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Fistula diagnosis

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Crohn's Disease
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Posted 12/29/2016 10:39 PM (GMT 0)
I received a letter this morning from the hospital informing me that my recent MRI scan has shown fistula tract at 2 o'clock position. What does this mean? I have been informed by the consultant that this will be discussed at my next appointment in February 2017. So far I have also had a CT scan - was normal, blood tests - normal, colonoscopy - probable crohn's proctitis. What does this mean? Do I have Crohn's? Following the colonoscopy at the end of October, I was prescribed and am currently continuing to take Asacol tablets (1 tablet 3 times a day) and suppositries (each night). As I was in a lot of discomfort, I had to visit Accident & Emergency and was also prescribed Co-Codamol 30/500 and am taking 2 tablets 4 times a day. Please advise whether this sounds like Crohn's disease. I am continuing to have anal discharge (mixture of blood and mucus) and my other symptoms included sever mouth ulcers at the time of visiting my GP early October.
Posted 12/30/2016 4:33 AM (GMT 0)
Hi @uk_male. I have some thoughts, I apologize in advance if they are jumbled, but I'm in the hospital right now on IV dilaudid. You know how that goes!

Did the MRI show any kind of inflammation at all? The only way to know for sure if you have Crohn's is with biopsies from the scope. Did your GI say that the scope said you had Crohn's? If you have a fistula, then it's almost guaranteed to not be Ulcerative Colitis.

First, Asacol is the WORST medication for Crohn's, especially fistulizing Crohn's. In some rare cases of very mild Crohn's, it can work, but overall studies show that it is less effective than a placebo. If it is Crohn's (and I am going to say that it is since your GI gave you Crohn's meds to start after the scope), then you need to be on a biologic like Remicade or Humira. Remicade is going to be the best bet to help close your fistula.

But yes, this does sound a lot like Crohn's. I'm a little surprised that with the fistula, your next appointment is for so far out. You will want to talk to a colo-rectal surgeon. Where is the fistula exactly and where does it connect to? You can have a fistula form and have it end up anywhere: into the bladder, out onto the skin, into the vaginal canal (for women), or even loop around back into the digestive tract.

Okay, I need to get some sleep. I hate hospital beds!
Posted 1/1/2017 12:27 AM (GMT 0)
If what you're saying isn't Crohns, UK_Male, than nothing is!
Hopefully you're seeing your GI soon and you can get on real meds ASAP.
Don't let them talk you into a surgery too quickly. The success rates are low and the risks often outweigh the rewards. sad
Posted 1/1/2017 9:38 PM (GMT 0)
Thanks for your comments - am new to this so am not really sure what to expect. Just need to manage the pain and also constant leaking (I am using tissue paper every time I go to the toilet to 'soak up' and then replace it on my next visit to the toilet). My colonoscopy did show inflammation - Asacol is not really helping although blood in stools has reduced a little bit, the mucus hasn't.
Posted 1/4/2017 11:41 AM (GMT 0)
Asacol is useless for fistulising Crohn's. In a nutshell, asacol (and all other meds with the same active ingredient, mesalazine) only treat the inner lining of the bowel; that's all right for ulcerative colitis, but not for Crohn's, which goes through all the layers of the bowel. Asacol won't touch a fistula. You need to go on a biologic like Remicade or Humira. Even then, the success rate isn't 100% but it's a lot better than zero.

I really hope you have a decent consultant because, as you're new to all this, you will be easier to fob off. Be honest about your symptoms and about the fact that Asacol isn't helping. Don't be tempted to downplay or minimise your symptoms.
Posted 1/5/2017 7:36 AM (GMT 0)
well since nobody else 'splained it... ;o) a fistula at the 2 oclock position would be the standard clock face imposed on your butt hole while facing forward and bent over. 12 oclock would be straight up the crack aligning with your spine.. so 2 oclock is just what it sounds like a little off to the right butt cheek from the upright position. my first one was at 4 oclock and re- visits every 5-6 years. ther will be a weak spot in the area, so even if it heals I most likely will return at some future time..
Posted 1/5/2017 9:30 PM (GMT 0)
Thank you to you all - I really appreciate your support and advice - roll on February and my appointment. Feeling fed up and down and the moment / all through Christmas & New Year holidays. cry
Posted 1/5/2017 9:42 PM (GMT 0)
Hi there, I also had a fistula for several years. I really am surprised they would make you wait until February. And not put you on something stronger! Do you have any fevers? Is the fistula itself draining?
Posted 1/5/2017 10:01 PM (GMT 0)
Hi - yes fistula is draining / leaking. Although I haven't had fevers, I feel shattered and tired most of the time. I did have a lot of mouth ulcers at the same time but they seemed to have gone now.
Posted 1/5/2017 11:08 PM (GMT 0)
I Have been in remission (with remicade) for 7 yrs. But the first 4 were awful. I was the fistula queen. My doctor prescribed Flagyl and cipro -2 strong antibiotics and the fistulas cleared up every time. They were all in separate spots. The leakage you are referring to could be the opening of the fistula. I usually knew I had a new one because of the leakage. . They were mostly located near my anus so it seemed that is where the leakage was, but there was always a little hole where your gut contents leaked.
Posted 1/6/2017 12:01 AM (GMT 0)
It's good that it's leaking and you don't have a fever, the leaking prevents int from building up and creating an infection(or a worse infection) did they culture the discharge? I know fistulas are extremely traumatizing and terrible. I had mine for three years, sometimes it would let up but it was active for most of that time. In that time it had spawned others as well, I named it Freddie the fistula after a doctor that told me what terrible condition it was in sent me to be admitted to the hospital. When I got there they said GI would see me but instead they never came and after being there over 24 hours in the over packed hall of theboos potato with a fever that kept fluctuating they told me the GI department was too busy to see me. They kept me another day but no doctors ever came and and I left in a similar state to what you describe, being totally lost. I was really afraid about taking more potent medications mostly because I was scared that if something went wrong I would be treated that way again and left to fight everything on my own. I finally started humira when I found the right doctors and it cleared the fistula up in a few months. Hang in there!
Posted 1/6/2017 12:15 AM (GMT 0)

randynoguts said...
well since nobody else 'splained it... ;o) a fistula at the 2 oclock position would be the standard clock face imposed on your butt hole while facing forward and bent over. 12 oclock would be straight up the crack aligning with your spine.. so 2 oclock is just what it sounds like a little off to the right butt cheek from the upright position. my first one was at 4 oclock and re- visits every 5-6 years. ther will be a weak spot in the area, so even if it heals I most likely will return at some future time..

I didn't know what it meant >_>.
Posted 1/6/2017 6:43 AM (GMT 0)
ncot, learned that one early.. that's how I was diagnose back in '84. dr said you have afistula at 4 oclock, and I said I cant I have to work today... ;oP ba dum bum
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