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colovaginal fistula post-hysterectomy colovaginal fistula post-hysterectomy

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  #11  
Unread 05-02-2004, 12:12 PM
fistula

Anita, Wow, you"re lucky to have had no incision pain. Iwill ask my doc about mine. I see my Gp May 17.I had a barium enema to detect the fistula and luckily it was pretty clear though the written report said inconclusive. Then the colorectal surgeon did an exam and saw it. There were four surgeons present as there was confusion about whether or not to remove my cervix. The GYN surgeon was very concerned.A gynecological oncologist was supposed to be there to evaluate my cervix but my surgery was cdelayed 5 hours and he had to leave. It was very dramatic. They said it was one in a million that the fistula went directly through my os and caused no damage to my cervix. The general surgeon was evasive about my copious questions as he'd never seen a fistula like mine. They told me I was a textbook case andthey'd learn from me. Rather upsetting, yet I appreciated their candor and humility. Overall, I felt well cared for though it has left me shaken emotionally. MY Gp dropped the ball so I researched the general surgeon and referred myself. It's a very long and complicated story, not without humor (the general surgeon's daughter went to high school with our daughter and tells her friends that her dad is a dentist as she's embarrassed about all the colon surgeries). I had more rectals than I care to remember. So tell me more about your journey and what you learned along the way. I will add that my GYN surgeon diagnosedthe fistula through e-mail as she had moved 4 hours north. She's very special and will always hold a special place in my heart. How did you wait years? One month was torture to me.I'm guessing my symptoms were worse-- intense menstrual-like cramping that would wake me up at 3 a.m. Shelley
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  #12  
Unread 05-06-2004, 07:49 PM
colovaginal fistula post-hysterectomy

Hi Shelley -

My fistula sounds so much like yours. Mine came in someone at the top of my cervix and I'm not sure of the exact spot.

My problems all started a couple weeks after my hysterectomy. First of all, I had an extreme case of endometriosis and they could not decipher tissue during my hysterectomy and nearly cut my colon completely through. They were able to repair that and 3 weeks after that I start passing stool vaginally and also into my bladder and then my bladder started leaking vaginally. The first surgeon I saw want to take my entire colon out - imagine that . . . a couple of leaks in one area and he wanted to remove my entire colon. I preceded to get several other opinions and also went to the Mayo Clinic here in Minnesota. I took Cipro for 2 years waiting for inflammation to subside and to find a surgeon and get me to my repair surgery. All the surgeons that I saw had different opinions and I was dealing with insurance referral issues also. I finally had my surgery in January and I'm not certain that they located/resolved all the fistulas. I think that I have a recto/vaginal fistula as well that has not been resolved. I was in the emergency room again this weekend with a raging bladder infection. At this point I'm not certain where to turn as the surgeon that did my surgery in January seems very unfocused and not interested in helping me. The crazy thing is - he did not do one test prior to my surgery to locate all the fistulas - he just told me that they would take a piece of my colon out and whether it had one or one hundred fistulas they'd all be gone. Through this whole process - I did not have one rectal examine. I find it interesting with the contrast studies that you had done, since my fistulas seemed to have been located in the same area.
I was so strong mentally for the past two years and now am having a really tough time. I just don't know where to turn anymore.

When they did your visual rectal exams, were they able to see the area of the fistula?

I'm so excited to have found you - I've been looking on this site for two years for someone with a fistula like mine.

Were you on antibiotics during the time prior to your surgery?

I really appreciate all your information.

Thanks.

Anita
  #13  
Unread 05-08-2004, 09:00 PM
colovaginal fistula

Anita, forgive me for not being able to find your post to respond to your question. I'm so-o-o exhausted and such a novice with this computer stuff. Your story is shocking. I'm so sorry. I know I was surprised that I had no idea that an infection was brewing after my TAH until the abscess burst 6 months post-op. GYN said it was because the fistula went directly through the center of my os so there was no enclosed cavity to harbor it. It was open to the air. I still find it amazing that feces could stream through my vagina with no negative consequences. A friend said, "What a vagina!" Part of my hysteria in insisting upon an immediate repair was that my gyn said that if I delayed the hole could grow larger. Now I'm wondering if this is accurate. When I called the general surgeon at home on a Sat. night to find out what kind of diagnostic test I'd need, he sweetly asked, "Are you my patient?" and took me on. He's a real cowboy. Anyway, I spiked a 102 fever May 3 and gut-wrenching abdominal pain, severe diarrhea and I saw this wonderful cowboy surgeon the next day. He's not sure what's happening in my colon but urged me to get the colonoscopy he advised me to get earlier. The fever has since normalized, the pain is somewhat less but still there and the diarrhea so I'm worried and will get the colonoscopy. The fun never stops. He and I are concerned about another round of diverticulitis. I sure hope it was just a virus this week. Tell me more about you. At this point I'd be happy to have back my 4-7 BMs a day. This is insane, the darkest and most painful and confusing year of my 54 years on this planet. I live in the San Francisco Bay area. Hopeful and hassled. Shelley
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  #14  
Unread 05-09-2004, 04:01 PM
colovaginal fistula post-hysterectomy

Gee, Shelley . . .

I guess we both had a bad week. What a bummer - I hope that this is not all starting up for you again. Sounds like you found some good doctors that are on top of it. I hope that you continue to feel better.

Just wondering . . . before your fistula repair surgery, did you start having bladder infections? What antibiotics did they have you on and were you on them continuously?

I have developed a resistance to several antibiotics now, after being on them for two years. I can't believe that I'm still experiencing symptoms and infections after this colon resection. Right now, I'm on Macrobid and if this all continues I'm searching for a whole new group of doctors and starting from square one.

What I'm so deeply concerned about is, that I have so much scar tissue and that during my surgery the doctors were having such a difficult time getting through it all and deciphering tissue and if I do need another surgery I don't know what they will find. I'm so concerned about ending up with a colostomy.

Yes, talking about a dark and confusing year . . . my husband and I were talking about that over lunch today. The last two years have been the most unbeliveable for me. I can't seem to concentrate or focus and anything else and am so consumed with my health issues. I'm going into my third summer with such uncertainty. I don't want to travel too far from home but need to because our families our all out of state.

I live in the Twin Cities area (Minnesota) and just turned 43.

Keep me posted Shelley and I hope that you have a better week.


Anita
  #15  
Unread 05-09-2004, 06:31 PM
colovaginal fistula post-hysterectomy

At the risk of sounding uneducated, I have some questions. But first let me share what I have been through myself.
For 2 years I had rectal bleeding, and frequent bowel movements, along with bouts of constipation. Also frequent severe pains with my periods, and heavy bleeding sometimes. Which I didnt think much of since I had always had painful periods all my life.
I didnt go to the gyno because I thought the problems were stomach related, and therefore didnt need to go to the gyno. My doctor sent me for a barium enema, (which I hated) and it came out normal. Then my doctor sent me to a gastrologist ( whom said I had irritable bowel syndrome, and reflux); and treated me for those problems. Two trips to the emergency room with pain so bad that I went to my knees they still insisted it was just bad cramps.
I finally gave in and went to a new gyno and he sent me for a vaginal probe sonogram in which he found a large mass. I was told that I needed a lapro to find out what was going on, and to remove the mass on my ovary.. When he ( the doc) got in there he found the mass was as large as a basketball, and I had lots of endo, and it was attaching to my bowel and liver. I also had a cyst the size of a grapefruit on the other ovary.
I awoke in recovery to find out they had not done a thing, and I was to have a complete hysterectomy. I was crushed as I wanted more kids, but I went in 10 days later for the hysterectomy. I then awoke to find out he saved my left ovary, and didnt remove my uterus, just scraped the endo out and off my other organs. They removed the huge cyst and he told me that I would have to have a complete hysterectomy after I have another child, as they found precancerous cells in the cyst. I was scared but happy I could have another child..
Then after a year of fertility pills I got pregnant with my daughter and had diabetes with my pregnancy. And had to have a c section to have her. After I had her my doctor ( which was a different doctor since I had to go to a high risk specialist with this pregnancy) told me that they had a very hard time, as I had adhesions and my bowel was attached to the wall of my stomach and to have another c-sectin would be very bad for me. I would end up with a colostomy if I did.
OK I know this is long but I am getting there... I promise...

I then had my hysterectomy with my regular doctor (whom I adore) and informed him of what they said about cutting through my bowel with another surgery and the colostomy and all.. SO the hysterectomy went fine.. and no problems, but doc told me that I had endo everywhere again, and it was once again trying to attach to my other organs, as well as the scar tissue and that I was once again starting to have cysts on the remaining ovary so they took everything.

OK here is my questions. I recently about 4 months ago.. started having pain again.. and after another vaginal sonogram my doctor told me that it was the endo again... I was soooo frustrated, as I thought the hysterectomy would take care of that.. He took me off my hormone patch, and put me on femhrt which I believe is kind of like birth control, and it has progesterone.
My worries start here.. Lately I have been having frequent bowels again.. sometimes 4 or 5 times a day. I have an appt. in june, but I was wondering since the endo and adhesions had attached to my bowel and all before then could it again????... I am exhausted most of the time, and have asthma so I figure it is the asthma.. but had a sleep study done due to my fatigue. in which they said I have sleep apnea.
Reading this post confused me .. I dont know alot. I didnt go to college, only graduated from high school, and dont know what fistula is or flora or alot of other medical terms. . But some of the symptoms talked about I related to, and I was just wondering if yall could give me some insight to what it all means.

Do you think I should be concerned about the frequent bowels... I also have vaginal discharge and have felt like I have had a yeast infection for awhile now even though I have treated for it. I also have a hard time getting wet when dh and I are intimate. I dont really know if any of it is all related to one another, and I have been told that the intimacy thing is common after hysterectomy..

I will pray for you sister and all you are going through.. I dont want to seem insensitive to your problems I just want to know what it all means, as I dont know.. and worry it sounds a little like what I am going through.. So maybe I am wrong.. Please let me know... And if you think I should discuss it with the doctor.. or if maybe it is just regular symptoms of hysterectomy..

Thanks for listening... and your replies will be appreciated..
  #16  
Unread 05-09-2004, 07:45 PM
colovaginal fistula post-hysterectomy

Anita Michelle, I did not have any bladder infections, hence no need for antibiotics. I was lucky on that count. Sorry to hear about your resistance to them. I did have 6 months of yeast infections, eventually diagnosed as "stress diabetes" which resolved after 11 lb. weight loss and lots more fiber in my diet. I saw eight different docs during those 6 months. I am persistent.I also was terrified about the chance of a colostomy, as when I called the general surgeon the first time, he muttered something about a colostomy. Though he was just thinking aloud and reassured me it probably was not necessary for me, those words fueled my frantic daily calls to his office to insure I was not ignored. My GP had lost my chart so I referred myself to the surgeon, which heightened my anxiety.I get stirred up writing about it. Take a breath. I totally identify with your difficulty focusing, concentrating. I am frequently overwhelmed, have a tendency to think I'm doing worse when I'm improving, perhaps stemming from my feeling so healthy and strong just before the fistula symptoms began. Anyway, I am currently terrified that this latest setback could be the sign of further bowel inflammation and dare I say more surgery. It concerned me that two GYn said to remove my cervix and two said to leave it. One in favor of removal said that even one e.coli left in the cervix could start the whole infectious process over again and that haunts me. Did you keep your cervix with the bowel resection? Take care. Shelley
  #17  
Unread 05-09-2004, 08:08 PM
colovaginal fistula post-hysterectomy

WOW !

Bubblensmiles -

You have been through alot !!!

Good questions, regarding the fistulas. Fistulas are abnormal connections/communications that develop between organs. In my case my intestines/ bladder/vagina developed connections - little pathways like a blood vessel. In me, these connections developed because due to the severe endo my intestines either were nicked/weakened during surgery or developed some inflammation/infection and started leaking. So when my intestines started leaking into my bladder it caused me to developed severe non-stop bladder infections because of the bacteria. These conditions can also develop from diverticulitis or crohn's disease. I know in my case the endo caused alot of bowel problems because everything got stuck together and my intestines could not move like they needed to. There are many things that can cause the bowels to move frequently.

You might want to have your intestines checked again. Crohn's disease or diverticulitis or even a parasite infection can cause severe pain like this also and get you to the ER. I have several friends that are going through this.
I personally have not had any endo flare ups after my hysterectomy and am on an estrogen patch. Not having enough estrogen can cause the vaginal dryness. I just had my estrogen raised and the dryness went away within a week.

Take care and keep us posted.

You have been through way to much ! ! ! !

Keep in touch.

Anita
  #18  
Unread 05-09-2004, 08:40 PM
colovaginal fistula post-hysterectomy

Thank you so much for explaining all that!!!! I really appreciate it!! Sometimes I hate to ask because I feel I should know these things but unfortunately I dont.. LOL
Anyways.. I have been through more than I have cared to, but the Lord has been with me, and I have made it through.. Along with my little 19 month old miracle.. So I feel blessed.. I think maybe I will just let my gyno know about the bowel thing, and that I am having the dryness problem.. I think that is has been worse since he took me off the estrogen, but I cannot take it because of the endo......... It feeds it he says.. the progesterone fights it..
But maybe there is something he can recommend for me. I dont know.. I feel better now that you explained it all..
WOW I didnt know that could happen.. I mean the leaking of intestines and all... You have been through alot too!!! Praise God that we are alll here to help each other out!!!
thanks again..
~Missy~
  #19  
Unread 05-21-2004, 06:29 PM
colovaginal fistula post-hysterectomy

Anita michelle, Thanks for responding to Bubbles. I've been overwhelmed and exhausted. Saw my Gp Mon. She will refer me for a CT-scan and consult with the surgeon who performed my bowel resection to decide about the colonoscopy and she ran a number of blood tests, stool cultures, etc. to try to diagnose the cause of my continued abdominal pain. I should know more next week. Thanks for your concern and perspective that what I was calling incision pain was not normal 6 months post-op. It seems so obvious to me now, but I was lost in depression and unable to seek further help. I also have a corneal disease that impairs my vision 14 hours of each day (keratoconus) so my hours of being able to function in the world are limited. Geez, I'm a mess. So grateful to my DH and best friend and my sense of humor and now ...you. Hope you're hangin' in there. Update me on your latest. I'm interested and want to answer any questions you may have. Gratefully yours, Shelley
  #20  
Unread 05-21-2004, 06:48 PM
colovaginal fistula post-hysterectomy

Anita, I just reread your former post. In response, yes, the barium enema did expose the fistula. I saw it . It looked like a little black line. The radiologist said I was lucky as they often didn't show up on an x-ray and the origins and endings are difficult to see with precision. The report did say " inconclusive" however, which is why the surgeon referred me to the colorectal surgeon for a sigmoidoscopy. With that he could see the fistula through the os, though it was unknown until the surgery whether or not my cervix was damaged. Hope that helps. The surgeon first said he would remove my entire sigmoid as that was the "standard of care" with so much diverticulosis, but the colorectal surgeon urged him to remove the lower third and he did. My GYN surgeon said the sigmoid that was infected was very inflamed and hardened and it was obvious how much to remove but she performed a vaginal exam prior to the bowel resection and my vagina was "pristine". Anyway, take care. Shelley
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