- Joined
- Jul 27, 2013
- Messages
- 115
I really hope this post stays where most people will see it!
According to my IBD GI, who is not the best, thus this inquiry, I have likely had a recto-vaginal fistula for nearly 7 years now! It can create the lymphocytic infiltration, microscopic colitis, I have been unable to control. GI didn't explain why or how but it can. Thankfully my husband has been my best advocate. GI jokes when will he become MD b/c he is smarter than her. Not funny as the patient! I need the very best physician in FL (anywhere in FL) to find this hard to detect fistula so it can be fixed. I don't know how to determine if Cleveland Clinic (Miami) colo-rectal (vaginal fistula) surgeons or Mayo Clinic (Jacksonville) would be best? Anyone know?
Background:
Feb.2007- Pregnant. Diarrhea & Formed BMs.
Nov. 2007- Daughter was 2 weeks overdue. No OB in room while my 28 y/o 125lb frame pushed for 2 straight hrs @ 9.5cm dialated. Even used towel to tug-of-war baby out w/RN. Nearly 24 hrs after induction, 8.5lb baby girl was born. First I saw of OB, was to cut level 4 episiotomy. Daughter Head Circumference <100%, size of 3 month old head. Immediately tested for hydrocephaly. Thankfully negative.
Pospartum- D began daily. 1-2x/day. Three PCPs said IBS. Sexual contact was uncomfortable, once allowed after 8 weeks. It was painful oftentimes. GYN dismissed concern.
Dec.2010- Celiac Dx. Still mentioned vaginal discomfort.
Feb.2011- Pregnant. Diarrhea 8-10x/daily.Went 100% Gluten-free, dairy-free, no help. UTIs always positive despite 40 long weeks of antibiotics. UTI cultures would grow rectal bacteria (klebsiella) and Group B Strep. I took every precaution to stop UTIs, nothing worked. OB/GYN insisted no probiotics b/c I didn't take them prior to pregnancy...but 40+ weeks antibiotics ok! OMGsh, what I know now.
Nov.2011- induced with loads of petocin. Penicillin IV because UTI. Son born, only 7lbs 3oz, healthy. Easy delivery but OB said to tear vs cut. Tore to level 4°. Ten days postpartum, one stitch tore. OB/GYN did nothing b/c it wasn't bleeding.
Postpartum- Diarrhea continued. Chronic vaginal discharge began, BV. Everyday for past three years I have chronic BV. Puss exits each time I sit to pee or push gas out or move bowels. Tons of puss with each BM.
Feb.2012- microscopic colitis Dx.
Aug.2012- IBD expert at UF says, "I think you have rectovaginal fistula and maybe Crohns". No Crohns, scoped 4+ times, endoscoped 2+ times, pill camera, Prometheus IBD tests negative. GI finally said, " I cannot find Crohns or prove it".
MRE (MRI w/contrast) does not always pick up minute vaginal fistulas. Time for more rectovaginal searching w/ongoing symptoms. But how? Who? Where?
My IBD GI says for 1 pt she stuck oatmeal and KY jelly in rectum and KY in vagina to find fistula. She has tried that w/ one pt and her "own recipe". I do not want to play as her mere 2nd guinea pig.
Please HELP this momma who had poor obstetric care by local "high risk pregnancy" group. I am ready to go live on TV show over this. It has been insane. I need best colorectal/vaginal-rectal expert. I may call Cleveland Clinic in OH directly to find a colorectal specialist who did fellowship at CC, but now practices in my area?!
Thank you for reading.
Irie
According to my IBD GI, who is not the best, thus this inquiry, I have likely had a recto-vaginal fistula for nearly 7 years now! It can create the lymphocytic infiltration, microscopic colitis, I have been unable to control. GI didn't explain why or how but it can. Thankfully my husband has been my best advocate. GI jokes when will he become MD b/c he is smarter than her. Not funny as the patient! I need the very best physician in FL (anywhere in FL) to find this hard to detect fistula so it can be fixed. I don't know how to determine if Cleveland Clinic (Miami) colo-rectal (vaginal fistula) surgeons or Mayo Clinic (Jacksonville) would be best? Anyone know?
Background:
Feb.2007- Pregnant. Diarrhea & Formed BMs.
Nov. 2007- Daughter was 2 weeks overdue. No OB in room while my 28 y/o 125lb frame pushed for 2 straight hrs @ 9.5cm dialated. Even used towel to tug-of-war baby out w/RN. Nearly 24 hrs after induction, 8.5lb baby girl was born. First I saw of OB, was to cut level 4 episiotomy. Daughter Head Circumference <100%, size of 3 month old head. Immediately tested for hydrocephaly. Thankfully negative.
Pospartum- D began daily. 1-2x/day. Three PCPs said IBS. Sexual contact was uncomfortable, once allowed after 8 weeks. It was painful oftentimes. GYN dismissed concern.
Dec.2010- Celiac Dx. Still mentioned vaginal discomfort.
Feb.2011- Pregnant. Diarrhea 8-10x/daily.Went 100% Gluten-free, dairy-free, no help. UTIs always positive despite 40 long weeks of antibiotics. UTI cultures would grow rectal bacteria (klebsiella) and Group B Strep. I took every precaution to stop UTIs, nothing worked. OB/GYN insisted no probiotics b/c I didn't take them prior to pregnancy...but 40+ weeks antibiotics ok! OMGsh, what I know now.
Nov.2011- induced with loads of petocin. Penicillin IV because UTI. Son born, only 7lbs 3oz, healthy. Easy delivery but OB said to tear vs cut. Tore to level 4°. Ten days postpartum, one stitch tore. OB/GYN did nothing b/c it wasn't bleeding.
Postpartum- Diarrhea continued. Chronic vaginal discharge began, BV. Everyday for past three years I have chronic BV. Puss exits each time I sit to pee or push gas out or move bowels. Tons of puss with each BM.
Feb.2012- microscopic colitis Dx.
Aug.2012- IBD expert at UF says, "I think you have rectovaginal fistula and maybe Crohns". No Crohns, scoped 4+ times, endoscoped 2+ times, pill camera, Prometheus IBD tests negative. GI finally said, " I cannot find Crohns or prove it".
MRE (MRI w/contrast) does not always pick up minute vaginal fistulas. Time for more rectovaginal searching w/ongoing symptoms. But how? Who? Where?
My IBD GI says for 1 pt she stuck oatmeal and KY jelly in rectum and KY in vagina to find fistula. She has tried that w/ one pt and her "own recipe". I do not want to play as her mere 2nd guinea pig.
Please HELP this momma who had poor obstetric care by local "high risk pregnancy" group. I am ready to go live on TV show over this. It has been insane. I need best colorectal/vaginal-rectal expert. I may call Cleveland Clinic in OH directly to find a colorectal specialist who did fellowship at CC, but now practices in my area?!
Thank you for reading.
Irie
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