Crohn's Disease Forum » Your Story » Currently in limbo

12-20-2017, 10:59 AM   #1
Join Date: May 2011
Currently in limbo

Good morning everyone! I joined this forum over 6 years ago, but don't believe I ever posted anything and haven't been an active visitor. Well, I'm back and thought I would share my Crohn's story/history as well as where I'm currently at with this wonderful disease.

Starting all the way back in elementary school I would have periodic "stomach attacks" that consisted of frequent bathroom visits, but not much more. My mom dealt with the same thing (she doesn't have Crohn's) so it was never addressed with a doctor.
In high school, a blood test found that I was anemic so I started taking iron supplements. When the iron supplements failed to get my levels back to normal, it started the ball rolling to figure out what was going on.
Fast forward to my freshman year of college, on my 2nd gastro doctor (the first was rude and basically told me there is no way I had Crohn's), and having undergone a bunch of tests that all came back negative, I finally get diagnosed in 1996/1997 by way of a colonoscopy which found small traces of the disease.
After 10 years of various combinations of Asacol, Entocort, Prednisone, and one terrible reaction to Imuran, I was still having lots of cramping and discomfort. I wasn't suffering tremendously, but I wasn't thriving either. At the recommendation of my doctor, I underwent another colonoscopy. Only this time it showed no sign of the disease! Knowing that couldn't be right, I went for another test - this time, a CT scan. Well, don't you know, my Crohn's wasn't gone, it was just hiding in the jejunum! That discovery resulted in my first (and currently only) surgery in early 2007.
The bowel resection surgery was successful and I was relatively symptom free for quite a while after that.
Over the past 1-2 years I have had a couple of episodes where it felt like food was "stuck" in my belly, but could usually chalk it up to a really big meal followed by inactivity or in one case eating too many hot cross buns. Side note: dried fruit and Crohn's do NOT mix!
Over that time, my doctor of more than 15 years retired, and I got a new doctor. So of course, he wanted to get up to speed and scheduled me for another colonoscopy. showed nothing. Unfortunately, the CT Scan, and MRI that followed were also inconclusive. So I plugged along for a bit, not getting better, but not getting worse, until September of this year.
One morning, I woke and didn't feel right so headed to the bathroom. Almost immediately, I knew this was different when I started to feel nauseous. After vomiting (once), having tarry, black stool for a few days, feeling light headed whenever I wasn't lying down, and just generally feel like [email protected]%, my doctor figured I must have had some internal bleeding.
The CT scan and MRI once again came back normal (thankfully I didn't have to have another colonoscopy), but an upper endoscopy found a stricture in my duodenum. The stricture was stretched out during that procedure and I have felt SO much better since then, but now I'm left in limbo with unanswered questions.

Was the stricture in my duodenum the only source of my discomfort?
Why do I still have occasional symptoms if everything is clear?
Will I ever be able to eat hot cross buns again?

I'm currently on 75mg of 6MP and have been for some time. My current condition can only be described as failure to thrive as my disease doesn't explicitly prevent me from doing anything, but it does limit my diet and like all chronic illness sufferers, I get easily fatigued.

Thanks for reading and stay strong!
12-20-2017, 11:26 AM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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Welcome. I am sorry that you are still having discomfort. Maybe you should ask your doctor about further testing. Everyone is different. Some people when they are in remission can eat anything. I hope you feel better soon.
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.

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