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Fistula Friends Meet Here!


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#1 isdapous

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Posted 20 March 2007 - 10:05 PM

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Hi Gang: Well, wish me luck. Tomorrow I see Dr J and find out if I need more surgery, and he will be taking out the stitches. Boy, how I am looking forward to that!
All in all, the fistulectomy has been a success. Everything is coming out where it's supposed to. I will always have a bit of drainage after a BM, and never will I look human there again, but NO EXTRA HOLE to deal with. How exciting is that. I will go on the record that it was worth everything to give this a shot!
I hope everyone else is doing better or even great! I will post after the appt if I can sit at all. Isda Posted Image


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#2 NoMasFistula!!!

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Posted 21 November 2006 - 11:41 PM

Happy Thanksgiving and healing to all!

#3 Prudy

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Posted 26 February 2007 - 07:48 AM

Well right now I am waiting until 9:30 when the gastro's office opens.. Just tried my PCP and he is away until March 2! No appointments avail with any others there so .. if my gastro can't or won't see me.. I will have to go to the Urgent Care where my PCP is located.. they are covering for him..
I called work... ugh... they do make it hard.. They want to know how long do I think I will be out..???? Dah....You know.. I have to be honest.. they do not understand.. and having to deal with all this now.. the IBS.. and the other issues I have.. They do not make one feel any better... or comforted in any way shape or form.. Sure their objective is their business.. but ... With a draining and hurting butt.. do they really think.. my being there is good????

Up DATE: Just got ahold of my gastro.. I have an appointment for tomorrow afternoon.. I am seeing his NP.. which is ok.. I used to work with her years ago.. she is very good..

I know.. I need to snap out of this... Things could be worse..?????, though they feel pretty badly now... I have to take comfort in knowing... God is in control...and HE will see me through..

You know ... it has been years since I had the rod done along the fistula tract.. so I try to figure out now where it is.. I think I know how it started.. about 20 years ago.. I was riding stationary bike for exercise.. and had changed me diet to twigs and bark for health.. All of a sudden.. after years of hemmie pain.. {Child births}.. I get the awful pain when I have a BM.. different than hemmie pain.. I mean.. gripe the toilet.. sink.. wall whatever pain..just when I have a BM... I think I had a fissure.. I remember I started taking metamucil.. to soften the stools... and doing sitz.. that all helped and it must have healed.. BUT... guess what.. that is where I think the fistula developed.. cause where the pain of the fissure {?} was.. and I still remember it.. is now where I get this twinging pain right near the anal opening.. that goes up my right butt cheek.. Which is where all the abscesses {2 now this one makes #3} have formed.. and this one is in the same vicinity..This time the pain of the abscess actually flared more into my right butt cheek... and up near the sacral area.. which was different..and why I knew.. this was not a hemmie... Since the opening of it.. that pain has subsided to where the pain is now locally to the opening..and when I touch it or spray my peri bottle too hard on it..
There is still the drainage.. which by the way.. smells.. and I feel like I smell like it...all the time.. though no one here has said I do... anyway..
Thank for listening to my rendition of all this.. I think I am rambling to pass time till I can call the doctor..
Prudy..
A journey of a 1000 miles begins with the first step.
I follow a trigger free diet, take calcium, a good organic cereal, and eat yogurt everyday day to control my symptoms. And a good dose of daily Prayer along with it...HOPE- Sees the invisible, Feels the intangible, Achieves the impossible.

#4 luckylou

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Posted 15 June 2006 - 08:33 AM

Chrolette, sounds like your Doctor is taking very good care of you.

My symptoms were, in one month had severe quick weight loss (30 pounds), everything I ate went in and out my vagina, had no control at all. Had emergency surgery, 12" of my colon removed, a fistula repair and a bowel re section a year ago March. Since the surgery have been incontenant (no fun). I won't say anymore, the last year and a half has been really rough, takes all my strength to stay positive.

Charlotte, just watch your symptoms, if anything changes see your Doctor right away.

Sending good thoughts to you.



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#5 Brazilian fistula

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Posted 10 April 2007 - 05:54 PM

Jim,
Thanks for the crossed fingers. LOL

#6 isdapous

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Posted 02 February 2007 - 11:00 AM

OK, here is what I have been able to determine through research.....A colostomy or ileostomy in combination with advancement flap surgery insures a much better chance at full resolution. The colostomy or ileostomy is usually done as a temporary thing, to lessen the pressure on that area of the rectum and allow the healing to take place without complications from fecal matter.
I have spoken with several wearers or former wearers of a stoma bag and have discovered it really isn't so bad. They have the kind that you empty and wash out and the kind you throw away. there are a couple different ways of attachment depending on the bag type, and this should be discussed with your surgeon prior to the surgery. Everyone I talked to said the fear was ungrounded and that they are not unhappy with the stoma.
The surgery can be done prior to the advancement flap or during the advancement flap surgery. Again, as your doc.
Remember, the stoma increases the chances of success by over half, and is the best solution for stubborn fistulas like ours.
Having had over 15 abdominal surgeries, I can tell you, the post op 3rd day is the suckiest, and then after that things begin getting better very quickly. I am going into mine with the mindset that this is the correct thing to do, and that I will be successful in healing this time! (I talk to the new doc on the 19th)
You all have my prayers and best wishes. We will be the ones who are successful, but a positive attitude is very important when looking at this type of surgery.

#7 charlottie

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Posted 13 June 2006 - 03:21 PM

Dear all,

I'm new here and I'm glad I found this board. I live in the Netherlands....
I'm sorry if I ask any questions that have been asked before....
I'm kind of eager to find out if more of you have experience with a fistula located in the vagina? Most of the stories I read here are about perianal fistulas. I had one of those too btw and had surgery for that about a year and a half ago.
But 6 months ago an abcess formed inside my vagina...not superficial. It drained by itself about a week later.^6 weeks ago another abcess and that also drained about a week later. But since then it came back 2 times, draining the same day.
A surgeon and gynaecologist are working together on this... First they tested me for Chrohn's but tests came back negative. I also had a MRI which showed a fistula in the vagina.
The plan is to opererate as soon as an abcess forms and drains again. Well, it did this weekend.... The surgeon immediately scheduled surgery (together with the gynaecologist) for coming thursday. But the gynaecologist pre-examined me this morning and can't feel anything anymore and now is hesitant about the surgery.
My concern is that the fistula will grow if not treated. And as most of you will understand my life is quite limited while this problem excists. I hardly dare to leave the house afraid that the fistula will get infected again and an abcess forms....
My questions are:
- Isn't it odd that the gynaecologist says that he can't operate when he "can't feel" the affected area? They do have the MRI images which should give them info on where the fistula is, right? And that he can't feel it doesn't mean that he couldn't see it with a microscope or something.
- The plan is to cut out the fistula. But I've read something about a new procedure in which they use fibrin glue to close the fistula. Does anyone know something about that?
- I also read that some medications can help heal small fistula's like mine. Flagyl and Remicade are brands often mentioned. But from what I understand these are mainly prescribed to Crohn's patients. Did anyone get these drugs while not being a Chrohn's patient?
- Any other info would be greatly appreciated!

My best to everyone!

#8 isdapous

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Posted 17 August 2006 - 04:58 PM

Vguy64: there were some folks on the board earlier in the year from that area. You might check with some of the hospitals in that area for a recommendation. Try going to the main page and looking at some of the other boards and sending the question.
Mine would drive me nuts for several hours after a bm, but I found the sitz baths helped a lot. try to schedule one in the morning after your bm if you can. there are ones that fit on the toilet which can make it go much faster, besides the postion opens up the area for more effective cleaning and relief from some of the pain. My doc also had me use a syringe and flush a couple times daily when it would try to swell shut around the seton. that does require staying in or near the bathroom for a while after. I think we all have to do trial and error until we find the methods which help us the most. I know I ended up with 4 surgeries this year, and still have the extra hole. It makes me the "butt" of many jokes in our family! I can tell you my pain has been pretty moderate for the most part, although some days are still worse than others. Today mine has been giving me problems, so when I got home from work, I spent 30 minutes in my whirlpool tub. Helped a lot. Hope you get some relief soon!

#9 SeattleHope

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Posted 27 November 2006 - 04:55 PM

Hi everybody. I have a question: if the external opening usually looks raw and pink but then turns white-ish and more painful - what does that indicate? (I hate asking a question like this but am oh so grateful that found a safe place to ask.) I don't want to call the doctor because I hate going in and would rather avoid a trip - especially if this change falls under "normal." Thanks.

#10 DragonScholar

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Posted 18 January 2007 - 11:21 PM

Looking,

Its my first plug and my first fistula - and may they be the only ones! Didn't need the debradement once we realized the silver nitrate would do it.

The cancer thing is scary, but I have heard of that in similar cases. I know you've been through a lot for so long GM, just hang in there - and as scary as it is, remember, this is a chance to make sure it doesn't happen. So you can get better eventually.

#11 isdapous

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Posted 13 June 2006 - 08:20 PM

Well Hello to all the Newbies, and welcome to our not so popular club.
My current fistula is a rectovaginal one, with the "external" opening originally inside the vagina, but my Dr. Steve made it just outside the vagina. The fistula runs from the left side of my rectum to the vagina.
I had draining setons for one week, reacted to the drain, and went with a cutting seton until it got to the rectum. We decided against the fibrin glue because of the pressures with the area of the interal rectal opening. The glue is not recommended for rectovaginal fistulas. about a 90% failure rate for anterior fistulas.
My first sugery of this bout was Jan 3 for an I&D of the rectal abcess, and my resident forgot to mention the fistula to Dr. Steve, so had the first draining seton on Feb 15. Spent the next 7 days in incredible pain, until they removed the drain and left just the cutting seton in. That has been a breeze. Some pain when tightened, but otherwise not really a problem other than blood, pus and serum drainage. That lessened until just a bit. Did have quite a bit of stool exiting through the fistula, and more embarassing farts than you can imagine. Learned to sit just so to avoid noise. Lots of time in the tub and on the sitz bath makes a huge difference. Ate nothing but sticks and twigs (at least it seemed that way) for 5 months.
If you read back in the thread, you can see some of what many of us have done to combat rashes, irriations, and other goodies which accompany this nasty stuff.
I have found keeping a happy outlook has saved me so much pain. Whenever I begin to get down, I pet my dogs or IsdaPous my giant kitty, or spend time with my daughter or grandkids, or just go to my garden and enjoy the miracle of nature. Find something to take your mind off of your butt!!!! I have not required a lot of medication for pain, although this week has been a bit rough. Not much pain, but a lot of discomfort, some fever and nausea, but all in all the easiest of the 4 surgeries this year.
As far as traveling 250 miles post op, you can do it, but if you need to go back to hospital in the next day or so, it is a long drive back. i would enjoy the motel. Bathroom right there, hubby to bring in food, someone else to do the maid work. Sounds like it could be a benefit rather than a pain.
Take your favorite pillow and robe and jammies and relax and enjoy at least the first day or so.
Do lots of research before letting your docs make decisions for you and be an active participant in your treatment. You will do MUCH better! Keep your chins up, and your butts down, knowing we are all pulling for each of us fighting the fistula battle!!!

#12 isdapous

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Posted 13 January 2007 - 09:59 AM

Hello Everyone. Sorry I haven't posted lately. Lots going on in my life, and my "little friend" has been giving me fits, along with other things flaring up.
Since there are so many posts to respond to, I am just going to respond without directing to a particular person.
The plug has been tried successfully a second time in Cleveland, but only one case I know of. I have toyed with the idea, but my fistula is really just a rather large hole now, and in such a rotten spot, the plug probably would fail again, especially since my AutoImmune stuff caused it to reject so quickly the first time. I imagine the advancement flap with the plug would probably be worth a shot. Since the internal end of the plug is stitched shut if possible anyway, having the flap over it would probably increase the chance of success.
The advancement flap is a good alternative for many if the surgeon agrees. Bypassing with a temporary ileostomy is actually a benefit in most cases, as it allows healing to progress without pressure stressing the flap. Again, depends on the doc and the location of the fistula. No matter what surgery is done, the risks for incontinence are always there. It is a balancing act to determine which outcome is best for each individual.
Second opinions are ALWAYS valuable, especially if you have any doubts at all. You current doc should not be upset that you are getting a second. If he is, not so sure of himself then is he/she????
The remicade injection directly into the fistula is a new one on me, but then remicade is something that is rather new anyway. I think it's probably worth a shot, but I am not a doctor, so it is just an opionion.
For those of you with Crohn's, talk to your doc about Humira. I know it is just being studied right now, but since my daughter is a study participant, I can tell you it HAS made a great deal of difference in her symptoms. She does still have to carefully watch her diet, but has only had one significant flare up since starting the study about a year ago. For us, it has been a night and day difference. All other meds, including remicade caused such dramatic side effects, she was unable to continue on them. The remicade did settle down the Crohn's, but ended up on the 2nd infusion, causing lupuslike symptoms, which still have not resolved. Not much fun there! The Humira has been her godsend med.
I will post more later. I wear out quite easily right now, and can't wait for my flare ups to settle back down. My best to all, and keep a good attitude and know you will conquer this pain in the butt!!!! Isda

#13 Gidget's Mom

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Posted 03 December 2006 - 06:57 PM

Terri, What do you mean by "second hole"? Is there anything that will be done for that?

I have a general question. If one's fistula is finally fixed, are regular appts still required with a colorectal surgeon?
GM

#14 isdapous

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Posted 11 May 2006 - 12:55 PM

Frustratedmommy: I can tell you i had my first abcess 15 years ago, and went 2 years with new ones developing, getting them drained, packing etc. Major YUCK!. This time the fistula formed right away, but doc missed it first surgery. second surgery went well but i reacted to drain, so the seton was put in. it has really worked well for me, and i would do it again. only 1/2 inch or so to go, but it has been since Feb 14, so takes a long time. with all the previous surgeries, i will always have to wear pads to protect my clothes, because there is just too much scarring for the sphincter to work as well as it should. in your case, sounds like the fistulotomy with or without the seton should probably fix you right up. Good luck and learn to love the bath! we put in a whirlpool and it is a Godsend!

#15 New to it all...

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Posted 04 December 2006 - 06:31 PM

so this is a tricky one - saw this guy in london today and he did definitely seem like a top notch guy. was very confident about his ability and clearly knows his stuff. only he surprised me - first by saying that he would recommend the fistulotomy even though my hole is high up (about 3/4 of the muscle would be compromised which he says would not leave me incontinent); and second by being very anti the plug and giving it no credit whatsoever.

as i've felt many times before, there seems a big gulf between fistula practice here in the UK and that in the US. it's clear that the plug is a recognised option over there and his reaction seems completely at odds with that.

so i now have to decide whether to do it - even though my originl surgeon said he wouldn't because it would likely leave me incontinent, and that my crohn's would likely prevent healing.

very confused and would appreciate any comments.

#16 New to it all...

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Posted 02 December 2006 - 06:06 AM

GM, all the best for the EUA. and i def know what you mean about the fear of waking up after surgeries feeling worse. i'm really hoping that yours is going to be another success - and that's in layman's terms, not in surgeon's terms where success means 'improvement'! but a real success where your next posts will just be to be to say how happy you are that you're all fixed!

DS and ejj38, thanks for the advice. and i definitely feel that we're in a similar situation ejj! i did go to the a&e in the end - thank goodness i have my family around me at the moment as my sister left worked and drove straight over. (i'm not looking forward to going home (i'm currently on hols with family)). the a&e guy was good - even though he couldn't really help he did explain what was going on. he thinks there is another abscess, but not where i thought, but that it's already draining. and he says things are building up, probably inside the fistula, but there's "nothing [they] could put a knife into". and while sometimes that's exactly what you want, for the relief, on reflection i'm glad that they think it's not a surgical situation. effectively, they said it will build up and then discharge - which i know a few of us have suggested happens to us, so it made sense.

today doesn't seem as bad, so i'm going to stay positive, try and get out the house and show this thing it's not the boss!

#17 looking forward

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Posted 24 December 2006 - 03:04 PM

Merry Christmas to everybody!

New to it all: I know you were very scared of incontinence before your surgery. When you get a chance, will you tell us if your surgeon had to cut as much as he estimated? (You posted he was planning on cutting the sphincter and both sets of rectal muscles) I know it is still early, but it seems like your recovery is going well and I was just curious to know somebody who has had an experience like yours. My surgeon has no respect for the plug either but is willing to try one with me because I am scared of the knife and the risks.

#18 jgal

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Posted 02 June 2006 - 10:48 PM

isdapous: Thank you for the advice. At this point I am not too sure what is next for me. When I had the surgery to have the surgical plug, my surgeon said there was a 70% chance that it would work. So, I kind of set my self up to think it wasn't going to work, so I wouldn't be so disappointed if it didn't. I still hoped that it would though. Now, I am miserable and still in pain and all for nothing because it didn't work. I went back in to my surgeon yesterday and now, on top of having everything irritated and infected from this plug not taking, I have a urinary tract infection as a result of all this. I am taking antibiotics now and hopefully that will help me to feel a bit better. My next attempt at fixing this will most definately be with another surgeon. I am sure my surgeon was competent, but it is time to try something new.
Right now, I have a wonderful husband and an energetic 2.5 year old and am just trying to keep myself going to try to get back to life as normal. My husband has been really supportive through all of this, but I can tell he is getting frustrated with it all too. I am trying to get through all this and trying to keep a positive attitude, but it is not an easy thing to do. This is just taking it's toll on everyone.
Anyway, I am sure things will improve in time. Right now it is just no fun.
Thank you again for taking the time to reach out. Sorry as I am that anyone has to be afflicted with this condition, it really does help to know that there are others out there who know what you are going through.

#19 Pain In The Butt

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Posted 11 March 2007 - 08:42 PM

Prudy, and I thought I had it rough this weekend!!
Jim, I am coping ok with my relationship that ended there are worse things that couldve happened. I do have alot of support in that area, and its a good thing I work alot of hours. Sorry about your rough days. Glad to here your wife is there for you. She is awesome!
My back side is starting in and I know its because of my IBS-C. All meds I take: zelnorm, amitizia, miralax still not curing that part of me and now Im having bleeding and mucus and drainage. UGH! My GI specialist better call with my appointment soon to start my tests and send me to the Cleveland Clinic to fix my inerds and back side, Im tired of the hold up.
Will be keeping everyone in my prayers and thoughts. Its going to be a long work week so I hope I manage ok. I walk about 10 miles a day at work and its not gonna be comfy wearing pantyliners or depends again. It causes more irritation to my skin. Has anybody had irritation back there and used something to help? My pcp gave me some foam stuff but it burns like fire. Goodnite all!

#20 magpieang

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Posted 20 June 2006 - 11:39 PM

Okay guys, I'm a little worried and depressed. A couple months ago I reported on here that I had my 2 part fistula surgery. Seton placement and then plug and had no problems--well, that isn't the case. About 1 month ago, I began notice air coming out of the fistula opening near my vagina. It wasn't draining, but I noticed air coming out a lot. Sometimes it sounded like a fart and sometimes no noise. Embarrasing! And then, last month around the time of my period I began feeling the pressure I used to feel and then I went to the restroom and sure enough, there it was--draining. I was so sad. I have called my doctor 2 or 3 times since and she's been in surgery every time I call. I don't know what this means for me. She said she couldn't do any cutting for me since I have Perianal Crohn's and 85% of my disease is the last 22cm of my rectum. I know she needs to see it but the worst part for me is that this whole time, before the fistula, I have drainage/seepage from my rear end. Sometimes it just comes out for no reason. I'll just be walking--not a pre-restroom run or anything, but it makes me so self-conscious. I've been telling my Crohn's doc for ever about the drainage from the rear, sometimes it's infection, sometimes it's drainage after a BM. I just felt like the plug was going to work. Especially since she said that the seton helped to close up the tract. So, it must have re-opened because of where my disease is located. She mentioned there being a 50/50 chance of it working since my disease is still active. But unfortunately, with the 4-5 drugs I do take for it, nothing is putting my symptoms into a remissive state. I've been told that the seepage after a BM and otherwise from the anus/rectum will dissapate/end once my symptoms are in remission. I guess I feel like that's never going to happen. Any advice??? Seriously sad.Posted Image((





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