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Posted 9/20/2009 1:18 AM (GMT 0)

Hi Everyone,

I have an abscess that shows up on MRI's, pops and drains through a vaginal fistula, but my colorectal surgeon can't find it.  I figure the Humira is healing the fistula, then the abscess pools again and forms another fistula.  This has been going on for 5 months now. 

How do your doctors find abscesses that are deeper inside the rectum?  I have had exploratory surgery for this twice in the past, and they still couldn't find it.  Every 2 months I seem to have another abscess, and it is getting old real fast.  I even saw my gyno 3 times in hopes he could see which wall it was draining from - no luck thus far.

Any ideas?

Thanks,

Julia

Posted 9/20/2009 11:50 AM (GMT 0)
Hi Julia,

How frustrating! I can only suggest you go see another colo-rectal surgeon. Not sure where you are, but try a good teaching hospital. It seems odd that it is large enough to see on the MRI but he/she can find it.  There is no harm in getting a second opinion.
Posted 9/20/2009 6:14 PM (GMT 0)
I'm in the same boat, he found the first one and dealt with it. The second one seems to suffer with shyness when he's around, but it's quite happy to cause all manner of mischief when it knows he wont see!
Posted 9/21/2009 2:12 AM (GMT 0)
Hi FallColors and Sore Tum,

Thank you for your replies, much appreciated. The colorectal surgeon I see does work out of a teaching hospital. I have been told by all my other specialist's that he is just a little bit better than any of the other c/r surgeons in Alberta. I still might ask my GI to refer me to someone else though, I am at that point. My surgeon told me that the only way he can get rid of my abscesses for good is to remove my rectum. It's been 30 years with crohn's, but I'm not ready for that yet.

Sore Tum does the abscess you have that keeps hiding drain at all, or are you in constant pain? What have they done to find yours?

Fallcolors are your abscesses closer to the anus, or how did they find them?

Sorry to get so personal, but I really appreciate your input.

Julia
Posted 9/21/2009 6:40 AM (GMT 0)
My abscess sits quite snugly around the right side of my sphincter muscle, it drains every 4-6 weeks, I have 3 fistula exit scars on that side, and at the moment it's attempting to make a 4th. so the discomfort is intermittent. I'm on antibiotics at the moment, which seems to help.
I've had 2 examinations under anaesthetic, to try and find it, but I guess we are not catching it at the right time. I'm seeing the surgeon again on Friday, so if he suugests another proceedure i'll do what I can to schedule it with the cycle it seems to take.
Removing the rectum, I don't blame you for not being too keen on that idea!

Debbie x
Posted 9/21/2009 5:07 PM (GMT 0)
Mine were in the middle of the perineum and were easy to find -- just follow the fistula!

You would think they could see it when it was full. When you say it pops, do you get a lot of bloody stuff?
Posted 9/21/2009 7:25 PM (GMT 0)
If that's directed at me FallColors, yep that is exactly what I get. Enough to soak through my pants!
Posted 9/22/2009 2:46 PM (GMT 0)

Hi Fallcolors and Sore Tum,

You two have been very helpful, thank you!  When I say my abscess pops, I mean it drains vaginally.  It is like a flood, with a combo of green infection,  white stuff streaked with blood, then clear with blood for approx 9 days.  The last 2 have popped without flagyl, just hot baths.  I find the flagyl causes extreme D,  causing many accidents up to 10/day and in my sleep.  They tell me the fistula is like trying to find a pin hole in the skin.  If it is on the underside of a flap of skin they can't see it.  I took my hunira again lastnight, so it should be working at healing the fistula and I will be pooling and starting round 3.   I think I will ask for another MRI.

Julia

Posted 9/22/2009 7:03 PM (GMT 0)
I guess I'm lucky that the exit holes are obvious!
It may just be a matter of them catching it at the right time, maybe you should let them schedule an examination under anaesthetic and cross your fingers it's as it's pooling.
Posted 9/22/2009 11:05 PM (GMT 0)
I read from my medical records that the head GI at my hospital looked at my hemorrhoids and thought there is a fistula, fissure, or maybe abscess. The colo-rectal surgeon thought there was a fissure. They did not put me on anaesthesia to find out though. You are not the only one when it comes to this misunderstanding.

The infectious disease doctor put me on IV Zosyn and Flucanozole to treat the 6cm x 2cm abscess and 2 2cm x 2cm abscesses. The blood I was having for 15 months is gone and so is the yellow liquid that preceded the morning bowel movement.

Maybe you should see an infectious disease doctor and tell them my story. I was put on oral flagyl before, but it did not work. In the hospital, they put me on IV flagyl. That may have helped. I do not know.
Posted 9/23/2009 4:56 AM (GMT 0)
to find deep abscess..they usually put in a mushroom drain..so the cavity drains...but to actually find a fistula opening..they use hydrogen peroxide..and if it bubbles up..that is the indication of the beginning of the fistula site....
Posted 9/24/2009 3:50 PM (GMT 0)

Hi everyone,

Thank you for taking the time to share your experiences with me.

NostraHistoria - how long were you on the iv antibiotics?  Did the abscesses reocurr?

Frogeleita - I've not heard of this mushroon drain, but don't they need to find the abscess first?

Sore Tum - I sure hope you are successful this time in finding your abscess.  Please keep me posted, I will be thinking of you.

Fall Colors - As always very helpful, thank you!

Julia

Posted 9/24/2009 4:28 PM (GMT 0)
Hey Julia,
I'm in a similar situation as you, and have posted a few times about my abscess.

Mine has only ever showed up on ultrasound, and they can't find the abscesses/fistula that are currently making my life miserable when I'm in surgery.

I've been on cipro and flagyl many times, but now for the last 4 weeks. They help with the overall rectal pain and pressure I feel, but the two "spots" I'm feeling are still painful. If I go off the medications even for a day or two, the pain and pressure return immediately.

Mine appear to drain into my rectum, but they've never been able to find the holes, which like you said I guess are tiny. I've heard about using peroxide but my doc has never discussed this with me. I've got more appts coming up, with another colorectal surgeon and GI specialists... gotta keep on trying.

Posted 9/24/2009 5:37 PM (GMT 0)
Jesflr,

I'm sorry to hear you are going through the same situation I am. I would really like to know how your future appts go, and I will post my updates as well. It truly amazes me that these things can show up on MRI's but they still can't find them surgically to clean them up. Does the flagyl and cipro agree with your bowels? I can no longer tolerate either one of them. My surgeon has never mentioned peroxide to me either.

I'm really glad that we are all communicating because together maybe we can find a solution for all of us.

Julia
Posted 9/24/2009 7:39 PM (GMT 0)
Me too, Julia.
I'm always thinking we can do heart transplants, brain surgery, and there is this tiny pocket of infection that I can tell them exactly where it hurts and they still can't find it... :)

The flagyl and cipro make me feel constantly nauseated. I've lost 5 lbs in 4 weeks, just from lack of appetite. I think the flagyl also gives me heartburn if I don't eat just right. I was having a lot of D right before they put me on them, I think from the inflammation in my rectum, but that IS actually better on these drugs.

It also helps me to feel like I'm not the only one in the world dealing with this- it's not exactly polite coffee talk! I heard somewhere- (maybe on this board!) that up to 50% of people deal with a rectal abscess at some point in their life, but no one talks about it.

Incidentally, my abscess showed up on a rectal ultrasound vaguely- they initally called it a "fluid filled cavity" but NOT on the MRI I had a week after... strange, huh?

 I'll keep you posted.

Posted 9/25/2009 12:25 PM (GMT 0)
Saw the surgeon today, he says there is nothing palpable! I've just finished a course of metronidazole and it was definately palpable on Monday!
So, he has scheduled me for an MRI and said that the minute it starts to misbehave I am to phone his secretary and to see him that same day, even if there are no available appointments, I could have kissed him!
Posted 9/25/2009 1:25 PM (GMT 0)
Sore Tum,

Sounds like your surgeon is completely on board with what you are going through. Is your abscess draining continually with the metronidazole? As we all know just because he couldn't feel it doesnt mean it isnt there. I always know when mine is going to burst because the pain becomes so intense I can't sit down and the pressure is incredible. How is your pain now that you are off the medicine? I truly hope when it acts up, that your surgeoun can find it and clean it up once and for all.

Julia
Posted 9/25/2009 2:03 PM (GMT 0)
Just taken the last of the anti-biotics and they seems to have settled it (the inflammation and soreness has cleared up), it hasn't drained this time.
Mine seems to become most inflammed and drain in line with my period, which is a little worrying.
I asked him about the damage done by the last surgery (I can't hold on to wind), he said that the other fistula had penetrated the inner sphincter and my seton cut thrugh and fell out in less than a week, this is something that they will have to bear in mind when tackling this one, I don't know what I'd do if I became completely incontinent.
My surgeon is a thoroughly lovely chap, to be honest I think it helps that I work in the hospital, I'm not sure he gives everyone the same service!
Posted 9/25/2009 5:58 PM (GMT 0)

Julia Hill said...
Hi everyone,

Thank you for taking the time to share your experiences with me.

NostraHistoria - how long were you on the iv antibiotics? Did the abscesses reocurr?

Frogeleita - I've not heard of this mushroon drain, but don't they need to find the abscess first?

Sore Tum - I sure hope you are successful this time in finding your abscess. Please keep me posted, I will be thinking of you.

Fall Colors - As always very helpful, thank you!

Julia

I saw the infectious disease doctor yesterday who talked with the colorectal surgeon. It seems like there was some improvement overall, but the abscesses are still there after about 4 weeks of IV Zosyn and Flucanozole. I am going to the colorectal doctor Monday. They put me on 250mg x 3 Flagyl yesterday. I hope the blood does not return. Before I saw it everyday for about 15 months.
Posted 9/26/2009 3:43 PM (GMT 0)
NostraHistoria,

How disappointing that the abscesses are still there. What test did they do to see them? I really hope you have success with the surgeon on Monday. How are you feeling?

Sore Tum,

I didn't realize how much you have going on down there. Is Remicade an option for you? It did help my periannal crohn's and fistula's when I was on it. Unfortuneately due to side effects I had to discontinue it, and that is when I started flaring again. So now what will they do?

Julia
Posted 9/27/2009 4:50 PM (GMT 0)
He did mention Remicade, but I'm in the UK and they are just in the process of looking into using it for Crohns, I'm not sure the regulatory bodies over here have come up with a recognised regime yet.
It's a pelvic MRI, and then probably more surgery once they can pin point it.
I need to know if it's left, is it likely to cause more damage to the spincter muscle. I have to be careful not to eat things that make me windy, because I can't hold on to it as well, I sound like a squeaky dog toy! I can't tell you the amount of times I've had to look at my shoes as if it were them that made such an inappropriate noise! Lucky, I'm not nearly as stinky as I used. smilewinkgrin
I need to weigh up whether the abscess is likely to do more damage than his knife.
Posted 9/27/2009 6:20 PM (GMT 0)
Sore tum,

You poor thing, I really feel for you. At least you still have your sense of humour. I love the squeeky dog toy part - can relate, lol. I really hope they can fix this without damaging something else, when will you have this discussion with your doc? After the MRI? Keep me posted, think of you. I wish you could try remicade, I really think it would help you.

Julia
Posted 9/28/2009 1:31 AM (GMT 0)
Yes..they do need to find the abscess..but not the fistula...if they can see where its collected skin wise...they should be able to make an incision..and put in a mushroom drain which is stitched in..and then they put air in it..so it inflates in the cavity...when stuff needs to exit..after the abscess is drained..it may be easier to find the fistula
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