Crohn's Disease Support Group

Hello Everyone:

New to this site, and fairly new to my condition(diagnosed in Dec. 2009). My doctor currently has me on 3 tablets of Entocort EC every morning for the last 5 months. Medication offered relief right away.. thought I was on the high road.

In March, a large red sore appeared on my Rt.lower leg. As the days progressed the sore grew in size and intensity. Fire red, hot to touch and extremely sore. Doctor said it is Eyrthema Nodosum (inflammation under the skin, indicating the Crohn's is NOT under control) and prescribed Prednisone daily. Prednisone daily, along with Entocort EC was enough steriod to put my immune system in a tail spin. Now, 2 months later off the Prednisone all together, still taking Entocort EC, sore is still there, and very angry. A second sore has appeared on my Lt.leg above the knee.

Has anyone ever experienced anything like this?

Welcome to the group Mija! WOW! You have been through quite an ordeal. I was so relieved when I finally tapered off Prednisone. Hmm..I have never experienced the red sore you are explaining. Has your GI seen the second sore? Did he say it would go away soon with the Prednisone? I really hope someone can chime in here if they have any encounters like yours.

I wish you the best and I can tell you one thing. crohn's is so complex and I am learning each day of it. I look forward to hearing more of your story. Please keep us updated.

Hugs!

Thank you for your response. I am currently working with an Internist and GI. They both do not know what else to do with me. They have referred me out to a Rheumatoligist. I still have not made my decision to see another doctor. I am starting to think there is no doctor out there that can help me. And frankly, I am tired of the roller coaster of meds and symptoms.

Thank you for your thoughts!

Mija unfortunately for all of us crohns it is a roller coaster ride with the meds and Doctors. Its all we have until they can find something that will work for us. I have been on every med out there it seems. Most with no luck. But monthly injections started in Mar 09 finally gave me relief and remission from this disease. It will come just have hope and strength. Please ask our members anything and know we are all here for you.

Thank you Nick333. Once I read your reply I remembered something....when my sores first appeared I went to my Internist, thinking it was a blood clot or maybe something else. She knew right away it was EN. She said she would speak to my GI because my Crohns med would most likely be changed. Never heard back from her. When the second sore appeared I wrote her a letter she could not ignore! She called me and told me she had spoke with my GI and they both thought I should see a Rheumatoligist.. no mention of a differnt medication... what is going on????

I would go and sit in their office and demand to be seen. This is not a problem to be treated lightly. If a sore like this is as red and painful as you say it sounds like it is infected. This can lead to sepsis! Please go see your doctor right away and demand to be seen!

Thank you to everyone for your encouragement and support. I have taken in everything you have said. I have come to the conclusion that I can not control what happens to me by simply ignoring my illness. Even though I am very strong willed, and have a high tolerance for pain my body is trying to tell me something is wrong. I can not control my illness, my illness controls me as long as I let it.

So, today I made my decision. I have an appointment for June 3 with a specialist (Rheumatoligist). He is suppose to be the best of the best around "these parts". I can not and will not continue to see a doctor that will not follow-up, diagnose and treat.

Wish me Luck!

No doctors follow up, diagnose, and treat. At least not one that I have found. I have seen 13 and they are all the same. You must take the bull by the horns and beat them with a stick every day in order to get anything out of them. They don't care your a just a sheet of paper and a check to them. You have to fight for all of your info and you have to fight for pain meds when you need them and you have to continue. No one meets you half way in this disease. If you want to be heard Scream! If you want treatment be there every day and sit in their office until they fix you. I went into the hospital and they were just going to release me. I refused to leave and demanded they send in another doctor. Fight!

I had eretheyma nodosum from september 2009 to jan 2010 and I had this on my feet, an all up my legs.. They were as you say red and sore lumps, which I mistakenly thought were bites at first, until I got about 50 on each leg.. When they began to go my legs and feet became really dry.. I found elevating your legs above ur hips helps, like putting them on a cushion when lying down.. I also saw a dermatologist who took a biopsy an sent this off to be checked.. By this time mine had subsided, but they had been at a point where I could not even walk they were that painful.. It felt as though the lumps went all inside my legs an wrapped around my bones.. Steroids did help a bit, an prevented them coming back during my next flare..

I can totally sympathise with what you are going through, it is an awful symptom, altho had it not been for mine, I may not have been diagnosed yet.. I hope that they do begin to get better soon though xx