FISTULA - warning, it's gross

Beeger

I m so sorry for all your challenges and complications. My goodness these support groups are monumental! I just joined this one today. Now that the dust has settled with being 6 months post treatment for stage 3B,N1. M0, I unfortunately fear I may have a fistula starting. I am getting an MRI Monday 1/31|22. May I get the support group forum for the fistula support group please and ty? Sincerely, Pam

Nutmeg1

Hi I am back 😊

I have been full circle regarding the fistula. Last I wrote I had to wait a year after treatment to attempt a repair of the fistula.

I had a stoma put in place to give time for the surgery on the fistula to heal. The surgery on my fistula was as mentioned by ginatom was the Gracilis flap repair (G.F.R).

I had the stoma in place for over several months and a few day surgeries to see how well the G.F.R procedure was healing. The surgeon tested to see if the sight was ‘sealing up’ the gap from the surgery. A few stitches were added at one time to ensure the hole was closed.

I am happy to say that it worked!! Fistula closed and stoma reversed 💕 Now, I am definitely pleased for small mercies 😇

Megan

anitakat

Hi Megan

Congrats on your successful surgery and on healing the Fistula! May I ask what state you had your surgery done? I am looking for a qualified surgeon in NYC.

Thank you.

anitakat

https://csn.cancer.org/discussion/comment/1640208#Comment_1640208

ThanK you for posting this, it gives me hope! I developed a RV Fistula after 4 weeks of chemoradiation. My doctor says the shrinking of the tumor caused it. I had a colostomy done right away as I felt pain from infection immediately. I finished cancer treatment & had the colostomy done 2 months ago. I saw a Urogynocologist a month ago and he did not find a fistula during the office exam. I want to give things more time to heal before doing further tests/exams but I’m wondering how long you waited to do this. You say you had the colostomy for 9 months so I’m guessing about that long. Were you advised to wait that long after treatment? Thanks for any info and also for suggesting visualizing. I did a lot of visualizing of my tumor shrinking during treatment and will up my game on the Fistula closing during my morning meditation. 🙏🙏🙏

Nutmeg1

Hi Anita,

I’m sorry to hear that you have had to go through all this pain and agony of treatment.

Firstly, I am in Australia 🇦🇺

My surgeon waited a full year after treatment finished, to try to operate. At first he wasn’t going to place a stoma but believed that if the procedure was to succeed, it was the best way forward. About three - four months after first surgery, I went into surgery to see how the repair was going. He tested for leakage and found that it was not completely sealed and inserted another stitch. I went back for surgery two more times to check for the all clear.

Once my Dr was happy with the repair, we then planned to reverse the stoma. It was about a full year for everything to heal inside and then the reversing of the stoma was operated on again.

So many invasive procedures but I am happy now that these are hurdles that I have overcome.

Back pain now, associated with the radiation treatment and managing the aching is the ongoing lifestyle now. Very glad to have a life 💗

anitakat

https://csn.cancer.org/discussion/comment/1708864#Comment_1708864

Thanks for your message Megan (I love AU!). It’s fantastic that the surgery worked and that you’re getting your life back. I know the RVF surgeries can frequently fail and are made more difficult by tissue damage from chemoradiation so you are fortunate. I am still hoping my Fistula will heal without surgery (and am working with a naturopath to assist in healing). Im encouraged that my urogyno could not see one, but until we do a more thorough exam nothing is certain. If it is still there over time I think the GFR is the best option. There is also one well known surgeon in CA that does a multilayer repair. He has done thousands of surgeries so I may consider him as well. The hardest part of all this for me is trying to stay patient and positive. It’s hard enough going through cancer treatment without experiencing debilitating side effects. And I still have the worry of the cancer being fully eradicated. Have you had good news on that front too?

Nutmeg1

Hi Anita,

I have been cancer free now, going on six years. 🙂 I am grateful to God for a second chance at life 💗

anitakat

https://csn.cancer.org/discussion/comment/1708945#Comment_1708945

That’s wonderful! I’m happy for you & the news is so encouraging. Thank you for your messages. 🙏💛

magillilnb

https://csn.cancer.org/discussion/comment/1708861#Comment_1708861

My treatments ended on December 4 of 2013. In February of 2014, they did a PET scan and gave me NED status on February 14. I didn't have the colostomy reversal until early May of 2014. The three exams/tests that were done to determine if the fistula was still there were probably done sometime before the colostomy reversal in May. She did an exam in her office to try to find it and another exam under anesthesia. The final one involved going to another doctor's office and having a balloon inserted in me to keep the organ inflated so it could be viewed better. He may have pumped water in me to see if it would leak, but I don't recall. But that doctor also said there was no fistula. So, I would say that she waited about four months after my last treatment before she did the colostomy take down. I hope this answers your questions. And I hope your fistula goes away.

Tamt

https://csn.cancer.org/discussion/309748/fistula-warning-its-gross

I am so sorry! I had this as well but beside my anus. It terrified me and I understand what you are going through. My radiation treatments (30) made my fistula completely disappear, I was shocked. There are better days ahead, for now keep the area as clean as possible and monitor for any infections.

barberafive

https://csn.cancer.org/discussion/comment/1708861#Comment_1708861

Sounds like quite an ordeal! Did you pause your treatment to have the colostomy or wait to finish? I am heading into treatment and already have a fistula. Worried about getting a colostomy but afraid it will only worsen when the tumor shrinks. So confusing!!!