TE, thanks so much for your info. That is a good idea, and is closer as another option. I will definitely look into that too-on my research list!
It's truly day to day, and tonight seems to be a bad one (a bursting day), and from corresponding with Liz and reading from others on other posts, and all the research and ino gained from 2 drs i have sought out here (met with a colorectal last week and plastic surgeon 2weeks ago),that as much as the reconstruction surgery freaks me out right now, and may not be ready to jump into that, despite the amount of pain im having, I for now have decided that I do need to get it drained ASAP for some relief and open it up to see if any improvement. And meantime, continue to gain more info and plan on either staying or going Cleveland/Mayo for gracilis surgery.
In responding in another post, it inadvertently turned into my story in a Cliffs Notes version sort of way, but cathartic too a bit. And thought I would include it here as well, as it has been a long while since Ive been back on this site, and an effort to help/share with others. I originally reached out in a great need for help when things suddenly became their worst, but I have also been reminded of the incredible support/resources this group can bring and I quickly felt connected again and value the communication with others who can truly relate in so many similar ways-so thankful for that.
Here I am below:
I had my jpouch created in 1990 (I was 12) and 6 months later, developed an abscess rectovaginal fistula. I had several little surgeries to heal fistula including a seton, fistulotomy that were unsuccessful, and finally temp. ileostomy to divert it in order to heal. I had developed a defect vaginally that still allowed drainage. In 1998, I had an advancement flap done as vaginal reconstruction to correct the defect, and then I no longer had drainage vaginally. In 2001, I decided to try again at reconnection of Jpouch in the hopes that it would work the second time. I had my temp. ileostomy taken down in 6/2001, and it went great, no drainage vaginally. However, 7 weeks later, I developed an abscess and rectovaginal fistula- again. I immediately went into surgery to drain abscess and I got another temp. ileostomy.
At this point, I was pretty heartbroken that it did not work and this complication occurred again. And I was in neutral mode for 10 years until I finally decided to make my temp. ostomy permanent in 2011. I was not up for trying to connect my jpouch again, and I wanted to have the better quality of life that my ostomy gave me. Plus the fact that having your jpouch in you being unused and dormant, causes it to get inflamed and causes pressure/pain which was increasing over time, as well as mucous drainage. And I wanted the pressure and leakage gone most importantly as well.
I had my jpouch removed June 2011 with permanent ileostomy. But unfortunately, a few weeks after my jpouch was removed, I began to have drainage vaginally. My anus was sewn up in my jpouch removal surgery, and it healed up very well, and did not cause me any pain. I also should add that my anus did not ever close completely; There is a tiny hole that did not ever close completely (even though my surgeon had said that eventually it would), drainage comes through there slightly too, but mostly vaginally. I did not have any pain/pressure from anus initially, as it wasn’t until about 6 months to a year later that the pressure began to increase to an uncomfortable state and the drainage has always been present. And then in January 2013, pressure began again in a more intense way and the drainage changed to a very foul smell- as this is usually a sign of infection when pressure increases and odor changes of drainage. As this has happened before, eventually subsides, I didn’t give much concern/attention to it. However, unlike in the past, it never died down again and near the end of this past March, it became much more intense and the drainage was the foulest odor ever- extremely strong.
In the past month, more symptoms have popped up that I haven’t had before like: random fevers, fatigue, intense pressure that comes and goes, and overall not feeling as well. But some days better than others.
I spoke with my previous colo-rectal surgeon who’s known me since I was 12, at the end of March when symptoms intensifed to a degree I've never felt. My previous colo-rectal surgeon has moved away, but we corresponded by phone/email when my symptoms began to worsen in March, and he suggested the flap reconstruction procedure (butt, leg, or abdomen) to heal the pelvic cavity, and that I needed to see a plastic surgeon for it and the procedure would be done along with a colo-rectal surgeon. I met with a plastic surgeon he recommended the gracilis flap and the surgey would be done along with a colo-rectal surgeon as well. So that is why my original post was in search of a great colo-rectal surgeon in Atlanta. Since then, I have seen another colo-rectal surgeon that is in the same practice as my old one; He is a great surgeon- not so great bedside manner, but difficult to have best of both. I really like my plastic surgeon- very skilled and knowledgeable and very personable as well. In the past 3 weeks I have had 2 appointments with each of them- one, to initially meet and discuss, and second one- to talk more in depth about my situation and answer more questions I have developed over the course of this month in learning and researching more information on this procedure.
And because I’ve had recto-vaginal fistulas on both attempts to reconnect jpouch, I have questioned whether or not the fistula is still there, did it need to be healed/dealt with before I had jpouch removed? And I assumed that was why I was leaking drainage vaginally- but maybe I don’t have one anymore, and like Liz said, I am leaking vaginally, because that’s the main way the drainage can come out. And I inquired about the fistula being healed/corrected before or during jpouch removal surgery because my other thought/concern is that if the fistula tract is contributing to the pelvic cavity not healing completely after jpouch removal, or…if its totally unrelated whether I have one or not.
So that is my story, all up to date- I have not been on jpouch group in awhile- since 2001, and used to be so connected to so many, and slowly lost touch during my hiatus of running on automatic phase (completely enjoyed life though! Just tired of surgeries and enjoyed life with my temp ostomy again- avoiding making decisions on all that for awhile!- until I had to).
So I am in decision mode and trying to plan for the summer, as it is an opportune time for surgery when you’re a teacher; But not sure if I want to go through with both procedures of having anus opened up and drain pelvic wound, and gracilis reconstruction. Or, just opening up and draining for now, leaving it open and seeing if any improvement comes with that. Everything I have learned and read regarding the gracilis procedure is that it is a long, painful, and arduous one, and I don’t know if I want to jump into that yet-or make a decision based on the opportunity of time that is coming up when school is out in 2 weeks.
......But thankful for the knowledge to be proactive about and ask about it-will go through whatever needed for healing.