How do you handle it? I'm scared

[Yurhunny2]

Hello to all-
First let me say i'm very luckly 2 have stumbled across this board. I really hope you guys can help me out here.. My boyfriend was diagnoised w/Crohns January of 2006. After a 40lbs weight loss i finally convinced him (and his wacko mom!) that he needed to see a speicalist they did the full work up and diagnoised him w/moderate to severe crohns. So they started him on medication and it worked really well.

Fast foward...
January 2007 the Nurse Practioner at the Gastro place he goes decides to decrease his steriods because they dont want him to be on heavy doses for his whole life. (he just turned 21 BTW) Well once they decrease his steriods he relapses.. full blown episode. So they immediately put him back up to his regular dose, which allowed it to subside slighty, but he hasn't been right since. So 2.5 weeks ago they switch him onto a new medicine replacing his Asacol. Once again he started going down hill.. so... they put him back on his regular Asacol dose again.:eek2: So today i get a phone call at work saying he is really really sick, blood, cramps, whole gammit and he's going home from work.

Besides my venting of stress here... How do you handle all of these changes he is going through. I know a bit about chronic diseases, i've been a type I diabetic for 22 years.. But i feel like this is going to be a never ending battle of ups and downs.. Then he gets depressed and hate himself and this disease. The doctors are talking about using Humira, but after reading all of this stuff about Remicade and Surgery i'm just scarred.

Can you guys give me any advice, insight, thoughts? Thanks!! And i'm sorry this is soo long..

 

[Cara Fusinato]

Hey, you are right, it is a never-ending war with battles sometimes coming close together and sometimes coming far apart. The big thing is for the doctors to get him stable right now. You can't stop and start some of those meds. That causes some real dangerous issues. If you are able to be there with he and his mom, help ask intelligent questions and help them listen to the answers. Hopefully they get it straightened out soon.

It's OK to vent, that's part of why we are all here.

 

[Nancy Lee]

One thing for sure about this disease....you never know what's around the next corner.
It's an up and down roller coaster ride.

We have a saying...."The only thing predictable is the pain"

It's hard trying to plan things when you don't know how you will feel...
or go to work not knowing if you may have to leave.

Cara is so right..with her advice on the meds...
you cannot stop and start them on your own.
Always go by what the doctor says
and never just go off them when you feel like it.

Hopefully the doctor will get your boyfriend straightened around
and on the right meds soon.

Take care,
Hugs~Nancy

 

[Yurhunny2]

It was his doctors that made all the med changes!! Trust me.. i'm a HUGE advocate of doing what the doctor says. Heck i've been on insulin my whole life, and if i decided to stop taking it i'd be dead. Thanks guys for some insight.. I know it's a long road.. i'm so happy i found this place!

Amy

 

[tonya_n_ky]

I agree with Cameron on that one. Sometimes a hug and an I love you is the best medicine. I can feel awful and just snuggling on the couch is comfort to me and makes me feel better if only for a little while. Also, as he gets to know his Dr. and the Dr. gets to know him things will get a little easier. It may take time but he will learn his body and his limits and be able to tell things that's going on. Just stay by his side and let him know you're there for him.

 

[HostileJava]

I can tell you one of the things that really helps me through my flair ups is my family. I know it's tough for them when I don't feel good. I'm a stay at home dad during the day and I work part time at night. When dad doesn't feel good nothing gets done around the house. On top of the pain I feel completely useless cause I'm not contributing to the household in anyway when I'm sick. But they always take care of me and make me feel like I'm not a burden even though I know it can't be easy for any of them. My mother and mother in law will come over and help with the kids, my wife will pitch in and do extra chores and bring me food. Having family that is supportive makes things a lot easier.