I'm so tired of going up and down between sick and healthy

[onebloodonelife]

I'm so tired. (A bit of background: I have Crohn's Disease, it's a chronic inflammatory disease of the intestines.) I've been to the doctor more times than I care to think about this year. Between follow ups with my GI, blood work, tests, etc. it's a lot. So, for the Nth time this year, my medications are starting to wear off before they are supposed to. I have a feeling that my GI is at the end of his rope with trying to treat me. I have to do more blood tests tomorrow that will come back just like all the ones before with no inflammation blah blah blah. Either way, I feel awful. I just want to feel like someone is up to bat for me with this disease because I don't think I'm up to it right now. I've got other things to worry about. I mean, don't get me wrong, my GI has been great through this with me, I know that I'm not a textbook easy case of Crohn's, but if my doctor isn't behind me, who will be?

I get an infusion (through an IV) every 8 weeks of a mouse protein called Remicade. But, each time I've tried to go the full 8 weeks, it wears off before it's supposed to, leaving me back where I started, sick and feeling all around awful. This time around my GI got me in about 10 days early for my infusion and now I feel fine, but I'm really just tired of the health roller coaster I'm on right now. I'm only 17 years old , but diagnosed at 16 and nobody should have to face a lifelong condition at any age, let alone at my age.

I just needed to vent.

 

[UberBeaver]

Sorry to hear that, man. Good luck, and stay strong.

 

[verte76]

It's unfortunate that you're having to deal with that crud. I hope your luck improves.

 

[martha]

Oh man. My mom has Crohn's but no where near as bad as you. She got it in her 50s, and I hear the later you get it, the better. She had a hunk of her intestine removed and it seemed to help.

I have nothing to say except I'm sorry you have such a hard time at such a young age.

 

[JanuaryStar]

Aww Cassie...

Although I already knew this, I didn't knew things were going this bad for you... If you ever feel the need to vent again, you know where to go, just send me a PM or something, I'll be there for you

Other than that, I have to go with what martha said... Nobody should encounter these problems at your age... Nobody should encounter these problems, period, but that's a whole different thing...

A huge hug for you

 

[onebloodonelife]

Thanks for responding everyone! I'm doing a bit better today...but we'll see how long it lasts.

Martha, your mom is lucky that she's been in remission since having some intestine removed. My grandma has Crohn's too (actually most of my family on my dad's side has intestinal issues...) and she's had her colon removed and has been in remission since.

I'm probably on the track to surgery, but I'm trying to avoid it right now. I think I read a statistic that 50-70% of all Crohn's patients who are diagnosed before they're 18 end up having surgery at some point.

Thanks again. for everyone

 

[Angela Harlem]

Do you keep abreast of every kind of development there is? I knew a lady with Crohn's once. She swore by alternative medicines in the end. She went the whole Eastern route. She was in total battle-mode when I knew/met her, and having a 10 year old son as a single mother made her that much more determined. I cant quite recall what exactly she was up to, I know she was continuing with her specialist and GP here, but she was not closing off any avenue. If anything, it might help you keep a postive outlook, knowing you are investigating every option you have access to.

Good luck.

 

[meegannie]

One of my friends has recently been diagnosed with colitis and has been in the hospital for the past week and a half (she'll hopefully be going back home today).

 

[VertigoGal]

I'm so sorry, that sounds incredibly frustrating. Hope you feel better.

 

[onebloodonelife]

Do you keep abreast of every kind of development there is? I knew a lady with Crohn's once. She swore by alternative medicines in the end. She went the whole Eastern route. She was in total battle-mode when I knew/met her, and having a 10 year old son as a single mother made her that much more determined. I cant quite recall what exactly she was up to, I know she was continuing with her specialist and GP here, but she was not closing off any avenue. If anything, it might help you keep a postive outlook, knowing you are investigating every option you have access to.

Good luck.

I'm a member of a forum for Crohn's and some of the people there swear by "natural" remedies...I'm a bit more skeptical I guess. I should check it out more though.

Although, my issue is more that my meds work, it's just that they wear off before they're supposed to. Luckily I see my GI on the 15th, and we're going to discuss the meds situation.

And, there's always new meds to try if one stops working all together. There's already 2 in the pipeline to be FDA approved later this year.


Thanks again to everyone who's responded!