My Colitis and Getting Diagnosed with Erythema Nodosum

Introduction:

Hi.i was diagnosed with uc about two months after I had my first child, which was about five years ago now. I’m from London. I enjoy spending time with my family.

My Symptoms:

Currently I am not too bad but am struggling to keep my colitis under control.looking at trying new dietary options and keeping a diary of everything.

Colitis Story:

At the beginning I was concentrating so much on my new baby I couldn’t see that anything was wrong.then I noticed that I had suffered with diarrhoea for a few weeks constantly with serious stomach pain. My GP told me to take paracetamol.i did, nothing happened.this continued for a few more weeks with still the same response.finally decided to go to hospital.after one X-ray I was told it was ulcerative colitis, I was admitted and put on steroids.  Everything was happening so quick now.  The doctor at the hospital informed me that if the steroids didn’t work they would have to operate I burst out crying, I didn’t understand any of it.

I had my husband and my new baby and I was so scared. As time went on I was discharged with my steroids.i coped for a while until I noticed something strange about my legs.  It looked like I had tiny bites on them. Once again my General Practitioner said they would disappear I coped until the bites turned into huge red marks on my legs it looked the skin had been burned off.  I couldn’t walk it was so painful.  Went to hospital and got diagnosed with Erythema Nodosum, a side effect to UC.

The doctors had never seen it before.  For days I had doctors and students coming to look at my legs.  I was given infliximab.  This with my medication worked a charm.  I went back to work, because I was still on maternity leave and I was in remission. Had another baby with no problems at all.  My colitis hasn’t been as controlled since then.  In and out of hospital, my husband having to take time off from work to look after the kids.  That’s the worst thing about all, not the pain but how much people have adjusted their life’s while I’ve been in hospital, they’re so nice about it, but it’s so hard knowing I have rely on people so much.  It feels like such an inconvenience.  At the moment I find myself confused about every pain or upset stomach I get.  Is it UC or isn’t it, should I eat that or am I going to suffer for it.  Mostly I just worry ab out how bad this could actually get for me and my family.

Where I’d like to be in 1 year:

More knowledgeable on what options there are and hopefully figure out what triggers my flare ups because after five years of it I’m still not sure.

Colitis Medications:

I’ve had prednisone, infliximab, azathioprine, balzalzide, more prednisone and I’m on asacol at the moment. Although I didn’t end up staying in remission, infliximab seemed to keep it at bay for the longest.

written by KB

submitted in the colitis venting area




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erythema nodosum

7 Responses to My Colitis and Getting Diagnosed with Erythema Nodosum

  1. bev October 27, 2012 at 8:59 am #

    Hi KB,

    Please incorporate a good probiotic into yor life, first thing upon waking every morning. Don’t miss a day. Within a month, you may just see alot of your UC disappearing.

    I am med free for 9 months now thanks to probiotics. Take one that is recommended for UC. You will NOT be sorry!

    Cheers,
    Bev:)

    • Kerrie Byrne November 6, 2012 at 10:46 am #

      Hi.thanks for the advice.i did give it a go for a while but saw no change.as you said though I have to be consistent so il give it another go.

  2. Richele
    Richele November 25, 2012 at 9:52 am #

    Hi! I have a question for you…did the rash start out as a scaly, itchy patch? I have a few ‘rashy’ areas on both of my shins that itch like crazy, and are red and hot to the touch. I can’t find any information on Erythema Nodosum and itchiness.
    Well wishes to you!
    Thanks,
    Richele

  3. Beth Yeatts November 25, 2012 at 6:29 pm #

    I had reply to the mother whose son had suffered uc I was curious and after more reading I am seeing this symptom of the rash..
    I will get it on my lower legs only for no apparent ryme or reason it starts out with tiny red bumps no burning or itcching and spreads in blotches of red them my feet begin to swell this will last for about a week. I take Zofran for nausea daily, protonix, I cant take the raglan anymore sucralfate before I eat anything and avoid fats example cheese, pastas meat, I cannot digest them. I have to stay hydrated and be o so careful with diet and portion control. If I do begin to get ill I get dehydrated very quickly and have once even gone into renal failure. Not having a firm diagnosis is the worst part. I just keep asking the Dr.s and Nurses what is wrong with me..maybe I can finally find out.
    With Love and Peace,
    Beth

  4. Kerrie Byrne November 26, 2012 at 8:51 am #

    They started like bites then they got bigger and bigger.really red and sore.they were itchy but most of all painfull don’t leave it cos apparently they go on there own.mine didn’t was in hospital for weeks.hydrocortosone injections helped.adams got a link about them off my story.

    • Kim Marie
      Kim Doyle May 14, 2013 at 2:56 pm #

      I was diagnosed when I was 9 years old when I married at 18 and went on Birth Control pills I grew those same big hot nasty bug bite slightly raised bumps…they were hot and large and when they went away they left black and blue marks…Never met anyone else who had that happen until today !

  5. DONENE M. BRUCE April 18, 2014 at 10:52 am #

    i have had erythema nodosum since 1992 when my mom died. i don’t know
    if that’s what triggered it. i also have mitochondrial disease which is genetic.
    i am anemic and having a new breakout of bumps. i feel horrible. Every 4 wks
    i get infusions of IVIG to help me fight infections. Call any time 716 823-3061
    Thank you

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