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Hello and introduction

Hi. My name is Drew. I'm a 34 yr old lady photographer in the midwest. I have a one year old daughter and an eleven year old son. They are the reason I suffer and smile. I love them and they deserve a mommy who dances and laughs and cooks. Even when I don't have the energy, I do it for them.

I had a fistula develop when I was 25. Having no idea WHAT it was and being embarrassed it went ignored. Probably not the best idea, but ... whatever. Around 26 or 27 I was referred to a GI in Kansas City. He said he didn't see any fistulas and gave me antibiotics. He said it may be Crohn's, but I didn't have insurance and he didn't want to continue care. It was frustrating and I gave up on seeking help for a while. ER visits were the route until last year when I acquired insurance and had my GP refer me to a GI. The GI said my condition was too severe and he didn't want to be responsible. He referred me to another GI I've been seeing him for about 8-10 months. So far, we've done 3 rounds of flagyl and cipro to no avail, then a round of xifaxan. Still not getting better. My GI recently gave the perianal diagnosis. I get really, really discouraged. I'm tired of being tired, hurting, being embarrassed about a thing I don't talk about ... After we resolve the infection issue, my Dr wants to put me on Humira or Remicade. I look forward to some relief.

I was happy to find the forum. Thanks for existing. :heart:
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi caidahlia and welcome to the forum! :D

Thank you for sharing your story and I'm sorry you've been dealing with this untreated for so long. :( I hope the infection clears up so you can start on either med soon.

Glad you found us and please keep us posted on how you're doing. :)
 

SarahBear

Moderator
Location
Charleston,
Welcome to the forum, Drew!

I really hope things improve for you quickly. You certainly deserve a break! Hopefully things clear up quickly and your maintenance med will get you feeling well in no time. :)

:hug:
 
So sorry your feeling so bad and have had such a difficult time. My daughter is 16. She was diagnosed with crohn's about 2 years ago. The GI seemed to think it was perianal Crohn's, She has skin tags and fissures. She's been doing really well on Asacol(well now the drug that replaced it Delzicol?). Recently she's had pain in her butt that practically knocks her off her seat, and a lot of uncomfortable belly bloat, forcefull burps sometimes and extremely tired. GI thinks it may be bacterial overgrowth so she's been taking Xifaxan. She seemed to get a little better then got worse just as we were ending the first round so he put her on another round. I was wondering if this is from the Crohn's or a completely separate issue.
Mary
 
Hi Drew, I know how you feel about putting on a brave face for the kids - my daughter is two and say me taking some pills the other day. "You not feeling good, Mommy? You okay, Mommy?" she said. It broke my heart.

Remicade did wonders for my perianal disease for years. Kept my fistulas closed and quiet. I hope you are able to get on it soon and get some relief.
 

nogutsnoglory

Moderator
Welcome and thanks for sharing your story. I know it's frustrating and overwhelming but in time these issues can be solved. If antibiotics don't resolve your issues perhaps you would benefit from an immunosuppressant or biologic? What are they saying your disease is like? Location and is it heavily inflamed?
 
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