Desperate for answers someone please help me
Thu, March 08, 2012 9:52 PM
This will be a long story so sorry in advance. I have been suffering severe abdominal pain, vomiting, diarrhea, back pain and sweats for at least two years. I have been to obgyn's, emergency rooms and my family doc. I finally was diagnosed with endometriosis after a laparoscopy last year and had a hysterectomy, bladder suspension and my appendix removed in July. The pain has not only continued but has gotten worse, my ob suggested I see a gastero. i made an appointment but before I could go I suffered a bout of what I believe was bowel contents gushing from my vagina at 4 am and waking me up. I was scared and went to see a colorectal surgeon who preformed a cat scan with rectal contrast and a colonoscopy, he now says they were clear and that there is no way I have a fistula or Crohn's and that he had no idea what my problem is. I am still in pain and obviously I know something is wrong..Is it possible the scans missed a fistula and that I do have crohn's or is this endometrosis again or a post surgery complication??? I am desperate to get rid of this pain.
onseyeds1Joined Mar 8, 2012
Thu, August 02, 2012 10:33 PM
Reply posted for onseyeds1.
Hi There....
I am curious as to how you are doing now. I just read your post and it is very similar to my experiences as well. Approx 10 years ago, after being diagnosed roughly 9 years prior, I began to develop anal-vaginal fistulas. VERY painful and passing stool through them. At the same time I had anal-rectal fistulas. Not a happy time in my life. My insurance company denied the Hospital authorization to perform surgery to clean out the fistulas and put stints in to help heal. My saving grace was Remicade. At the time it was only on the market for a couple of years and I had just switched doctors per my insurance requirement. WOW! It healed the fistulas within 3 weeks time.
The diagnosis of the fistulas was pretty obvious visually and their exits/entries were confirmed via a scope and normal colonoscopy. I'm currently on a Remicade routine every 12 weeks, Pentasa and Imuran daily. During major flares I do get small lesions ... like canker-sores in the vaginal area. My Gastro and OBGYN did determine, jointly, that I have a form of Crohn's, vaginal Crohn's. Just like Episcleritis being a symptom it all is difficult to manage. Attached is a link that talks more about the vaginal impact. http://www.aafp.org/afp/2001/1115/p1725.html
I hope all is well.....no cure or major relief found on my end....just management.
Good luck!
djames32Joined Aug 2, 2012
Mon, July 16, 2012 4:09 PM
Reply posted for onseyeds1.
It's been a while since your post but I still wanted to respond. I believe you have a Rectovaginal fistual. I know they did scans and told you didn't but I think you do. I went through what you are going through and had the same scans and they told me the same thing. BUT they were wrong. It took my persistence and the aid of my GI Specialist to get the proper tests with dye's done.
summerydojJoined Jul 16, 2012
Mon, July 16, 2012 4:09 PM
Reply posted for onseyeds1.
It's been a while since your post but I still wanted to respond. I believe you have a Rectovaginal fistual. I know they did scans and told you didn't but I think you do. I went through what you are going through and had the same scans and they told me the same thing. BUT they were wrong. It took my persistence and the aid of my GI Specialist to get the proper tests with dye's done.
summerydojJoined Jul 16, 2012
Tue, June 19, 2012 12:18 AM
Reply posted for onseyeds1.
Have you had any colonoscopies? They are a real pain, but that is the most direct way to get a diagnois.
Joined Jun 15, 2012
Mon, April 23, 2012 8:22 PM
i believe a fistula doesn't always show on a cat scan, or colonoscopy. are you seeing a gi md or gi surgeon? I had much better luck when i saw a gi surgeon when i had a similiar thing happen.
glpeaceJoined Feb 21, 2011
Tue, April 10, 2012 7:50 PM
Reply posted for onseyeds1.
I had two surgeries -- the first one for a twisted colon then the next one 6 months later i didn't heal they operated again. Another colonoscopy later, the doc still didn't know so they did a genetic test which came back with the diagnosis of crohn's. It was expensive because my insurance didn't pay for it. Am I better...not yet but I am undergoing different treatments.
Good luck.
nozJoined Feb 27, 2012
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