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need info about abscess and fistulas

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Crohn's Disease
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Mother2010
Regular Member
Joined : Mar 2012
Posts : 27
Posted 3/3/2012 9:26 PM (GMT -7)
I am very new to posting in forums but I could really use some helpful advise. All my problems started in Nov., I developed a perianal abscess, very small but still painful. My general practitioner knew what it was and took care of it in the office. It was so small that it did not need to be packed, at least from what I was told. A few weeks went by and I though everything was ok until I noticed there seemed to be another abscess. I went back and the doctor opened it up again, this time with a larger incision. It seemed to heal ok, but again a few weeks later I noticed it started draining. I went back to the Dr and I was put on another antibiotics, that was the third. I've been on augmenten, levaquin, and cipro.... after the cipro the draining stopped for a little while, but eventually returned. Finally in February my Dr referred me to a gastroenterologist, who them referred me to a surgeon, supposedly for a colonoscopy. It just so happens when I went to see the surgeon the area was not acting up as bad as it has been, so he decided right now would not be a good time to do a colonoscooy.
I don't mind not getting a colonoscopy, but I do want to know what is wrong with me. The surgeon I was referred to suggested it was just a healing problem, and that I do not have crohns because I don't really have any of the classic symptoms, he wants to see me again in a few weeks. And wouldn't it figure not even a week after seeing the surgeon the area has become very painful and started draining again, I am taking sitz baths because that is all I have been told to do.
I have been reading a few post to find some information, everyone seems very informative and helpful. I was just wondering if anyone else has has had this problem? Have any advice?
Thank you all for listening and allowing me to vent
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Mother2010
Regular Member
Joined : Mar 2012
Posts : 27
Posted 3/3/2012 10:28 PM (GMT -7)
My apologizes I had also meant to ask what are the typical symptoms of a fistula? How is it typically diagnosed? Thank you again for any help and advise you can give.
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ivy6
Elite Member
Joined : Sep 2005
Posts : 10404
Posted 3/3/2012 11:00 PM (GMT -7)
Feel free to click on the abscess & fistulae link in my signature - lots of answers and good information there.

Ivy.
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Mother2010
Regular Member
Joined : Mar 2012
Posts : 27
Posted 3/3/2012 11:21 PM (GMT -7)
Ivy6, Thank you very much for the info.
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Mother2010
Regular Member
Joined : Mar 2012
Posts : 27
Posted 3/3/2012 11:41 PM (GMT -7)
I do have one other question.... so far the surgeon I have seen once is hesitant to do any test for crohns because I don't have the 'typical' symptoms of diarrhea.... I do often have thr abdominal cramping and fatigue thats about it, well besides the abscess(s) and constipation. Is constipation even a symptom? Everything I have researched so far indicates D is a bigger indicator than C. Is the only test for crohns a colonoscopy?
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jobell
Regular Member
Joined : Feb 2012
Posts : 29
Posted 3/4/2012 5:44 AM (GMT -7)
With me during my first surgery (actually took 2 weeks of me returning to ER stating something was wrong) anyways don't want to relive that. Yes during the first surgery with the incision she made a gush of infection...the surgeon said she had never seen anything like that before....so naturally she thought she had puncture the abscess...NOT! Went back again to hosp she just did a freezing and tired to pop the abscess with a pointed instrument. No go. So at this point I'm sent home again and actually thought I was going to die. Scariest thing ever! I could no longer walk.....the pain now climbed all the way up and down my spine. My daughter...my angel took me to another hosp where I was told to wait in the waiting room. The waiting room must have had 50 people in it. I'm in a wheel chair cuz I can't walk and of course don't want to be sitting on my bum...so my daughter helped me lay on the floor. Guess what I was put in a room just like that. So they have me on morphine which I tell them doesn't work on me but you can't tell the nurses that. The one of the interns comes in to stick her finger up my bum and I screamed...I can handle pain but that was torture. So they decide to rush me to surgery. Have the same surgery again. Of course the weeks go by and not very much infection is coming out...and I can actually feel the bacteria eating its way through my insides down there. So after 3 months of complaining to my Dr and 2 surgeons I get surgery again...guess what I now have 2 fistulas. So he put in 2 seton cutting bands. Woke up after the surgery and my beautiful daughter asks me why I have a black eye. ???????????? What the???? So call the surgeon the next day and with a chuckle states oh that must have happened when we had to cram a breathing tube down your throat. Nice. So the stage I'm at now is the tightening process for these seton bands.....oh wait yah went in on a Thurs to have them tightened and he had found that the original knotting he had put in was gone......so I was more or less put back weeks in the cutting process. So with the nurse in the office he had to go inside the incision to retie and pull of the setons. Was send home with no pain meds...and was in sooo much pain for 2 1/2 days then I woke up to have a pee on the 3rd day and found that both the seton bands had fallen out. What the hell!!!! So started having an emotional breakdown cuz the surgeon said I would return in 6 weeks to have them tightened. So I have an appt with him next week GGGGGGGGGGRRRRRRRRRRRR. My surgeon seems to think I'm healing up nicely and that the seton bands feel out because they had done their job. But with the pain I'm still experiencing he's sending me for another MRI. I have a feeling a fistula has made its way along my labia and I have swelling and the feeling of another abscess.


With my experience with fistulas they felt like a throbbing feeling and could actually feel the bacteria eating its way trying to find an exit. Also you can get a zit like mark that feels strange and will come and go from day to day.


June 2011 - My symptoms felt like I had 100 haemorrhoids, fever, major calf cramps at night.
July 7th 2011 - first surgery for perianal abscess with daily home care nurse to change packing....which never stayed in.
July 25th 2011 - Second surgery home care...no packing.
Sept 2011 - Colonoscopy ruled out crohns, colon cancer, polyps - since I have a family history
Home care nurse 3 times a week- mentioned to them that I thought I had a fistula
Nov 7th 2011 - MRI
Nov 30th 2011 - Surgery for 2 fistulas - seton banding (cutting)
Dec 2011 - Surgeon found bands not tied...retied.
Feb 16th 2012 - Surgeon founds bands untied...tightened and retied.
Feb 19th 2012 - Bands both fell out.
*At this point I’m not taking and meds
Feb 29th 2012 Surgeon sending me for another MRI (Mar 9th)
Given Nifedipine to put on incision and perianal area.

Post Edited (jobell) : 3/4/2012 5:48:09 AM (GMT-7)

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Mother2010
Regular Member
Joined : Mar 2012
Posts : 27
Posted 3/4/2012 10:09 AM (GMT -7)
Jobell that sounds like an absolutely horrible experience, I truly hope everything gets better soon. I've only been dealing with this since the end Oct. Beginning of Nov.. I can't imagine having to deal with it much longer, but I have a feeling this is going to be a long process. I just want to know what's wrong
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chroniemomx2
Veteran Member
Joined : Apr 2005
Posts : 2346
Posted 3/4/2012 7:24 PM (GMT -7)
I tend to have constipation instead of D with my crohns. I cannot believe that a dr. will not test just because you don't have typical crohns symtoms. I think that is really ignorant, and I would be finding another dr. But that is just my opinion. My first gi, was horrible, and by the time I could get into another gi, I was really really sick. So, please don't let this go too long before you find someone who will help you. Draining abscesses in the dr. office will not get rid of them. They need to be surgically drained in an operating room, cleaned out, and then left open to heal from the inside out. While your surgeon is in there, he should use an anoscope to look for any inside connections which would indicate a fistula. There is about a 50% chance that a fistula will form as a result of an abscess. I have had numerous abscesses and a few fistulas.
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Mother2010
Regular Member
Joined : Mar 2012
Posts : 27
Posted 3/5/2012 7:50 AM (GMT -7)
Chroniemomx2, thank you so much for the info. It's true I feel like my docotors are being ignorant but unfortunately I live in a rather small area that doesn't have too many doctors to offer. I'm pretty sure the surgeon I was referred to is just a general surgeon, not a colo-rectal surgeon. I just wish someone would do some tests, I've been dreaming with this for months and have yet to have any sort of test or labs done.... Wait I'm sorry I do recall my general practitioner sent in a lab on what was drained from the abscess, but that's it.....
I honestly think that it may take me getting really sick before the doctors do anything, at least that's what it seems like. I'm just really frustrated
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Mother2010
Regular Member
Joined : Mar 2012
Posts : 27
Posted 3/5/2012 7:51 AM (GMT -7)
Dreaming is supposed to be *** dealing****. Sorry
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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11084
Posted 3/5/2012 8:18 AM (GMT -7)
Constipation can be a part of Crohn's. Diarrhoea is more common, especially during flare-ups, but lots of folks with Crohn's have issues with constipation. Judging from this board, it actually seems to be a fairly common complaint.

I'm not saying you have Crohn's, but it sounds quite likely. Enough so that I think you should be tested for it, particularly with the abscess. I'd be pushing for a colonoscopy. Incidentally, that's not the only test, but it's the main one.

Wish I could help a bit more. Good luck...
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Mother2010
Regular Member
Joined : Mar 2012
Posts : 27
Posted 3/5/2012 10:21 AM (GMT -7)
Thank you for all the help. Just having a place where I can ask knowledgable people for advise is really nice. I am so happy I found this site.
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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11084
Posted 3/5/2012 11:29 AM (GMT -7)
Cool :p
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chroniemomx2
Veteran Member
Joined : Apr 2005
Posts : 2346
Posted 3/5/2012 5:19 PM (GMT -7)
You need to go somewhere else then, if you don't have the doctors around you that you need. Maybe once you figure out what is going on and get the help you need then your small town drs. may be able to handle it. Crohn's is nothing to mess around with. An abscess bursting inside of you can kill you. I'm not trying to scare you, but you really need to get on top of this.
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Mother2010
Regular Member
Joined : Mar 2012
Posts : 27
Posted 3/5/2012 8:49 PM (GMT -7)
Chroniemomx2 I completely agree, I was able to finally get a hold of the dr office today, but still won't be able to see me till the 13th. I don't really know what else to do besides wait. But I'm sure by the time I go in the abcess, or whatever it is, will stop draining and not look as bad. That's what happened the last time I went to see the surgeon. It was actually looking like it was going to heal up completely, but of course not a week after seeing him it swelled up, not a lot but definitely enough to hurt, and then started draining from two places. One over the previous abscess, the other spot was right next to it.
It's weird how it changes, one week it will swell up, be hurting and draining, then within a few days it stops and almost seems normal. Its been doing that since that last time my general practitioner cut it open, she even stitched it to see if that would help, i think that was in January, although I don't know why she stitched it, from what I understand you are supposed to leave it open to heal from the inside out. I just can't understand why it seems like its has gone away completely, then out of the blue it gets sore, swells up and drains. Seems like it will never go away. I would rather not be dealing with this when I get married in October, but with the way it's going it looks like I will be.
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dinkley
Regular Member
Joined : Feb 2010
Posts : 112
Posted 3/6/2012 6:34 AM (GMT -7)
Mother2010 - can you call your doctor's office - today? - and request a pelvic MRI?  This would give you and your doc a better idea of what you're dealing with and how to treat.   I agree with Chroniemom, you don't want to mess around with this.  Unfortunately, fistulas don't repair themselves on their own - that I'm aware of.

I have a rectal-vaginal fistula (3, actually, but with only 1 exterior opening, I think anyhow), and yes, the draining is very unpredictable which can really mess with your head (it's getting better!  No -- it's getting worse!  Wait, it's getting better!  No ... etc.)  I don't feel any pain with my fistula(s), although there was serious pain with the abscess that developed prior to the fistulas.

Keep us posted!

 

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Mother2010
Regular Member
Joined : Mar 2012
Posts : 27
Posted 3/6/2012 8:47 PM (GMT -7)
Thank you Dinkley, I din't feel so crazy now. Unfortunately when I contacted the surgeons office they told me he is going to be out until next week. I'm hoping it doesn't look almost completely healed again by then. I've considered just calling my general practitioner but I likey wouldn't get a call back from them, or they would just suggest I wait. I will definitely take the initiative to let him know I am not accepting the 'Let's wait and see what happens' mantality anymore.
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Mother2010
Regular Member
Joined : Mar 2012
Posts : 27
Posted 3/6/2012 9:24 PM (GMT -7)
I meant to say I hope that the drainage does not go completely away by the time I see the dr, sorry for they typo again
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Julia Hill
Veteran Member
Joined : Mar 2008
Posts : 568
Posted 3/6/2012 9:28 PM (GMT -7)
Hi,

Abscesses are literally a pain in the butt.  Have you seen a coloral rectal surgeon?  That is what I would recommend as that is there specialty. 

All the best,

Julia

 

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dinkley
Regular Member
Joined : Feb 2010
Posts : 112
Posted 3/7/2012 5:58 AM (GMT -7)
Mother - that's not a bad idea to contact your GP. In fact, my GP is the one who ordered my MRI for me and discovered the fistula.
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AngelsMamaDorseysDaughter
Regular Member
Joined : Sep 2009
Posts : 225
Posted 3/7/2012 5:49 PM (GMT -7)
Hi,

My daughter has constipation with her Crohn's. She has never had D. I'm sure she wished that it was the other way around though. She has a very hard time with it.

 

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Mother2010
Regular Member
Joined : Mar 2012
Posts : 27
Posted 3/7/2012 8:36 PM (GMT -7)
Hi everyone, and thanks for all your responses. I have seen a surgeon, but he is a general surgeon. When I went the area that has been bothering didn't really look that bad. I am going to see him again next week. The only thing he suggested for the C when I saw him last was to take more fiber, drink more water, and take colace.... Which has really upset my stomach, and actually caused the C to get worse.
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LAC-NY
New Member
Joined : Jan 2012
Posts : 5
Posted 3/8/2012 5:50 PM (GMT -7)
I had an anal fistula about two years ago. I was treated by a colorectal surgeon. I too had 'flare-ups', or periods of time when it seemed like the fistula became more irritated and drained more often. My Dr first treated me with a fistula plug, which was not successful (it came out before it healed). He then tried to open the fistula, under local anesthetic (in the office). Several months later, the fistula returned. From there, he did a surgery, under general anethesia, where he opened it up completely and let it heal from the inside out. It was successful! Two years later and it has not returned.
During my treatment for the fistula, Crohns was mentioned, but I was not diagnosed with it. He did do a colonoscopy which looked fine.
Unfortunately, its now two years later, and I've just been diagnosed with Crohns. My most recent colonoscopy indicated severe damage of my lower colon, etc, etc. Looking back, it seems as the fistula was my first symptom.
Good luck with your treatments. I know it can be painful and frustrating.
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Mother2010
Regular Member
Joined : Mar 2012
Posts : 27
Posted 3/8/2012 9:17 PM (GMT -7)
LAC-NY I'm sorry to hear it took so long to get a diagnosis. I am fearful that if I do have crohns, that's the whole reason my GP referred me to the surgeon so I could get a colonoscopy but he didn't want to do one right now. I'm hoping he will reconsider, but like in your case it may not show anything right now. Did you have any other symptoms of crohns besides the abscess/ fistula at first?
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Brijoy
New Member
Joined : Mar 2012
Posts : 1
Posted 3/9/2012 9:43 AM (GMT -7)
 

mother 2010

Get to a GI as soon as u can.  Surgury is not the only way to deal with absessing or fistulas and as I havehad about 6 surguries and none worked for long I wont let them cut any more!!!  The drug Humira has worked wonders for me.  I started it in the spring of 2009 and have had NOOOOOOO abcessing or fistulas in all that time before that I was good for 2 to 6 per year.  Some went away quick some were hell!!  But u may find that u will have to educate your doc about your problem just dont assume they have the answers because they dont and each case is soooo individual that it makes it that much harder to diagnose, find the problem area,and figure out a treatment. Just try to stay positive learn as much as u can about your own body and its symptoms and try to stay away from the knife. 

This is just my advice but I have been dealing with this diease and similar symptoms for the past 25 years at least that was when I was finally diagnosed.  My wife and I tracked the symptoms back a further 11 years.

Its no fun but they come up with new treatments allllllll the time just need to keep going forward and push your doc in the right direction.  If that dont work find another doc.

Good luck and stay positve its a long life!!

Brijoy

 

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