Doctor thinks crohns...

doctor thinks crohns...

Hi. I am new to the forum. I'm just looking for some support and maybe some suggestions from others who have been here.I am so miserable right now.

Here's my story....I have had belly issues for the last 13 years or so. (started when I was around 15 now I'm 28). I have had stomach ulcers, GERD, esophagitis, had gall bladder removed 8 years ago, and have gotten C. Diff and antiobiotic related colitis a couple of times. There has also been a suggestion that I have gastroparesis (I have diabetes). I have had severe pain off and on since I was 13 it is either in my upper belly between my belly button and sternum that feels like it is boring through to my back or lower right belly pain that is sharp and crampy. Last year I started having the worst pain I have ever had and had two stays in the hospital with no real answers other than maybe a bad flu bug and problems with my diabetes.

Last summer I started having joint pain and got these lumps all over my legs. They were finally diagnosed as erythema nodosum. I have had them constantly since July. I have lost 25-30lbs since last October from this horrible diarrhea. Now I have pancreatitis and my mouth is also full of blisters and I have been stuck on liquids for about a week still with bad diarrhea and a constant urge to puke. I got into to see a GI doc and he is doing a colonoscopy next Wednesday. He said that all my problems (GERD, ulcers, pancreatitis, erythema nodosum, joint problems, the pain, blisters, ect..)can be tied into crohn's and really believes that is what I have.

Does thia sound like crohn's? I have just started looking at symptoms, etc on the net and would like the opinions of people who have it. Obviously that doesn't replace a doctor but it's still nice to hear from "real people" ya know? Is a colonoscopy how this is diagnosed? Should I have other tests? Do any of you have these other symptom like mouth sores and erythema nodosum and have tips on how to deal with it? I am in so much pain and I'm afraid I'm going to end up losing my job if I don't get some relief soon. I have been working as much as I can but I am soooo miserable right now and would appreciate any help or suggestions people have.


Thanks in advance.
Sara

Hi Sara. I am so sorry you are suffering. This is a great place to ask questions and get support.

From my personal experience, the firsts symptoms I had were erythema nodosum, joint pain and problems with my eyes. What you are describing sure sounds like Crohn's, or perhaps another autoimmune related disease. I was diagnosed through a colonoscopy. I would suggest seeing a Rheumatologist as well. It will help with the joint issues and erythema nodosum. I was in the worst pain with these sympotoms and started on a very aggresive round of predisone to get it under control. It worked fairly quickly. Are you on no medication for the en since the summer?

Good luck to you. Keep us posted after the colonoscopy.

Beth

Hi Sara Jane, welcome. It definitely sounds like you could have IBD or some similar auto-immune illness going on. I would get it checked out. As far as your job worries, if you're in the US you can apply for FMLA (family medical leave). I'm undiagnosed myself but I got approved for FMLA, you just need your doc to fill out a form saying that you have an ongoing illness that would require you to take more days off due to illness than the average person. With FMLA, you're allowed up to 90 sick days (unpaid, but you can use vacation or sick pay if you have it) and they can't fire you or discipline you for taking up to 90 days off for illness. Good luck, and I hope you get some answers soon!

Definitely sounds like Crohn's to me, especially with the mouth sores, pain and diarrhea. The up side to getting a diagnosis is you can get on (hopefully) effective treatment.

Thanks for the speedy replies. It took a while to get the erythema nodosum diagnosed. It started in July and wasn't diagnosed until December when one of them lumps was biopsied. I was on prednisone for a little while to try and help the erythema nodosum until the cause is figured out. The steroids really messed up my blood sugars though and made them dangerously high so my doctor stopped them. I have some anti-inflammatory patches that I can put on my legs but they aren't really helping much.

I will check into the FMLA.

Thanks again.

Hi Sara Jane
and welcome

It does sound like an IBD to me too, hopefully a scope will confirm this, so good luck, hope you get some answers and appropriate meds.
lotsa luv
Joan xxx