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Crohn's Disease Forum » Your Story » Diagnosed at age 44.


08-17-2015, 04:08 PM   #1
AZhearts
 
Join Date: Aug 2015
Location: Mesa, Arizona
Diagnosed at age 44.

My first indication that I had a GI problem happened after eating a meal at a Chinese restaurant. It was sweet and sour chicken with rice and egg drop soup. Something I have eaten many times before. But this time I had abdominal pain and severe bloating. My belly bloated like I was pregnant and it wouldn't pass. I thought I had food poisoning but with no diarrhea or vomiting. I also had non specific intermittant pain. I would feel it in different areas of my abdomen not in one place all the time. I suffered with that for 3 months before seeing my PCP because it gradually got better. He did a panel of tests looking for Celiac disease and gallbladder problems. Finally after an abdominal CT the finding came back Irritable Bowel Syndrome. I still continued to have the pains and bloating. Unsatisfied with the diagnosis, I thought I better see a specialist. He sent me to have another CT with contrast. It showed constriction of the distal ileum causing gas to back up into the small intestine characteristic of Crohn's disease. I found my answer. Not great to hear I have a chronic disease that has no cure and could get worse in the future. My doctor put me on Pentasa which didn't help much. After a colonoscopy, he put me on Budesonide also which helped me a lot and made me feel normal. I went off the Budesonide for 4 months and had a bad flare. Now I am back on the Budesonide and still on Pentasa. I haven't been able to get back to feeling normal on the Budesonide. My doctor keeps wanting to put me on Humira. I keep resisting because of the side effects. I have read about other drugs used with fewer side effects like low dose naltrexone and a trial drug called mongersen. Is anyone familiar with these drugs? I would like to know about people's experience with Humira and other TNF blockers. I really don't want to have surgery either.
08-17-2015, 07:34 PM   #2
Sue-2009
Senior Member
 
Join Date: Nov 2009
Location: Michigan
I have had decent results on humira for about a year. I'm having some issues now. Not sure if it's from humira or not. Good luck! I'm sorry to hear your in our club.
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Current Meds: Humira, Mercaptorine, Allopurinol, vitamins
08-17-2015, 08:04 PM   #3
AZhearts
 
Join Date: Aug 2015
Location: Mesa, Arizona
Thanks Sue for your feedback. I also take a probiotic, multivitamin, fish oil, multienzyme, and an herbal antiinflammatory that contains turmuric,ginger etc.
08-17-2015, 08:15 PM   #4
Madhu
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Join Date: Jul 2015
Location: New Jersey

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My husband is on Remicade and it works wonders for him. Initially he was on Apriso with a normal GI. It brought his symptoms down but gave a nasty flare 3 months later, just like you. When we met a specialist we realized the disease is very severe and so he was started on Remicade. He hasn't had much side effects with it and has been feeling better right from day 3 of the first infusion (Fingers crossed). I hope you overlook the side effects and agree to Humira or Remicade because from what our GI told us, the good effects that the medicine brings to our body is huge that you wont even notice side effects. It is also my personal opinion. Feel better soon
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Hubby dx with Crohn's in Feb 2015, in remission from Feb 2016 to Feb 2017.
2 anal fistulas (setons placed in June 2015 and removed in Feb 2016)

Mild flare in Mar 2017. Remicade schedule adjusted

Current Meds - Remicade 10mg/kg
08-17-2015, 08:21 PM   #5
Ian_H
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Join Date: Aug 2012
Location: Charleston, South Carolina

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Sorry about your diagnoses. I just started remicade, a TNF blocker a few weeks ago. So far so good. If you chronic flares I would try the biologics. Chronic inflammation is going to be worse than the side effects of any biologic. If you can keep your flares minimal then you could always hold off on humira. Good luck!
08-17-2015, 11:05 PM   #6
AZhearts
 
Join Date: Aug 2015
Location: Mesa, Arizona
Thank you for the responses. This is just what I need is to talk to other people with the disease. I was in denial about having it until this first flare up off of the budesonide. It just seemed to come out of nowhere like an acute gallbladder attack with vomiting and diarrhea and abdominal pain. I never had the frequent bathroom visits like other crohn's. I was always on the constipated side.
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