My Road to Crohn’s Diagnosis

I am doing great right now since started the remicade.

Hi, my name is Aimee and I have got so much good information from this site that I felt it was my duty to share my story with others. I am a healthcare provider and 43 years old, married and mother of three.I have had a long history (15+ years) of joint pain and inflammatory processes including my ankles, knees sacroiliac joint, sternum TMJ, elbow. …I went over a couple of different diagnosis from migratory arthritis to ankylosing spondilitis. I gave up starch in 2009 in an effort to control my symptoms while avoiding medications. I did great until late 2011 when I had a nasty flare up that put me out of commission for weeks. I had difficulty walking with all my swollen joints, and by swollen I mean huge, hot ,red and VERY painful. I could not even take a shower and change without help. I slept (if you can call that sleeping…) on a recliner for weeks and weeks. The fatigue was absolutely terrible, out of breath, tired, sleepy. I ended up with crutches and on very high doses of antiinflamatories. Nothing helped until I was put on prednisone. Started at 40mg and slowly tapered down. All this time, I had a lot of mucus and bleeding in my stools but I assumed it was from the anti-inflammatories and kind of put up with it. It slowly resolved. However, not completely as the fatigue remained and even though I could function, my joints never went back to normal.In January 2012, only a few months later, the symptoms returned with fury!!! I changed doctors from one @ John Hopkins to a local one as traveling was impossible due to the severe pain. Went to a rheumatologist initially and was referred to a gastroenterologist. The bloody stools were a lot worse and now I had severe abdominal pain and everything I ate came right out!!! Both my ankles, one knee, one elbow and one toe got swollen. I was unable to open my mouth due to TMJ inflammation and my hips were killing me!!! Being in such horrible pain and having the urge to go all the time was not fun. I am embarrassed to say that more than once I did not make it in time. I had to go sometimes 6 times in the middle of the night. My new Dr. felt like he had to “dig deeper” so we went for it. I immediately felt in better hands despite having been going to an institution with top notch reputation. I had been treated symptomatically only. Endless labs, endoscopy, scans, colonoscopy….diagnosis: Crohn’s!!! My colon was found to be very ulcerated, nearly perforated. It’s ironic that my joints were my initial symptoms…very misleading!I started remicade and I admit scared to death too….I had fought with Dr.s for years over going on long term meds. Have always been very concerned about the side effects. I was told that I would start feeling better after my second or third infusion. After my first, 80% of my symptoms resolved overnight!!! I recently had my third and I have regained my life. I decided to go for it with a good attitude. I have to be able to take care of my family, my patients and have a good quality of life. I pray that my symptoms will remain under control.

Prednisone always got me out of a flare up. Currently am on remicade and taking vitamins only.
I take AMP Floracel which is natural but has been great for my gastro symptoms. For a while when I was very sick took double dose (18 pills/day) and then went on the maintenance dose. I ran out of them for a week or so and started getting GI symptoms again (loose stools and a lot of bloating) so went back to my maintenance dose. Plan to stay on it !!!
no other meds

submitted in the Colitis Venting Area