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E
Hi,

I haven't been on here in a very long time. Even though I always told myself I would stay on to encourage others around how well I was doing (great pouch, successful pregnancy, etc), but life got busy and I didn't.

Of course now, I am having difficulties and am looking for support and advice on what to do - and this is where I always turn.

I have been dealing with what I thought was a bartholin glad issue for over a year (also had a similar issue right after take-down, but it seemed to heal after the drain). After it got so bad last summer, after seeing multiple doctors who said 'be patient', I finally had surgery by a GYN ONC to remove these bartholin glands and the surrounding infection this past March. Once she got in there, it was determined that that wasn't the issue at all - I had fistulas!

So the GYN ONC tried to help and close these fistulas, leaving me to recover from a much more major surgery, as if I had a 4th degree tear during labor. My body didn't react well at first at all (distended stomach, loss of appetite), but after a few weeks everything seemed to be working again - problem solved. Luckily, it has been checked again that I don't have Crohns...which is wonderful on many accounts, one especially being that I may have not recovered from what that other doc did.

Sadly, what she did didn't fix it at all. Around four months later, the fistulas were back. I have received a few opinions, but the one I got on Monday was that I didn't need a seton - I'm draining just fine, but that I should go to the best at CC and have revision surgery on my pouch.

I was brave once with my stoma/bag - I really never wanted to go there again. Has anyone had fistulas (mine seem to be from my 'rectum' area to just below my vaginal opening)? I don't want to leak in that area forever, but the idea of a bag again scares me. What if they can't reconnect? I don't know if I would rather just leak than have a bag forever.

I haven't been to CC yet, so we'll see what they say, but I'd love to go in there with good questions. IE LIFT surgery, TPN, anything else to fix the fistula without having a stoma...

Has anyone had one of these and still successfully had children after? I have one kid, but would love another...

Thanks for listening to me ramble. I'd love any insight.

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n/an/aMember
Sorry you're going through this, Elisha. I too have a fistula, in what sounds to be the same area. I did go to CC; I first saw Dr. Shen, who tried to close the fistula with doxycycline injections. Didn't work for me, but I understand it has worked for some other women. He then sent me to Dr. Hull, a CRS. She put in a draining seton, and also told me revision surgery was an option. However, it would involve a very large surgery which included a temporary ostomy. She also told me that there was not guarantee that neither a revision nor a pouch removal would guarantee that the fistulas would be "cured" or that I would not get more fistulas ... big sigh.

I do still drain now and then with the seton, but it has slowed down. While you may be draining just fine now, the seton will ensure that you do not abscess in the future. It seems as though most surgeons like to have a seton in place prior to surgery, as it helps to settle the area down somewhat and improve chances of the repair working.interfered with marital relations to a degree...

It's a tough decision. I think most fistula repairs that have any chance of succeeding, involve a temporary ostomy. This doesn't include the plug, and perhaps the flap, but those have a very low chance of success, from what my CRS told me. Sorry I can't provide more positive feedback. My fistula is complex and in addition has a sharp bend in it which makes things more complicated.

I can only encourage you to go talk a CRS at CC. They will probably order you an MRI and possibly perform an EUA to get a good idea of what you/they are dealing with. Best of luck, keep us posted...
n/a
E elishaMember
Thanks for your reply. I am now in such a pickle...the surgeon where I live is who said I should go see Dr. Remzi at CC. My surgeon from CA that originally did my 3-step surgery (I sent him all the test results) says that because my fistulas are so low that a pouch revision isn't necessary - that a seton and then in three months a surgery from below would do the trick (without an ileostomy).

Of course, I hope he's right...going to get another opinion in DC.
E
SH shawne hMember
hi i to had an abcess which was thought to be a problem with the bartholin gland when cipro did not work my Dr. decided to drain it of course found it went right into what is left of my rectum. I seen a colo-rectal surg. at that point he tried some type of fibrogen glue with out much hope he said and of course did not work for me. I was only bothered with drainage when i was having problems with blockages othe r than that only gas is sometimes released from that area. As i was not interested in surgry to try to repair it i live with it. i have more pressing problems than that i may require surgry due to an old leakage which has left fecal material and gas outside the pouch near the coccyx bone. See a surg next month re this they now believe i have crohns have been on prednisone and entocort for last year has helped as i can now eat maybe too much!!! the inlet to the pouch was down to 1cm due to inflamation not much would pass it is now 3cm because of meds. Dr insists the area outside the pouch must be resolved i lived this long so i'm not sure i want to go there had the pouch done in 1987 i think it had not healed fully when they closed the ostomy. anyhow my advise would be if you can live with it leave it alone you never know what can happen when surgury is done in that area. Shawne sorry for any spelling mistake i rely on my spell check too much
SH

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