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Crohn's Disease Forum » Your Story » 30 years before we finally figured it out.


05-08-2017, 02:26 PM   #1
Asra
 
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30 years before we finally figured it out.

Hello everyone!

I uh...I don't really know what to say or start with here. I guess a proper introduction, as if I were the new kid in school, right?

My name is Asra. Pronounced Az-ruh. I have two furbabies and I'm an artist. I dabble in many types of art but my most commonly-produced works are paintings. I do custom portraits for people. Um...what else? I am a bibliophile and I jog every day...or, I used to, before the diagnosis. I'm up to every-other-day now- but soon I'll be back to every day running.

I suppose...get to the reason we're all here- our medical journeys.

I'm 31 and was only diagnosed in November. I am an atypical presenter both in disease symptoms and in response/side-effects. My GI says I'm "a playground," haha...

I have Crohn's. Elitis, which I understand to be rare. Also, rather than having frequent diarrhea I had the completely opposite problem- chronic and consistent constipation. I was very fortunate to, in an attempt to make myself healthy (by eating whole wheat and raw) I actually made myself as sick as I could have- I ended up having exacerbated ulcerations in clusters and bled out. The result was my passing out on stairs at university and being found by a student. They fixed me up and then completed upper and lower endoscopic explorations. They were not sure of my small intestine's condition so I ended up doing a pill-cam, which showed no cancer, polyps, or anything, so yay!

I was put on a schedule of corticosteroids- 9 mg daily of budesonide and was on this set for six months. My original GI quit her practice with my hospital and I was in GI-Limbo for a bit. It worked out ok though since I was moving to Chicago and would be soon registered at Northwestern. I had plans to be placed in Dr. Hanauer's care. I didn't get him, but I was placed (without requesting, so this was LUCKY) with his protege and she's amazing. <3

Dr. B weaned me off of the bud after I developed a mild case of Cushing's and I'm now entirely on vedolizumab- every two months I get an I.V. My brain hasn't completely come back, not sure why, but I am hopeful I'll be my old self soon. This is another way I was an atypical presenter: After starting on vedolizumab all of my hair fell out. Now when I say this, I do not mean that it thinned. I mean it literally all fell out.

I called my GI and she said she promised I wouldn't go bald, but I did, lol. Hair loss hasn't been in any of the literature for vedolizumab and apparently I'm the only one who has presented with this, so there were extensive tests done. The docs still don't agree on the cause, but I don't have scarring, alopecic circles or anything of the sort that indicates it will be an ongoing issue. Some docs say my body went into shock and shed all my hair at once, others think I'm the first presenter on vedo that had a side effect of hair loss. *shrug* It doesn't really matter since it's over and done, but I thought I should say something. If this has happened to you, you are not the only one! If I, improbably, happen to be the only one, I am ok with that. I will admit though, I hope it grows back fast. I had four feet of hair. I kind of miss it, haha.

Um...I think that's everything. I only found this forum because I was using Google to search "I feel nauseous and tired after my vedolizumab infusions" and it led me here to Zacofalltrades' post, haha.

Anyway, that is my story. <3
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05-08-2017, 03:01 PM   #2
ronroush7
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Welcome to the forum. Come in here anytime.
05-08-2017, 11:53 PM   #3
Justanothercp
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Welcome Asra. Sorry you have been going through it. What is your current diet?
05-09-2017, 01:18 PM   #4
Asra
 
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Welcome Asra. Sorry you have been going through it. What is your current diet?

Thanks! I am on a gluten free set up, but I'm not Celiac genetically so I can slowly reintroduce gluten if I wish...not sure about that just yet. When I tried to make myself feel better, I went whole-wheat only and all raw veggies and fruits. After treatment started I was on a strict "plain" diet- egg whites, broth or other liquid things= basically it haha. Now I still stay with gluten free'ish stuff and I'm slowly introducing more raw veggies back into my system, but for the most part they are cooked. I'm an extremely healthy eater, always have been, so sugars, processed foods, soda, etc- not a problem for me.
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