Hi---I'm new

[jeaneen]

Hi---I'm new to the Crohn's forum. I was diagnosed in 2000 at the age of 36---I'd never heard of Crohn's disease at the time. My symptoms developed quickly and became very severe over a period of six months or so. Prior to that I had never had any problems.

I was hospitalized once about 10 years ago, and I've been on remicaid infusions every eight weeks since then. I'm not as sick as I was in 2003, but I'm far from being well. I have to have a CAT scan tomorrow---I'm not looking forward to it, but it will be interesting to see what they find. My doctor is thinking about putting me on some kind of immune suppressor---I can't remember what he called it, but he said it was a good alternative to prednisone. I haven't taken prednisone since 2003 when I was hospitalized. Remicaid is the only medication I am taking right now.

I was wondering if there is anything I can do to help myself get better---diet, exercise, anything like that. If you have any helpful suggestions, please share. Thanks!

 

[David]

Hi Jeaneen and welcome!

There's definitely a lot of options for you But first, can you answer the following as that will help guide our answers:

1. What specific symptoms do you have? Even if you have a strange symptom you don't think is Crohn's related, please list it. Anything from pain (and where it is) to rashes to tingling, etc.

2. Are you on any sort of supplements?

3. Have you tried any diets or dietary exclusions in the past/

4. Do you know specifically where your Crohn's is located? Just small intestines, small and large, just large?

As for the immune suppressor, could it have been 6-MP, Azathioprine, or Imuran? Or was it another form of steroid such as Entocort (Budesonide).

Again, welcome

 

[jeaneen]

I know the drug my doctor was talking about was not Entocort---I used to take that. I'll write down the name when I talk to him on Tuesday.

I'm not sure exactly where my Crohn's disease is located---I think it is in the small intestines. As far as symptoms, I have pain in the middle of my abdomen and diarrhea and severe fatigue. The pain usually comes within a couple of hours after I eat and goes away with the diarrhea. Sometimes when I eat later in the day, the food just goes right through me, it doesn't even seem to digest. I have never noticed any food triggers. I am taking B12 and vitamin D supplements, but I'd like to do something more.

 

[Keepingfaith]

Welcome to the forum!

It sounds like your doctor wants to add an immunomodulator like 6MP/Methotrexate/Imuran etc. Hopefully, whatever it is, it will help kick the flare out of your system! Everyone is different, which I'm sure you know. Some people find a specific diet/Enteral Nutrition in combination with a mild maintenance drug keeps their disease under control & others have to rely on strong medications.

Either way, it is always a good idea to do some sort of exercise and add a multivitamin or other supplements. I've noticed B12 has helped my fatigue tremendously & the folic acid has slowed down my hair loss.

We are a very supportive forum & if you ever have a question, chances are, someone has an answer!

Take care!

 

[jeaneen]

Thanks Keepingfaith. I'm glad that I found this forum---I've been reading some of the posts and wikkis, and they are very helpful.