My Story

[Polaris]

Hello

My name is Jessica, I'm 28, and I've recently been diagnosed with Crohn's in my ileum. (last week, actually). I've been suffering with abdominal pain for the past year on and off, with it becoming a daily struggle the past 8 months or so. In March I also had my gallbladder removed (it was below functioning levels, and inflamed). I was so happy to have that pain gone, only to still have this horrible, cramping, burning pain in my intestine.

My doctor is supposed to call today to discuss medications. I am against steroids at this point. I'm a nurse and have seen/am aware of the side effects, of Prednisone especially. I would like to manage this with as little medication as possible. Are there any others who manage their Crohn's without medication, and have been successful? I appreciate your suggestions.

 

[JDTM]

Hi Jess -- sorry about the diagnosis buddy, but hopefully you'll figure out a treatment plan that works for you and you'll start to feel better soon.

First off, there are definitely some horror stories with pred, but they work for people. If your inflammation is limited to the ileum, budesonide might be an option for you -- it's a much more localized medication, and there are much less side-effects than prednisone for sure. (As a nurse, you might already know this!) I had a rough start with budesonide, personally, but I think it was just psychological issues from dealing with my diagnosis; I'm taking budesonide now and I'm doing fine on it, no side-effects. The idea is to knock down the inflammation and then taper off, in order to minimize the chances of side-effects from taking a corticosteroid long-term.

Alternatively, enteral/elemental nutrition might be an option. It's difficult to stick to (it's basically liquid nutrition for an extended period of time), but it's shown to be just as effective as steroids for reducing inflammation from what I've heard. There's a subforum under the Treatment forum dedicated to elemental nutrition, so check it out if you're interested.

Diet is a tougher thing to address, as everyone's case of Crohn's is different, and different people seem to have different trigger foods. If you can manage your symptoms without medication, then great -- but try to keep an open mind and see what works for you! The medication I'm taking is on the lighter end of the spectrum, and I'm trying to use complementary medicine (supplements, vitamins, exercise, healthier diet... whatever works). I'm only a few months ahead of you, diagnosis-wise, so I'm still figuring stuff out as well! Hang in there, and welcome.

 

[Angrybird]

Hello Jessica and welcome to the forum. I agree that from what I have read here that if you want to try and induce remission without steroids then enteral nutrition is something to look into, a fair few people have seen a really good result with this. Alternatively you then have the lesser of the two evils - Budesonide, it is not ideal but my thinking is the quicker you get rid of the inflammation the less scarring it will be able to leave behind.

Please let us know on how things go, I will be keeping fingers crossed that you can be feeling better soon.

AB
xx

 

[skippy111]

Hi Jess,

Please keep us updated with your progress.

My inflamation was so bad that I was put on 60mg Pred and given the Cipro/Flagyl
I had to have surgery as well,

sure there are alternatives to the steroids but my weight was down to 153 in the hospital, my ideal weight is 180,

the prednizone helped me to get rid of the inflamation and here I am a month or so after discharge and my weight is up to 175.

My GI dr says I can start dropping the pred by 5mg/week..

I live in NJ so Medical M is an option to me down the road but first I want to get past the post op recovery stage, and wait till august after they have a look at the colon which they were unable to do in April..

Nutrition is important,
I make sure I get my Iron and Calcium daily, (creme of wheat)
Potassium, Vitamin D, Protien and sodium..

I have been really getting into which foods give the right nutients.. I guess with the prednizone figting the inflamation my body is absorbing the nutrients, when I get down to 20mg or 10mg, then we will see what happens..

I am being treated for Depression and ADHD also so I really have to be aware because the three of them all work together and can be very debilitating,

It is nice to have a nurse here

Welcome!!

 

[Polaris]

Thank you all for the support and suggestions.

My doctor wants to put me on Entocort for 2 months, and I've agreed. I know if I don't things could be so much worse.

 

[Angrybird]

Will be keeping fingers crossed this gets the tum sorted for you hun, pls keep us updated on how things go.

 

[Polaris]

Thanks, Angrybird