FISTULA - warning, it's gross

ginatom
ginatom Member Posts: 44 Member
edited November 2023 in Anal Cancer #1

OK, I'm about to try and tackle the fact that the fistula is worsening, and I haven't even started treatment yet.  I was only getting gas through the hole from the anus to the vagina, and now I'm getting poo.  Really, unbelievably gross.  And dangerous for infection both inside the fistula and also migrating into the bladder.  I'm taking d-mannose which is supposed to make it so that e. coli doesn't stick to the sides of the bladder well and so gets peed out.  But what about cleaning the vagina.  I read somewhere not to use a tampon, and not to use a douche.  I remember years ago having a very gentle douche, similar to the peri bottles with just a squeeze bottle and an inserted part that has a GENTLE spray.  Feels like that could be helpful.

It's a long shot, but if anybody has anything about this wildly embarrassing issue, please share.  Thanks so much, Jeana

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Comments

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited May 2017 #2
    ginatom...

    I'm so sorry that you are dealing with this right now. I don't have much of anything helpful, but do agree that keeping the vaginal area clean is a concern. Has your doctor mentioned the need for a "temporary" ostomy maybe through treatment and / or until healed. I do have an ostomy and mine is permanent, but there are many people that have one temporarily for a variety of reasons and then have things reversed with little if any issues.

    Please keep us posted on what you learn, and know that you are in my thoughts and prayers for healing!

    katheryn

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    Ginatom

    First off not gross at all to read about. But yes I would be horrified to have poop coming out my vagina. You would never feel clean. I am so sorry you have to go through any of this but the fistula sounds like it would put me over the edge. I agree a douche might not be the best idea, you don't want to force bacteria up your vagina further. Haven't the doctors you have seen addressed this? What do they say? Just live with it for now? Do they expect it to close on its own as cancer shrinks from treatment? I think on other posts youve written I've gotten the impression you look stuff up and ask questions. I hope you are getting second opinions about this. Sorry not to be helpful with advice but you sure have my thoughts and prayers. 

  • mp327
    mp327 Member Posts: 4,440 Member
    Ginatom

    So sorry you are dealing with this!  I know it sometimes happens, but not having experienced it myself, I really can't be of much help except to say stay on top of your doctors.  Please keep us posted.  Sending good thoughts for you and prayers too.

    Martha

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited May 2017 #5
    Ginatom

    I assume you have contacted your regular gyn? Could you have one of your doctors either refer you to an oncology gyn or do a phone consult with one? My radiation doctor and regular oncologist both referred me to gyn for any gyn problems I had. 

  • ginatom
    ginatom Member Posts: 44 Member
    Did call the GYN who finally

    Did call the GYN who finally diagnosed my fistula and really found the cancer as well.  I was immediately referred out, but she was very sweet and helpful on the phone the other day.  She does think using a squeeze bottle douch with just water, or a teeny bit of apple cider vinegar could help clean things out.  Also recommended a nasal bulb like they use for babies.  I think there will not be many weeks more that I will be able to insert things, but I guess I'll just see.  Meanwhile I'm still using oregano in home-made suppositories to try and kill off bacteria in there - both "theres".  Thanks for your input.

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    Ginatom

    Im glad you talked to your gyn. And that she was sweet. One positive about having cancer is that so many people are nice to you, even ones that never were before! I've been thinking about you and wondering if you started treatment yet?

  • LindaBaehr
    LindaBaehr Member Posts: 47
    edited June 2017 #8
    Me Too!

    I am actually nearly a year post-treatment and I should have come here sooner, but anyway.......

    After my first chemo last year I also developed a fistula.  I have been on 100mg Macrobid for about a year, with no ill effects.  I HATE taking a daily antibiotic, but I got three bladder infections in quick succession and had to do something.  My Gyn warned against using any kind of douches and things like that because of the risk of pushing things further up.  I just finished a week off the Macrobid with the blessing of my chemo doctor, just because I was concerned about the duration I had been taking them.  Back on now with no infection.

    The sad part of all of this is how apparently very difficult and not terribly effective surgery to repair this is.  I have had clean scans since last October, and I have been seeing a Colorectal surgeon at UCSF.  She wants to wait a few years to even attempt to repair it, and then there is only about a 50% success rate.  Unfortunately.  Tongue Out

    I really do NOT want to go the Colostomy route.  Not unless something drastically changes.  Good luck.  

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    Linda

    Welcome! I didn't join until about a year out from treatment either. Wish I had found this site sooner. Glad to hear your scans are good but the fistula sounds really upsetting. I would hate being on antibiotics all the time too but if it's that or back to back UTIs I'd pick the antibiotics too. It sounds like you are getting good care. The success rate on the fistula repair is depressingly low, I had no idea. I have a friend whose husband has a fistula draining out his neck from oral cancer and it really bugs him. He doesn't even want his wife to look at it when she changes the bandage. I'm so sorry you had this complication. 

  • LindaBaehr
    LindaBaehr Member Posts: 47
    edited June 2017 #10

    Linda

    Welcome! I didn't join until about a year out from treatment either. Wish I had found this site sooner. Glad to hear your scans are good but the fistula sounds really upsetting. I would hate being on antibiotics all the time too but if it's that or back to back UTIs I'd pick the antibiotics too. It sounds like you are getting good care. The success rate on the fistula repair is depressingly low, I had no idea. I have a friend whose husband has a fistula draining out his neck from oral cancer and it really bugs him. He doesn't even want his wife to look at it when she changes the bandage. I'm so sorry you had this complication. 

    Thanks

    And reading about other people having repair surgeries that failed isn't reassuring.  Sounds like it might not be worth it.  Tongue Out

  • Nutmeg1
    Nutmeg1 Member Posts: 21 Member
    Just discovered Fissure :(

    Well, six weeks of radiation and two rounds of chemo finished ... only to discover that I too have a fistula. I knew for definite when I tried to hold some wind back and just passed the wind through my vagina. I had been suspicious that something wasn't right when I started noticing a discharge of sorts on my pad, after I'd had a bowel movement. I have taken to having more salts baths to attempt to cleanse the vagina.

    I was in hospital when I discovered the fissure, and tried to get some information from the chemo Dr. He was absolutely ignorant about anything to do with things outside of his field of expertise.I was discharged without any direction or help in how to tackle the 'cleanliness' issue. Further, my concerns about inserting a dialator seems precarious as I am worried about worsening the tear.

    Research on the internet has given me a small idea of management: no holding back to do a BM., eat only easily digestable foods - no skin off fruit or vegetables.

    Needless to say, I have made an appointment with my surgeon. I am hoping fo some better support and direction. I was very interested reading about people who have had temporary stomas, and am now a little unsure about it if this is offered, would be a solution to the healing process. 

    I feel totally broken. Cry at the drop of the hat and exhausted to no end. And to find yet ANOTHER problem is overwhelming, so I hope the Tuesday app. will allay my fears. I thought i was SO embrassed with having Anal cancer yet, to add to that woe, I now get an added hat trick of being able to "fart" out of my vagina and incredibly more feelings of embarrassment.

    I will let you know if I get any positive information from the Doctor.

  • mp327
    mp327 Member Posts: 4,440 Member
    Nutmeg1

    I hope the surgeon will be much more helpful than your other doctor.  Please let us know what you find out.

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited August 2017 #13
    Nutmeg

    My heart goes out to you, it really does add insult to injury. I am so sorry you are going through this. I have not had a fistula myself so I hope surgeon and others on this forum can help. I would definately get more than one opinion before surgery, that would be a situation where you would really be depending on surgeon's skill and experience with fistulas.

  • Nutmeg1
    Nutmeg1 Member Posts: 21 Member
    Time has been needed to accept the changes

    It has nearly been a year since I last wrote. I have waded through chronic depression facing all the changes that occur with the completion of the 'treatment' and the SLOW physical recovery to my nether regions. The fistula is still there and my surgeon has confirmed its presence, suggesting I wait at least a year to attempt a 'repair'. 

    The serverity of my depression has lifted, and I am not as fragile emotionally. Physically, I am slowly accepting.

    With the continued mucus discharge from both vagina and anus I wear a pad. It was suggested that I get charcoal pads as they have high absorbancy, but I have been using incontinence pads (easy access).

    The physio had said that it is not unusual for the mucus discharge to last up to 5 yrs after treatment. Knowing that the mucus is a 'normal' now, has helped me accept my bodies new functioning. She has suggested that after breakfast, I walk for 10 min and then sit on the toilet, to help to begin to regulate my BMs. Also, it helps to reduce discharge later in the day, but there is no predicting the when and why of involuntarily passing mucus.

    Bending, lifting and the straining of being physically active while my grandchildren visit, really increases the discharge. I now know I just have to be prepared by consistenctly wearing a pad! (I thought I had escaped having to fuss with menstral cycles with menopause - but I am now resigned, to the vigilence of being aware of what is happening 'down there').

    I am so thankful for this forum. Being able to read stories of survivors of anal cancer, has been a huge help to me, in what I could expect in treatment and post treatment. Just knowing that people have endured the pain and grief of finding out about this disease, and as overcomers has encouraged me greatly.

    Thankyou :)

     

  • Jewlz
    Jewlz Member Posts: 13 Member
    Fistula and Cancer

    My "hemmeroid" is what led me to a rectal surgeon. At my first appointment with hiim, he couldn't even do an exam because I was in too much pain. He had to perform anal surgery and I had an abcyss as well as a fistula; the fistula forming from the abcyss tunneling. He fixed the fistula and abcyss, and the biopsy he took during the same surgery resulted in my anal cancer diagnosis. This was 10 months ago. I am so sorry that some of you are having to deal with fistulas not healing. Mine was really painful. After reading other's experiences, I feel very lucky that mine was able to heal before I started chemoradiation treatment. 

    My "hemmeroid" diagnosis was from my GI doctor. I had a colonoscopy, three office visits and was told it was a hemmeroid. He finally sent me to the rectal surgeon so he could decide what could be done about it. I've read similar stories on this forum and I've had to dig deep and hard mentally to get over the anger I felt.

  • Msmoxie
    Msmoxie Member Posts: 46 Member
    edited June 2018 #16
    fistula

    I was diagnosed with my SCC anal cancer in August of 2017.  Once I knew what was causing my fecal incontinence I went to the Gyn for my annual.  A nurse practitioner used the biggest speculum she had (I guess assuming I am a big woman ... she would need it but NOT considering I had a tumor in my rectum as big as a key lime)... and her exam tore through my vagina into my rectum so I have had the recto-vaginal fistula ever since.  It is such an unpleasant issue to deal with.  We grow up as women that know how important it is to stay clean and to have gone through all of the menstrual cycles, childbirth, menopause and yes finally thinking YAY!!! free of pads and all of the mess.  Well, I have to tell you the mess is so much worse with poop coming out of everywhere.  And the gas too.  Just getting up from a chair can be so embarassing now... because everything just drains out when you have been sitting ... so I am in diapers again.  It is unbelievable and upsetting.  

    Anyway,  I am sharing what I have been doing for nearly a year now to protect myself from the infections that are inevitable if we don't carefully and diligently try to clean up.  I had already had close friends using hydrogen peroxide topically for many things.  I began adding the 3% hydrogen peroxide to all of my wipes ( I go through about 1000 wipes a week).  On some occasions its such a mess that I get in the shower.  I have not yet installed a bidet set on my toilet since it is easy to jump into the shower but it is a thought.  I also have intermittent blood and blood clots that drain out of both anus and vagina.  As soon as all of this happened I called my primary and my radiation oncologist and told them what I knew was happening ... they did not even know what to say but that they were sorry I was having yet another problem with this tumor being in such a horrible spot.  

    I also remember my chiropractor suggesting chlorophyll (comes in a capsule) you could put this in filtered water to wash/flush with.  I too am afraid to put anything up inside for fear of making the fistula worse.  Mine is large already since it was caused by a speculum.  

    I really wish none of us were having to deal with all of this.  

    It is humiliating and none of us likes to feel so unclean.  I pray that the doctors care enough to find a surgery that will be more successful ... something to give us hope for more normalcy instead of all this "new normal".

  • LindaBaehr
    LindaBaehr Member Posts: 47
    Nutmeg1 said:

    Time has been needed to accept the changes

    It has nearly been a year since I last wrote. I have waded through chronic depression facing all the changes that occur with the completion of the 'treatment' and the SLOW physical recovery to my nether regions. The fistula is still there and my surgeon has confirmed its presence, suggesting I wait at least a year to attempt a 'repair'. 

    The serverity of my depression has lifted, and I am not as fragile emotionally. Physically, I am slowly accepting.

    With the continued mucus discharge from both vagina and anus I wear a pad. It was suggested that I get charcoal pads as they have high absorbancy, but I have been using incontinence pads (easy access).

    The physio had said that it is not unusual for the mucus discharge to last up to 5 yrs after treatment. Knowing that the mucus is a 'normal' now, has helped me accept my bodies new functioning. She has suggested that after breakfast, I walk for 10 min and then sit on the toilet, to help to begin to regulate my BMs. Also, it helps to reduce discharge later in the day, but there is no predicting the when and why of involuntarily passing mucus.

    Bending, lifting and the straining of being physically active while my grandchildren visit, really increases the discharge. I now know I just have to be prepared by consistenctly wearing a pad! (I thought I had escaped having to fuss with menstral cycles with menopause - but I am now resigned, to the vigilence of being aware of what is happening 'down there').

    I am so thankful for this forum. Being able to read stories of survivors of anal cancer, has been a huge help to me, in what I could expect in treatment and post treatment. Just knowing that people have endured the pain and grief of finding out about this disease, and as overcomers has encouraged me greatly.

    Thankyou :)

     

    Last Visit

    I saw my Colorectal surgeon about two weeks ago.  She initially told me she would want to wait at leat 2-3 yers before she would even consider the surgery.

    She told me agin that the success rate is not good.  In addition, i would have to have a temporary colostomy prior to the surgery, and if it was not successful, the colostomy would probably become permanent.  So you weight fecal dischard/daily antibiotics on one hand, and a bag on the other.  

    I have had several accidents since my treatments, but the worst was about two months ago.  I was having bad diarrhea that morning, but i thought I was good.  When I got to work and stepped out of my truck, I just gushed out my vagina.  It overran my pad and got all over my pants.  I had to drive all the way back home and clean up.  Things like that make you consider drastic measures.  

  • magillilnb
    magillilnb Member Posts: 39 Member
    Fistula between vagina and anus

    This post is somewhat old (just like me!), but I thought I'd weigh in. I had a fistula which was leaking waste into my vagina. That's how I found out that I had anal cancer. The tumor had pushed into my vagina. When the doctors discovered this, they did a colostomy to divert the waste before it got to the fistula. Then they treated me for cancer. My colorectal surgeon promised me that she would do surgery to repair the fistula after all the cancer treatment was over, and she was hopeful that it would work, and she could take down the colostomy. When the time came, she examined me for the fistula, but couldn't feel it. She then decided to put me under anesthesia, so she could examine me without hurting me. She still couldn't find it. There was one last test which another doctor did, and it was totally pain free with no anesthesia. While he was looking at the monitor, he said he'd wait until the paper scan came out, but he could not see the fistula. I took the paper results to my colorectal doctor, and she hugged me. She said she rarely got to see such good news. My fistula healed on its own, even after radiation, which normally makes the hole bigger. My radiation oncologist had said he was 100% certain that I'd have the colostomy the rest of my life. He was 100% wrong! And although it sounds wacky and can't be proven, I did visualization on the fistula throughout my cancer treatment, where I visualized the hole closing. I didn't really know what it looked like, but I visualized a hole between the two places getting smaller and smaller. Whatever happened, it was a great outcome for me. 

    For those of you who have fistulas, I hope you've gone to colorectal surgeons to find out if the fistula can be repaired - get second opinions, too. I know they can be difficult to fix. Also, if yours cannot be fixed, and you would prefer, you can possibly get a colostomy/ileostomy which would give you a new lifestyle to deal with, but it would end the issues you currently have. Many people live with colostomies/ileostomies and lead normal lives. They don't worry about infections, odors, constantly cleaning themselves, or wearing diapers. I had one for 9 months, and while I would rather not have had it, I didn't have the kinds of problems mentioned above. Once I learned how to attach the bags and tried several different styles until I got a good fit, things got a lot better. 

    And, while it's far fetched, it won't hurt anything if you try visualizing the hole closing on its own. Sometimes, the mind and will can be more powerful than we give them credit for.

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    Visualization

    I had to smile when I read your post about visualization! Every day when I was getting radiation I would visualize tiny minions (yellow capsule shaped ones like in the movie) working like little miners to remove the cancer. My husband got me three tiny minion figures and I still have them where they can watch over me when I sleep! Silly but who’s to say it didn’t help!?

  • Sundaycav
    Sundaycav Member Posts: 3 Member
    i just found something else

    i just found something else to be grateful for...that I never had a fistula!  Bless each of you who have had to deal with one. Also, the visualization mentioned above, will add that to my arsenal!

  • ginatom
    ginatom Member Posts: 44 Member
    Fistula w/ Anal Cancer

    Hi everyone - gosh, I'm checking in after 4 years to give newcomers hope!  The good news is I'm alive and healthy.  Bad news is that I still have the recto-vaginal fistula that caused the anal cancer and which also alerted me to the fact that I had anal cancer.  I went through the typical treatment protocol.  It was ghastly.  I was OD'd on the first round of chemo somehow and ended up in the hospital in isolation for 7 days with pancytopenia.  Felt truly like the portal to whatever's in the next world.  But I survived and eventually got strong again.  I'm 72 now.  

    So now I've had the fistula for 4.5 years.  I'm in Asheville NC.  The concensus seems to be that the odds of repairing the fistula are bad because of the inability to heal after radiation and chemo.  The only procedure that seems worth considering is the Gracilis Flap procedure which is a pretty major surgery and MAYBE 50% chances of working.  The fistula is bigger than it used to be - a reasonably sized forefinger could go right through it.  The URGENCY problem is the worst for me.  Like many mentioned above - just getting up from sitting can be catastrophic in terms of gas, mucous or poo just gushing through the fistula.  I've had multiple "accidents" when out in the world and many many more at home where I have 30 to 60 seconds of warning and am then pooping as I drop my pants for the toilet.  It has brought travelling to a screeching halt.

    So two questions of you, my dearest friends.  One is - are people hearing of any treatment that is successful to resolving a recto-vaginal fistula after it being irradiated?  If so, what?  And WHERE? 

    And two is - how is life with an ostomy?  Tell me everything!

    Much love to all of you who are in this particular boat.  I'm in a fistula support group as well, and honestly - who knew so many of us were dealing with this?  I have so much more empathy for my fellow humans.

    Jeana