Crohns Sucks

[Abby]

I've been sick, and getting sicker by the day for the last 8 years. With about a months remission when I first started Remicade, I have forgotten how it feels to be healthy. Constant diharrea that keeps me up all the time. TWO abscesses, one right on the sphincter, one makes it feel like my bum is being cut up. The abscess is so much pain. It never gets a rest because of the constant BMs. Better yet while all this was happening I got a cold sore, canker sores are beating up my mouth, and My iron has gotten so low, I'm missing periods again. (which scares the crap out of me). I've living off practically no food, I'm so scared of what it will do to me. I mostly eat Ensure meal replacements. Since I'm on antibiotics I cant eat yoghurt and I'm so nauseated all the time.
I was supposed to start volunteering today, and I'm getting worse and worse I'm not sure if I can handle that many hours away from home.
Morphine numbs my pain at best and does nothing to stop me intestinal pains.
I have run out of options. 5-asa didn't work, methotrexate made me worse, prednisone made me worse, Couldn't stay on beudeconide for long, Remicade stopped working, Humira never worked.
Medicine hates me, food hates me. My sister lives the healthiest lifestyle ever and she is still getting sick. It makes me think that nothing I can do to change my lifestlye will help. I quit smoking, I dont drink, I dont drink pop, I'm trying to eat well, no fast food, no junk. Still I have gotten worse.
It is taking it's toll on my relationship, as well as my mental health. I feel like I am losing all rationality the more sleep I lose.
My family tries to support me, but I dont know what they can do to help me.
I am only ever comfortable laying on my right side, and it's hurting my back, along with my constant pushing on the toilet.
And my friends wonder why I dont want to come out...

I've tried so hard for so long not to let crohns take over my life, and looking around ... IT HAS taken over my life. Crohns is the only part of my life.
People wonder why I am negative, but there is nothing to be positive about. :-(

I'm just so TIRED AND FRUSTRUATED! I don't know what my next step is going to be and I dont want surgery. I'm so afraid to have to live with a bag for the rest of my life and still have no gaurentee I wont get sick again!

 

[Destiny]

Oh dear Abby, you described this so well and you are not alone I feel exactly the same how you mentioned it,it's horrible disease but we have got it so we have to deal with it with patience , I feel exactly the same when people tell me I'm negativ but it never end that's why we feel this way ,today I found out that I have another fistula , my bum is on fire right now but I've got hot water bottle on it to ease the pain,I didn't eat yesterday fearing to have BM and just that seton alone hanging from the back can make you feel down ,but abby there is nothing we can do but just keep calm and be patient and know that everything has got an end no matter what.i really feel for you cuz I'm the same . courage abby

 

[SarahBear]

I'm so sorry Abby.

It seems like you're really running out of options. Have you tried any diets? Some forum members have been in similar situations as you and found remission with the help of a diet. Have you checked out the Diet, Fitness, and Supplements forum?

What has your doctor mentioned as a possible next step? Are they just leaning towards surgery now?

I'm very sorry you have to deal with all this, but we're here to help in any way we can! Please keep us updated!

 

[KWalker]

Aww, I'm sorry Abby This may seem stupid but results can actually be surprising. Have you/your doctor considered a short period of prednisone just to see if it helps? It's fast acting, and I believe if the dose is low enough you won't get some of the side effects

 

[Abby]

I was about to start the SCD diet, but now I am so afraid that my BM's will get solid I haven't started yet. I've done all the elimination/canada food guide healthy/non specific different diets.
Prednisone made me SO sick the last time I tried it. I'm scared to try that again.

My doctors are leaning towards medical trials or surgery. But for medical trials - I dont know why if medication that does help people will work if Meds that aren't approved for Crohns would work.

 

[KWalker]

You would think that's an obvious question but the government and fda are more than flawed when it comes to that. I can't get coverage for ldn (which is proven to work) because the fda doesn't recognize it or approve it for crohns.

What kind of clinical trials are they talking about? I know many people are hesitant to try trial medicine but I know, especially today they go through so many tests in Canada before they get tried on humans.