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03-08-2017, 12:49 PM   #1711
cmack
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Harper,

I would be concerned if you feel pressure or if the pain overall gets worse and not better.
It will be sore for a while but it should slowly ease off on you.

All the best,

cmack
03-08-2017, 01:42 PM   #1712
Harper05
 
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Ok, some days are bad and some days are good. Some days throb and some days don't. Just varies.
I don't have any bleeding which is good.
Just tired of it all. It's like enough already!
03-08-2017, 01:50 PM   #1713
cmack
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Hi Harper,

I can totally understand your feelings. It is the literal version of a pain in the butt!
Keep in touch, I'll try and help you along as much as I can. Heat speeds the healing process, you may want to try a heating pad and see if it helps.


May many pain free days await you,

cmack
03-08-2017, 03:44 PM   #1714
kelly1
 
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Hi all.

can I ask for your opinons please. I had an advancement flap procedure in January and was having some problems. I ended up with an infection and in hospital . Had an eua and the procedure had failed and they put a seton in.
The guy that done the procedure is not my surgeon as she was on leave. He said to get rid of my fistula he would have to lay it open and that would ruin me as I wouls become incontinent. He said to much muscle involved. He was straight to the point and said he would not do It as he cares about his paitients quality of life.
I see my surgeon in clinic and said can I have a temporary bag that you said you would do if the procedure failed as I have now had 22 pocedures and have no quality of life. She now says about laying the fistula open. I told her what the other surgeon said and she said I have nothing to loose.
She is calling mevin two weeks and I really don't know to do. My muscles are weak enough and if I have this procedure can the fistula reaccure.
sorry for the long post.
kelly xxx
03-08-2017, 04:06 PM   #1715
cmack
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kelly,

I was in the same situation regarding the incontinence. Which sphincter is involved? The inner or the outer? I would ask for a cutting seton to be placed, is what I'm thinking right now. It is an option that keeps your muscle from being severed. Hit me back. I had my outer sphincter severed and now I'm considered disabled due to surgical procedures(not good). I would like it if that doesn't happen to you. Let's see if we can figure this out.

your friend who cares,

cmack
03-08-2017, 04:20 PM   #1716
kelly1
 
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cmack

Thankyou for your reply, Its going through both sphincters, a transphincteric fistula. She did mention about a cutting seton when we see her in clinic and she said she wouldn't do one so I guess that is something I could ask when she calls me. What surgical procedures have you had if you don't mind me asking? She did mention if I was left incontinent there were surgical procedures that could be done. Do you still have fistulas now? Thankyou so much for your support.

Kelly xx
03-08-2017, 04:48 PM   #1717
cmack
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My fistulas finally healed. At least I hope they did, there are no signs of anything going on with me now. I am incontinent though, because too much muscle was severed and splayed open. I had a lot of fistulotomy's and abscess drainage surgeries. I think I also had the flap as well. Man was I doped up though, some of it is a big blur. I'm not completely sure if the flap was performed but I discussed it in detail with my general surgeon. I'm not sure why they couldn't do a cutting seton on you.... that puzzles me. If I could go back and do it over I probably would have tried the cutting seton or a temporary ostomy. I know it sounds radical, but you really don't want to have all that muscle permanently destroyed like I did. I think I just got desperate and said do whatever it takes to make the fistula go away. The cutting seton seems like the best idea to me me but there may be a reason that it cannot be done. I think you need another opinion for sure, maybe several. This is a serious gamble, involving the quality of rest of your life. I take this very seriously. I want you to succeed.

I think my fistulas may have also been through both sphincters. All I really know is I was a serious mess for several years over it. Demerol doesn't serve the memory very well. I will try my best to answer your questions. I am very concerned about you.


Keep in touch, two heads are better than one,

cmack
03-09-2017, 03:28 PM   #1718
kelly1
 
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Hi cmack


Glad your fistulas have healed. I have have and lots of abscess drained and fistulotomies. I have had the lift procedure, the plug, a bio lift and a flap procedure that have all failed. My muscles are so weak and I am already having accidents. I currently have a seton in. I have an appointment with my dr Monday and im going to see if he can send me somewhere for another opinion. Like you say this is my life we are talking about.
I have been suffering with this for nearly 4 years now and its effecting all aspects of my life. I appericiate your input, its nice to speak to someone that understands what I am going through.

Your right two heads are better than one
Kelly x
03-09-2017, 04:15 PM   #1719
cmack
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kelly,

Keep in touch. I will help any way I can.

cmack
03-10-2017, 09:14 AM   #1720
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Guys, I need your advice please. I am not sure on what to expect with the fistula I have.

Exactly 2 months ago, I had an abscess drained and the doctors suspected fistula. I was sent home and that wound is pretty much 95% healed with a small hole remaining but there is no drainage.

Exactly 1 month ago from today, I had another abscess drained and was told it was quite deep (5cm deep) and they suspected a fistula but wasn't 100% sure. I am scheduled for an MRI in June to examine the fistula and I am having daily dressings done. Today, I went in for the dressing and the nurse told me the base of the wound is clean and healing nicely but there is a canal and decided to examine the canal with a syringe and flush out the pus leaking. Although the pus leakage has decreased drastically over the month, I am still having some pus discharge. The nurse confirmed it to be a fistula today though she suggested waiting for my follow-up with the surgeon/MRI results to be absolutely sure of treatment options.

Now my question is I have had a fistula 4 years ago that healed up on its own with no medication/surgery (took approx 6 months). At that time, I didn't even know what a fistula/abscess was and I never gave it much thought as I didn't even need an I&D for the abscess 4 years ago.

Since having the I&D procedure done this year, I am extremely afraid of what is about to come. I am currently on Prednisolone (40mg) and a few antibiotics while the wound is still healing. I prefer no surgery on the fistula so what are my options? I heard Azathioprine could help with healing? Since I have mild incontinence, should I press for fibrin glue if I really need to operate on the fistula? What are the success rate?

Really appreciate your input please.
03-10-2017, 11:25 AM   #1721
cmack
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Hi Kancer,

I'm sorry to hear about the fistula. That isn't cool. I never tried the glue because my surgeon didn't think it would work as my fistula had multiple tracts. I never had Pred or Aza, so I can't comment there.

Sometimes they heal themselves, you had one heal before so maybe you will be lucky. I hope that is the case this time. I think they need to bump you ahead for the MRI. Could you call the surgeon and report the new news? I guess the glue is the least invasive so you might want to try it. I think June is too long to wait. I hope they can get you in for imaging before that.



I wish you the very best, keep in touch.

cmack
03-10-2017, 09:14 PM   #1722
Tuff
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We have a section called Fistula success stories.
http://www.crohnsforum.com/forumdisplay.php?f=314
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03-13-2017, 07:13 PM   #1723
Megeraldo3
 
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Hello everyone, just want to share my 2 yrs ongoing procedures for my rectovaginal fistula. I have had 15 surgeries in the past 2 yrs an feb. 10 was the last one. My colorectal dr. Put over 40 stitches in my rectum to fix the plug he implanted from the prior surgery that I told him i didn't want because it only has a 10% success rate. Well I'm in so much pain in on 20 mg roxicetes, 20 mg oxicotton an 7.5 mg Percocet daily. I have an ileostomy with a huge parastomal hernia due to this stupid fistula. I have had a gracils muscle transfer, labia fat transfer an dozens of flaps to try an close this pin size hole in my lower part in between my rectum an vagina. These stitches I have now are like wire an poke me all day long. I have had numerous infections after each surgery an I'm on flagile now aswell as all my other meds. My current stitches will take 6 mo. To dissolve an I'm on bed rest for the next 3 mo. Can't drive barely walk can't sit up an it's been so exhausting an overwhelming on me my husband an my whole family. I ended up having to leave my job an put my med school on hold. An I only have 4 mo. Left for school but I have to be there everyday an can't so my quality of life is not so good. I try my hardest to stay positive but it's not easy. I have faith in God that this is all for a reason. But I have a hard time trying to see the bigger picture. I got my fistula due to a fibroid removal surgery an they went vaginally an cute me low but it has been a long 2 yrs. I'm praying this is the last surgery for the rectovaginal fistula so I can finally have the ileostomy reversal an hernia repaired. I'm 38 an I'm still young. But Dr said no sex at all for 6 mo. An then after he does the contrast due to see if it's closed we could talk about when me an my husband could be intament again. Well I know there alot of other things we can do but Damn we only been married for 2 an a half yrs so all we know is waiting lol. Sucks but true. I hate to complain because I know things could always be worst. So if anyone wants info on these similar surgeries I could help in giving I some good advice an what to expect. Like I said i have had 15 surgeries. So God bless an know it's not the end of the world. Private message me and I will try to help with advice I can. Thanks for this site it's a great outlet for getting things off the chest. It's literally been a pain in my ass for a long time.

Last edited by Lisa; 03-13-2017 at 08:02 PM. Reason: Removed email link.
03-13-2017, 07:49 PM   #1724
cmack
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I think you need to be evaluated at the hospital. I like your spirit. You should see a new professional.

I wish you the best,

cmack

Last edited by cmack; 03-13-2017 at 07:56 PM. Reason: exeption
03-14-2017, 11:27 PM   #1725
Megeraldo3
 
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cmack i wish it was that simple but I have had several colorectal surgeons and plastic surgeons the best in this state that are extremely experienced in rectovaginal fistulas working with me. These things are very complicated. I am anemic an have alot of other health issues that make it harder for my body to heal itself like some people. An other Dr's won't finish something another dr started here in this state. I may have to live with my ileostomy forever but my team has informed me either way they will fix the para hernia within the next yr. So I'm excited about that. I suffered with depression an was medicated for that when this first started but I found that I was better off without the medication for depression and to face my problems head on an start changing the way I think. It's hard some days but most days I try to be positive. It is what it is. An complaining won't fix the fistula but laughing an staying happy makes for a better day. At least I'm alive an can watch my kids grow into the amazing people they are. An joining this support group has givin me hope an faith. Thanks for ur concern hope ur having a good day.
03-15-2017, 10:19 AM   #1726
cmack
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Hi Megaraldo3,

You are right, a positive outlook does make for a better day. I wish you the best. Hopefully you heal up. I'm a guy but I do know how frustrating fistulas are. Having your vagina involved must be very uncomfortable. I can't possibly imagine!


Stay positive,

cmack
03-20-2017, 04:01 PM   #1727
ramorrison
 
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hey guys, so i have a peri anal fistula with seton. Benn a few months now. I believe the fistula stopped draining. Haven't seen signs in weeks. Is this good or bad? currently taking remade
03-20-2017, 04:11 PM   #1728
ronroush7
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hey guys, so i have a peri anal fistula with seton. Benn a few months now. I believe the fistula stopped draining. Haven't seen signs in weeks. Is this good or bad? currently taking remade
I think it could be good. Have you had it checked recently?

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03-20-2017, 04:14 PM   #1729
ramorrison
 
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About a month. Last we checked it was still active but doing better. Have my next appointment in April, so didn't know if I should email him or not.
03-28-2017, 06:30 PM   #1730
cmack
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Keep watch for fever, pressure type feelings along with increasing fatigue. Those are warning signs that need immediate medical attention.

I hope all is well.
04-04-2017, 11:16 AM   #1731
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hey guys, so i have a peri anal fistula with seton. Benn a few months now. I believe the fistula stopped draining. Haven't seen signs in weeks. Is this good or bad? currently taking remade
This could possibly be a good thing, as long as your not in pain. Mine stopped draining about 10 days ago but then it started hurting so I've got to have an EUA tomorrow to check for infection. Fingers crossed yours is good news!
04-10-2017, 01:17 PM   #1732
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so I saw my I saw my CRS last week, and he isn't sure why I am not healed yet ( 3 months post LES). He told me it could just be that the fissure is still open. He ordered me to get a MRI. He said that could show if there is a fistula, although he doesn't think there is one.. its been three months. I still bleed from time to time and I throb. I think the fissure re opened after a hard BM.. and its just open again..
would u go for a second opinion or get the MRI? he also gave me a prescription for nifedipine- which hasn't really done much.
04-10-2017, 01:19 PM   #1733
ronroush7
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Second opinion.

04-10-2017, 01:36 PM   #1734
Harper05
 
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the only complications I know of from surgery are fistula and abscess and I have had both before.
04-13-2017, 01:50 PM   #1735
Harper05
 
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hi everyone, so I'm looking for suggestions on how not to have 5 BM a day. I wish I could fully go at one time, but it takes so many times. its like I need to get up - wait a half n hour- go again - this process is like 4 times, then I can actually leave the house. I think its making the site of the surgery (LES) take longer to heal.
I am taking 3 Colace a day, I eat a ton of fiber, drink plenty of water...im so lost and it really controls my life!
Any suggestions how to get down to 1 BM a day? Like fully go just one time around...
also I do not have Crohn's...
04-13-2017, 02:13 PM   #1736
ronroush7
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I am not sure. Maybe you could try a bland diet for a while. Call your doctor to see if he has any suggestions. Also, I know that it has taken me longer to heal because of the Crohns Disease

04-13-2017, 02:16 PM   #1737
readabook
 
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I am having opposite issue after fistula surgery last week! I would stop or cut back the colace!
04-13-2017, 04:31 PM   #1738
Harper05
 
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but then how do I keep it soft??
04-13-2017, 04:41 PM   #1739
Harper05
 
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but then how do I keep it soft??
04-13-2017, 05:36 PM   #1740
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hi everyone, so I'm looking for suggestions on how not to have 5 BM a day. I wish I could fully go at one time, but it takes so many times. its like I need to get up - wait a half n hour- go again - this process is like 4 times, then I can actually leave the house. I think its making the site of the surgery (LES) take longer to heal.
I am taking 3 Colace a day, I eat a ton of fiber, drink plenty of water...im so lost and it really controls my life!
Any suggestions how to get down to 1 BM a day? Like fully go just one time around...
also I do not have Crohn's...
My doctor(he's the head gastro at Tufts in Boston) told me not to take Colace but take mirilax if I need it. You cant take it every day bec. it doesn't work too well taken that much but he was right, Colace is very hard on the stomach and I used to get pain from it. mirilax there's no pain. just wanted to give you a heads up about Colace. Not sure how to fix the other problem you're having though, sorry.
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