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Need something

Just diagnosed. Crohns of the small bowel. I'm scared to death. Mostly about the immune suppressing meds. I already have had a bout with MRSA before being diagnosed. I need some reasurance.
 
Welcome to the forum. So sorry to hear that you have been diagnosed but you have come to the right place for support. There are some wonderfully compassionate and very knowledgeable members around here.

What medications is your GI suggesting you start with? Did they put you steroids to get your initial flare under control? Usually the maintenance meds(immunosuppressants-6MP, Imuran or MTX or a biologic-Remicade, Humira or Cimzia) is started while you are tapering off the prednisone.

My son went straight to Remicade after his diagnosis and has since shortened his schedule, upped his dose and added MTX(methotrexate). He has been on Remicade since May of last year and MTX since October of last year with a short break over the summer of the MTX.

He seems to be doing pretty good right now, though I'm not sure we are quite at deep, stable remission but he doesn't have any pain, his bms are normal and he is acting like a normal teenager. I was scared of the meds at first as well, but to see the change in him after the first dose of Remicade was just astounding, a definite 180. But after the loading doses of Remicade he couldn't seem to make it the full 8 weeks before symptoms would start creeping in, hence the tweaks in schedule, dosage and adding MTX.

What are your specific concerns about the immunosuppressants? You could make a list of your concerns and questions and go over them with your GI before making your decision.

Also there is a Treatment forum here you may want to browse through as it may answer some of your questions or allay some of your fears.

I hope you find some comfort soon and feel free to ask any questions you may have.
 
I've been on biologics (immune supressing drugs) for well over 10 years and I SWEAR that I am less suseptible to infections. I have been sick far less than my family and co-workers.

It doesn't make sense, but it is what my gut tells me. (pun not intended-LOL)
 
Hi! Sorry you have to join the community, but it seriously is such a great place here. For all the times I have been on different biologics, I think my immune system was almost better. I hardly ever got colds, the flu, or infections. When I am off of them is when I notice my crappy immune system.
 

nogutsnoglory

Moderator
I know they are scary but keep in mind that the most dangerous drug in the world and most abused drug is Tylenol. They list every possible side effect to prevent lawsuits but most of these things don't happen atleast not the major scary ones.

These meds might change your life for the better.
 
Welcome to club no one wants to be in!don,t stress about the meds,try to avoid the leaflets in the box as noguts said the majority don,t have any probs and no doubt you,ll get regular blood tests which will pick up anything going astray.
The forum is really good for diet,food and exercise advice and for a rant when required but try to take your doctors advice but don,t be afraid to challenge/ask them if your not sure.good luck
 
Thank you all for your replies. It does help not to be in this alone. I don't know what they are going to put me on yet. But they are throwing around the immune suppressing drug words. I suppose that I really don't have a choice. The one thing my GP said (Not the gastro Dr) was not to go on prednisone. Anyone out there have any experiance with that?
MY Crohns presents in my small bowel. So far I don't have diarrhea in fact I'm usually plugged up. My pain isn't constant. I only have real pain 4 or 5 times a week and the longest bout is usually about 30 minutes. My main discomfort is nausea and excess saliva backing up into my throat to the point that it chokes me or I inhale it. Anyone like me. I'm reading about so many of you that are in constant agony and I only have that usually when I eat something that doesn't agree with me. Am I just in the early stages or what?
 
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It's an annoying condition with lots of variation on how bad,what triggers it off,foods that are good or bad afraid to say its a learning curve some foods are generally bad greasy/fried raw veggies and salads if you like veggies and we all do make soup veggies well cooked and or blended.exercise helps don,t know why just does,alcohol wise be careful,smoking is a no no.but above all remember it gets better and with a few diet lifestyle adjustments and help from your doctors it gets better.good luck
 
Prednisone is BAD. Dont do it! I've heard that it works but the side effects are absolutely horrible and it should only be used short term to get a flare under control.
 
The one thing my GP said (Not the gastro Dr) was not to go on prednisone. Anyone out there have any experiance with that?
I think the easier question is who here hasn't been on prednisone at some point. :tongue:

It is often given during flares or early in the treatment to get things under control. And it can be very effective for that (was for me). The problem is the long term side effects can be very bad.

There is an entire group /sub-forum here devoted to prednisone. You'll find lots of info.

Good luck.
 
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