Ulcerative Colitis Tips


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"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

My Skin Problems with UC

Introduction:

Hi, I’m Heather. I’m 36. I was diagnosed with UC March 2010. I’m a critical care RN from Las Vegas. Sometimes we are the worst type of patients.

My Colitis Story:

It took me several weeks to seek help. At first I thought it was a stomach bug. No big deal. But when I started to get weak and tired all the time, I knew something else was wrong. Then the bleeding started, I figured it was hemorrhoids. But it was a lot of blood. I was so tired that I couldn’t keep up with my 18 month son. So I wound up a patient for a week at my own hospital. It’s so different being a patient than caring for one. The CT scan showed severe colitis. My GI scheduled a colonoscopy the next day. My colon was so inflamed that he aborted the procedure. He figured it was infective colitis so placed me on antibiotics. No matter how hard you try to stop the spread of infections in the hospital, it’s never fool proof. So I figured maybe I caught something from one of my patients.

Two weeks after my hospital stay, I was still weak and bleeding. So my followup visit, he decided to try me on UC meds just incase and do a repeat colonoscopy in 6 weeks. So I started Apriso. I had immediate relief the first day I took the meds. And continued to improve. The repeat scope indicated healing UC. I felt much better, however was bummed because I couldn’t tolerate any vegetables unless they were canned or processed.

I had a flare up around Thanksgiving 2010. I wound up on predisone for about 3 weeks. Then someone told me about the SCD diet. I talked with my GI who didn’t think it would really do anything. But I decided to try it. I really wanted to eat veggies! I have been happy ever since with the diet.

I had another flare up around July 2011 and wound up on prednisone for a few weeks again. But afterwards felt fine.

I’ve had eczema and skin problems all my life. However… The end of September, I developed a little pimple, or blister in my groin area. You know.. Like an ingrown hair. You get those sometimes… It opened, no big deal. Neosporin and a bandaid. However, that night, I woke up in pain. The little blister was now about 1 in x 1 in and draining like crazy. I went to my family doctor that day. He looked at it and thought it might be a brown recluse spider bite. It had dark edges like a spider bite. He gave me antibiotics and cultured it.

Being a nurse in the desert, spider bites happen. They start small but spread fast. So I wasn’t worried when it started to get bigger. But it was really painful and I had trouble walking and sitting. It was in a bad area. Within 4 days, it was about 3 in x 4 in. I woke up and got really shaky and almost passed out. I was pretty sure I this infection was getting worse. I wound up in the ER. I figured it was a superbug like MRSA.

In the ER, the doctor figured MRSA as well. I got admitted. They assigned a surgeon to look at the wound which now was even bigger. He talked about surgery and possibly significant wound care. Then my attending doctor came in.

He says, “You have UC right? I remember a case study when I was doing my residency about a rare condition called Pyoderma Gangrenosum. It affects a small amount of people with autoimmune diseases” I was not in a flare up. He notified my GI who immediately came in. He looked at the wound and said in his 18 years of practice he has seen this 3 times. It’s not an infection. It’s treated with high dose steroids.

So I wound up with IV steroids for 3 days. The wound started healing faster than I have ever seen a wound heal. However it took almost 2 months for it to close.

I’m still on prednisone to this day trying a very small taper. 2.5 mg every 2 weeks. I had a flareup around New Years day, so I’m back to 20 mg daily. I may have to start on another med soon.

As for this weird skin condition. It can reoccur at any time, and any where on my body. So I need to be aware of any cuts or open areas at all times

Colitis Medications:

I’m on Apriso and prednisone right now. I still maintain my SCD diet.
written by Heather
Submitted in the Colitis Venting Area

 




Pyoderma Gangrenosum

4 Responses to My Skin Problems with UC

  1. Kathy Prieto January 30, 2012 at 4:42 pm #

    Wow thanks for sharing. My husband breaks out on a horrible rash if in the sun. It started to happen after his 2nd big flare. Even if hdood not in the middle of a flare, he will get it. So he wears ling sleeve scuba gear when outside in summer.

  2. Maggie January 30, 2012 at 5:00 pm #

    Thank goodness we have a place to vent. I have psoriasis and psoriatic arthritis as well as chronic fatigue with my UC, which I’ve had for years. My last flare was just after Christmas, the worst ever, Entocort saved me and now I’m taking mesalamine, which is helping but I haven’t fully recovered, each day is different but I’m not in a flare. Good luck, Heather.

  3. Melissa January 30, 2012 at 6:33 pm #

    Wow! So glad you’re on the mend. Before my ileostomy, I used to get what I called horrible boils. Always in the groin area and oh so painful. I was pretty much on steroids for 12 years so I bet my boils came when I was off steroids since mine never got bigger than 1-2 inches. I was never off prednisone for very long. Very rarely do I get a boil now and they are usually in my armpit area. Sure hope this is the first and last one for you.

    • Miss. Meg January 31, 2012 at 7:45 pm #

      I had the same thing in the groin area. It came right after my first dose of Remicade. I also got shingles. So strange. I guess it sent my body into shock. I was better after I got all of that out of the way!

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