Crohn's Disease Forum » Support Forum » Undiagnosed Club » A GI Issue deja-vu....help!


01-20-2018, 06:56 PM   #1
allieinwonder
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A GI Issue deja-vu....help!

Hey guys....

So most of you won't know me, but I was a regular member of this forum years ago when I was, like you, frustrated and undiagnosed. I ended up diagnosed with Behcets disease, an autoimmune vasculitis (inflammation of the blood vessels) in December of 2012. Slowly but surely I stopped coming around, which I regret because I love to help others who are in my past shoes, frustrated and desperate for answers. I also want to help others who might have Behcets disease, and have a hard time because A) doctors aren't well versed in Behcets, especially in the USA and B) it is a disease that doesn't primarily effect the gut, but there are patients like me whose disease mimics crohns very well, especially in the beginning.

Some more background: I have chronic abdominal pain, right below where my left ribs end. I had bacterial bronchitis a couple weeks ago and was on antibiotics for it. I was on Humira in 2017, and was doing very well on it, but my new insurance this month denied my prior auth for it, so my last dose was mid-December.

Anyway, I'm back because I need some GI issue support. Last Sunday, my left abdomen next to my belly button started hurting severely. Pressing on it made me feel like I was going to pass out. 24 hours later I was in the ER getting a ct scan and was diagnosed with constipation. I was confused as I had been having regular bowel movements the week prior, normal ones actually (which arenít normal for me, mine are on the smaller harder side). I went home and did as they said: miralax, colace, lots of water. I also made sure I ate healthy and added a probiotic yogurt. 5 days later, and 8 BMís later, Iím still in severe pain. Same place. My hydrocodone, when I give in and take it (I know it isnít good for the gut), isnít touching the pain. I almost feel like I'm not absorbing it. In desperation I did an enema this morning, and a small, normal BM was all that came out. The pain has been severe, very much so when I move. I started sweating a lot/having chills yesterday but I have no fever. My legs felt like jelly last night and I have felt weak overall since the pain started.

Obviously I'm calling my GI on Monday, but I feel so defeated right now. I feel so unsupported by the medical community. I know its only been a week, but this pain is so severe that a week feels way too long. And calling my GI means I have to wait for the appointment, then possibly wait for another colonoscopy...that is so daunting. I feel like no matter how hard I try to get my health in order, something comes along and all my hard work feels like its for nothing.
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DXed with Behcets disease December 7th, 2012. Behcets disease is a rare autoimmune disease of the blood vessels that can mimic Crohns.
www.behcets.com

DXed with Polycystic Ovarian Syndrome (PCOS) November 20th, 2017.

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01-20-2018, 11:47 PM   #2
my little penguin
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Was it a regular ct or a ct entography ?
I know for ds GI only wanted a ct entrography done to visualize inflammation and strictures etc..,
Not a regular ct
Later he switched to MRE for evaluation

Just sayin ....
Do liquids diet help at all vs solids ?
Can you call the on call GI and explain everything vs waiting till Monday ?
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01-20-2018, 11:51 PM   #3
Jabee
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I donít think I can be of much help, except to say that BehÁetís disease can cause GI lesions and bleeding, which you already know. It sounds like not having Humira has caused the vascular inflammation to become worse. Iím posting a link to an article I found interesting. I donít think you should hesitate about going back to the ER if the pain worsens at all. The GI complications of BeÁetís are pretty unpleasant. Can you reach the on call GI and speak with him/her about what to do?
01-22-2018, 10:20 AM   #4
allieinwonder
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Thanks for the replies guys, and for listening to me rant.

my little penguin, it was regular. My GI probably has a better idea on how to find the problem!

Jabee, I completely agree with you. I think going off the Humira has caused some sort of flare. I have very minor ulcers coming in my mouth as well. I'm still on Imuran, colchicine and pred (2mg), but I definetly saw a difference when we added the Humira. I think going off of it has shocked my system in some way.

My BM's are now more regular and more regular-looking than they have been in years. Must be the activia, lol. The pain is still severe, just to the left of my belly button.

I just called my GI and they are seeing me today at 3pm, which is a relief!
01-22-2018, 02:40 PM   #5
Jabee
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Of course I forgot to post the link! Here it is below. Glad you are being seen today.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4385527/
01-22-2018, 06:53 PM   #6
allieinwonder
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Of course I forgot to post the link! Here it is below. Glad you are being seen today.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4385527/
I love how this article talks about how Behcets is a "uncommon subtype of inflammatory bowel disease". My Behcets mostly presents as gastrointestinal (which is why I am a member of this forum!), but my doctors do not generally treat it like IBD. My GI did today, which is really awesome!
01-22-2018, 06:58 PM   #7
allieinwonder
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So my GI was super nice and helpful today. He listened to me describe the pain, the ER trip, and all I have done to clear up my colon. He agreed that it isn't constipation causing the pain at this point. He doesn't want to put me through another colonoscopy (he did my last one two years ago), and diagnosed intestinal inflammation due to a Behcets flare. I am upping my prednisone to 20mg for 5 days, then tapering back down. He says that my Humira being stopped most likely caused the inflammation and told me that my rheumy needs to fight for me to get back on it. I agreed with him! He also gave me a script for bentyl, to see if the pain is being caused by spasms (I don't think it is, its not a cramping pain).
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