Feeling incredibly sad. Colonoscopy today was horrifically clear for crohns...the whole length was basically cobblestones except for the rectum that was clear...and I have a perianal abscess and fistula! I'm a stay at home mom so I feel terrible for my kids not getting the full me, my husband for working to keep this sad sack of a body alive, my mom for having to help so much, and myself for having to live with a chronic disease! I have to have an MRI, CT, blood work, and TB test and then get insurance to cover humira. The Gi wants me on it for THREE YEARS! and I have a kiddo in school and a toddler so immunosuppressants isn't really where I need to be ya know?
Never had at trouble until C. Diff....They say those with crohns have increased risk of c diff but I swear the c diff caused my immune system to go haywire and caused the crohns.
Feeling ALL the feelings right now. Thanks for the space to vent.
Aaaaaand....its crohns
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Aaaaaand....its crohns
You WILL be okay!
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Re: Aaaaaand....its crohns
We had another poster who was young and got a Crohn's diagnosis after having had c diff. Last I heard, she had an FMT and it got rid of her c diff and Crohn's as well. Her username was bback12 (Brittany).
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Re: Aaaaaand....its crohns
I am sad for you also. Beth states something that maybe you could ask your Dr. about. There are studies about the FMT curing Crohns. I know you must be terrified but try to think things through. Also, I might get another opinion before going on the HUmira, see if there is some other med you can try first. I know you are overwhelmed. I will keep you in prayer and know we are always here for you.
CAROL
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Re: Aaaaaand....its crohns
I'm sorry you're dealing with all this and can't imagine how overwhelmed you must feel. Take one thing (and one test!) at a time and don't be hard on yourself. My father has Crohn's and never needed an immunosuppressant (although I know they work for lots of people). His is controlled with an anti-inflammatory and an anti-diarrheal. He has had it for 13 years now and is doing well! Will keep you in my prayers that the c diff stays away and you go into remission from the Crohn's. Hugs and blessings to you and your family.
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Re: Aaaaaand....its crohns
I just got word that bback is doing very well, but her Crohn's is in remission, not cured. The good thing is that it is not bothering her. I also know of someone else who got Crohn's after c diff and went to Mayo clinic and her Crohn's was also put into remission with treatment. She actually almost died before that. She could not eat at all and had to be hooked up to feeding tube. Now she eats what she wants and has been in remission. You might still find some of her old posts - hennypenny.
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Re: Aaaaaand....its crohns
The humira is supposed to help heal the fistula without a seton being placed which I certainly would like to avoid! I REALLY, REALLY do not want biologics but maybe if I can get to remission I can back off of those. My C. Diff fears are back since it would take one damn spore in a 10 mile radius to infects fragile intestines right now.
Bright side (I am not an optimist): I am not currently facing a resection or ostomy which are definite Crohns possibilities. Trying to live one day at a time. Trying to get into a Crohns support forum but I feel so at home here! I want to hug everyone that is newly diagnosed, having a recurrence, parents who have babies with this stuff! We are we the unlucky ones?
I'm more calm and resolved now than when I first poated and seriously a lot has to do with knowing that people here would listen and understand.
June is a really weird month for me. Today is my birthday and my sons birthday (he was early and NOT supposed to be my birthday present!), it is the month I had the procedure that exposed me to C. Diff, it is now the month I was diagnosed with Crohns. I'm really starting to dread June!
Bright side (I am not an optimist): I am not currently facing a resection or ostomy which are definite Crohns possibilities. Trying to live one day at a time. Trying to get into a Crohns support forum but I feel so at home here! I want to hug everyone that is newly diagnosed, having a recurrence, parents who have babies with this stuff! We are we the unlucky ones?
I'm more calm and resolved now than when I first poated and seriously a lot has to do with knowing that people here would listen and understand.
June is a really weird month for me. Today is my birthday and my sons birthday (he was early and NOT supposed to be my birthday present!), it is the month I had the procedure that exposed me to C. Diff, it is now the month I was diagnosed with Crohns. I'm really starting to dread June!
You WILL be okay!
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