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13 Years, One Symptom
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Crohn's Disease
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snappy2000
Regular Member
Joined : Feb 2017
Posts : 41
Posted 9/20/2018 1:02 PM (GMT 0)
How unusual is it to have Crohn's for 13 years, but only one symptom? I've had crohn's (or have been dx with) since 2005 and it has only manifested as rectal fissures. The first was awful and incapacitating, but Remicade made it so that now I just get small fissures that actually do heal. But, I'm pretty upset that I have to live with this pain every day and it effects my life badly. I get up every day at 4 am to make sure there are plenty of hours to get over whatever pain my bm causes is gone by the time i go to work. This makes it so I can never stay up late, don't want to travel much and never want to stay at anybody's house (well, I kind of hate that anyway).
But with all that out of the way, is it unusual to have just rectal symptoms from Crohn's for years and years? I feel luck and unlucky at the same time.
straydog
Forum Moderator
Joined : Feb 2003
Posts : 19850
Posted 9/20/2018 3:26 PM (GMT 0)
Snappy, are you still on Remicade? One thing I have learned about
crohns is the symptoms are not always the same for everyone. Both crohns & UC are unpredictable at best. Have you ever discussed using any rectal meds with the dr? If you have constipation or diarrhea issues, either can cause this. When was your last scope & what did it show? Talk to your dr.
Take care.
snappy2000
Regular Member
Joined : Feb 2017
Posts : 41
Posted 9/20/2018 7:25 PM (GMT 0)
I'm still on remicade and I was last scoped about
4 years ago (due for another). The doctor has never found much in my gut, just a wicked fissure. Had a huge one toward the back, then a milder one toward the front, and now one on the inner side that acts up sometimes. Never have D or C and never have. Used about
ten different prescribed topical drugs before starting Remicade and months of antibiotics (of all that, only Cipro worked!). I have found that just about
everything that contains gluten can make me hurt, but I don't blame gluten itself. I have a very strict diet and usually don't eat any of the offending foods, but like this week, sometimes it doesn't matter; I just hurt anyway. I did SCD for 3 months and my pain was pretty minimal, but i also lost about
20 pounds that I needed to keep. I'm a very healthy weight now (not skinny, not fluffy).
straydog
Forum Moderator
Joined : Feb 2003
Posts : 19850
Posted 9/21/2018 2:28 PM (GMT 0)
Snappy, just a thought here, when you say fissures, by change are you talking about
a fistula?
snappy2000
Regular Member
Joined : Feb 2017
Posts : 41
Posted 9/21/2018 2:35 PM (GMT 0)
No, I've never actually had a fistula. Just a very deep fissure. Couldn't sit much for a year! Now I'm just annoyed by them.
Stevo68
Regular Member
Joined : Jun 2011
Posts : 103
Posted 9/24/2018 4:45 PM (GMT 0)
I went about
12 to 13 years with basically one symptom - essentially quarterly extreme stomach pain that lasted a day or two max. Now, it is much worse as I woke up one day with an abscess and fistula. It's been nothing but joy since....
snappy2000
Regular Member
Joined : Feb 2017
Posts : 41
Posted 9/24/2018 5:43 PM (GMT 0)
I'm sorry, Steve. From what I've heard, that's generally how it happens. I kind of consider myself luck (ironic since I wanted to die at the time) that my initial pain was so awful and debilitating that I was diagnosed immediately and got the right treatment. At least so far it seems like the right treatment....
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