Share Facebook
Crohn's Disease Forum » Your Story » So it's all about me ...


07-12-2014, 03:31 AM   #1
mindiemonster
 
mindiemonster's Avatar
 
Join Date: Jul 2014
Location: Oregon
So it's all about me ...

Weird. lol My story. As I said in another thread, I'm pretty sure I've had crohns since I was 8 - that's when I got tired and stopped playing. I've always been one of those people who had regular bought's of diarrhea and stomach flus and I had regular stomach pain. That said, my mom said I was making it up to get out of school so I convinced myself it was in my head, and stopped complaining.

Fast forward to my first child. My sleepiness and exhaustion got way worse, but they said it was post-partum depression. I didn't mention the blood I saw occasionally, as it was normal - my mom always said the blood in my stool was from hemorrhoids. I got pregnant again, and the blood went from a little to a lot - but there were not tests they could run while I was pregnant. I had my second daughter and for a brief period of time I felt normal. Then I got the flu - no big deal, I thought. I climbed into bed and told my husband I'd be up in a day or two. Yeah ... or not. A week later, he took me to the doctor as I was so weak I could barely walk. I told her I was filling up the toilet four or five times a day with blood. She said it was hemorrhoids, sent me home and said if I wasn't better in a week to come back. A week later I was back, but now my husband pushed me in in a wheel chair. Same diagnosis. To cut this short, five visits later - all in the course of a month - I'd lost 50 lbs and couldn't walk anymore. My hair was falling out in lumps and I slept all the time. My idiot doctor FINALLY gave me a referral to a GI - grudgingly, as she was pretty sure I was making it up, too. (HOW DO YOU MAKE UP A SUDDEN FIFTY POUND WEIGHT LOSS?)

I saw the GI the next week, he said he was pretty sure he knew what was wrong and scheduled me for a colonoscopy the next day. He was able to get about halfway up before he couldn't go any further, but my entire colon was ulcerated and I had a raging infection. He prescribed me antibiotics and put me on imuran, but my insurance wouldn't pay for him anymore, so I was sent back to the idiot doctor who proceeded to try and finish killing me. She hadn't done her job - I was too sick to get a colonoscopy and I nearly bled to death from it. Two weeks later, I made her check my blood volume - and she had quite a snit about that. Four hours later, I was admitted to the hospital where they started replacing all the blood I'd lost. I was also put on prednisone and taken off the imuran - I was too sick for imuran, it was also killing me as it wouldn't allow me to heal. The good news is my insurance cleared me to be allowed to see my GI any darn time I wanted to. Jerks. Oh, and moron doctor said that the reason she didn't think I had crohns is because I'm fat. She's lucky I'm not the suing kind.

So since then I've been on large amounts of prednisone several times (I don't remember how many times) for time periods of anywhere between three months and 18 months. You should see how fat I am now! Prednisone - Satan's tick tacs. I've been in imuran, Remicade, and asacol and now I'm on cimzia as nothing else works for me. I have a new auto-immune disorder added on a regular basis (I think I'm up to five auto-immune disorders) and two problems that are 'genetic'. Several of them (like the iritis) can be tied to the crohns and some (like the Ankylosing spondylitis and the diabetes) can't, which I think frustrates my doctors - they'd like to tie everything to the crohns it makes their lives easier. I haven't had any surgeries, yet, as they wouldn't be able to remove just a piece, but they'd have to remove the whole thing. That said, I'm told it's just a matter of time until they're going to have to remove the whole thing anyway. (And, on another matter, my GYN says it's only a matter of time before they have to take my uterus. Who needs internal organs? ) Recently, they found precancerous cells, so now I have to have colonoscopies every six months. Which is fun as the normal meds they give to put you under don't work on my anymore, so they have to completely sedate me for the test.

Um, I think that's the main points of my story. Of course, there is more. Little details, like having another child because no one warned me the pill doesn't work on crohnies (tubes tied now) and hospital visits and stuff like that, but I think I got the high points. Nice to meet y'all and thanks for listening to my rant!
07-12-2014, 07:56 AM   #2
Clash
Forum Monitor
 
Clash's Avatar
 
Join Date: Apr 2012
Location: Georgia

My Support Groups:
Welcome to the forum! So sorry to hear of all you have gone through. My son has EIMs(extra intestinal manifestations) of his CD, his eyes- episcleritis(not as serious as iritis) and AS. AS is associated with Crohns Disease. Here is a journal article excerpt:

AS occurs in 3–12% of patients with IBD.
It is a great national institute of health article on the EIMs of IBD. Here is the link:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3127025/
__________________
Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
07-12-2014, 11:30 AM   #3
mindiemonster
 
mindiemonster's Avatar
 
Join Date: Jul 2014
Location: Oregon
Welcome to the forum! So sorry to hear of all you have gone through. My son has EIMs(extra intestinal manifestations) of his CD, his eyes- episcleritis(not as serious as iritis) and AS. AS is associated with Crohns Disease. Here is a journal article excerpt:



It is a great national institute of health article on the EIMs of IBD. Here is the link:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3127025/
Actually, I knew that, but the AS came first. Well, it was diagnosed first (when I was in my teens), so I don't really consider it a symptom of the crohns. I guess that doesn't mean it isn't. For me, the AS just is. I've got severe scoliosis, and it hurts me more than it 'should', so they went looking for other reasons for the pain I was in.
07-12-2014, 12:22 PM   #4
Clash
Forum Monitor
 
Clash's Avatar
 
Join Date: Apr 2012
Location: Georgia

My Support Groups:
I still wouldn't discount it, the dxes often go hand in hand no matter which shows up first:

Based on several small studies, 10–30% of patients with arthritis related to IBD will have arthritic symptoms prior to IBD diagnosis.
And...

As previously mentioned, peripheral or axial articular involvement can precede, be synchronous with, or develop following the diagnosis of IBD, often by as many as 10 years. IBD-related arthropathy is part of a subset of diseases broadly termed “seronegative spondy-loarthropathies.”
I hope you are able to find some relief soon and a long lasting remission!
07-13-2014, 01:19 AM   #5
mindiemonster
 
mindiemonster's Avatar
 
Join Date: Jul 2014
Location: Oregon
I still wouldn't discount it, the dxes often go hand in hand no matter which shows up first:



And...



I hope you are able to find some relief soon and a long lasting remission!
Thank you. Me, too. lol
Reply

Crohn's Disease Forum » Your Story » So it's all about me ...
Thread Tools


All times are GMT -5. The time now is 05:31 PM.
Copyright 2006-2017 Crohnsforum.com