Fistula, anyone help please

Hello ladies,

So within the past 2 weeks I seemed to be passing gas both ways(anal-vagina) and started to suspect I might have an analvaginal fistula. I called the nurse to bring this up and has booked me for an internal exam to see what’s up. I am very down and scared at the moment.
I’ve read that usually they do “stoma” for a fix to divert fecal output and I honestly don’t want to have this if possible. I’m worried about the impact on my quality of life since my only symptom is passing gas through vagina. I mean if it’s something that’s necessary and improve my quality of life I wouldn’t have any choice but to embrace it but I guess my question is does anyone here knows if they can repair this without a stoma? Now I know it can be complex since I’ve undergone radiation and that’s why mostly they opt for stoma for fix. I don’t have pain, fecal incontinence or smelly discharge. I would love to hear from anyone who has experience this or know something about this please. Thank you so much in advance!

Dear May,

I don’t have any experience of this, but I didn’t want to ‘read and run’. What a horrible worry for you! I agree that I would not want to have an op of the kind you suggest unless it was absolutely necessary. Take heart - you have an internal exam coming up and there’s a chance there’s another reason why you are/feel you are passing wind from your vagina, especially if there is no faecal involvement. Do you mean you pass gas simultaneously from both ‘exits’? By the way I see you’ve posted about this on another thread too and mentioned the dilator… might it be a good idea to take it along to your appointment and check if you’re using it in the correct way? :wink: Also are you doing anything in particular before this happens - like using your dilator? Could be you are trapping some air - I’ve ‘burped’ in this way before, but don’t have a fistula. Hope someone else can be more helpful. Try not to think about the worst case scenario…. Of course we all do… :roll_eyes:

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Hi Jacks,

Thanks for your reply it means so much to me. I really feel alone at this moment as I know it’s a rare complication of radiotherapy. It seems to be happening occasionally when I’m passing gas and I noticed that it’s coming out from both exits. As you know radiotherapy can make us gassy so I had some time to observe and confirmed that it’s indeed coming out from both. I just wanna hear if someone here had experienced this and if they were able to repair without having a stoma as my symptoms are not severe. But from what I’m reading online radiation therapy induced fistula are complex and hard to fix so they just always opt for diversion hence the stoma.
You have great memory about the dilators. I was able to progressed to the biggest size girth-wise but can only insert 4 inches max. So I’m not sure if my vagina has shortened that much. Thank you again Jacks you’re a valuable member of this community we appreciate everything you do and your support means a lot.

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Hi
Well i completely sympathise with you. I underwent a sigmoidoscopy 4 weeks ago to investigate the late effects of radiation and a small fistula was noticed. I saw my oncologist 2 weeks after and was told about the stoma. To say i was devestated would be correct. I thought to myself, ive done my bit, i beat stage 4 cervical cancer, now its my turn to have a break! But life is life. So yesterday i saw the surgeons and had an MRI. Not all hope is lost, there is a chance, a very small chance, that i may be candidate for reconstructive surgery instead of a stoma. It is not guaranteed and still carries a high risk, and may still result in a stoma but im really hoping the specialist team will take my case.
Im only having wind release but on sunday i also started passing small clots but nothing more so far.
Ill let you know how i get on.
Good luck with your next steps.
Xx

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Hi Donnam,

Thank you for replying and sharing your experience. It’s so hard isn’t it? I’m so sorry to hear that you also have a fistula. I went to see my oncologist yesterday for an internal assessment and he wasn’t able to detect it so I may need further tests. Was yours seen in an internal exam or w the MRI? I’ve asked my surgeon yesterday what are my options in case and he basically told me that if it’s not affecting my quality of life it’s better to leave it alone rather than having a stoma as the repair would be extremely difficult due to the tissues being radiated.
What were your symptoms? I’ve first noticed I’m passing wind both exits. I’m not sure if it’s gonna progress and I’m scared about it. Xx

It was the camera that gave it away. We thought the symptoms i was having was late effects or radiation as it all matched up. I couldnt do the brachytherapy so i had 5 additional targeted radiation over 2 1/2 weeks after my 15 weeks of treatment. The pain, bleeding from my back etc were all standard symptoms for late effects so i wasnt too worried, then on the images they saw what could be a fistula. The MRI yesterday should confirm everything.
I feel like i have constant thrush and a urine infection. I still have my nephrostomy aswell which doesnt help that side of things.
Ive never had an internal exam since my original diagnosis in july 2020.
Its just a waiting game now but hete in scotland things seem to be moving faster than they were previously.
I hope everything moves quickly for you and you continue to have manageable symptoms xxx

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I’ve sent you a private message. I really do hope they can still do a reconstructive surgery without the stoma unless of course it’s completely necessary. I’m sorry to hear about your symptoms that must be awful having pain and bleeding as well the recurring infections. Please let me know how you get on. Much love.xx