constantly. I've been on a ton of antibiotics and creams and nothing has helped.

After showing my gastro doctor and being told he had never seen anything like this he had my dermatologist appointment bumped up to right away as an emergency and I went to see the dermatologist who was not sure of it either and took a biopsy. My regular family doctor in the beginning had done a wound culture which came back normal (which is screwed up as if you could see this problem it scares you) and the blood work came back normal as well. Although from me being on so many immunosuppressant drugs all my life it was agreed that my immune systems to weak to even worry about putting up a fight which would then show problems in the blood work.

I knew there was something wrong not only from this rash/infection/skin disease (who knows what it is yet) but also from my temperature constantly being in the 99.5 or above range and my usual temp is 97.7 also because on my hands not the palms but back side of them has a whole bunch of little red bumps that are itchy on them and it would come down the whole way to the wrist on the palm side, these bumps would come and go but can always still be seen even if there not what I would care flared up.

So needless to say between a family doctor, gastro doctor, and dermatologist there all unsure what this is but can at least agree on one thing this is the result of the remicade as there is nothing else I am on that would even come close to creating this issue. So now I have to go off of the Remicade that has worked so wonderfully and go onto the last crohns med I have not tried yet called Cimzia. I do like the way they have the pen injection set up that you control the needle going in and the amount of the liquid medication going in as well.

So anyway I'm hoping possibly someone out there might have had a similar instance and might be able to tell me what the hell this is and what I can do to get rid of it. This is a nightmare that's been going on since April of this year with no luck towards anything helping the situation. I can barely go away anymore as even with putting pads in my boxers it still weeps and bleeds so much they just fill up. I apologize for having to describe something so disgusting but I'm at my whits end and hope someone out there might be able to help me.

While yes Remicade is a dangerous med cause it can cause cancer and lupus and other bad problems all of the crohns meds are that way. Hell methotrexate can kill you simply from taking that and then Remicade/Cimzia/Humira/Enbrel/Simponi they all can cause cancer and the other crap. Simply look at the booklets that go over the side effects there all basically the exact same. But think of it this way as most Crohns patients know which would you rather have being stuck living in the bathroom or taking a medication that CAN possibly be dangerous but your chances of it actually causing one of those problems is extremely slim while what it does do is allow you to live your life. I mean for years I would drive into the hospital and get the remicade at the higher dosage and have them speed it up to the point mine would only take 2 hours instead of most people going for 3 or 4 hours. Then I would drive home. Sure the IV remicade made me feel cold to the bone most of the time I simply put the heat on in the car on the way home. It did usually make me to the point that once I got home I would lay down. But due to other health issues I have insomnia so it was helpful to actually get sleep. I hate this because of course I find the perfect med and seems like its working perfect and well now I got this because of it.

Anyway I thank you all for your time and hope that possibly there is someone out there to help give me answers. Thank you for your responses in advance as well!

~LordWood


********************

I added some paragraphs so that your post may be easier to read.

Post Edited By Moderator (ivy6) : 8/13/2011 2:35:13 AM (GMT-6)

I thank you for your input, sorry if it gave you a headache looking at the post. If this is part of the Crohns itself like you had, I guess my question is why the hell has it taken over 2 decades to start doing this?? My Gastro docs biggest hope is that after being off remicade for awhile that it will go away.

Post Edited (LordWood) : 8/13/2011 2:47:02 AM (GMT-6)

Wait a minute, You're going to take Cimzia, and it has self injecting pens? I've been using Cimzia needles and have to staff myself with it rather than the pen. I'm gonna have to talk to someone about this.

It's too bad you have to come of Remicade. For me it was my wonder drug as well but it stopped working for me. :(

Good luck with the Cimzia, unfortunately it hasn't worked as well for me as the Remicade did but for others it has worked quite well.

Is it possible your skin condition can be fungal related, having taken so many antibiotics, and all? They are mycotoxins (fungal poisons). I would recommend a reputable probiotic at the very least to restore your bowel flora. There is mounting evidence that probiotic therapy may alter disease expression in IBD. Just sayin', for "me" I finally figured out my UC symptoms were fungal related. Low carb diet was necessary, along with antifungal supplements and probiotics.

Your doctor knows best, but if your condition is systemic, not sure if topical creams would be of much help, especially if you continued eating high carb. Hope you find some relief soon. What about probiotics??

Probiotics are not just yoghurt. I take a probiotic called Primadolphilus Fortify by Natures Way. It has 8 billion cfu's in it, and you can find it in your local healthfood store in the refrigerated section. Others use probiotics such as VSL#3, Culterelle, Florastar or Align to name a few.

With Crohns we tend to have an overabundance of bad bacteria in our intestines, and the probiotics help to add in more good bacteria to even out the bacteria fields. These are something all with IBD should be using all the time. Just fyi!

Lordwood, what you have sounds like what some guys got in Nam. We called it jungle rot , but what it is , is , a fungal infection. You can get it here too but usually it comes from sitting on a place that has the fungi on it, such as the seat in a hot tube . Some hot tubs have problems with the water that stays in the piping growing such fungi which then ends up on the seat . Deck furniture that does not get full sun is also suspect and I wonder sometimes about how clean the toilet seat in the public restroom is so I carry disinfectant . It can go away and come back too just like athletes foot . Fungus is hard to kill so talk to your dermatologist . l

I have had crohns since late 2006. Since April of this year I have similar if not the exact symptoms. I have it on my hands and on my ankle, which has gotten to the point of making it hard to walk some days because of how bad it is. I went in and saw a dermatologist about a month ago after 2 months of seeing my primary care doctor for it. I was told it was psoriasis and Ive used 3 different creams and ointments.... None of which have helped. Also I am on Cimzia and have used it for over a year now, compared to all the other drugs I've used including Remicade (which I hated and later failed the treatment). My doctor told me that Psoriasis can be and is commonly associated with Crohns, and my best bet was taking the cimzia. Honestly it has helped the symptoms but they still are not completely gone.

I have been researching ways to better my health and possibly eliminate my Crohns all together. I strongly feel that a healthy diet can help our bodies heal. I am in the process to switching over to organic foods. Its hard but I can already feel a difference. My body has been able to "breathe" and Im not as reliant on my medications to get me from week to week. I strongly suggest looking up healing your body from Crohns and spending a while reading about how certain foods can actually make people with crohns more sick.

With my reading I have found something that I am in the process of trying called MSM cream from Grace Harbor Farms. Go to the farms website which is just its name, and read about it. I think that it may help.

Anyways I hope this helps!

snappiernickle9- psoriasis was thought at first but the amount of bleeding from this and the placement on one side rather than both threw the idea of it being that out. I am happy you are changing and trying to go to a more healthy diet, but do not be fooled this option will not help all crohns patients. I tried going to organic and all natural foods and even juicing all I did was set myself back and made myself worse then before. Which I found some people get benefit from the natural diet and some simply don't. I even spoke with my doctor about the issue which we all are different and unfortunately somethings wont work for everyone. But I wish you all the best and hope Cimzia continues to help with your psoriasis.

pb4- When I had UC the entire area was inflamed with no skipped pattern of inflammation, I have the pictures and it was actual UC it was not Crohns at all. Until 2004 then after my colonoscopy that year it showed the inflammation was now in both the large and small intestine as with UC its only in the large. I do have both but started out as UC and then now Crohns. You are right about "with CD the inflammation can go much deeper in the surface of the intestinal lining, with UC the inflammation is surface-able only" though.

Your issues similar to mine with your skin, I had a cracked butt crack for over a year that bleed on a regular basis.  I didn't soak clothes with blood but the discomfort was insane, along with all the misdiagnosis such as yeat and fungal infections. My GI sent me to a dermatologist that is well known for coming up with unique solutions for challenging auto immune related skin issues. I was diagnosised with Psoriasis and he prescribed a prescription that a local pharmacy has to create and it  finally healed my butt issues.  I thought giving you the ingrediants may help in case your new meds don't solve the issue.  Your dr might find value in the ingrediants: zinc oxide, nystatin, triamcinolone aquaphor, menthol, methyl salicylate, eugenol, clioquinol, and benzolyl peroxide.   Good luck!

I have this exact same issue that was also on belly button, is in my top part of my left ear, and currently on my base of spine top of butt crack.

I was prescribed a cream that has helped and that is: Clotrimazole and Betamethasone in a 45g tube. and each gram of paste contains mg clotrimazole and .64mg betametasone. it healed my issue that sounds like you so good luck!

I actually had a fistula right and and so quick to help you out it actually busted in mid stride. So thanks for that haha been waiting a week or so for this.

I am only on remicade and use to be on azathioprine than I said F that due to increased risk to a rare cancer with remicade. But that ointment is a cortisteroid+a yeast killing cream. It does take a while.