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Old 06-28-2007, 07:57 AM   #1
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kath212 HB User
Crohn's and a Sphincteroplasty?

Good Morning-

I am new to these boards. I am very, very glad that I found it though.

A little background- I have sphincter damage due to surgeries for a rectal abscess and anal fistula. I also have Crohn's. Because of the damage, I have an almost constant leakage, with it being more significant directly after a BM. I rarely am without gauze or toilet paper tucked between my cheeks to absorb any secretion, and this has been the case for 3 years.

This spring I had an anal ultrasound which showed significant damage to about 1/4 of the sphincter, etc. I was told by my GI that this is permanent, likely to worsen as I age, and that no colorectal surgeon in our state would even make an appointment with me to discuss repair since Crohn's means that I have a very difficult time healing in the rectal area. He suggested fiber supplements and Immodium daily so as to constipate myself and minimize drainage. Needless to say, I didn't find that acceptable. I am 37 with a 4YO son and a 1YO daughter. I have things to do- places to go! lol

I have been doing Kegel and biofeedback for a few months without results, and I have an appointment with a colorectal surgeon in Boston who specializes in sphincter repair on August 3rd. My GI thinks that this surgery may be my only hope for a solution.

Way too late to make this long story short, but is there anyone out there with Crohn's who has undergone this surgery? I have found the other threads about sphincteroplasty very enlightening, and I thank you all for sharing such personal information.

Kathryn

 
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Old 09-05-2007, 09:03 AM   #2
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JtMac24 HB User
Re: Crohn's and a Sphincteroplasty?

I just joined this message board and I've been searching the threads for someone who has similar problems to mine. It sounds like I'm a male version of you. Below is a post I left yesterday to try to explain my problems to the group. Please write back with your experience since your original post.

Thanks.

I'm a 54 year old man with inactive Crohn's disease. In 1983 I suffered terribly from extremely painful anal abscesses, fissures, and a fistula that tunneled its way to the surface of my buttock as a result of the disease. I had three surgeries including a fistulaectomy which left my buttock disfigured, my anus & rectum scarred, and even required my surgeon to cut the internal sphincter to resolve the problems. The resulting scarring from the surgery left me with pencil-sized stools and fecal leakage. The surgery substituted agonizing pain with disfigurement and the humiliation of dealing with my inability to stop soiling my underwear. A good swap in my opinion. I have happily dealt with those problems for over 20 years now.

Sometime after the surgery I became aware that my disease became quiet everytime I was put on Flagyl or other antibiotic for subsequent infections. Finally, after many years of 10mg of cortizone daily to control my disease, I demanded my doctor take me off the steroids and put me on a low dose of antibiotic for a short time to try to control the disease. He refused until I told him I would find a doctor who would. He finally agreed and put me on a daily low dose (250 mg) of erythromycine (which I believe is commonly used to control acne). Within six months my disease was completely quiet. My disease was finally in remission!! I stopped the antibiotic and I've been off all medication for close to ten years now. Hooray!!!

Earlier this summer I began to suffer from urgency again. This time, there was no diarhhea or bloody stool, but, instead, constipation with a great deal of pressure and an inability to distinguish my urinary sphincter from my bowel sphincter. I had a colonoscopy in June which showed no evidence of disease. But, my physician had to use a pediatric colonoscope because of a stricture that's formed. While the stricture was always there since the surgeries in '83, it was minor and never a problem. I could always easily evacuate and was never constipated. Also, the fecal leakage had worsened. And I've developed some small hemroids. My doctor suggested I try Rowasa for two weeks, but he & I are both relatively sure I will need surgery to fix my problems.

I meet with a surgeon next week to discuss my options. I am relatively certain that dilation is in my future. However, I need to stop the fecal leakage. It's become a real problem. Previously, a small wad of strategically placed toilet paper would usually keep me clean. That is no longer the case. I believe I am a candidate for anoplasty.

Does anyone know what I am in for? How long is recovery? Will a colostomy be necessary? Will I lose sexual function? Having lived through the pain I did in '83, I am sure I can take the pain again of the surgery (or at least I hope I can). But, am I simply substituting one set of problems for another set?

If anyone has experience with anoplasty & rectal dilation, I'd appreciate your thoughts. Thanks to all in advance.

 
Old 09-05-2007, 11:56 AM   #3
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kath212 HB User
Re: Crohn's and a Sphincteroplasty?

Hi...

It does sound like we suffer from the same issues. It can be quite frustrating, can't it?

As for me, really the Crohn's is not a problem except for the abcess/fistula issue 3 years ago. I truly flare maybe once a year, and a round of prednisone or Entocort usually nips it quickly. I do take immodium when needed, but really, that is a small price to pay.

I saw the surgeon a month ago, and unfortunately he told me that he would not suggest the surgery unless I was at my wits end and ready to accept a colostomy as a possible outcome. He agreed with the doctors in my area on the fact the disease makes healing difficult and could in fact deteriorate the muscle even further if it is compromised. I have 2 tests in October to see if he can pin a percentage on the chances of things going wrong/right if I were to choose to go through with it. I also have an appointment with a colostomy nurse so that I can have all of my information when I sit down and decide what to do.

Needless to say, that is a very big disappointment. I had high hopes of trying to correct this- and like you, the pain of surgery would be worth dealing with for a result of fixing my fecal incontinence. There are days that I think that a colostomy has to be better than this- the drainage and the rectal/anal pain. And then there are days when I remind myself that it could be worse and to just deal with it. My husband is wonderful in supporting me in whatever I decide, so that makes it easier in the end.

Let me know how you are doing...
Kathryn

 
Old 09-05-2007, 12:32 PM   #4
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JtMac24 HB User
Re: Crohn's and a Sphincteroplasty?

Grin & Bear it... Suck it up!! That's been my mantra for 2 decades. I was just in a meeting at work and had a bit of gas. After the meeting I ducked into the men's room to discover more "soiled" underwear. It's disgusting! Previously I didn't have fecal leakage to this extreme, except when I first had the fistulaectomy. Anyway, I go to the surgeon on Sept 17th. I'll write you back after that with my options. He's apparently a very conservative surgeon, so I expect he won't offer anoplasty as a solution either. I have two problems though. The stricture he can fix with dilation, I believe. Whether that causes more incontinence is to be seen.

Thanks for listening. My wife was very glad to hear I found this website. As supportive as she is, I can get very depressed and sometimes she doesn't want to deal with me. And I can't blame her.

Mac

 
Old 09-05-2007, 07:30 PM   #5
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robyns686 HB User
Re: Crohn's and a Sphincteroplasty?

HI Kathryn-

I am 39 yrs old with crohn's disease and I had a very traumatic birth 2 yrs. ago. I suffered a 4th degree tear and subsequently a very poor repair which lead to a rectovaginal fistula. My crohn's is pretty quiet for the most part and has been for 17 years since I had a bowel resection. About 4 months after the traumatic birth, I had a sphincterplasty to repair the torn muscle and try to close the fistula. The repair worked in terms of anal function, but unfortunatley the fistula is still there. My surgeon never once suggested that I not get the surgery because of crohn's. I have never had any perianal disease, so I don't know if that makes a difference. I would consult with a few surgeons if I were you. He and a couple other surgeons have mentioned however that any additional surgery for the fistula maybe risky because of my crohn's so I have held off on that. Needless to say, it has been a very difficult 2 years full of ups and downs and bouts with depression. I healed from the surgery though, but it wasn't easy at all. It makes a bowel resection seem like a walk in the park. I still have some degree of urgency that I never had before and the very occasional leakage of gas. I take imodium and colestid to control diarrhea and that works great. Other than those meds, I don't take anything else. Lots more to say I'm sure but if you have other questions, I'm here. So sorry you have to have these problems too.

 
Old 09-05-2007, 08:10 PM   #6
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robyns686 HB User
Re: Crohn's and a Sphincteroplasty?

Kathyrn -

I forgot to mention another very important treatment that my surgeon mentioned called sacral nerve stimulation. She said it was to become the gold standard of treatment for incontinence and told me never to worry about my control because this is a very promising non-invasive treatment. You should do a search for it and you will find lots of research. I believe it is in the process now of FDA approval. There is a women on the "I survived Sphincteroplasty part 4" named clancey that has had the procedure and has had success. Has your surgeon mentioned this procedure?

 
Old 09-06-2007, 06:21 AM   #7
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kath212 HB User
Re: Crohn's and a Sphincteroplasty?

Hi Robyn...

I have never heard of that treatment- I will definitely look it up and see what I can find. The surgon I saw was typical- no bedside manner and talked to the interns (teaching hospital) more than me. Unfortunately, he is considered the best at this type of surgery in the Boston area, so I'm at a loss regarding finding someone for another opinion. Do you mind me asking where you are located?

Thanks for the insight!!!
Kathryn

Last edited by moderator2; 09-06-2007 at 07:34 AM.

 
Old 09-06-2007, 09:28 PM   #8
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Re: Crohn's and a Sphincteroplasty?

Kathryn -

I live in Minneapolis. We have a great pelvic floor center here and the rectal surgeons are all wonderful within the practice. How did you here about your surgeon? I would think that in a large city like Boston there would be more than one who was competent in this type of surgery. Could you ask around in the circle of obgyn's? Sometimes they are very familiar with the surgeons who do sphincteroplasty's because of the association with birth trauma. My ob is the one who referred me to my surgeon. I also got a good reference from an ob nurse.

There are bad dr's out there even when they are highly regarded. I went to a GI dr that was voted one of the best in mpls and she was actually one of the worst I have ever been too. I also went down to Mayo clinic after I had my sphincteroplasty to discuss the reoccurence of the rv fistula. I met with the head of colon and rectal surgery and wow was that a horrible experience. He told me I would need a colostomy to deal with the fistula and sent me to the colostomy nurse for consultation. He even suggested that it would be permanent. I ran out of there so fast in a major depression. My other surgeon in mpls insisted that a colostomy was not necessary and to give the fistula more time to heal to see what happens. The fistula has healed a great deal to a very tolerable level. My point is that this was a surgeon who was the head of the department and had years of experience and his recomendation was horrible and, I think, cruel. Hang in there and try to find more surgeons.

 
Old 09-07-2007, 05:31 AM   #9
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kath212 HB User
Re: Crohn's and a Sphincteroplasty?

Robyn-

Have you tried Remicade for your fistula? When I had my anal fistula that wouldn't heal for over a year, I did the Remicade infusions, and let me tell you- it worked, and it worked fast.

Kathryn

 
Old 09-18-2008, 09:03 PM   #10
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Turtle354 HB User
Re: Crohn's and a Sphincteroplasty?

Hi all. This is my first time posting, but I recently had an anal sphincteroplasty and was looking for information on healing (to no avail), and thought I could add some input to this post. I am a 23 year old female, who has Crohn's and had a fistulotomy in 2003 that damaged roughly 1/3 of my sphincter. After getting fed up with fecal incontinence I decided to meet with my doctor about surgical options. My Crohn's is completely under control and after a colonoscopy the surgeon said that a sphincteroplasty would probably be successful, and there was only a 1% chance of it making it worse. I had the surgery 6 weeks ago and the wound is now ALMOST healed. I went in for surgery on a Friday morning, and was released from the hospital on Monday evening. I had a catheter and was not allowed to eat anything for 3 days, and then started a low fiber diet. Between the catheter, no BM's and IV antibiotics, they said I should be relatively safe from infection. The worst part about the surgery was the constant pain and nausea. No amount of pain killers seemed to kill the pain, and the inability to eat caused the pain killers to upset my stomach and I would often throw up after taking them. When I returned home on Monday evening my mother pretty much took constant care of me. While the repair work from the sphincteroplasty remained in tact, shortly after I got home and was moving more the surrounding stitches burst, leading to a large open wound (which the surgeons said happens 90% of the time). This was probably the most painful part, and led to a much longer recovery period. After about 2 weeks I could do things for short periods of time (sit, walk, stand etc.) and after 4 weeks I started a more normal routine. At 6 weeks I still have not tried working out, and there is still occasional pain, but the wound is now very small and hopefully will be completely healed soon.

The surgeon said that everything looked extremely good, and that incontinence might be worse for up to 3 months after the surgery, but it is already better than it was before. So far I am happy with my decision for surgery, and hope that everything continues to improve. I would seriously consider the length of recovery time and very limited physical activity you will be able to do before having the surgery, but I literally couldn't stand the incontinence anymore and was willing to do anything. I think one of the most important factors for me was that I knew this problem wasn't going away, and the chance of a successful surgery was only going to deteriorate with age.

I hope this post helps, and if there is anything else I can help you with please let me know!

 
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