My story

Hi, my name is Dede and I am 44 years old from Columbia, IL. I was officially diagnosed with Crohn's in 2006 after a long and horrible ordeal that lasted for 2 years. My symptoms started with the not so frequent massive stool attacks. I didn't think much about it thinking it was something I ate. My husband and I were at a local restaurant one night and I suddenly felt ill. I excused myself and went to the bathroom and passed alot of blood. After what seemed like 3 hours I returned to the dining room and told my husband we needed to go home not telling him what happened. The next morning I was in severe pain and still passing blood. We went to the ER and by this time, my blood count was too low and I needed blood. They did a colonoscopy and I was told that I had colitis. Now, I already suffered from chronic pancreatitis (which is awful), but I thought ok, I can deal with this. After steroids, we thought I was healed, until it all happened again about 2 months later. Another colonoscopy- same diagnosis, but I was told it was more severe this time. When I wasn't passing blood, I knew that what I was passing was not normal. I decided to switch doctors and he took my complete history which includes: Pancreatitis, Biliary Stenosis, Psoriasis, Atrial Fibrilation, and Pseudotumor Cerebri (Intracranial Hypertension). He was sure that I had Crohn's and immediately ordered another colonoscopy. I was diagnosed after the colonoscopy and then I swallowed the camera. It reconfirmed the diagnosis. I started Remicade immediately along with 1200 mg of Asacol three times daily. I was told that I needed to have part of my intestines removed, but that scared me and I wanted to try medications. He also suggested that I see a Rheumatologist because he was sure I was suffering from an autoimmune disorder with my whole history. Well I did, and I got yet another diagnosis - Systemic Lupus. Now this is alot to handle. In 2006 I spent 35 weeks in the hospital. I was so bad I really did not think I was going to make it. However I did and thought I was on the right track. In 2007 by July I had been in the hospital13 times, and I actually coded on July 21, 2007. I guess it still was not my time because after 52 minutes I started to breath on my own again. Now while all this was going on between 2005 and 2007 I had been stented 13 times in my main biliary duct for the stenosis. I was so angry with my GI because it just seemed like he should be able to fix something!! My GP doctor ordered a surgical consult in November while I was in the hospital. A hepatic/biliary surgeon seen me and told me he could help at least my stenosis problem, and possible some of the crohn's. I was so excited. November 20th, I had part of my liver, entire biliary tree and part of my pancreas, and several feet of my small intestines removed. Along with the recession, the rest of my liver was attached directly into my small intestine, and the rest of my pancreas was attached to another part. It has taken 4 months for recovery, but at least part of me is working better. I am now starting to have more crohn's flares and that scares me. I now am on high doses of methotrexate, the remicade wasn't working very well, so we will see. Sorry this is so long, but I never knew how therapeutic it could be to vent. Thanks!!:yrolleyes:
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I think that's southern Illinois, yes? I'm in somewhere between Chicago and Rockford myself, nice to meet you.

Wow, you've gone through much more than myself, you've hung in there well. I couldn't have taken all that and been calm enough to type it out....ever. Hope things finally get under control and you can stay out of the hospital. It seems the first time before things came back again 2 months later, after the first colitis diagnosis, they'd have realized chances are whatever you have isn't just going to "go away"...

What a mess! I'm sorry for your ordeal and glad that you have made it through all that you have. I hope that your family has stuck by you through all of this. You are still very young and that factor will be on your side if you need to face more flares in the future.
This Forum rocks; I think you'll agree!

Hope we can help you or at the least hear you

Thank you so much! Yes, my family has stuck by my side. I will not lie, it did require some counseling for my husband and myself. I had some serious guilt issues over the financial strain since I have not been able to work since 2005. I've learned how important it is to really say whats on your mind. He had to learn also how to rephrase some of his feeling too. My biggest regret is not following my gut and standing up to the first doctor. I knew that something more serious was wrong, so for anyone out there who feels like they get the brush off from their dr., there are good ones out there! and to BWS2983 yes, I am about 13 miles from St. Louis. Love Chicago though, my daughter and her husband live downtown. Thanks to all!!

hi & welcome dede

so many thoughts crossed my mind as i read your post - first of all, i am so pleased you have such a determined body and strength of mind to have got through all this. we have discussed elsewhere on this forum the fact that many crohns sufferers have this inner strength to keep going, keep trying to get back up everytime we're knocked down....

you really have been to the brink and back - i hope all that is well behind you now, and you can look forward to an more uneventful future health.

you're absolutely spot on about speaking out if you suspect the doctors have missed something or not taken some symptom seriously enough.. i have also lived to tell the tale of this kind of neglect, more than once.

and yes.. talking about it really does help - and this forum is brilliant. i'm really glad you found us