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.

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.

 

 

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.

If it’s not one fistula it’s the other

I am now being referred to St Marks hospital in London for my vaginal fistula / defect. I have had issues ” down there” for years since my first surgery, and since the rectum removal so a bit longer won’t make much difference in the scale of things. Just hope they can help me.

Why do things occur or worsen straight after seeing your surgeon? you wait for ages to see them, then as soon as you are back home, things suddenly get 100 times worse. My stoma fistula has now decided to over power my stoma. For the last few weeks the fistula has decided to produce all the output whilst my stoma has none. The plumbing has altered and I don’t know what this means for the stoma. Will it wither and die? or will it keep on moving as if output will pass, but it never does?

 

Have you ever seen Scrad from Men in Black 2 with Jonny Knoxville? well this is Tomas and the fistula ( the fistula being the annoying second character attached to the first)

I think I need to consider a refashion sooner rathe than later and maybe re-site Tomas to the other side of my tummy, and just hope that I don’t get another one. My surgeon is retiring at the end of May so I think I need to ask for his advice re another surgeon.

Anyone else had a refashion or siting? how was your recovery? how long were you in hospital for?

OSTOMY AWARENESS DAY 3RD OCTOBER

I am all for raising awareness and feel that it is important to show a stoma in all its glory, otherwise there really isn’t any point telling people what it’s all about without the fine details.

People are curious and have never seen a stoma, yes they can look scary and unusual, believe me I didn’t want to look at mine for weeks, and in hospital my stoma nurse changed my bag a few times with me looking away. But after I got used to it I would have people ask me questions about it and I was more than happy to oblige. ( I assume if someone didn’t want to know about them then they wouldn’t read my blog).

Stomas can look very different from person to person as the reasons for having a stoma vary too, mine is an ileostomy where I had my entire colon removed and my small bowel ( Ileum) was bought through my tummy. You can have a colostomy where you will have some large bowel left ( Colon), you can have a urostomy ( which is for your urine) there are still some more for example a jejunostomy where the part of the small bowel called the jejunum would be bought through. These are the main types but you can have many others.

 

Some protrude out more than others like mine, this is handy when you have an ileostomy or high colostomies because your output is much looser, a lower colostomy will usually have thicker output much like normal poo but most are made in the same way, this diagram is excellent showing how an end ileostomy is made from INSIDE OUT OSTOMY LIFE

These photos were from a previous blog post from some very brave and wonderful people.

For some of us having a stoma it isn’t the end of surgery, we often have our rectums and anus completely removed too, ( Barbie or Ken butt ) to make sure our disease has gone and doesn’t cause problems. Like me you might develop fistulas and sinus tracts which is not uncommon with Crohns disease and ulcerative colitis. As you have probably read before I have had surgery to remove a perineal fistula by having an IGAM flap. ( a large piece of muscle from my thigh and buttock was placed into my rectal dead space and a flap of blood rich skin was sewn over that part ) I also have a stomal fistula which will need surgery in the future.

So if you know someone with a stoma of any kind, remember that they have usually been through a few tough surgeries to get to the point where they look and feel well. You cannot see anything so please don’t judge us if we need the disabled toilet or can’t walk far due to fatigue. These surgeries are life saving but there is usually a cost to that.

 

When things don’t go quite according to plan

STOP I WANT TO GET OFF

Having surgery is a rollercoaster ride at the best of times, but what if things don’t go smoothly? how does that feel? it can be quite a challenge to keep positive. Was it something you did? or didn’t do? Was it something someone else did or didn’t do? It doesn’t matter what caused it, this is where you are and you have to get on with it.

All surgeries come with risk, and some more than others, bowel surgery in particular is a surgery with many risks, wound dehiscence ( where the wound breaks down in some way and the scar may open). This complication is strange as it isn’t a question of just stitching you back up, you need to have the wound packed over possibly many months to heal from the inside out. My abdominal wound opened up at the bottom and it took 6 months to fully heal , to view CLICK HERE 

Weirdly it looked very painful but wasn’t really painful at all, and although the finished scar is not as neat as i had hoped, it looks like another belly button as it dints in too, but it healed well without infection.

This most recent surgery has some wound dehiscence , but because of where it is I won’t be putting you through the image. It seems to be closing quicker than the previous one.

I suppose my two most life altering complications were the rectal stump blowout ( in short, rectal stump blowout is a dreaded complication of an often already complicated patient scenario that causes pelvic sepsis )

The stump that was left in situ to be removed at a later date when I was more stable decided to blow its stitches causing pelvic sepsis. I had to have a rectal catheter placed through the burst stump into my pelvic cavity to drain the gunk that was gathered there. Lovely.

I would say it was one of the most uncomfortable things ( excluding or same as an NG tube) that I had. There is a balloon at the top that gets inflated after the tube has been placed, but whenever I sat or moved awkwardly, the damn thing brushed against something inside and caused the most excruciating pain for quite a few minutes. Unfortunately for me, the nurses didn’t really know the pain it might cause and kept insisting I sit out of bed now and again. I eventually spoke to a consultant who needed to reinsert it and he understood my issue and said I couldn’t sit with it, It was all quite traumatic, I had the drain for a good couple of months. This complication in turn caused the fistula and ongoing bottom complications that are still ongoing today but hopefully sorted with this  latest surgery.

The other complication is with Tomas the stoma.

I know, he is lovely and cute and all that, and I probably would have died without him, but he is a complete pest at times. It started very early in my stoma journey in hospital. When Kate my stoma nurse and I discovered that poo was coming out of the bottom of my stoma where it meets my skin.

WARNING, PICTURES OF STOMA POOPING

As you can see, this can be a big nuisance for many reasons

  1. The stoma can be quite watery or busier at different times and this can cause the bag to lift as it loses stickiness.
  2. This as you can imagine, causes leakage onto the skin
  3. And this in turn causes sore skin and incessant itching in that area.
  4. It is difficult to change my bag standing up because I can’t put anything under the spout to catch poo as it comes out onto skin as well anyway.
  5. I am constantly in a battle with my skin to keep it becoming a real problem, and I like to air it as much as possible when I change it, so it isn’t a quick change for me, it is time consuming.
  6. I have the dilemma of deciding on more surgery to move the stoma to the other side of abdomen and hope I don’t get more issues doing that.
  7. There are probably more but having a brain fog moment

All I can say is this, there is always light at the end of the tunnel, things do improve, and although it might not be the life you had hoped for, this new life brings new friends and new beginnings and maybe a life that’s worth living.

That leads me nicely ( ok plugging my daughters band Marty) to a song my daughter wrote for the band Marty, and I listened to it and thought it had some great words of encouragement if you are having a tough time coming out the other end of illness.

If you would like to follow the band you can find them on most social media sites @thebandmarty

 

 

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.
  4. 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.
  5. 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.

Muscle transfer and flap surgery recovery IGAM flap

WARNING- This post has surgical wounds.

I have just had a big surgery for a perineal vaginal fistula.The procedure is known as an IGAM flap. Inferior gluteal artery myocutaneous flap reconstruction. I had a wide excision so that my surgeon could clear the fistula and unwanted tissue and repair the vaginal wall, then muscle was taken from my buttock and top of thigh to fill the dead space, where a flap of attached tissue was laid over to cover it, and stitched into place, this ‘ paddle’ as they called it, enabled them to view the wound regularly to make sure the flap was working and no tissue necrosis was forming.

DAY 1- SURGERY DAY- PART 1

I set my alarm for 5am so that I could drink the rest of the pre-op drinks.  I didn’t need the alarm. My nerves are just starting again so I watch The Real A&E in the hope that it takes my mind off my problems.

Weird being up and showered by 5am, don’t normally see this side of 7am unless I am going somewhere hot. No bikini where I was going.

Nerves were kicking as we made our way to the ward. I was prepped and ready to go. Usually I walk with my pillow and anti slip socks down to the theatres but this time I was in a brand new theatre further away so got to have a ride on a bed. I was given an epidural for after surgery pain relief, which took a few goes because of my ” Wonky back”, anaesthetists words, as was ” Did you know that this kind of surgery is very painful?”. Thanks for that. The oxygen mask came next, not keen. It reminds me of horrible teeth extraction as a kid with the gas. I can still smell it. After a few stabs in my arm, a vein was suitable and a few minutes later I was asleep.

I remember waking up and being told that surgery was finished and all went according to plan. I wasn’t in pain because of the epidural, and I am one of the lucky ones in that anaesthetic doesn’t affect me badly. I was taken to the ward. I couldn’t see much of the wound yet, I had a drain in the top of my thigh which I thought was a weird place until I saw the actual scar…..

 

The next day the nurse changed my dressing and I asked if she would take a photo of my scar on the buttock, I unfortunately won’t be showing my actual flap as is it hidden between my butt cheeks, but you can get the idea that it is a rectangular piece of skin and tissue that is stitched there. When I first saw the photo I was a bit shocked at the scar, it was like a great white shark bite is the only thing that came to mind. Although since then I have other pics that show it looking reasonably neat and tidy, and a district nurse has since said that it actually looks good and some that she had seen looked barbaric, so I guess it’s not too bad after all.

First pic is second day, second pic is about 10 days post surgery.

 

The care was excellent and my surgeon and plastic surgeon came and said they were pleased with the result and were hopeful that this would do the trick with the fistula. I opted to have the epidural removed after only a couple of days because it caused awful itchiness, and my left leg went too numb and they were concerned the epidural had done something. It was all good and the numbness went away ( except at the site of surgery).

I was very surprised how quickly they discharged me, drain came out on day four and that is when they let me go home. I was a bit concerned because the drain site was leaking, and I wasn’t allowed to sit at all for four weeks AND I wasn’t allowed to lie on back OR right side for much the same. This is all well and good but eating was a mess and my left leg was so so achy and painful after a short while. I didn’t get any offer of occupational therapist to see how I would cope with this, and mentally it was dreadful after about 2 days at home.

I have an issue with NHS surgery aftercare, it is more or less none existent as I will explain in my next post. In fact if it wasn’t my surgery and life on the line it would be comical. When you are discharged home even with district nurses ( who can’t tell if surgery is failing or what the fluid coming out of other exits is ( yes this was happening ) then you would think there was a plan to get in touch with someone who does……..

 

 

 

Living with fistulas

A fistula is an abnormal hollow tube that forms and links two organs of the body. I was originally told I had a perineal sinus tract ( an abnormal tube that is closed at one end) but they later found it to be a fairly long and wide fistula.

I have an unusual fistula, because I don’t have a rectum but have a fistula there that connects to the top part of my lady bits near my cervix. It is unusual because when I google it they don’t seem to be very popular AFTER rectum removal. A fistula connecting the two is called a recto/vaginal fistula but mine doesn’t come under that heading. My surgeon called it perineal/vaginal fistula, and although it is awful to live with ( especially 3 years down the line and two failed surgeries) if I still had my bowel then bowel contents would come out of my female parts, so there are some things to be thankful for.

This is a ( very) basic diagram where my fistula is in red so you can get the idea what is happening with me.

Needless to say, I leak out of both bits more or less constantly. It seems to come in waves of severity. I think the fistula kind of drains, then fills up then drains and so on. Sometimes it leaks just yellow fluid, others it can leak the fluid with blood or/ and  pus ( grim, believe me I know how it sounds, but I also know how it feels) If they don’t drain properly or close up temporarily then an abscess can form and you can become quite unwell. A surgical thread called a Seton is placed into the fistula to keep it open and draining and sometimes if they are tightened regularly then the fistula MAY heal. ( Although if you speak to people who have this they might not agree that a fistula can be cured this way)

They are notoriously difficult to get rid of and my upcoming flap surgery in October is the last resort really. There are no promises that it will work and I can only hope that it gets rid of the damn thing. The flap surgery I was having for the perineal sinus is pretty much the same, I will be having my buttock muscle used to fill the dead space in my pelvis after the fistula has been removed. So a plastic surgeon does the difficult bit this time. I asked him what would happen if it didn’t “take” the flap graft and he said ” You have another one” hmmmm.

I am very scared of the recovery for this operation and just hope it goes as smoothly as possible. If anyone has had this type of surgery I would be grateful for any tips.

 

I often mention my stomal fistula on here which I have had since the original surgery. This is where an abnormal link occurs from somewhere in my small bowel to the skin surface just at the base of the stoma. This time my poo does come out onto my skin around the stoma. Now this is quite difficult to manage and live with too. Apart from the fact that my skin has to be protected, I find it hard to cut my base plate to exactly the right shape AND to place it in the correct place. I have tried quite a few things and know in my heart that I will be having surgery to get rid of that too. Fistulas are not very common with ulcerative colitis and are more usual in Crohns disease, so I often wonder if I had Crohns of the large bowel, as I was told it was once ,then they said Crohns colitis then back again until it was settled on indeterminate colitis. Of course as with most things fistula can develop from other reasons too.

As you can see quite clearly, my fistula looks like a mini stoma and that connects somewhere inside along the length of the small bowel. It is tiring to look after two fistulas and I would like to be able to get on with my life without them. My stoma is great in every other way so surgery comes with worries too because I have no other problems with it at all so could I be causing more issues that isn’t there now… decisions decisions.