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My crohn's story

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MandyJ78

Guest
my crohn's story

I'm really excited to find this forum online. I've been living with Crohn's since Mar. 2006. I was completely shocked when I found out that's what I was diagnosed with. I grew up having sharp pains in my upper abdomen but was also told I just had a nervous stomach. When I was 18 years old, I had an outbreak of red raised nodules on my lower legs. I had no idea what they were and could not find anyone else who could tell me what it was. Then 3 years later, I broke out with the nodules again. They would always go away after about 8 weeks. The next breakout was at age 24. This one was the worst outbreak I had. I had severe left knee pain and over 20 nodules that broke out on my legs. It was terrible!! I was sent to a rheumatologist, but by the time I got in to see him my nodules and joint pain were gone. He asked me a million questions and sent me home. Then, the nodules came back a couple years later and I finally got in to see the doctor again while the nodules were there. He ran a ton of blood tests and after a million more questions, told me he wanted me to be referred to a GI specialist. I had no idea how that had anything to do with my legs!! I saw the GI doctor and during the exam she began pushing on my stomach while I was laying down. It hurt really bad and really surprised me when she said it was indicative of Crohn's or Ulcerative Cholitis. I just couldn't believe it. I had the colonoscopy done within the week and sure enough...Crohn's. I began Pentasa and Remicade, which has helped, but I definitely still have symptoms. I can't tolerate steroids at all. My doctor said my small intestine was very ulcerated but overall symptoms haven't been terrible. I certainly haven't lost any weight, and I can live a pretty normal life. I do struggle with fatigue at times and a lot of abdominal bloating.

I'm just thankful I found other people that struggle with the same symptoms and disease. I love the support!!
 
I am new here too and I have found great comfort in hearing about other's experiences on this site. It is the only one I have found of it's kind. That is great that you haven't lost any weight. That has been one of my struggles...just maintaining a healthy weight. I too feel fatigued a lot, but also live a pretty normal life. Anyway, Good luck to you!
 
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Harris88

Guest
MandyJ78-
This is my first post too. My husband has suffered with crohn's for over 25 years the last eight years have been pure hell for him. He is 6’ 1” and only weighs 145lbs. he is current on Imuran and several other drugs. My question to you is regarding your outbreaks of red raised nodules? How is this connected to the disease? My youngest daughter at the age of 15 months was cover from head to toe with petechiae, I am wondering if your nodules were petechiaes? My heart truly goes out to all of you suffering with this horrible disease.
 

My Butt Hurts

Squeals-a-lot!
I believe those nodules are called Erythema Nodosum.
Related to Crohn's because , well, heck - what isn't?!?
I think I have had them twice, but mine didn't match the pictures that I have seen. Then again - nothing for us Crohnies is the same for everyone.
Mine were like big pimples but a bit harder, only on my shins, and terribly itchy.
From reading the petechaie link, they don't seem the same at all. Hopefully your daughter's was just caused by a virus.
Welcome Harris - and have your husband join us too!
 
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MandyJ78

Guest
My nodules were under the skin. They were all different sizes but were very hard underneath. They are another way of the body reacting with inflammation. I also get mouth sores, or fever blisters. My doctor said that's another symptom, as well.
 
My Butt Hurts said:
I believe those nodules are called Erythema Nodosum.
Related to Crohn's because , well, heck - what isn't?!?
I think I have had them twice, but mine didn't match the pictures that I have seen. Then again - nothing for us Crohnies is the same for everyone.
Mine were like big pimples but a bit harder, only on my shins, and terribly itchy.
From reading the petechaie link, they don't seem the same at all. Hopefully your daughter's was just caused by a virus.
Welcome Harris - and have your husband join us too!

I have had the Erythema Nodosum several times. My Gi explains it as the body's reaction to inflamation. It expresses infalmation inside somewhere else on the body. Mine were at first like mosquito bites though NOT itchy, then they got bigger and swollen and turned more into hard bruised bumps and only on my shins, never back of legs and never above the knees. They took months to go away, I looked like I had gone rock climbing and done a bad job of it! but I was also on prednisone and bruise easily when taking it.

I also get sores in my mouth at the same time, whenever I get the "bumps" I had both the day I was finally diagnosed and he said it was textbook crohn's and then had 6 interns come in and check me out and ask me 1000 questions to see if they could diagnose correctly . . . guess they have to learn too. They were all there for my first colonoscopy a few days later, what fun!

Hope this helps
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I had never had hives till I got this disease...can they be related to it too or is it just a coincidence? Only got them once for like 2 weeks, was really odd and could never figure out what caused them.
 
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