Fistula Need Advice

Hi! I'm new to the group. I had a complete hysterectomy in Oct. 2011. 2 Fistulas. Surgery to repair in Dec., but catheter was too small and jammed up - fistula opened. I'm scheduled for surgery on July 30th. This time will be open abdominal. I'm terrified of surgery and this past year has been hell. Catheter off and on and the spasms are awful. So tired of it all but trying so hard to stay positive. Wish it was 3 months from now!

Hi everyone! I am new to Hystersisters but have posted before about my fistula....having trouble navigating this site, so not sure if you saw my posts or not. Here's the deal...I am headed for a 2nd surgery to repair a fistula. This time it will be open abdominal. The first was done by my GYN and she sent me home with a cath that was too small and jammed up and opened the hole the first night. I now have a urologist in NY ( predominantly a cancer hospital, which, thank God I do not have). But this new Dr. is very conservative. He tried a cath for 1 month, the fistula closed, but opened in 5 days. He then wanted to try for 2 months, but I removed it myself (I had a syringe) because the cramping was unbearable. But after having it for 2 1/2 weeks - it stayed closed for 2 days. He said he'll do my surgery, and it will be over 90% successful, but wouldn't be opposed to doing another catheter. Has anyone had experience with this? Or heard of this? Any success stories? MY GYN said I need the surgery - no questions. Thanks!!

Hi Again Everyone! I realize I may not have been clear with my question. Just wondering if anyone had success with a catheter alone, as this is what the surgeon is proposing. Thanks!! And Best wishes to everyone!!

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Originally Posted by Crabcakes Hi Again Everyone! I realize I may not have been clear with my question. Just wondering if anyone had success with a catheter alone, as this is what the surgeon is proposing. Thanks!! And Best wishes to everyone!!

Hi Crabcakes,
Thank you for sharing your story with us.....I understand your question...I think sometimes the hole in the bladder is so small that the doctors want to see if it heals on its own...After my first repair, I was still leaking and they kept my supra pubic cath in for 8 weeks almost nine until it literally broke in half on Christmas eve ...but thats a whole different story. But the dr want to see if the bladder heals on its own instead of doing surgery...the bladder has scar tissue on it from the first repair and it gets harder and harder to repair and heal with that type of tissue around the hole. Now that's how its been explained to me from my dr.'s....

I have never had success with just the cath....I wish I did but I've had 2 repair surgeries and I'm finally going to see a urogyno specialist on August 13th, to see what he can do for me. Which will eventually be another surgery... This is my opinion, and my opinion only, I would do the abdominal surgery...Go ahead and get it over and hopefully it will heal correctly and you will have caths again after the surgery..... Of course, this is your decision, and I will be praying for strength and wisdom for you. You will make the right decision..

I hope I helped a little anyway..please keep posting, we are all here to listen and help each other!

Hugs,
Christy

Sending you , crabcakes and hoping this second surgery will work for you.

Hi Crabcakes,

I did have success with a catheter. I had a very small fistula five weeks after my hysterectomy. I was with a specialist and had the Foley catheter within 72 hours. She told me that the fact that my hole was so tiny and that we got the catheter in so quickly is what really helped me heal without surgery.

The urogynecologist I went to told me that the ONLY way she would fix a fistula is abdominally. More often than not, vaginal, etc. repairs reopen. I think if you have to have surgery--the abdominal is best. The recovery sucks--plus you have to wear a catheter through it…but it is what it is.

You are in my prayers. Maybe wearing this cath will clear it up for you. But if not, the abdominal surgery should fix it once and for all and you will be dry!! I feel your frustration. The catheter is absolutely the worst part.

I had a fistula. Not bladder, but Ureter (tube from kidney to bladder). It was repaired by open surgery. I do not regret it one minute. It fixed me completely 9 months ago. Have not had any trouble. I would just go with the open surgery and get on with the healing. My personal experience and opinion. I am very happy I went ahead and had it done via open surgery. Kinda Scarey but at least it is over with. Best of luck to you. take care and keep us posted.

I have a fistula, repair scheduled for this Thursday but meeting the surgeon on Tuesday to discuss results of recent cystogram and MRI. I have had a catheter in for four months, I have been leak free for about two months of that time. I am hoping that she will say I have no leak and can go home without a catheter! I know this is unlikely and have a tendency to be over hopeful. However the cystogram showed no leak so I have some reason to hope. I realise the cystogram is not definitive so am trying to keep my hopes in check by thinking it must just be a small hole and maybe easier to fix?

My first catheter was very painful since changing it I have been able to sit and move around comfortably, they do sometimes split or come apart, oh the joys!

Anyway that is my experience of catheter so far, I should be able to post soon whether it worked.

Hi Crabcakes,

I was just wondering how you are doing? I was reading through severals posts and I haven't heard/read from you...Is everything okay?

Just concerned about you..

Hugs,
Christy/Moonbeam3