fistula – Page 2 – TOMAS THE STOMA

October 14, 2019October 23, 2019

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……..

August 26, 2019

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.

December 21, 2017

More updates on perineal problems ( bottoms)

I went to see my surgeon this week about my bottom problems. I am now on the waiting list for further surgery to explore and excise the perineal sinus. He will take a biopsy to see why it bleeds out the sinus when I have my menstrual flow. It will be totally cleaned out and packed with antibiotic gauze like when I had the proctectomy. He is not using a plastic surgeon this time but if it returns he will do the larger operation.

Not sure how I feel about this, it is ok but the chances of it coming back are quite high so am I better off having the larger flap operation now rather than later? who knows? I will just have to see and hope that this clears it up and I can get back to some normality.

I have already signed the consent form so I know it has to be within the 18 week deadline for the NHS I just hope it is sooner than that. Not sure how much longer I can put up with the uncomfortable symptoms. Not to mention the cost of panty liners.

I think people are probably a bit bored with the ” having an operation ” thing when it is your third one in two years, it becomes nothing , but to me it is still a big deal having to go through it again. Because I look ok it is assumed that I am ok, but mentally I am going through a phase again. It must be because the operation is all set, I seem to have a mental wobble and my mind does overtime. I just want it all to be normal down there without worry of leaking and discomfort. I never knew when I had a proctectomy that this could happen, I assumed that when it was taken away, that would be it, all better. But alas, this is so not the case for a lot of people. It wasn’t until I read about it that it is very common to get wound issues like sinuses and fistulas, and they are notoriously difficult to treat. This is ok but we have to work and live and to keep having time off puts us in the ” always off ill ” bracket, which I do not like being in. Work are fine about it at the moment, but I am not.

I feel we are left for months while they figure out what to do with the sinus’s , and then wait more months for MRI’s, then wait some more months to see the surgeon again with the result, then wait some more months for the operation. It has now been a year since the proctectomy and just under a year since the sinus developed and I am only just on the list for more surgery. The government need to sort this out, get more money into the NHS because the waiting lists just to get back to see your own surgeon is ridiculous. I am struggling along after two major surgeries that have left me with a complication, and I am the one to suffer because it is not major surgery this time, so therefore not urgent enough to bother with.

The discomfort is tiring and horrible to live with for this length of time. I am being tested for fibromyalgia too as my body just feels so sore all the time, this is something that can develop after big surgeries apparently. My joints feel swollen and achy and I guess I just feel sorry for myself at the moment. This is not a great week.

Sorry that this is a very negative post this time, that is how I am feeling right now.

Next post on these issues will be the surgery itself, watch this space if you would like to know what they do, the recovery process and whether it actually does go away never to return. If fibromyalgia does enter into the equation I will also let you know.

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