Rectovaginal Fistula

Hi, I see there has been chat regarding rectovaginal fistulas on here but from a while ago, so hopefully someone can still help me!!
I have a fistula from "medical misadventure". I have had 2 failed repairs. Hopefully going for the 3rd in the new year (fingers crossed).
Every so often I must eat the wrong food, or something that doesnt agree with me & I get a terrible burning feeling in my vagina & surrounding area. Besides tramadol & not moving, nothing helps - its the worst feeling ever!
Has anyone had this? Do you know something to help with the pain??

I have changed my diet to try & eat only an alkaline diet but this is hard to stick too.
Any help, advice & support would be appreciated - I totally feel on my own & no one around me understand :(

Thanks x

Hi dapenu & welcome to the chronic pain forum. Sorry to read about what you are dealing with. I would suggest you post this in the crohns forum as there will be people over there that can probably give you some tips on how to handle this until you have surgery. I realize you do not have crohns, however, fistulas can happen quite often with crohns disease.

Hopefully you can get this resolved soon. Two surgeries under your belt so far has to be frustrating at best.

"and the alternative isn't nice and might involve wearing a bag."

I will note that I have a permanent ileostomy (a "bag") due to an unexpected intestinal perforation due to long-standing use of corticosteroids that thinned internal tissues.

An ostomy bag is, quite simply, no big deal.

The modern ostomy supplies are technologically quite advanced in their design and component compositions. Ostomy wafers (which adhere to your abdomen) and pouches ("bags") are small, discrete, ultra-thin, flexible, and conform intimately to the topography of the skin. The systems are air-tight and completely odor free.

No one would know that I wear an ostomy pouch unless I told them as much.

I wear a small 4-5" pouch that is formed of a ultra-thin elastic polymer. It moves as I move. People with ostomies can participate in any sport - swimming, water surfing, pilates, yoga, horseback riding. People with ostomies can wear skinny jeans and tight-fitting tops/dresses.

I spend about 5 minutes a day on ostomy care. Less time than I spend brushing my teeth.

I write this as a preface to anyone who may face ostomy surgery. Modern ostomy products are technologically quite advanced. Thin, quite, and discrete. There is life with an ostomy. And it can be an equally rewarding life as pre-ostomy.

The United Ostomy Association of America (UOAA) offers a support group second to none. www.ostomy.org

Having an ostomy no longer needs to be negatively associated as wearing a dreaded "bag."
- Karen -

Alice:
I am sincerely sorry that you experienced extreme distress with an ostomy. Situations such as yours still do occur, even with technical advances in ostomy surgical approaches and in the supplying of ostomy products. And when a person has a negative experience with an ostomy it can be profound. I am genuinely sorry for your experience.

I added my personal experience with an ostomy simply to diffuse any fears that the original poster may have about an ostomy and ostomy care.

It would be a mistake for the original poster to decline life-saving surgery based on the assumptive need for an ostomy feared to be ugly or smelly - because that is simply not the case.

Current ostomy products are nothing short of amazing. I wear a wafer from CyMed that is composed of a polymer similar to Glad-wrap kitchen wrap. The pouch is a discrete 4 " in length and composed of an elastic polymer. The wafer bonds to the skin through a heat-activated response to the composite polymers. Ostomy systems are air-tight. There is absolutely no odor. None. And there is no rustling noise of the pouch (as it is composed of an elastic polymer). None.

Having an ileostomy, for me, is no big deal. Honestly, I find it easier than the "old normal" of an intact digestive system and anus.

For anyone who may need ostomy surgery in the future, do not despair. The reality of owning on ostomy on your abdomen is much brighter than the negative rumors and innuendo may suggest.
- Karen -

Dapenu,

I have Crohns disease. I have had a rectovagina fistula since 12/2014. I also have an ostomy. I take Remicade for my Crohns and while it may help others heal and close their fistulas--it has not worked in that manner for me. A fistula does not necessarily cause you to have an ostomy. My ostomy was caused by an obstruction in my sigmoid in Sept. 2016. I have a friend that had her fistula repaired and she did not have to have an ostomy. I can also honestly say that you would never know I have an ostomy if I did not tell you. I was recently laying flat on my back having tests and I told my tester. She didn't know, couldn't tell, and was very surprised.
It is no big deal.

The fistula.... Does your fistula leak fecal matter or is it mostly mucus? Have you tried to keep a food diary to figure out what causes you pain after you eat it? There are certain foods, and they are different for everyone, that may cause your body to have a higher acid count. Because the fecal matter goes down the vagina it causes irritation. What helped me was douching with plain sterile water. I also bought Calmoseptine for the outside of the vagina area and it helped immensely. I also would take hot bathes with epsom salts. Finally after I went, if at home and I was in pain, I would take a shower and ensure I cleaned myself really well and I would blow the area dry.

If you do start a food diary please do not forget to list herbs and spices. Two things that do impact me are garlic and cilantro. My friend....it was pepper, bagels and cheeses. Everyone is different. Some people will tell you it doesn't matter what you eat. My experience has been different and it makes a tremendous difference.

I hope these suggestions help. Best of luck with your fistula repair. I start my journey down that road this summer.

Clo

Post Edited (clo2014) : 12/15/2016 11:35:48 PM (GMT-7)

Hi Gambolina, unfortunately we have no heard from the above members since November of last year. My question is what did your surgeon tell you on the recovery time. Granted everyone heals differently, but he should have told you something about this. If you are having problems I would go back to him & say this is what is going on, is this normal.

Take care.