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.

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.

VAAFT PROCEDURE DAY

 

Last week I was at St Marks hospital in London having VAAFT surgery and this is how it went. ( video assisted anal fistula treatment, although I don’t have an anus it works in a similar way for my particular anatomy and infection.)

Click on the word VAAFT in paragraph above for a detailed description of the procedure.

We were hoping and praying they didn’t cancel at the last moment because we had to go down the evening before and stay in a hotel ( I had to be there at 7am.) It would have been a nightmare and costly. I was a bit nervous about this surgery as it was a new hospital for me and the procedures they had were a bit different to my local one, and I always felt confident and comfortable there where I knew.

It is very modern at St Marks, when you go in there are some leather sofas in a large clean white waiting area, we booked in and were asked to sit there with, I would think, another ten to fifteen people. My husband wasn’t allowed to go further than this which made me anxious. When the man said to follow him, we said our goodbyes and ring you laters and off we all went. This was the weird bit, as we went en mass and followed him along corridors and up some stairs, and along more corridors until we eventually arrived on a ward where my name was taken and a bay allocated. In Nottingham we would go straight to the ward on our own and book in there.

I had to put on my gown straight away, with a lovely hair net thing, and those funny shoe covers. A nurse arrived to do my observations and go through some questions, a quick hello from a member of my surgeons team and a brief chat about the procedure before the anaesthetist arrived.

Because we would be travelling straight home that day, I was very lucky to be first down to theatre, and another unusual thing that was different for me was the fact that I was taken straight into the theatre room and not a side room to be put to sleep, so although I have had a fair few surgeries, I haven’t actually seen the inside of the theatre. It spooked me a little seeing the large room with all the equipment and lighting but realised they were doing the same kind of things just in the theatre instead. The anaesthetist had a little joke with me about my veins and needing to smack my hand and eventually that was it until I woke up back on the ward. As soon as I opened me eyes it seemed, they asked if I would like a cuppa and sandwich, which I said yes to. I kind of wished I hadn’t as I got heartburn and pain which I think was to do with the tube having been near there.

I had a large pad in my pants ( not fixed to anything though so kept moving about ) as I was bleeding and leaking from the surgical site ( where my bum hole used to be) but it was numb which was good for travelling back. They told me that I would need a flap surgery again to close the hole in my vagina, something that we were hoping to avoid, but I would still have another VAAFT procedure in a further 6 weeks.

Everyone was nice and I was treated well so next time I won’t be as nervous.

Recovery wasn’t bad. Some discomfort but no pain for me, but blood and fluid leakage from the site was a fair amount. I was tired and had a sore throat which is common after a general anaesthetic, but had time to relax at home and recover. After a week I was more of less back to being me apart from the leaking and soreness, but was told that it was normal to leak for a few weeks and I assume they cleansed the pelvic area by flushing it out so it would be that and blood that would come out.

I will see how it goes but it seems okay for now, and if it works by reducing my symptoms to a more manageable amount I will be happier. The flap surgery is another matter and I will cross that bridge when I get to it, for now I will stay strong and get through these procedures ( and continue tucking the swabs between my cheeks )

A few weeks after, I was wiping the wound and a stitch appeared which surprised me, wasn’t told much afterward the procedure so just hoped it was normal. I am also still leaking, and it’s more than before I had surgery.

 

 

 

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.

 

Another short stay in the hospital

 

A few weeks ago I started getting a bit of tummy ache with nausea after my evening meal ( it honestly wasn’t my cooking), this was on and off until earlier this week. I had made a yummy shepherds pie but with swede mash, my plate was completely empty it was that nice.

I went to bed and can’t remember if I had that weird tummy ache thing again, but anyway I went to sleep. I kept waking in the night with quite painful colicky spasms, but tried to manage some sleep. When daylight came I had a look in my bag and the stoma was swollen and I had very little output. Usually I have a fullish bag and need to empty a couple of times in succession. The pain was coming in waves so my husband said to ring the stoma nurses or GP. I changed my bag first because I needed to cut the hole much bigger to accomodate the alien trying to get out of my tummy. Then I rang the GP first, that was fun, ” You are number 22 in the call queue”.

When I finally got to speak to the receptionist to ask what I should do, she went off to speak to someone and then said A&E. Now I don’t mind this but I do think the GP should have maybe got me into the surgical triage unit at least. Anyway I tried my normal stoma nurses at the hospital but had to leave a message, so tried the stoma team at NAMS, which is where we have to order our stoma supplies from and where there are stoma nurses, they said A&E too.

So we decided we should go there, hoping that I don’t have to sit in the waiting room for ever and a day. I was in a lot of crampy pain still with virtually no output. When I went to the reception window I said I have a stoma blockage and he could see I was in some pain, and the lady next to him said, straight to majors. Thank you thank you.

I was getting upset with my situation and they were really nice to me, put a cannula in and gave me intravenous paracetamol then saline.

I kept being wheeled around the busy majors department a bit like a car park, one in, move one, move back etc. They kept me next to a nightmare patient who kept threatening to remove the cannula that was giving vital meds, the doctors and nurses kept explaining that she had a very fast heart rate and could go after the drip had finished, she wasn’t happy with that and kept going on and on. In the end they said take it out then go ( knowing full well that wasn’t going to happen). Meanwhile I was trying to relax to keep my pain at bay to no avail.

Next they decided I should have a CT scan, and off we went, when we got there they said good I have a cannula. It then dawned on me that I can’t have CT contrast otherwise this would happen, and I forgot to mention it.

CT with contrast allergic reaction

So off we wheeled again to majors.

They then decided it would be best that I see the surgeons, and they would arrange for them to see me.

We waited……and waited…. 4 hours so far for them. Ok I think we need to get you to the surgical triage unit and wait there.

Off went again. At the door to the unit, they more or less chucked me off the trolley saying trollies weren’t allowed in there ????? weird I had been taken in before on one ( and I saw many a patient come in on them too). So they sat me on a chair with others who had been waiting years by the looks of it. I had my obs taken and after about an hour I decided to ask if I was back of the queue again. No there was one more in front, would I like a bed?

Yes please I would like a bed, it was now 5pm and I had been at the hospital since 10am. I was put in a side room with my phone barely charged and waited again. My husband had been back just to see how I was doing and waited with me for another 4 ish hours. Finally a junior doctor came in and asked what was happening with my stoma. I explained how it was swollen and not producing much and I had pain. He was debating whether to see it but decided we should wait for the registrar. It shouldn’t be too long but you never know. He seemed to think i would be staying in anyway. I sent my husband home and waited again. The nurses kindly charged my phone for me.

The registrar arrived, actually fairly speedily in the scale of hospital time. and asked if he could take a look. The bag came off and the small amount of fluid that had managed to get out smelled like nothing I have ever smelt. I apologised but he didn’t flinch, good lad.

The swollen stoma was still swollen and the output during the examination was zero. He had a feel around and told the junior doctor what he was looking for and how the fistula was the only part that had any output. ( This was the case for about a year I explained). I think deep down they were fascinated, and he said he would get a rubber catheter to see if he could unblock it. So in went the tube through my fistula, and he prodded it around up and down ( It reminded me of having your fat sucked out) He said he couldn’t really get anywhere and tried the stoma itself, this showed that it was only going down a couple of inches. He tried again and to my ( and definitely his) surprise, the other end of the catheter came out the fistula. I have tried to recreate the image just for you, you lucky things. ( I am no picasso I’m afraid, the brown bit is the catheter, and the stoma was much fatter than this)

He then said he didn’t think this blockage would resolve by itself and that I may need surgery, but would see a colorectal surgeon the next day.

I stayed in overnight in that room. Extremely boring as it was just four walls and a clock, I did have a bathroom of sorts to myself though. The tap on the basin was a bit weird, you turn it on and a jet shot out all over you, very interesting. My husband said that’s because it is actually a bidet tap not meant for there at all.

A few saline drips later and I tried to sleep,I had no pyjamas as we didn’t know I would be in. But they gave me one of their mini toothbrushes and micro mini toothpastes.

I slept in my top but decided to take off my bra, I got it half way off then realised I had my drip on the other arm and couldn’t get the bra off any further. Just in time a nurse popped her head in and saved me from embarrassment.

So far I hadn’t been sick, just nausea so no NG tube for me this time, phew. But I was super tired.

The NG tube (nasogastric)

Next morning I still wasn’t allowed to eat, it had been 24 hours by then, but it was ok I knew that I might need surgery. A nurse arrived a bit later and said I needed to move again to green bay, I had no idea where that was and had an awful feeling it was back on those chairs, but luckily it was a proper bay of four beds. I settled down there saying hi to my fellow patients, and waited for my husband and daughter to bring my belongings, I couldn’t wait for my pyjamas, body lotion ( I was so dry since being in here) and my charger. Although I sent a much longer list these were my main items.

I finally got to see the colorectal surgeon who had a quick look in the bag and said I may have a kink in the bowel, and there was some output so we should watch and wait as these things often do resolve. I could eat and drink and I was happy with that, and spent a better nights sleep.

I woke the next morning with the colorectal surgeon back. He asked how things were and I said maybe some improvement, and he said I could stay another night to see or go home to wait how things went. I asked that if I went home does that mean if things were not right, would I have to go back through A&E, but no I didn’t as they would give me a 72 hour access to go straight to the unit if I needed. Ok then I will go home, and here I am writing this from my sofa wrapped in a blanket hoping I am healing.

 

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.

 

 

#CrohnsAndColitisAwarenessWeek2022

 

THIS PHOTO WAS TAKEN JUST BEFORE I WS TAKEN DOWN TO SURGERY 7 YEARS AGO.

Crohns & Colitis awareness week has always been a week full of awareness on social media. I think it is so important to talk about it, as anyone with bowel issues will understand. Poo and all things related to poo hasn’t always been talked about until recently. When I was first diagnosed over 30 years ago it was a very different story.

I didn’t have a clue what was happening to my body. I was a teenager enjoying life when all of a sudden ( yes it was that quick ) I found myself in hospital with a young doctor snapping on his rubber gloves with a wink to my friend.

I was terrified because I was being sick out of one end and what felt like losing my ‘innerds’ out the other. Pain, embarrassment and bewilderment followed, with lots of scary tests and needles. The threat of a nasogastric tube if I didn’t stop being sick ( I refused point blank). I didn’t have a clue at the time how on earth it could stop me being sick.

A very young male nurse coming to my call for help when I had soiled myself in the toilet, that was awful for a young female girl.

After many weeks in and out of hospital being pumped full of steroids,I was told I had inflammatory bowel disease. They didn’t know for sure if it was Crohns or colitis but at that stage the treatment was the same. After a clinic appointment I saw a leaflet by Crohns & Colitis UK, this would be my source of information in those early weeks. So for the next 30 years and many other hospital visits, I had indeterminate colitis, Crohns colitis, ulcerative colitis and or Crohns, it was never decided on which one I had. I don’t have any photos of when I was poorly back then, the camera wasn’t invented in those days ; )

Fast forward to 7 years ago and that was when Tomas the stoma joined my story. No need for me to go into those awful times, as this blog covers all of that, but I want to raise awareness of this awful disease, because there are a lot of people out there suffering in silence. If you know someone with IBD then please check in with them, their life has been changed irreparably and they may not think talking about their fears, or their bowels to friends and family is ok, but it should be ok.

Crohns & colitis UK

 

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.

 

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.

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.

 

By continuing to use the site, you agree to the use of cookies. more information

The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.

Close