Introducing myself. first post

[Jim86]

Hi everyone, my name is Jim I'm 27, have had Crohn's/Ulcerative Colitis since I was 13, my brother also has the same disease. So I have been dealing with this for more than half my life.

I was in remission mostly to the power of Remicade for about 10 years, until I was kicked off my family insurance plan when I turned 26. I was able to get the Remicade free, but the nurse fees just to administer the IV were just too high every 7 weeks so I had to stop getting it. From August 2013-February 2014 I lost about 60-70 lbs without the Remicade. I got very, very, very sick.

When I finally got healthcare through the Affordable Care Act, I saw my Dr. the day after my coverage was effective. He wanted to put me in the Emergency Room that night. We agreed I'd admit myself the next day, which I did and resulted in a 6-day stint in a local hospital. Many many tests and procedures, 2 units of blood, colonoscopy, endoscopy later, etc. I was discharged weighing about 110 lbs. I usually weigh about 165-175 or more.

Since my discharge however my weight has gone DOWN to 101, and my Dr. even wanted to put me back in the hospital, which I am not opposed to. I hate feeling like this and I just want to get better no matter what. My Dr. wants to see I can gain some weight and start to fight off the inflammation before I go back on Remicade as it is a very powerful drug.

I'm just frustrated with the lack of progress I'm making at home. I try to eat but I have little appetite, even on the Prednisone I'm currently on. It's almost a chore to eat but I know I have to in order to put on some lbs.

Anyways, glad to make this first post and I guess I'm just looking for any words of wisdom or advice anyone may have on their own journey with IBD.

Thanks for reading - Jim

 

[guest13]

stay strong

 

[Grumbletum]

Hey Jim
A big warm welcome to the forum - glad you found us. It sounds like you have been having a pretty hard time of it :-( Quite unusual too that you don't feel like eating much on the Pred. A lot of people, myself included, ate like a horse. Are you on a high dose?
I am just wondering if some of the liquid diet supplements, like Boost and Ensure might help until you get your appetite back? While in the hospital, I didn't have much appetite for a while after the surgery, and they gave me Fortisips which were pleasant and apparently quite nutritious.

 

[carrollco]

I second the liquid diet. It really helped me get through some bad times. When on Prednisone I had an appetite that scared me. Seriously. I am on Remicade and wish I hadn't fought the doc for so long. The stuff is a miracle.

 

[Jim86]

You know the liquid diet may be a big part of it. At the hospital they were feeding me everything in sight, even things I didn't ask for they brought! I had a steady supply of boost and ensure. I haven't had nearly as much since I've been home. Feeding yourself a constant supply of food all day by yourself is more of a chore then simply pressing a button and they bring you whatever you want at the hospital.

I will order some more Boost off Amazon right now! I think I'm down to my last 2. Thanks for the advice!

 

[nogutsnoglory]

Sorry to hear about it. I was in the same boat not too long ago but gained a lot of weight after starting Remicade and getting an ileostomy. It's really hard to gain weigh but I found dairy and carbs really helped me put it on.

 

[sickofcrohns]

Two words: peanut butter.