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Any other UC'er with abscess and fistula?

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Posted 6/4/2008 7:04 PM (GMT 0)

Besides Me?? 

I would really like to hear of others with UC who have experienced them.   I know that people with Crohns have an awful time with them and getting them to heal.  Mostly I would like to know if there are any unusual complications known for those with UC or do we fall in with the general population.  

 In my case, I was quite sick and in the hospital as a result of the abscess because the infection went through my entire body.  The fistula formed several weeks later and I have just been waiting for it to heal for the past several months.  

In the meantime, what I have heard from every doc is the exact same phrase, "people with UC don't get abscess/fistula"  My GI says that it probably connected somehow, but he doesn't know about any special complications, nor, it seems, does the colo-rectal surgeon whois going to perform my fistulectomy. 

 I have been all over the internet and have found very little information relating directly to anal disease and UC, which makes believe there are no special circumstances to my recovery, but I know that if there any news out there someone on this board has probably heard about it.   So thanks in advance for sharing any info you have!

Thank you.

ps:

To be honest, I have received fair enough care from the doc's I have seen about the abscess and fistula, but the whole awfulness of dealing with a painful oozing hole "down there" has been very upsetting.  Perhaps because it has happened at time when my uc is the worse it has ever been and I have been hit with 30 - 40 migraines since January, I just needed this last paragraph to whine out loud a little 

Posted 6/4/2008 7:11 PM (GMT 0)
not sure where i came up with "fistulectomy"lol I meant fistulotomy
Posted 6/4/2008 7:22 PM (GMT 0)
My CR surgeon told me that 20% of UC patients can or will develop and abcess or a fistula and that it is not necessarily indicative of Crohn's. While they are more common with Crohn's patients, UCers can get them too.
My CR surgeon is one of the top in his field and I trust his opinion more than anyone elses.

Sue
Posted 6/4/2008 7:50 PM (GMT 0)
I had an abscess about 15 years ago, and a fistula ten years ago. I moved recently and had to change doctors. My new GI insisted I must have Crohn's and gave me a blood test which came back positive for UC and negative for Crohn's. So, people with UC do get abscesses and fistulas. I got the fistula when I had the worst flare-up ever and am sure it was not a coincidence.

There are medications which will help the fistula heal. In my case, I had cyclosporine which made a big difference, but I think other medications are also helpful. (I think infliximab is one.) I was also told that it wouldn't heal while I was on prednisone. In any event, the fistula closed up. Every so often it feels as if it is still there because gas passes through - but nothing else. I sympathize with you. Of all the indignities associated with UC, the fistula was probably the worst.

Malka
Posted 6/4/2008 8:03 PM (GMT 0)
Of course fistulae can form in UC patients, and it happens, but rarely. The problem is fistulae are a big red flag for any GI, since they are so much more common with CD, they'll automatically assume you've been misdiagnosed and you're actually a CD patient. Even if there are no manifestations of the disease outside the colon there is such a thing as "indeterminate" colitis, i.e. colitis that can't be classified as either UC or CD, and UC patients with fistulae will most often end up in this unfortunate category. In the end it's really not important, both diseases are treated the same, but it can become an issue if a surgical intervention is needed.

Also, you didn't misspeak when you wrote "fistulectomy".. There are 2 procedures that can be done - fistulotomy and fistulectomy, both are similar, but with fistulectomy the fistula tract is actually excised instead of just "laid open"... It's more effective than fistulotomy, but it takes longer to heal.

That said, if you can get the surgery done by an experienced surgeon, go for it. Chances are you will have to do it anyway somewhere down the line, and it's much easier if you're NOT on immunosuppresion (especially steroids) and you're in remission. Surgeon experience is the most important thing here, don't let some inexperienced local doctor do it just for the sake of convenience, shop around, find the best one, and you'll have a much better chance at recovery and avoiding recurrence.
Posted 6/5/2008 12:23 PM (GMT 0)

Wow!  Wonderful!  Thanks everyone for sharing your experiences and knowledge.  There is something very comforting about discussing these medical complaints from a personal/patient perspective than from the scientist/doctor one.

Thanks, doc, for the info on different surgery types. I probably saw both and never picked up on the difference.

 I am having a fistulotomy next Thursday performed by a colo-rectal surgeon. I am not in remission, but I am better than I was a month ago. 

Posted 6/5/2008 2:11 PM (GMT 0)
me, me!!! I have an RV fistula that appeared last November- started as an abscess, then burst & drained. I didn't know what it was at the time, so I didn't call my GI for awhile. I finally spoke with him & he did a CT scan which showed nothing. Went to my gyn, she couldn't find anything. So I was pretty much left on my own with it! I knew it was there, as I was having feces coming thru my vagina...nice, huh??? I didn't pursue surgery at the time, because I had a proctocolectomy scheduled for May of '08, & I figured that ought to take care of it. Well, I wound up cancelling my proctocolectomy, & here it is, 7 months later & I still have the fistula. Since I've had it, it's abscessed twice & drained on it's own both times. My GI doesn't doubt that I have one, & I believe I do have indeterminate colitis, so..... I chose not to pursue surgical correction for a # of reasons- I've heard it's nearly impossible to fix these things, even with a good surgeon. Plus, I am currently on remicade, which  helps to close them up also. So far it hasn't, but I'm hoping. And it only really nothers me when my UC is acting up & I am going to the bathroom many times a day. I take baths a lot, to help keep it clean. It hasn't stopped me from being intimate with my husband too much, & the whole mental freak-out part of it has pretty much gone away. I don't like it, & I plan to talk with my GI when I see him in July. However, many women with these wind up just dealing with them. GOOD LUCK with the fistulotomy!!! Please keep us updated on your surgery.

Posted 6/5/2008 6:34 PM (GMT 0)
I have a pretty wild abscess story. I was in remission last December when I had pain that I thought was a hemmerhoid but continued to get worse. I went to my GI (who I like and has kept me in remission for the last 2+ years) and he said because of the swelling that he thought it was a fissure and gave me pain medication and cortisone suppositories to shrink it and said to bathe in epsom salts.

Fast forward two days later, I'm in so much pain that I can't even get out of the tub on my own. But what finally sent me to the hospital was the 103 fever I spiked. I must have looked pretty bad in the ER because they sent me in ahead of about 20 other people in the triage. After a rectal exam by the resident (I could have $#@^ing killed him) they sent me for bloodwork. Negative. An xray I almost passed out during. Negative. An MRI. Bingo. With a voice much like ObiWan Kenobi telling Han Solo "that's no moon" the doctor said "that's no fissure" and sent for an immediate surgical consult.

The surgeon took a look at the MRI and said he understood the fissure diagnosis...the abscess was higher up than any he'd ever seen and impossible to detect without the MRI. He removed it that day and the recovery was about three weeks. Both he and my GI have said that while it could be UC related, it doesn't have to be and there's really no way to definitively say, especially since I was in remission when it happened.

As far as post-operative effects, because the surgery required him to cut a drainage canal for the abscess, some minor nerve damage took place (I was warned in advance about this). The "gotta go" sensation has been dulled a little bit, which isn't so great for me because even in remission I gotta go 3-4 times daily. My system just takes longer to figure this out now so my brain finds out kinda last minute if you know what I mean. I also had a brief flare during the recovery but was back in remission as soon as my convalescing butt was able to receive suppository visitors again.

Sorry this is so long, but if I can get this message out: IF YOU HAVE A HEMMERHOID THAT IS NOT HEALING, OR DEBILITATINGLY PAINFUL, OR YOU HAVE A TEMPERATURE WHILE A HEMMERHOID IS FLARING, GET TO YOUR GI IMMEDIATELY! Abscesses can grow and grow until they burst and do serious, irreversible damage.
Posted 6/5/2008 11:48 PM (GMT 0)
I believe we're talking peri-anal abscess here?Had one just over a year ago,most painful thing I've ever known!Thankfully it healed just fine after surgery.My doc said it could be related to the UC,and it's never been called into question as possibly being Crohns.
Posted 6/6/2008 12:36 AM (GMT 0)
me.. i had a fistula in-ano and undergone fistuloctomy.. in 2005.. then after two years i was diagnosed of UC... so my fistula came first before the UC,, strange huh... heheh
Posted 6/6/2008 1:29 AM (GMT 0)

It is much more rare for fistulas to be associated with UC compared to CD but not impossible...

Here's a good link that describes different types of fistulas as well.

http://www.nlm.nih.gov/medlineplus/ency/article/002365.htm

:)

Posted 6/6/2008 4:32 AM (GMT 0)
Thanks for the link, pb4.  I never realized how small the actual tunnel is, I thought they were wider... In response to the OP, I have had a 1 inch deep ulcer (I am still not sure if it was a fistula?), it was about the width of a dime and went from my retum towards my vagina but as far as I know, never opened into the vagina.  The Remicade helped close it.  My GI still thinks I have UC and not Crohn's, or maybe I have Crohn's in the rectum, he says.  I know basically it doesn't matter too much but I would prefer to know anyways.  Especially in case I need surgery. 
Posted 6/6/2008 7:40 PM (GMT 0)

Hi Everyone and thanks for responding!

You're right Ganggreen, people should take seriously any pain in the hemmroid-area.  With my abscess, even after being told to go to emergency room by both GI and PCP, I refused for half a day, because "I wasn't going to the er for hemmeroids!".  The fever and nausea finally convinced me.  Of course if I had been reading this site, I would have known about the existence of  rectal abscess'!   Btw, you couldn't see my abscess either, but could kind of feel it as a large area of hardness and I guess I was lucky because after I explained my symptoms, the ER doctor didn't even peak at the area until I had a shot of pain killers.  Anyway, for the next few days I was the sickest I had been in my life.  That is why I am getting the fistulotomy... I am afraid of having another abscess. 

Princess, that ulcer sound very painful. It would be hard to imagine a fistula of that size.  It is too bad they can't tell whether you have uc or crohns.  It almost seems as if they have to wait for one to get sick with just the right combination of things before they can say for certain which is so unfortunate for people that do not present typical symtoms.

Have a great weekend all!

Posted 6/6/2008 8:26 PM (GMT 0)

Hiya,

Another UCer who's had a fistula. I'd only recently been diagnosed with UC when I noticed a lump just off to one side "down there", and my GP (not my usual one) calmly told me it was just an anal fissure and not to worry. Only much later when I was investigating did I notice that lumps aren't part of the presentation, and what he'd failed to diagnose was a whacking great abscess which spread and tunnelled its way out - as anyone who's had a fistula is aware, that's an interesting day when it finally breaks out o_O.

I was quite lucky because it was a low one, and my surgeon didn't muck about once it was actually diagnosed - in for surgery the following week - they "lay open" the tunnel so that it can heal from inside out, which helps prevent re-infection, and as a bonus they put a seton in - this is a rubber band which slowly cuts through the sphincter muscle, it causes less lasting damage and is less likely to cause complications like incontinence than just cutting through in one go. That was back in Feb, and I've still got the seton in - but it's manageable and the horrible pain I was in before surgery is gone, so it's all worthwhile. Plus not leaking all the time does tend to let the confidence come back a bit - like I said to my doc, I can deal with UC, I can deal with a fistula, but not both...

The way my Gastro doc sees it, is UC when you're in a flare causes a lot of strain down there, leading to tearing in the lining of the colon - and that's where the infection gets a chance to start having a dig about, which seems to make sense to me. At least now I know what to look out for, though hopefully I won't get another one.

Hope the surgery goes well, and thought it's painful for a bit afterwards, I found it wasn't as painful as the abscess itself had been - just find a good soft pillow!

Feel better soon,

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