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After 6 surgeries my scope came back negative for Crohn's....

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Crohn's Disease
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Posted 12/2/2015 3:44 AM (GMT 0)
I had my first emergency surgery for a peri-rectal abscess back in April of this year. It was a deep one, golf ball size and I was septic. After that first surgery I was referred to one of the biggest and best hospitals in the state, in case it came back and because my first surgeon knew he wouldn't be able to help me further due to the proximity to the sphincter muscles, etc. It led to a very complex fistula. Long story short, I had five surgeries at the new hospital with the head of the colon/rectal department. I had a mushroom catheter, two setons placed, and missed out on a lot work/school. I was finally able to get a colonoscopy scheduled after waiting for healing so that I could handle the prep, and all came back negative for Crohn's because there were no polyps, inflammation, etc. I am not happy with this result/diagnosis because now all of my issues over the past 8 months are deemed "bad luck." Has anyone else received this bad (but maybe good news?) Am I overreacting to not having Crohn's or any answers? I feel even worse off believing it's bad luck than having a serious auto immune disease. Any input would be appreciated. Thanks in advance.
Posted 12/2/2015 4:39 AM (GMT 0)
Did they do any biopsies? There is also the very very small chance it is only in your small bowel.
Posted 12/2/2015 11:16 AM (GMT 0)
Yes, ask about biopsy results. In theory if you have Crohn's but it's currently in remission, evidence of previous inflammation should show up in the biopsies. Other than that, most anal abscesses actually aren't caused by Crohn's disease (although having Crohn's increases your risk of getting one).
www.webmd.com/a-to-z-guides/anal-abscess
/www.fascrs.org/patients/disease-condition/abscess-and-fistula-expanded-information

I know right now you really want to put a name to your suffering, but trust me you don't want that name to be Crohn's: it's a ****ing miserable, lifelong condition.

PS: I do know how irritating it is to have bad things attributed to "bad luck", as if that somehow makes it better or okay. If I did that to you, I'm sorry, I didn't mean to. Hopefully after this year of "bad luck" (so to speak), there'll be no more problems.
Posted 12/3/2015 3:52 AM (GMT 0)
They didn't do any biopsies bc they didn't find anything. And don't fret no one on here referenced the "bad luck". That was from the Drs. And I didn't "want" a Crohns diagnosis, I just wanted an answer for all I've been through and thought maybe a diagnosis would lead to medication to prevent it from happening again. I'm not sure I can go through all the surgeries etc. again if it reoccurs. I've heard people go years without being diagnosed, mostly from this site. And I could do the scd diet but it doesn't seem cost effectiveness, especially with a new year starting and my out of pocket going back to zero. I'm just at a loss of what to do considering I still have a seton in place and a deep pain every now and then where the abscess/fistula is. Not to mention the fact that any food I eat I eat goes straight throgh me.
Posted 12/3/2015 4:47 PM (GMT 0)
Char, if you continue to have issues you might want to seek a second opinion.
Posted 12/3/2015 7:30 PM (GMT 0)
I'm sorry you didn't get a Crohns diagnosis.
As much as having this disease sucks, I was hoping a Crohns diagnosis would inspire someone on your medical team to treat you with a fancy Crohns related medicine, like Remicade, Humira, or Entyvio, instead of continuing to do surgeries to you.
sigh
Posted 12/4/2015 12:09 AM (GMT 0)
I am really surprised they didn't do biopsies. Any good GI knows that just because there is no current inflammation doesn't mean there wasn't any in the past. Also, a colonoscopy doesn't go up very far compared the huge amount of intestine there is in the body.
Posted 12/7/2015 12:12 AM (GMT 0)
I was aware that they probably wouldn't do any biopsies unless they saw something of concern going into the scope. I guess I was just just assuming that something would be found to indicate Crohn's or something alarming so that we could get on the road, or "a" road, toward treating my symptoms and making sure I don't have a repeat next year, when all of my insurance, copayments, out of pocket, etc. etc. etc. changes. I am still currently having bowel issues, and pain where the abscess was with and without swelling at times, and sometimes with tremendous deep pain where the abscess/fistula is and this is what concerns me. I also still have a seton in place that was put there after my last surgery in September. As I've stated earlier I'm just not sure where to go because I do like and trust my surgeon. He's one of the best in the field in the state. But I know, deep down, just like I knew the abscess kept coming back and they said no but I ended up having 6 surgeries that something is still going on within my body. My boyfriend and I are trying to figure out where to go next. An immunologist, RA specialist, just totally feeling lost.
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