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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Curious about whats going on down there!



03-30-2012, 08:31 AM   #1
babyblues
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Join Date: Mar 2012
curious about whats going on down there!

hello,

appologese for this being my first post, i promise il get this one over and done with and introduce myslf a little elsewhere. Theres something pressing on my mind (hence joining the forum!) and i just want to discuss it with people who know where im coming from. Id like to clarify, that i do not have a diagnosis of crohns yet.

Iv had various symptoms for 7/8 years, mostly to do with D, but i wont detail them here. My biggest concern right now is my ongoing problems with an abcess.

or two as they case might be. im not sure!!

I was very ill indeed last summer, all of which was a haze due to sleeping and/or being in pain. I moved to live back with family (i live in the uk.) unfortunatly, within 2 weeks of moving, i developed a a perianal abcess. I did not have a clue for the first week or so why i was in so much pain, putting it down to hemmroids. As soon as the swelling started however i went to my gp who confirmed i had an abscess. I was hospital that night, for surgical drainage the next day.


i went for the usual daily packing etc, and was constantly told how tiny it was (1cm at the time.) One month after surgery, i was back in a&e because it had closed over, and burst again, this time with feocal involvment. I was refered on to my colo-rectal surgeon but told as it had burst, there was nothing more they could do.

One month on again..... same story, it had closed over, but required surgical drainage again. this time it was 2cm. There was no "obvious" sign of fistula during surgery.


Nearly 7 months on now in total, and the abcess itself healed up really well. However i do keep getting flair ups regularly, but never enough for an abscess to show under the skin. I have had a few instances where i have questioned fistulas, but my surgeon is adimant there there arnt any. the last time i saw her in january, she was very appologetic but said she would send me for an mri to be sure, and if was all clear, she would discharge me as from a surgeons point of view, theres nothing she could do.


i had the MRI, but unfortunatly the date i was ment to go and see her again i had to have an unrelated surgery. My appointment to see her was re-scheduled for mid april, but i was still desperate to know what was on the mri.

it was good of her to write to me. She said she had not had proper look at the results yet, but there does appear to be "a collection of fluid between the top of the vagina and the rectum." she says that the leakage of discharge iv been having on and of was p[robbaly due to this, though the exit tract was healed over at the time of mri. but does expect me to have further flair ups and it draining again in the future.


I have been to my gp a few times over the past few months, in agony, swearing blind that the abscess is returning. They were right not to give me anti biotics this time however because i had no temperature, and as much as it hurts, it does keep self draining.



but that still leaves me confused.


what the hell is this mysterious fluid if not infectious? if my abscess site is right down the bottom, is it too far beyond comprehention to think that maybe there was a fistula at some point? Why keep me waiting for so long to see her again if it is something? or if she insists that nothing can be done, why not write and discharge me?








bb
03-31-2012, 05:10 AM   #2
babyblues
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Join Date: Mar 2012
i can see i wrote far too much in my orignal post.

I guess what im curious to know and cant figure out is what this mysterious build up of fluid i keep keeping if its not a true abscess?


anyone have any ideas?


many thanks


bb
03-31-2012, 07:21 AM   #3
Heather_D
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Location: Manchester, New Hampshire
Hi bb,

I haven't had an abscess like you are describing, but I have had the severe pain and an undiagnosed fistula for months (they think at least 6 months). I went in for surgery on 3/22 for an ileocolic resection due to a stricture and it was then that they also found 2 fistulas (which they then also removed). One went from my ileum to my cecum and the other from my ileum to my rectum (this was probably part of the severe pain I was suffering). I had a MRI and CT prior to surgery and they didn't show on either one, so even if the MRI doesn't show a fistula it doesn't mean you don't have one. I would keep pushing until you have answers. The pain from the surgery has been less than what I was experiencing prior, so I haven't even needed pain meds in 5 days. Although surgery isn't fun; being pain free (hopefully completely within the next couple of weeks) definitely makes it worth it.

Good luck! I hope you find some relief!

Heather
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-Heather

Diagnosed: Crohns Oct 2006
Prior Meds: Pentesa 4000 mg/daily; Cimzia 400 mg/monthly; Prednisone off and on from Aug 2011 - March 2012
Current Meds: Apriso started 4/14/2012
Surgery: Laparoscopic Ileocolic & Rectosigmoid Resection March 22, 2012
03-31-2012, 08:39 AM   #4
babyblues
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Join Date: Mar 2012
thank you for your reply.

yes my surgeon is very kind and did tell me that fistulas rarley compeltely heal by themselves. She also said that even if they reduce down to microscopic size, they are still there, but often not seen. She was very sympathetic and basically said that if on apperance theres nothing, then she will have to discharge me, though she expects to see me in for a fresh referal for flaire ups in the very near future. of course this sympathetic approach is totally differnet on paper, and has to be to the point. So many of the letters my gp is receiving are mostly saying that there appears to be nothing wrong. so when im back down the gp's office unable to sit down, but also with nothing showing on my skin, they take my temperature, which is fine, and send me away again. Im already tredding a fine line with asking for painkillers. im not sure what letters have been sent to my gp reguarding this MRI.


i cannot wait for this appointment in a few weeks. I just want a clear cut yes or no. yes, u need more treatment and this is what we can offer. or no, you are fine. go away and get a job. i can learn to live with this right?

bb
03-31-2012, 08:57 AM   #5
Heather_D
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Location: Manchester, New Hampshire
I guess it depends on how much pain you are in. I was in a lot (couldn't walk right from the agonizing pain...I called it the slow, hunched, duck walk) and pain meds didn't seem to help (only thing that helped was a liquid diet). My pain was up higher though as most of my issues stemmed from my ileum. I was admitted to the hospital twice before the surgery in severe pain (also dehydrated from vomiting). Each time I had a slight fever when I went in, but my temp was normal by the time I left (3 - 4 days). I wasn't better, my body just got a slight break from the clear liquid diet I was put on each time which allowed me to feel 'normal' again for a short period of time (maybe a week).

It's nice that your surgeon is understanding and sympathetic. I would suggest another opinion though if after your next appointment you still don't have answers. I switched GI docs in the middle of all my issues because I didn't feel as though the one I was seeing was listening to me anymore. She was very nice and I liked her, but I felt as though she had run out ideas for me. The pain is your body telling you something isn't right and hopefully a doctor will eventually be able to figure out what that is and get you some relief.

Good Luck with your MRI!
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