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Fistula symptoms

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Crohn's Disease
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Posted 10/11/2007 11:10 PM (GMT 0)
Please help me!!!!  For a few years i was on one or more of the following: Pentasa, collazal, rowasa, cortifoam, canasa, and prednisone (but i cant tolerate pred).  I have been on 6mp for 2 1/2 months.  Started at 50 mg and increased to 75mg 2 weeks ago.  I did one treatment of remicade 8 weeks ago and am doing another Monday.   My colonoscopy in June shows mostly rectal crohns colitis.  I was (before 6mp) bleeding more, having more mucous, going to the bathroom, or feeling urges to go, 30 times a day.  Now its down to maybe 15 and the blood and mucous is a little better.  I am on mirilax for constipation tho cuz not much comes out, its more just the feeling of needing to go.  That has helped somewhat.  Now i am afraid i have a fistula and/or something else going on too.  I have a crazy pressure, pulsing, bloated sensation in my pelvic area (and rectal area) that is at its worst just after i push to go.  It literally feels blocked from coming out rectally (like maybe from swelling) but then the pressure builds up elsewhere.  Its also affecting my ability to urinate when i have that pressure.  The doctor says doing a CT scan wont be good bc of the barium.  I have had real problems with it in the past.  What do you think i should do/suggest?  He says he didnt see a fistula, abcess, or blockage by coloscopy in June.  He thinks the 6mp will do the trick once it really kicks in.  I cant wait anymore.  I feel plain ole yucky and at the end of my rope.
Posted 10/11/2007 11:15 PM (GMT 0)
My fistula was diagnosed by MRI.  Maybe that would tell your doctor more than the colonoscopy did.  Your symptoms sound just like mine did - with all the bleeding and mucus and the urge to go a million times a day.  It turns out I had a rectal fistula.  I had a seton drain put in I hate the seton, but it helps the fistula drain so it doesn't abscess.

Good luck to you.

Posted 10/11/2007 11:17 PM (GMT 0)
My GI suggests MRI enterography which is a newer test ony 40 people in RI have had this test done so far...he said this gives more deatil of fistula track etc. The contrast you drink for this has the barium removed and you drink less of it then he aid you follow with water then they do an iV contrast as well. This also avoids radiation!
Posted 10/12/2007 12:06 AM (GMT 0)
Hi

I've had Crohns for sometime, just recently had a baby and my symptoms have flared in a very big way... got an abcess and now its a fistula - I was told by the doctor that the only thing really that will get rid of it is remicade? Does anyone have experience with this treatment - seems pretty full on... and not sure but I have to get rid of the fistula so I suppose not much choice of anything really...

I was at one point on alot of drugs - the only thing that helped was a restricted diet (no wheat, sugar or dairy) and a naturopaths assistance with herbs.. I was able to come off of prednisone, 6mp - and just be on a minimal amount of mesacel.. 2 tabs a day.. So definitely try a naturopath if you can - but hard diet to stick to..

J

Posted 10/12/2007 3:25 AM (GMT 0)
Maybe ask for some antibiotics until the 6MP/Remicade kicks in? The pressure sounds like an abscess (which could be the start of a fistula) and they may help with the symptoms for a while. Flagyl and Cipro really helped me.
Posted 10/13/2007 12:54 AM (GMT 0)
there arent many places that do it but you can get a kind of contrast called gastrographin. its the same kind they make you drink if you go to the ER. its either in water or juice (tastes kinda nasty but NOT NOT like barium) and there isnt any mass that you have to pass afterward becasue its just liquid. maybe they could do a CT with that.

bunny

Posted 10/14/2007 11:45 PM (GMT 0)
I had the same symptoms that you are describing then it turned into a fistula. The doc gave me flagyl and i start remicade soon.
Posted 10/15/2007 12:31 AM (GMT 0)
Well, last night i felt the worst i have ever felt.  I was at the beach for a girls weekend and we shopped alot of the day.  I kept feeling this major swelling EVERYWHERE down there!  I had awful urges.  I had to keep sitting down to relieve the pressure and still it would throb.  Finally we got home and i had to get in bed.  I was freezing and shaking for hours.  Finally my fever must have broke and when i stood up even my calves felt tight from the tension.  Thru all this i kept having urges to go to the bathroom but nothing would happen.  While trying i had awful chills and felt very nauseus.  Eventually i fell asleep.  Today i feel a little better but wow was that scary.  Tomorrow is my remicade.  Im very eager to hear what the doctor says.  If i was home last night id have gone to the ER for sure.  I think either i have a partial blockage, a fistula, or an abscess. 
Posted 10/15/2007 2:01 AM (GMT 0)
debbie,
You're symptoms sound alot like mine. When I walk or stand for long period of time I feel alot of pressure in my pelvic area. The pressure makes me feel like I have to urinate all the time and it is actually getting worse. I have been diagnosed with a rectovaginal fistula but I don't understand why my symptoms are so severe and I have lots of pain in my pelvic area. This is thought to be endometrosis but who knows. I too get nauseated. You might have a abcess explaining the chills. I hope you feel better.
Posted 10/15/2007 11:06 PM (GMT 0)
I had remicade done today.  Also, talked to my doc.  He is now sending me to have a ct scan with rectal and iv contrast.  You guys ever heard of this?  Hopefully rectal contrast is easier to deal with than swallowing 2 huge bottles of it!  I just hope it either shows clearly what is going on (fistula, abscess, or partial blockage) or clearly shows nothing and that all my symptoms are from swelling. 
Posted 10/16/2007 1:21 PM (GMT 0)
Hi Justdebbie Glad your feeling somewhat better. I did have a barium enenema before that wasn't too bad .Not exactly sure what your test involve but it will be good to know what is going on in there. Keep in touch lol gail
Posted 10/20/2007 10:43 AM (GMT 0)
The results of the ct scan were no fistula, no abscess. I do have thickening in the wall of the rectum. What exactly does that mean? Could that be causing ALL of my symptoms? I am so fed up, really. I wanna stop the 6mp but i wont. Ill give it the full 6 months (been on it 3) to see if it will start working on me. If not, maybe acupuncture and/or this new LDN.
Posted 10/20/2007 11:26 AM (GMT 0)
Hi I don't know what thickening is but maybe that is what's causing you to want to go all the time. I am very glad to hear you don't have any abcess or fistula .Hopefully someone who has thickening will come on soon and tell you about that. lol gail
Posted 10/20/2007 2:58 PM (GMT 0)
This is just a guess but it sounds like you prob. had some inflammation in your rectum and when it healed it thickened up due to scar tissue.  It's good that you don't have any fistula or abcess cuz those stink.  FYI when my got my anal fistula's (which was a few times)  I didn't have any real overt symptoms at first, but i did have a toilet bowl full of pinkish watered down fluid when the fistula broke open. 

Posted 10/20/2007 5:43 PM (GMT 0)
Inflammation of the area will also cause thickening. You're sore because of inflammation.
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