Just diagnosed (95% sure) but in denial

[surferbro]

I've never had diareah, stomach pains, or constipation that was out of the ordinary. The only symptoms i've had have been within the past 8 months. 3 anal fissures (they healed with nitroglycerin jelly), a perirectal abscess, which resulted in an anal fistula. Colonoscopy revealed inflamation of ileum... doctor says he's 95% sure i have chrons of the ileum. Now im on imuran, entocort, and canasa to close the fistula.

i started throwing up blood 3 days ago and had to go to emergency room... is taking these meds worth that, when i havent had diareah/stomach pains to begin with??

 

[D Bergy]

Welcome to the crappiest forum on the web. (Bad Crohn's Joke) very bad.

I have never heard of those medications causing those kind of problems, but I have never used them, or researched the side effects.

What does the doctor have to say about this? I think I would give him a call.

Dan

 

[AIjen]

I've never had the "classic" symptoms either. In fact, I wasn't even trying to get diagnosed. I read about all these people that go through years of trying to get a diagnosis (and some that have to fight to keep that diagnosis), and mine was found accidentally. All I was in for was a routine, every-five-year colonoscopy. In my first one they found inflammation in my ileum with scarring, but they weren't looking for that. THey were looking for the source of my upper abdominal pain and wanted to rule everything out. Turns out I needed and ERCP (they had to cut open a plugged bile duct). Anyway, during this next colonoscopy, they told me I had Crohn's. And I asked my hubby several times after that if the dr. really said that (those meds they use do a number on me.....). All of a sudden I found myself on Flagyl, Pentassa, and Prednisone and now I'm on Humira. How did this happen?!?!?! Humira is for people that have it pretty bad. I had no symptoms! I was always constipated from a child on and have always had abdominal pain, but nothing that bad. Most of my issue was rectal bleeding I figured was due to hemorrhoids and/or fissures. Every time I'd get down to 10mg of pred, I'd start bleeding again, so that's where the Humira comes in. I'm now almost finished with my Pred (FRIDAY!!!! Been on it since November .....ugh) and have really had no bleeding (except when the fissured REALLY itch and I can't take it anymore.....)

So anyway, I know how you feel. I've known since November and I think I'm still in denial. You're not alone there, I know that.

 

[terps02]

surferbro - I can relate! I haven't had any serious diareah or stomach problems either. Colonoscopy showed some inflamation (i had to scope because of family history and rectal bleeding). Small bowel series test and IBD markers blood work confirmed Crohn's.

Then came a fistula with lots of rectal pain. Two docs told me that a fistula automatically characterizes the Crohn's as "aggressive". Remicade is coming for me.

 

[My Butt Hurts]

Hey surferbro - welcome!
Never heard of the nitro jelly. Good tip.
Is the doc going to do anything else to try and change that 95% to 100%? Just wondering.
Welcome again.

 

[misscris]

Yah!!! People I relate too!! haha I see myself and my stories in each of the comments above. Yeah, even you MBH. Only cause you're a smart ass like me!

surferbro: not sure if you looked around on this forum at all, but I posted yesterday (I think it was yesterday) about this same thing. I was asking for opinions on whether medication was really needed. People gave me good advice, you might wantto go take a peek.

I really had no symptoms, still don't. I also never knew I had these issues and didn't go seeking a diagnosis either. so it's a little different to be on that end I think. When you have the problems and issues for years and years like a lot of people on this site have, then when you get an answer (diagnosis) it's almost a relief to know what's going on. But when you don't have any issues and then get told you have this disease, you just stop and say .. Really? You sure? I even asked my GI if they were 100% positive it was really Crohns. hehe He looked at me like I was nuts and just said yup. haha

Terps: I am now classified as "severe" as well because I had to have resection surgery. Doesn't make sense sometimes in my mind.

Welcome to the forum everybody.

 

[drew_wymore]

Unfortunately Crohns just isn't one size fits all. I was perfectly healthy and one day I suddenly had uncontrollable diarrhea and RLQ pain .. out of nowhere. I never saw it coming. It wasn't like there was some slow build up to it. I actually thought it was the flu for 3 months before I sought medical advice and attention. 4 months after I started seeing a doctor I ended up with a bowel obstruction, which according to my previous GI .. doesn't happen to normal people unless you swallowed legos haha =) So weird things can happen.

Welcome to the forum though. You've found the best group of people on the internet.

 

[Mazen]

Same here. I only had like flu like symptoms for about 3 months and then some painful craming. Suddenly I had lower right quadrant pain,fever and vomiting and I ended up in the emergency room. 10 days later (on pred and antibiotics), a CT scan, a colonoscopy and a small bowel follow through, I was diagnosed with Crohn's in the terminal ileum. I never had D also.....

 

[surferbro]

update

So Sunday night i was vomiting blood and had an endoscopy done the next day which revealed gastritis and biopsy showed stomach ulcers(probably where the blood came from?)... the doc told me to continue taking the imuran and endocort because she wanted "to make sure" it was a reaction to the medicine and not something else like a flair...

Thursday I took it again... 2 hours later I'm vomiting blood in the ER again.

Now the doctor says she has another treatment in mind...

Agghh I'm wondering if I should tell her that I wanna try my own natural remedy for a few months where I take a ton of fish oil and cooked veggies, etc, then have her do a colonoscopy again. Maybe the inflamed ilieum would magically be gone.

Should i trust her on another med? or try my own thing for a few months(especially since i don't really suffer from stomach pains/diareah anyway)?