Tag: fistula

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Nine year stomaversary

Nine years since the above photo, nine years since my life changed. Nine years sice emergency total colectomy with ileostomy. Nine years since I was in hospital for 10 weeks at deaths door.

This photo haunts me a bit because I was so poorly, my eyes are dead. I was only just over the initial surgery when I had a rectal stump blowout which lead to pelvic sepsis, then an awful complication of an ongoing ( nine years to be exact) pelvic collection leading to a fistula connecting from the collection to my perineal area, then causing a hole in the back wall of my vagina. I couldn’t eat so needed an NG tube for feeding, and to stop the sepsis I had to have a rectal catheter inserted into my rectal stump to my pelvic area.

Nine years of constant leakage and intermittent pain. Surgeries, some very big surgeries, taking muscle from my thigh/buttocks and creating a flap. All failed.

As you can probably tell, I am not doing so well, I am usually very upbeat and an attitude of just getting on with it. But that attitude gets me nowhere, everyone thinks I am doing ok because that is what I choose to show the world, I am not ok. I go out and enjoy my evenings, but can leak through my clothes, My friends have had to ( and want to ) help. If I sit for any length of time at work or stand for any length of time ( you can see where it gets awkward even considering telling them because nothing can be done) I get discomfort/ pain. It can travel across both buttocks and weirdly down my flap scar. I need and love my job so will just carry on.

Medical professionals leave you to get on with it until things get very bad, and even then most don’t understand the impact. GP’s will do what they can, but it’s not their area so to speak, so they try and help but can’t make big decisions.

I google and join groups just to get some idea of how little is being done for people with colorectal/gynae fistulas or perianal Crohns disease. Since my last surgery about 6 weeks ago where they lay open the fistula and debride it, and repair the hole in the vagina, it has left me with discomfort bordering on pain at times, a lot of leakage and a feeling that the gynae repair has failed. I have had antibiotics three times and my GP thinks I have a low grade infection which may benefit from long term antibiotics.

I emailed my surgeon’s secretary nearly a week ago with her saying she will pass on my message, nothing has happened except I now have this low grade infection issue.

If i’m honest, the stoma has been the least of my problems and has generally behaved apart from a few blips and the stomal fistula ( yes another one there)

So this year my stomaversary is a reminder that I am still unwell after nine years, so won’t be celebrating.

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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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Fun in the sun before St Marks London

Hello again, sorry it has been a while but there wasn’t much to report, but this month has been a busy one.

We went to Corfu and it was brilliant, we really needed the break and we chose a beautiful part of Corfu called Arillas. My stoma behaved remarkably, and I felt confident enough to have a dip in the pool. I bought a lovely bikini from Bravissimo.

 

I knew that when I returned I would be seeing a consultant at St Marks hospital, which is a hospital specifically for bowel/pelvic issues.

My own consultant at home said I would most likely need a massive surgery with muscle from my tummy this time, and my scar on front and bottom opened up again, so this appointment at St Marks was to see if there was an alternative.

We arrived there, with no real sign for where St Marks might be in relation to Central Middlesex hospital, and eventually found the department. We were told that an emergency had occurred and there was an hour and a half delay. Not a problem, no ones fault, so we went to Greggs. The staff were pretty awful and unhelpful but anyway, we got a drink and something to eat.

I eventually got in to my appointment and the consultant was great. Didn’t dismiss me or belittle me like some of them do, and he had a look at my pelvic region, and a gelled finger up the vag, yikes. He prodded a bit then had a look at the hole in my flap scar. He said he could feel the hole in the vagina which lead to the pelvic collection, and asked about my symptoms and how it affected me.

After another look at the MRI, he said I had two options.

  1. Do nothing ( no thanks, this would mean I would always have the leaking)
  2. Try VAAFT surgery ( video assisted anal fistula treatment
  3. Another large surgery involving muscle and flap from my other bum cheek

Ok, so Option 1 is a no from me. Option 2 I need more info, Option 3 what does he think?

The VAAFT procedure would be this thin camera thing that is inserted through the hole ( not sure which one) and it can debride the fistula and cauterise the skin etc. It would mean travelling to London every six weeks for a day case procedure where the final one, he will try and close the hole in my vaginal. This procedure isn’t a cure but could potentially make my life easier. If all else fails I would have the large surgery.

So after a small deliberation I decided the VAAFT procedures would be the way to go. Anyone else experience this? how is recovery?

Will let you know how I got on.

 

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Round and Round

When I had my original stoma surgery I never dreamed I would be in this position nearly 8 years later.

After the IGAM flap surgery I thought that might be it with the big surgeries, but it seems not.

I have been informed that I have a pelvic collection 4cm x 5cm that links to the back wall of my vagina creating a large hole that the infection has created. I don’t really have a back wall at all now now. The collection then passes out my vagina.

Things have now changed slightly, as I discovered last Thursday, a new hole has opened up in my flap scar ( where my rectum etc used to be) and I now leak out of that. I had this before the flap surgery so I can now assume that it failed. I have to roll up swabs and tuck them between my bum cheeks to catch the flow of gunk.

My surgeon has just spoken to me and said he would be truthful and that because I have a very rare complication seldom seen, he is unsure how to proceed, and after discussions with colleagues he said that the only solution is probably to open up my long tummy scar again and start removing all the infected tissues and open my bottom scar again and do the same from that end. It would be a massive surgery he said. I may need a tummy muscle removing or another type of flap surgery but he made sure I was aware how much of a big surgery this would be.

We have decided that he will write to St Marks hospital in London as they are the leading consultants in the field and may have someone there, who is willing to take me on. I am very nervous with what the surgery may be but hope someone there will know how to sort me out. I absolutely like my new consultant and feel that he has drawn the short straw with me, having taken me on after my other consultant retired, and not being a part of the other surgeries. He has said that he is unsure at the moment how to help me except his proposed surgery and agrees that is would be wise to see if I can have someone with exceptional knowledge of my sort of complication.

He understands the effect this is having on me, physically and mentally and wants to help make me better in any way he can, and I can only wait for news from St Marks. I am scared, tired and put on a brave face most days.

To look at I seem absolutely fine, but underneath I am not fine and I would like to think I hide it well. Only a select few know the full extent of living with chronic ill health and I have great support so am one of the lucky ones.

 

 

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Surgery number… lost count

 

I have had another surgery. This one was so that my new surgeon could examine me under general anaesthetic through the vaginal hole into the pelvic infection, and see what is really happening in there and also flush it out to give me a few days leakage grace, we hope.

I  got there at 7am as per letter and I waited a little while before being called. After observations were done I met the anaesthetist, and we had a chat and he said if I wanted to, I could probably be awake and have a spinal block as it wasn’t a big operation in my terms of past surgeries. We checked with my surgeon and he agreed and said he could also talk to me and let me know what was happening.

On with the sexy socks.

Off I went to theatres with a very lovely ( but slightly overly chatty about death of his family members and the rest of his family not having a great time) porter and I went into the little pre theatre room with the anaesthetist. After a try at getting the cannula in my hand, it did eventually work and then it was the spinal block time. It was reasonably painless and I then laid down waiting for it to work. This is a very strange feeling, as your buttocks go numb first and very warm. Then your feet, and I saw them wiggle at first but didn’t really know that I was doing it.

In the theatre they just got everything in order then put my legs in stirrups, last I had seen of them they were lying flat so when I looked at them legs akimbo, it was so bizarre as they just didn’t look like my legs.

After a lot of rummaging and feeling the table wobble about, I was advise that as first thought from the MRI results, I had a chronic pelvic infection that had found it’s way out of a large hole in my vaginal wall. I know, fun right?

We have a few options, he could feel the top of my coccyx almost in the cavity and sometimes you can get an infection in it that could cause this infection. The only thing with that theory is that I would have thought it would have been spotted when they did the flap and muscle transfer surgery.( the coccyx is sometimes removed then, and it had been a  possibility in my case but they decided against it). If it is this ( it’s called osteomylitis ) they will first try long term intravenous antibiotics that I can also do at home enabling me to go about my life. If this fails they would probably have to remove my coccyx, which would mean going in from the front scar AND my healed flap, eeek.

If it isn’t the coccyx then who knows what it next. It’s back to the drawing board to see if they can work out what is causing this awful constant leaking of pus and fluid, sorry it’s too much info, but thats what it is and that is what this blog is all about.

Off I went to the recovery then the day ward to wait for the spinal block to stop working. This took longer than I thought and I was there for about four hours, as it took some time to clear fully. My legs were not my own and had a mind of their own. But the tea, coffee, tuna sandwich and flapjack made things better. Thanks girls x

Half way through waiting and being given refreshments, I realised I was drenched. This was the flush that my surgeon have given me now deciding to give me a bath, the nurses were fabulous for my entire stay and they changed the sheets, nightdress, dressing, bed floor ward hospital…..and all was well again.( It was just like water, nothing grim.)

I can honestly say that that I had the best care from that day ward at QMC Nottingham. They are going through some big changed to their wards but it made no difference to my care. I am going to do a shout out to them at the Queens day care unit admissions and discharge A45 block. Well done gorgeous nurses and HCA’s.

A slight bruise from the cannula and a massive dressing just to make sure 😉

I am now home and reasonable ok, still some slight blood and leakage, a bit of backache and some slight pain, so it’s feet up and cups of tea for me.

 

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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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Up & Downs of IBD fistulas

 

 

Fistulas are bloody awful, and not only that, the medical profession struggle to control them. Not only that, patients have no support whatsoever as to living with a fistula ( or two in my case) we are expected to live our lives for months to years with a draining fistula. I am usually a very upbeat person but these last few weeks are getting me down. It’s also one of those things that is difficult to explain. I have tried in previous blog posts but fistulas and sinus tracts are quite the enigma and even when I google about one of mine, there isn’t much there.

Many surgeries later and my vaginal and stomal fistulas are still making my quality of life miserable at times and all the while I have to just get on with it. I had a big IGAM flap surgery which although the flap and the rectal end of the fistula healed, the vaginal end didn’t, so now it is classed as a complicated case that needs careful management. All the while I am left with horrible symptoms and no one to support me whilst I wait…and wait.

This week has been particularly awful, this time the vaginal fistula has been playing up, every few weeks it will leak like a sieve and my day to day life becomes a chore, then it settles down again until the next cycle. Its just a fluid stuff that comes out but it burns and I am sore. The stoma one is constant poo because it has now taken over the job of my stoma, it must have grown to the extent that it has blocked the plumbing so to speak.

My main fear is leaving the vaginal fistula to become bigger and reconnect to the flap, as it stands now it has got worse over the months. I feel the need to tell anyone who will listen that life with a fistula is draining ( a little joke is allowed ). I can sometimes feel poorly and tired, irritable and upset, but keep it to myself because after six years of the same old thing, it becomes boring to hear.

Constant leaking and discomfort, soreness and pain. This is what a fistula is like.

I have no contact with a nurse to see how things are, and getting my appointment through with my colorectal surgeon is slow.

I am going through a phase of aggghhhhhhhhh. ( dictionary meaning..an emotion felt when everything is going wrong )

I have spoken about this before but those with fistulas need more help, there should be something in place where we can call someone and see someone whilst waiting for our appointments. Just a little support goes a long way.

 

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FIVE YEAR STOMAVERSARY 3RD APRIL 2021

What a rollercoaster those five years have been.

A gastroenterologist who nearly killed me by leaving me suffering, to ten weeks in hospital having major scary open surgery to remove my large bowel and have an ileostomy formed, including 3 or 4 days on the high dependency unit ( I was a bit out of it there so don’t remember exactly how long).

Waking up with a naso -gastric tube the size of a hosepipe down my nose, and having a second central line put in my neck.

A slow recovery with many complications, rectal stump blowout which caused pelvic sepsis, and feeling so ill I thought I might die. A wound that opened up at the bottom which needed packing for 6 months. A fistula developing at the base of my stoma ( this all happened in hospital ).

Losing over 2 stone in weight and needing another tube for feeding, this one was slightly less hosepipey. Being very depressed and ill.

Having PTSD symptoms ( ongoing with counselling )

Having my remaining rectum and anus removed and sewn shut, developing a perineal-vaginal fistula and needing 3 surgeries then more extensive surgery. More embarrassment by having to have a medical photo of my rectal fistula.

Then ……Feeling better each day and meeting new people, joining the committee of the Notts & Derby Ileostomy association and becoming their Young IA rep. Going back to work and feeling part of life again. Holidays, nights out ( Pre-covid) and finally smiling again.

Starting this blog. Meeting the TG Eakin team and blogging for them on A Bigger Life website and community, along with a promotional video.

Don’t give up.

 

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The trouble with fistulas

 

Living with fistulas can be so unpredictable. One minute you have discomfort and excessive leaking, the next nothing. You and your surgeon have no idea whats going on, is it healing? oh hang on a minute it’s started again.

My vaginal fistula has returned after serious major surgery to get rid of the little bugger. I am upset but most of all I kind of knew it would happen. They are dreadful to heal and most don’t, and folk live with them for years. Suffering with leakage, either fluid if not connected to a bowel, or faeces if it is connected, so that faeces comes out of the vagina/ bladder/skin.

All the surgery for IBD are major and hard going, and that is the same for fistula.

I don’t actually understand why these things are so difficult to cure, but I also don’t understand why we are left for years without much help. It usually take me a year each time it starts again after surgery, to actually get anything done and that means spending hundreds of pounds on pads and underwear during that time, not to mention the discomfort and pain it can cause.

THIS IS SURGERY FOR A MUSCLE TRANSFER AND FLAP SURGRY TO TRY AND CURE THE FISTULA, IT HASN’T WORKED.

I have a stomal fistula which I have had since my first surgery nearly 5 years ago, I decided to leave it be until the other fistula was sorted, but that seems never ending and the stomal fistula is causing so much more problems.

It has grown a lot since those early days where just a small amount of poo would come out of it as well as the stoma end. I could just about cope but now, it looks like another stoma and it seems to poo more that the stoma itself, as I suspect it connects further down and diverts the output to the fistula. It is at the skin edge so the output usually seeps under the bag at some point. I have also had terrible trouble with ballooning, where the bag lifts in the night because of excess gas, this then causes leaks usually near the fistula.

THIS IS THE EARLY DAYS OF THE SMALL FISTULA

THIS IS IT NOW, I HAVE ALSO HAD A REACTION TO MY BAG WHICH CAN HAPPEN SOMETIMES.

It is very difficult to cut the wafer to fit around my weird shaped stoma, and take me a few goes at it even now. AS YOU CAN SEE, THE FISTULA CAN CAUSE SEVERE SKIN EROSION UNLESS THE BAG FITS PERFECTLY, AND STICKS WELL.

I feel it won’t be long before I admit defeat and have a stoma revision surgery. Does anyone else have a fistula story that has become frustrating?

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Muscle flap surgery recovery -part 2

It has been four weeks since my surgery and some aspects are going well whilst others that I am struggling with and don’t know how serious it is,  who knows as I can’t get to see anyone until 6th November.

The scar on my buttock and thigh is very neat , it has opened up right near the flap by approx 2cm x 1cm, which the district nurse is dressing daily, but the rest of the scar looks pretty great and I am sure in about a year if will be exceptional. Some parts are still numb an other areas are quite tender with nerve endings and when I walk upstairs I get a weird sensation of pulling and twinging I assume it is where the muscle is missing.

I am feeling stronger after not being able to sit for 4 weeks ( that was hell on earth as I couldn’t lie down on my right side for two of those weeks  due to the wound and drain site )

The following, I hate to say does show the NHS in a poor light. I love the NHS and it has done a lot for me, but it has also been a nightmare at times, not the people who work there,( although there have been one or two questionable employees whom you wonder what on earth they are doing in a caring profession with the general public)  just the systems that are in place. They are dreadful with next to no way of getting in touch with anyone who has answers to questions you may have regarding your surgery.

When the wound was checked initially in the earlier days there was some discussion with the district nurses as to whether the flap had opened up slightly, this was a big concern and they rang my GP to see if he would come and take a look. Based on the complex surgery he was reluctant to know what he could do anyway so arranged for me to go to the surgical assessment unit at the Queens Medical Centre. This was utterly awful from start to finish…

  1. Because I wasn’t allowed to sit at all ( I was 10 days post op) I had to have an ambulance, which I waited for four hours. ( Again all the actual staff were second to none for care, the ambulance men in particular were amazing)
  2. I was put in a triage room ( this was at about 7pm) no one came to see me for a good 45 minutes, not even to say hello.
  3. The actual room was not clean. The last photo was of some suspicious droplets from the bed to the toilet.
  5. I was eventually seen at 1am by the doctor who said the wound was fine. So all that for absolutely nothing, on an uncomfortable trolley bed on my side. I eventually was told by my plastic surgeon that he had explicitly wrote on my notes that if there was any query about the wound I should go to the City hospital wound and dressing unit. !!!!!!!!!. I also needed to wait possibly another 4 hours for an ambulance home. All this being 10 days out from major surgery, again the staff were apologetic but the system was not set up for post surgery patients with possible concerns that need attending to quickly.
  6. As it happens my wound did open up but not at the flap but just near it so it is fine for district nurses to sort for now. But I started with a different symptom and that was leakage from my lady parts. Was this normal ? what should I do? plastics said they couldn’t deal with it as they didn’t repair that part, but trying to get hold of my colorectal surgeon is something on another level. Unfortunately for me he is semi retired so is not there very often. His secretary emailed him and he said he wanted me in clinic the next week, but as things don’t run smoothly for me, the appointment was made for two weeks instead ( he wasn’t in the trust the week he suggested, you are probably thinking as I was, why was I told he wanted to see me the first week when he actually wasn’t going to be there), his secretary said no one else would be able to see me, ( how does she know this without asking?) and when I asked for her email so that I or district nurse could send some photos she wasn’t exactly happy about it and said she didn’t have one that was secure and gave me an unmanned one from someone who was leaving soon ” But you can’t send photos willy nilly, just this once” yes miss. If there was even a small chance that the surgery hadn’t worked as planned I would have thought they would be fighting over them selves to get me looked at, but alas no.

So as it stands at the minute ( or sits haha) I am waiting to see my surgeon to see if my leaking is normal or not. It certainly feels strange, a bit like it did when I had the fistula so am concerned about the wait, I think there should be someone or some way to get hold of someone quicker if things aren’t necessarily going in the right direction.

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