Tag: vaginal fistula

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Fistula Follies

 

I do find it difficult to explain what a perineal-vaginal fistula is, mainly because fistulas usually connect to the colon or rectum which I don’t have. It doesn’t really have a name like other fistulas.

ENTERO -Meaning bowel or gut, it links different parts of the bowel.

VESICAL- Links to the bladder

CUTANEOUS -Links to the skin.

RECTO_VAGINAL – Rectum to vagina

PERINEAL_ VAGINAL – mine, I try and google but it never comes up with very much.

There are others but less common with colorectal fistulas.

My body decided regular bodily functions were just too mainstream. Imagine your body wants to make a new hole for no apparent reason? in my case from where my rectum used to be connecting  to somewhere it’s not supposed to go. When you think you are prepared there is a surprise leak. Forget nice knickers, it’s all about the swabs and pads. It’s worse when the days come that the fistula decides to work overtime. Pain and discomfort are the norm, and a lot more toilet trips with leaks.

You have to try and stay upbeat otherwise you could go down hill rapidly. As I have said many times, there is no help between appointments which can take months / years. As for mental health living with a fistula? forget it.

So here I am navigating life with a bonus feature, embracing the chaos and the ugliness. We have to make the best of it and await the next chapter.

A little ( or not so little) update about my stomal fistula.

You get used to a stoma over time when out the blue your body says you know what lets make another hole. You are then introduced to the not so glamorous world of a stomal fistula. As you can see from the photos, it started off small but now is too much.

I think Tomas wanted a companion, so I have an extra rogue to contend with, you start with regular stomal output but my fistula wanted it all so now my output is only from the fistula.

I have become a stoma bag wizard, matching bags with rings with barrier sprays and healing gels.Like building a dam to coax the output into the bag rather than out the side. These fistulas have taught me resilience and strength I didn’t know I had, but I welcome more help from the NHS.

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What to do, what to do- another surgery next week

 

I am in a predicament

I have had two VAFFT surgeries in London, and although my consultant there said it might take a few to help, I was sceptical. After all it has been eight years living with the damn fistula. He made sure I understood that they were not a cure but a chance of an easier life, if they didn’t help at all then I would need another flap surgery using the other thigh muscle and bum cheek. I really want to avoid that if I can.

There have been times throughout those years when the fistula would seemingly heal for a time, but it would ALWAYS come back.

You get fed up constantly cleaning yourself up or rolling swabs between the cheeks of your bum. Pain at times when sitting or standing. Not forgetting the awful medical photo I had to have.

 

Anyway, the leaking has stopped ( for now ) from the back fistula so I am unsure whether they can do the VAAFT procedure as they go through that fistula with a scope. I am still leaking occasionally form the lady parts as the collection of pus and nasty stuff was between the two parts.

fresh wipes starter kit

I have called St Marks and am awaiting a call from consultant or his registrar ( but because of the recent strikes I’m not holding my breath anytime soon ). I think the outcome will be is to wait and see which I am ok with this for now, as long as I have a good line of communication with them. I have no doubts os the possibility of a return of the fistula but have my fingers crossed.

Unscented intimate wipes

Life with fistulas of any kind are a nightmare because they are so stubborn and need a lot of care and surgeries to even remotely relieve the burden.  Here is a link to the Crohns & colitis website page helping people to understand what a fistula actually is.

What is a fistula?

Edit, one of his team has called and said I still need to go for the surgery as it might have just closed at the exit and the fistula will most likely still be there. The can’t say for sure until they look, so another journey to London next week. Whatever happens I am still leaking from the vagina where the collection is at the top so will see what they say about that.

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Well that Month was a mixed bag

 

We went to Rome with some friends. It was a fabulous place and although super hot, the places we went were astoundingly beautiful. I have been once before when we were on a cruise, but we only stopped for a day and managed the Vatican with St Peter’s square, the Basilica and the Sistine chapel. This time we got all the main places in those three days. The evenings were wonderful with great company, great food and of course, drinks.

 

During that previous week and onwards I have had a lot of bother from the vaginal fistula draining. With it being hot and having to wear pads, it was nothing short of unbearable. As I always say, you will never know what is happening with someone just by looking at them. This drainage carried through to my Rome trip and I leaked a few times through to my shorts and was generally run down by it all. To add to that my leg didn’t want to walk and it caused me undue stress and had to rely on my husband and friend to help me.

All in all there were lots of great things this last month with some hideous bits thrown in just for good measure.

On the day of our return from Rome, I started to feel a bit off and thought it was probably me being run down from the heat and walking and leaking. I decided to do a lateral flow test and low and behold it was positive. Because I am in the vulnerable club I did my PCR test which was also positive. I was feeling quite poorly from then and it took some time to recover ( I was given anti viral drugs but because I felt I was improving by then, I didn’t need them, not going to lie, I was worried about taking them as I knew nothing about them and after reading up, it didn’t do anything to convince me otherwise. If I had been worse or not improving then I would have used them)

Also on the flight home we had a delay when we were on the plane, so take off was probably about an hour away and we all just sat there with the Ryanair staff hiding so we couldn’t ask them anything. The problem with that was I needed to use the toilet as I had a leak from my stoma, yes a bloody leak on a plane that hasn’t taken off yet. Eventually a Ryanair chap came over, and I was a bit distressed by it all as I was sat next to my husband on one side and another man whom I didn’t know, so didn’t want to say, “by the way I am leaking shit can you move please, and can I get to the toilet?”

So my husband came to the rescue and said could I have a private word. I followed the staff member and explained my situation. I will give him his due, he was lovely and told me not to worry.

I went in to the tiny toilet room, and didn’t know were to begin. I had never changed my bag in an airplane loo before and there was no room to lay my things out. I struggled through and not long after I had the bag off and was cleaning, it came over the tannoy that we would be taking off in 5 minutes. FIVE MINUTES? this gave me more stress and the more I tried to rush, the more of a mess I was in. If I held up the other passengers I would be in very bad books. Would they take off with me still in there? I eventually made it out in time and very flustered, I would love to know where everyone thought I had been. I got a few looks on my way back to my seat, and then just cried a little to my husband, the stress of it all had got to me.

I went to see my new surgeon recently about the results of my MRI. That ended up being a surprise, I knew I had large hole in my vagina from my other fistula surgeries and I thought the leaks were because I still had a sinus tract. In essence this is true, but it actually stems from a chronic pelvic infection which I have had to suffer for years, with many surgeries, some of them major, to try and repair the complications. I will be having a surgery in the near future ( when I can be fitted it) for the surgeon to have a good look and potentially flush out the crap, but if all else fails then it’s back to the drawing board. The only thing that is worrying is the fact that that gunk has been inside my pelvic cavity for years, what on earth is it doing to me?

So all in all a mixed bag of a week, and always a difficult one for those of us with chronic conditions. I was upset with my problems and have blamed them for the bad days on my trip and I only hope that any future trips will have me in better health. I hope that what can be done for me, can be done quickly.

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