sphincter surgery

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gela
Regular Member


Date Joined Jun 2005
Total Posts : 133
   Posted 9/12/2008 1:05 PM (GMT -6)   
i had step 1 done in july.  while he was in there, he noticed i had a lot of scar tissue that was caused from a 4th degree laceration during childbirth.  he said he would need to clean up the scar tissue or else when i get the takedown i will have incontinence.  i am going in about a week for the sphincter surgery.  has anyone had this done and what are your experiences?  he said i wouldn't be able to stand for 10 days, just lie down or be reclined.  when did you go back to work?
Diagnosed in 1999, hospitalized once.  Not responsive to meds.  Currently on 12 Asacol, , 8 ampules of Gastrocrom, 6 grams Colestid, flagyl, remicade for my UC.  Also have migraines and take B-4, B-2, for the prevention of them.
Deciding whether or not to have surgery at this time.


mommyphotographer
Regular Member


Date Joined May 2008
Total Posts : 159
   Posted 9/13/2008 10:55 AM (GMT -6)   
wow........that sounds so major , you have to lay down for 10 days... I will be praying for you. I havent had this done to me so i dont have any advice. but i will pray for you to recovery from this fast........
 

Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted Yesterday 1:33 AM (GMT -6)   

Oh my God, gela, I had the same thing happen to me.  I had my son back in 1986.  It was a natural childbirth and the doctor gave me an episiotomy.  I ended up tearing so bad with a 4th degree laceration.  Back then I developed a rectovaginal fistula.  I was in the hospital for six days with an infection.  I kept telling my doctor there was something wrong down there, but he ignored me saying it was just my uterus contracting - trying to go back to normal.  I knew he was wrong.  By the time I got home, I freaked out because I had stool coming through my vagina.  I was only 22 at the time.  Over time, my fistula healed.  But now in my 40s, I've had some problems with leakage.  When I talked to a colon/rectal surgeon who I went to see for a colonoscopy, he took a look at me and couldn't believe what I told him happened so many years ago.  I ended up having a very thin layer of tissue between my rectum and vagina.  He said he could help me.  Before my surgery, doctors ran test and noticed I had very little muscle and had nerve damage.  So, I had surgery in June 2007, developed an abscess almost immediately after the surgery, so I was back under the knife.  I spent two weeks in the hospital trying to recover.  By the time I went home, I was back in the hospital to have everything repaired because it had all fallen apart.  I received a temporary loop ileostomy July 2007.  I was only to have it three months, but here it is 14 months later.  My fourth surgery was in October 2007 to once again try to fix a fistula by doing a z plasty or flap.  After four surgeries with my doctor, I decided to find someone else.  I went to the Cleveland Clinic.  I wanted a women's perspective because my male doctor was just too proud of his work with the z plasty/flap.  I ended up with this "bulge" down there that to me, even though my husband and I will be the only ones to see it, bugs the hell out of me.

To make a long story short, I was feeling pretty good about my visit to the Cleveland Clinic.  My new doctor went in to fix the rectovaginal fistula in May 2008.  By July, it seemed to look like it healed, but she wanted to put me under and get a better look.  Unfortunately, it still has not healed.  Before putting me under in August, my doctor lined the head of gynecology at CC to see what she could do to get rid of the bulge I despise.  This gynecologist was going to be present in the OR as well as bringing in a plastic surgeon to do their part.  Because my fistula did not heal, the doctors did not attempt the surgery.  I was devastated.  My doctor had me stay over night so she and the gynecologist could consult my husband and me of options.  They told me to really think about what is important to me.  My doctors don't think I have a good chance of being continent because I no longer have the muscles needed to keep me continent.  Evidently, I no longer have a sphincter?  Furthermore, my doctor was shocked as to how much scar tissue I have.  I cried so much because I thought I would have to have my ileostomy forever.

A few days after returning from the CC, I decided to quit feeling sorry for myself and do lots of research on my options.  I read either on this forum or the J-Pouch forum of someone in Canada who is going through artificial sphincter surgery.  It will be interesting to find out her results.

How long ago to you give birth?  Was this just recent or years ago like me?

Hope to hear from you.


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 737
   Posted 9/16/2008 6:17 PM (GMT -6)   
so ohio what did u decide? i have my ileo due to recto vag fistulas as well, they were hoped to heal but obviously theyr not. so do u have a perm now?
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 9/16/2008 8:11 PM (GMT -6)   
Hi Praying4healing!
 
I still have my temp loop ileostomy which I guess I can keep forever.  I'm giving myself a year to lose weight because I was told that you have to be right in your weight range to have a K-Pouch.  I am considering it.  I have a new local Colorectal Surgeon who told me not to give up.  So, I'll wait and get myself healthy.  Lower my cholesteral, lose weight, etc.  I now have a hernia which just adds another problem.  I'm trying to walk several nights a week as well as some light weight lifting to tone.  I'm really looking forward to a year from now.  I hope I'm in much better shape.
 
 

Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 9/23/2008 8:08 PM (GMT -6)   
Gela, how are you doing these days? Did you have your surgery?

Mary

candyland
Regular Member


Date Joined Nov 2007
Total Posts : 98
   Posted 9/25/2008 11:55 AM (GMT -6)   

Hi Everyone!

OMG - I couldn't believe my eyes when I was reading Gela and Ohio43's posts!  I too, had a 4th degree tear during the childbirth of my first child in Dec. 1996. I was doing great for a few hours with my midwife and then the baby got stuck and she ended up calling the doctor in.  He cut and I immediately tore.  After I healed I never gave it another thought until all the horrible uncontrollable explosive D started with the UC four years ago.  At some point I discussed it with my GI and he considered it and then dismissed it.  Later, when I met with my surgeon, I brought it up again.  He did numerous tests to test my sphincter muscles, all of which I apparently passed, and I went ahead with the 2-step j-pouch surgery.  I am now almost 5 months post takedown and my only complaints are joint pain/arthritis AND INCONTINENCE!!!  It's not horrible like it was with the UC.  It's almost gentle, like I don't even know it's happening until I feel itching or burning down there.  It's like I'm too relaxed and nothing's holding back the poop.  It's worse at night when I sleep.  I don't wear diapers, but I have to wear pads ALL the time.  I probably change my pads 2 or 3 times a day (usually late in the afternoon or into the evening) and another 2 or 3 times overnight.  I take Lomotil and Immodium, but I'm not sure they help.  Metamucil wafers definitely help, but not enough.  I haven't brought it up because I'm sooooo happy that I'm not sick anymore and I keep thinking that maybe it's temporary and it will get better, but just this morning I was telling my mom about it and that I probably need to make an appt. to see the surgeon and discuss it. 

PLEASE keep us posted on what you find out.  If I let myself, I could get very upset about this, but I love, Love, LOVE not being, feeling, acting sick anymore.


Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 9/29/2008 11:56 PM (GMT -6)   
Hi Candyland!

It is definitely unfortunate to hear what has happened to us just because we had babies. I'm glad, however, that I'm not alone out there. When I started with all the surgery, I wondered how I was going to find people out there that have had the same bad experience. I didn't know how to research it. However, I found many sites and the forum has helped tremendously.

Bummer that "gela" posted once and never came back.

If you hear of any new surgeries, etc., please let me know. I'll keep you posted with any findings too.

Thanks a bunch! Mary in Ohio

candyland
Regular Member


Date Joined Nov 2007
Total Posts : 98
   Posted 10/2/2008 11:05 AM (GMT -6)   

Hi Mary. 

I've been thinking about this thread ever since I first read it.  Some of the things you posted - like stool coming thru the wrong opening - I've had this experience (I think) a few times but since it didn't continue I wondered if I had imagined it.  It happened after the birth of my children and I think it's happened a couple of times both pre and post op for the UC.  I would really like to hear back from gela if she had this sphincter surgery.  I know that my surgeon had talked about repairing those muscles at one time, but then he determined that they were strong enough on their own after doing a series of tests.  I don't necessarily agree with him.  I think the non-stop 3-year UC flare of violent, spastic, explosive diarrhea took it's toll on my sphincters (along with other parts of me) and that's why I'm having the incontinence problems now.  I love my j-pouch and I could live with some discomforts, but I don't want this to continue and I wonder if this is something I should look into.  Do you know of any websites or forums I could look into about this?

Thanks for being out there!  -Laura

P.S.  gela - come back!


gela
Regular Member


Date Joined Jun 2005
Total Posts : 133
   Posted 10/2/2008 8:02 PM (GMT -6)   

sorry it took me so long to get back.  yes i had the surgery 2 weeks ago.  it hurt like $%^&

but as long as i don't have incontinence i'll be happy.  ohio, were any of those surgeries to repair the sphincter?


Diagnosed in 1999, hospitalized once.  Not responsive to meds.  Currently on 12 Asacol, , 8 ampules of Gastrocrom, 6 grams Colestid, flagyl, remicade for my UC.  Also have migraines and take B-4, B-2, for the prevention of them.
Deciding whether or not to have surgery at this time.


candyland
Regular Member


Date Joined Nov 2007
Total Posts : 98
   Posted 10/3/2008 2:44 PM (GMT -6)   

Hi Gela and welcome back!  I'm so sorry the surgery was painful.  Did your surgeon feel that it was successful?  How long were you in the hospital?  Have you been able to stand or do you have to recline like he said? How long before you know if it worked?  Sorry for all the questions.  I'm so curious about this because of my situation.  I think Mary (Ohio43) will be glad to hear from you too.  As far as I can tell, we are 3 of a kind so far, but I'm sure there's more to this club.  As I said, welcome back and I hope you're feeling better!  -Laura


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/3/2008 10:42 PM (GMT -6)   
Gela,
 
Best wishes for a speedy recovery.   Hope you are feeling better each day.
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


gela
Regular Member


Date Joined Jun 2005
Total Posts : 133
   Posted 10/6/2008 9:24 AM (GMT -6)   

i'm not surewhen i'll know if it's successful.  i; go to the doc tomorrow.  my incisions are open now, which scares me, but he says that 90% end up that way.  i'm hurting pretty bad a t times still, even though it's been 2 weeks.  so much for the "couple of days of soreness."  he should have to have the surgery and then he'll know what to tell his patients!

 

it still hurts to sit.  i sit on a pillow or to the side at work now.  i'm praying for healling!


Diagnosed in 1999, hospitalized once.  Not responsive to meds.  Currently on 12 Asacol, , 8 ampules of Gastrocrom, 6 grams Colestid, flagyl, remicade for my UC.  Also have migraines and take B-4, B-2, for the prevention of them.
Deciding whether or not to have surgery at this time.


Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 10/8/2008 10:37 PM (GMT -6)   
Hi Gela and Candyland!

Glad to hear from you both. I've been working like crazy and trying to keep my mind off of surgery. Every night I go to bed and try to do Kegal exercises. I feel so guilty if I'm not squeezing - thinking...this could be the one that will give me the control I need. Isn't that awful to have to think that way?!

I don't know of any forums or particular sites. Every once in awhile, I just surf the internet - Googling here and there. It seems to help.

I'll write more later. Take care and stay pain free. : )
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