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Crohn's Disease Forum » Your Story » Crohn's or Misdiagnosis?


07-21-2014, 05:30 PM   #1
p2mommy
 
Join Date: Jul 2014
Crohn's or Misdiagnosis?

My history hasn't been too pleasant for the last 5yrs.
-Had a tubal ligation that was apparently botched,, causing an abscess on my Fallopian tube that busted leaving a cantaloupe size puss mass in my abdomen. Doctors finally figured out what was wrong with me after numerous scans and 6months of confusion when I went in for emergency surgery.
-One year later, diagnosed with Cervical Cancer, within 2 months had a radical hysterectomy and have been 2yrs remission. At the time they said I had scar tissue on my bowels and removed it, obviously from the abscess infection? After this surgery I was admitted to the hospital for extreme pain in my bowels... they didn't know what it was but assumed it was a blockage.
-2 months after recovering from the hysterectomy, my BM's started becoming mostly blood and puss filled... after 6 months and getting worse, I went to the doctor. Colonoscopy was stopped because my sigmoid colon was extremely inflamed, and diagnosed with Crohns.

I didn't have any BM pain out of the ordinary... but more frequency. The sight of it was the most concerning. They put me on Pentessa which I had an extreme intolerance to. I told the doctor at that point that I have never tolerated Aspirin, makes me sick. She put me on Mezevant, hoping it was just the pill coating. Been on Mezevant for a year, and my symptoms got progressively worse, adding dizziness and disorientation and not much releif.. pain got so bad I couldn't move eat or sleep. Increased to 4g Mezevant and added 4g Salofalk. Eventually after a month I got better, but it was the lack of eating not the expensive medication.

I started to question the diagnosis... why am I getting worse with a diagnosis and meds... started researching Celiac and have been gluten free for 4 months... I started feeling better instantly, but not perfect. Then I noticed that Vegi's hurt me for a day... so I stopped them... feeling even better, but not perfect. So I said, these meds must be making me sick... slowly weaned off them and I am almost back to the same "just blood and puss, with minimal pain" as I was before the diagnosis and introduction of meds.

I am just starting to get really confused... is it Crohns, Celiac, or just an intolerance to a high fibre intake. I definately need to avoid Vegi's, and alot of pasta, so I am leaning towards the high fibre. But can the Doc's be wrong, after thousands of dollars and so much unnecessary pain? Crohn's is such an unknown subject, could the diagnosis be questionable also...or is there a sure test for it?
07-21-2014, 07:13 PM   #2
DJW
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Join Date: Jul 2013
Location: Ontario

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Hi and welcome. You've had a very rough go of it.

Were you diagnosed by a gastroenterollogist? A colonoscopy with biopsies is very good at diagnosing crohns. The fact that there is still blood and puss is concerning. Diet and such is good at helping with some of your symptoms. But with blood and puss inflammation is still present. This can cause damage as time passes. I strongly recommend you see the specialist or get a second opinion.
You still need treatment.

Sending you my support.
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07-22-2014, 06:39 AM   #3
krika
 
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Hi, welcome

Sounds like a second opinion is a good place to start and if it shows that you have crohns, then tell the GI that the meds didnt help you the way you wanted and to try other meds could be an idea.

Good luck
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