Crohn's Disease Forum » Your Story » Crohn's denial

04-02-2017, 10:57 PM   #1
Join Date: Apr 2017
Location: Calgary, Alberta
Crohn's denial

Hello. Grateful to have a forum to share my experiences and help others. Recently diagnosed with Crohn's disease of the terminal ileum. I was in emergency with symptoms of an allergic reaction when upon ultrasound it was discovered that there was severe inflammation in my small bowel. About 20cm of the terminal ileum. Folks, not gonna lie, I had virtually no discernible symptoms. My blood work was wonky too. Platelets were high, white blood cell count was high, b-12 levels were deficient, CRP elevated, ferritin levels elevated. Apparently, I should have been a complete mess. Apparently I was a mess because sometimes we don't know how sick we are. In my case, I'm an under reporter. Which to me means that I typically blame myself when I am under the weather ie. shouldn't have had that junk food or I might feel less bloated. Which leads to me never reporting or investigating symptoms with my family doc. Stupid. Dumb. Don't be like me.

After my colonoscopy revealed an inflamed ileum that couldn't be intubated, which I saw with my own groggy eyes...I realized I wouldn't be refusing the meds I had been told would help. I started entocort ec and am on a 4-month tapering dose of 9mg/6mg/3mg. I also began entyvio shortly thereafter. I will be off entocort in a little over a month and my last induction dose of entyvio is this week. I'm told that I should just be able to maintain every eight weeks after this week.

After the denial faded and reality set in, I realized that I needed to be on top of those factors of Crohn's disease which I can control. My nutrition and exercise. I have been on SCD for 30 days now. I feel good. I feel baby steps are in order. I want to be in med-free remission. That is my goal. I won't preach but I will loudly celebrate my own victories.

Sept 2016 - Incidental ultrasound found inflammation
December 2016 - colonoscopy verified Crohn's
January 2017 - began Entocort
February 2017 - began Entyvio
March 2017 - began eating only whole foods and strictly SCD (Specific Carbohydrate Diet)

No dairy
No wheat
No starch
No disaccharides
No polysaccharides

It's been emotional. I thought I was healthy. Now I see that I haven't been well for a while. The b-12 deficiency has probably been the most debilitating for me. I'm grateful to have had monthly shots for the past 3 mos. My body knows when I'm due and I run to the pharmacy. I have some side effects from the Entocort, like ringing in my ears, 5 lbs stubborn weight gain, runny nose, and sore elbows. The entyvio zaps my energy and strength and I'm definitely losing a lot of hair. Like, more than a little. No bald spots that I can see yet but I do see thinning. No one can lose this much hair without it eventually being a problem. I'm hoping it's just induction phase stuff that may taper off. Maybe it's from b-12 deficiency. Probably a bit of everything.

At least I feel in control of some things. If I do all I can, I'm off the hook. Let the docs do all the worrying. I'm too busy prepping food. It's never ending on SCD. Good thing I love to bake. I really do not feel as though I've been deprived on SCD. I'll have to post about my SCD adventures in detail on the proper thread later.

I'm happy to share and I hope I can help out any fellow IBD'ers who are looking for some kind of sense in all of this.

Last edited by Foodmama; 04-03-2017 at 11:01 AM.
04-03-2017, 04:11 AM   #2
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scottsma's Avatar
Join Date: Jan 2012
Location: Tynemouth, United Kingdom

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Thanks for your post.I'm glad you're taking crohns seriously now.I admire your attitude and I'm sure your post will be of help to a lot of people.I hope you continue to feel better.
04-03-2017, 05:59 AM   #3
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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Welcome. You have come to a good support group.
04-03-2017, 08:50 AM   #4
Join Date: Apr 2017
Location: Calgary, Alberta
Thank you scottsma, thank you ronroush7. It's great to be a part of the community.

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