persistant perineal sinus – TOMAS THE STOMA

March 3, 2019

An eventful week

Well it’s been a full week with work and going out. Even though I have Laryngitis, with a cough and being mistaken for a seal, I actually enjoyed the week. The cough started a couple of weeks ago, then it made me lose my voice ( or at least most of it ) and a gland in my neck was painful, but weirdly I didn’t feel that ill most of the time. ( Except for coughing gagging and spluttering in the mornings ).

I still have the awful perineal sinus tract which is the thing that makes me feel worse than I actually am. It is becoming painful and I have leaked through my underwear ( with pads ) quite a few times.

Anyway, we had our young IA night out for Notts & Derby and it was great, I had a lovely time and there were quite a few of us who made it out. As the young IA rep ( I still find this funny as I am 52, ) I like to attend these events. Salts healthcare organise and pay for these nights and we are so grateful to them and their wonderful rep, Helen.

I had my MRI for the sinus on Thursday, so hopefully won’t be waiting too long for the flap surgery. This was at the Circle treatment centre ( QMC ) and it was very modern and lovely ( it is part private ) I went into the MRI feet first as it was for pelvis and rectum, although I don’t have a rectum : ), I had to try and not cough during it because the image might be affected, this was a challenge but with the help of Adele singing to me I managed it until the last minute.

Friday night was girly night out and I was ready for it. We had a great night out ( actually started at 4pm, so technically still day, but never mind ) went to a meal then some drinks and dancing and lasted until about 10pm, not bad for an oldie. I had one awful moment when I got up and realised yet again I had leaked, but managed to sort it out in the disabled loo. I have learnt my lesson to take out pads and swabs etc, with a longer top, so I don’t feel that I have to go home. Just a side note that a young man came out of the disabled toilet and said he used it because he couldn’t find the mens, my friend said well my friend ( me ) was genuinely able to use it , he said ” yeh right”, if only I had had more drink, I would have shown him. hahaha.

Since having a convex bag, Tomas has been amazing, no tantrums or leaks from him so far, I am happy about that, I even go an extra day sometimes. At the moment I use Pelican platinum convex and it has never lifted at all, I use the thin belt that hooks onto each side and it really does feel very secure. Unfortunately, no bag, as yet has stopped me taking off some mornings but at least the bag stays put.

So apart from sounding like Gollum, this week has been a good one.

February 24, 2019February 24, 2019

The trouble with perineal wounds-wound care and dressings

Ok, so this is more of an update and a moan.

I have had this stupid perineal sinus tract for two years now, after the proctectomy I have had two further surgeries to try and sort it out. Now I don’t blame anyone for the complication, but I do think I should have more wound care because of living with such an awful wound for this length of time. No one seems in a hurry to help me, and no one seems in a hurry to sort me out.

Just before I went home I still had blood on the sheets and the ST ( yes, a sanitary towel was stuck to my buttocks as a dressing) felt wet and uncomfortable. I asked a nurse if she would help me tidy and clean myself up, which she did as best she could, even she didn’t really know what to do with the wound. So again, I had a sanitary towel stuck to my cheeks, this time I said look, can we just stick it to the pants? it’s doing the same thing but not causing me a rash by sticking to my skin. I definitely believe that had I not asked to change the ” dressing” , it wouldn’t have been done before I went home. and I was never given any information about the care of the wound for any of the operations.

That was fine up to a point, but what to do when the operation failed an the sinus returned a few weeks later ? No one really helps with that except my stoma nurse really. I role a swab up and place that over the wound ( right between the cheeks ) but I still need to wear a thin pad as it can leak through. The discomfort is sometimes awful too, any wound hurts and this is no exception. It feels bruised and sore, so sitting for any length of time ends up being painful. Also being up and down, standing and sitting causes the leaks to be worse, so what do you do?

I suppose what I am trying to say is, there is nothing dressing- wise, that I have been given that is specifically helpful for a butt wound. You get sore ( like nappy rash) constantly changing the swab, and you are constantly aware that you might leak through. This has been me for two long years, so you would think that because of the long waits for surgery, someone would have come up with something better than this. The only time anyone checks it out is when I go to my practice nurse one in a while, this waiting cannot be doing me much good. I am now awaiting another MRI to see why it is back with a vengeance, so will have to wait for that result before I get put on any list, and they have to coordinate the plastic surgeon again so that could take a while.

So I need the powers that be to come up with better care for the perineal / perianal wounds. Most people have to wait a long time with no real support before they get surgery. I never imagined straight after my original surgery that my stoma would be less of a bother than my bottom.

I also didn’t think the timeline for sorting me out would be horrendous.

November 25, 2018February 5, 2019

My latest surgical adventure

As I am at home recuperating, and because I can’t drive, sit properly or go out, I decided to write a post about my complications of stoma surgery.

( great to get those TED socks off )

JUST A WARNING OF STOMA PICS THAT HAVE ISSUES IN CASE YOU DON’T WANT TO LOOK.

My latest ramblings about surgery started many many months ago with a barbie butt. I had my rectum and anus removed in November 2016 and it went fairly well I thought. The pain wasn’t so bad ( if having your bottom removed had something to compare to) I struggled to find a comfy spot but felt I could cope.

For two years things were not as straight forward. I developed a persistent perineal sinus tract that was a nightmare. A hole had appeared that constantly leaked fluid from my pelvic cavity. It was uncomfortable and mentally challenging. I would go out with friends sometimes, and leak through the dressings. As you can imagine, it wasn’t a barrel of laughs. I had an MRI to check how deep etc, then the waiting for results and hospital appointments and decisions what to do with me took TWO years. Does anyone know the psychological trauma of leaking constantly through your non bottom does to you?

Anyway, it was decided I may need a flap of muscle to transfer into the wound, but my surgeon then decided to open me up to check first and see if he could clean it out. In May this year I had this done.

I woke up to a wound that was big enough to fit a fist in and a sanitary pad stuck to my bottom. I was sent home with absolutely no aftercare at all except to get my GP nurse to change dressing ( i.e sticking another pad to my arse).

My nurse was confused as the wound was a gaping cavity and she felt it should be packed. She rang the hospital ward who didn’t really have a clue but said it didn’t say to pack it. I was in limbo with a wound you could lose your plunger in. My consultants secretary was off so I couldn’t ask him. I didn’t get to see a doctor when I left the hospital. So my nurse just did as she was told and I just continued to leak. I rang my surgeon who booked me to see him and he explained that the cavity was too big to heal without flap surgery and he would book me in asap. I really like my surgeon, but really???

After about two months my sinus decided to stop leaking as much ( bloody typical) and wasn’t as painful, the hole had shrunk.

Two months later I went down to surgery after seeing a plastic surgeon too, and woke up without the flap surgery once more. They had opened me up and noticed that the end of the sinus that led to my pelvic cavity was healing, so they tidied me up and sewed me shut. I was pleased that it was all over now, and that I hadn’t needed the more complex surgery, although I have some reservations about it returning.

For example, the consultant that came to see me the next day said ” I always tell my patients not to worry at all if the hole returns, it might do because there is still a cavity but you can then go to your GP nurse to get it packed so that it can heal from the inside out.”

I feel some concerns here.

Since my original surgery I have also been plagued with a stomal fistula. This is another abnormal tract but from my small bowel through to my skin right next to the base of my stoma, you really couldn’t get any closer. This meant that when my stoma poo’s, the fistula poos too, that’s fun. I managed with it for these last two years fairly well. But it can be painful and awkward. As you can see from the pics, I have a very sore patch where the output touches the skin. As you can see, it has stripped my skin there so when any output gets onto it, which is most days, it is agony with pain and itchiness like nothing I have experienced.

The bag has started to lift when it poos so that my skin is unbearably sore, and I have leaked about 5 times in a few weeks. once at work (you just stand there for a second not knowing what the hell you are going to do ), and another time in my uniform but after I had got in from work. The rest was all in the night, the most recent the night after I got home from hospital. I tried to get out of the bed quickly but remembered that I had had surgery on my bottom so was unable to leap gracefully out, I kind of rolled onto the floor. I stood, wobble a bit and felt it run down my leg. This was not fun at 5am with a bruised stitched arse.

I was cursing and yelping with pain from my middle and bottom but didn’t manage to wake anyone for moral support, I felt putting the “big” light on and stomping around might be a step too far, so I got on with it and sorted myself out.

I have been advised to get the surgery and now feel the time is right. I am so not happy with it at the moment, the thing has got bigger and therefore more output comes out of it, and then more leaks and soreness. This surgery should then be it I hope. Would I go through stoma surgery again under the same circumstances? I have to say yes because these are smaller issues than the bigger picture, and yes it is hard but life with IBD is no walk in the park.

August 14, 2018August 14, 2018

What is a perineal sinus tract exactly ?

SURGERY DATE FOR WIDE EXCISION AND GLUTEUS MAXIMUS FLAP 27TH SEPTEMBER 2018

Because I have now been pencilled in for my surgery date I thought I would explain what it is I actually have, and what they are going to do about it. I have mentioned that I have this complication but never went into real depth. At the end there is a youtube video of the same surgery i will be having, so if you are not too grossed out, take a look.

After having the proctectomy I stupidly thought that would be it for surgery and I could then get on with my life. I had been sewn shut ,so what could possibly go wrong ? Well there were plenty of things as it turns out. I noticed after about a month that there was fluid coming out from that area on to my underwear. It was watery and yellowish. I went to my GP who took a swab and it was an infection that needed antibiotics. I went on those for a few weeks but it didn’t really do anything.

Off I went to see my surgeon when I could get in ( which wasn’t very quickly). This had started in about December 2016, and I think it was roughly February at this point. He put me on my side and prodded and probed and said ” You have a perineal sinus tract”. Apparently it can happen especially after pelvic sepsis, and because I had had a lot of complications pre proctectomy with rectal stump blowout, I was the lucky one.

Because I had the large bowel and rectal stump removed, I developed a hole that leaked whatever was forming in the cavity space that was left. It is a long fibrous blind end tract covered in infected granulation tissue with an external opening. They can vary in size, and my surgeon wanted to do an MRI scan to see how big it is and how it affects my perineal area.

Now I had to wait for that scan appointment to come through. It took quite a few weeks, then I had to wait again for an appointment with my surgeon for the results, which took quite a few weeks too. At the appointment he said that there was a cyst at the top of the tract and he couldn’t be sure if the two were connected or not. He needed to speak to the radiologist to discuss and he would get back to me. It could mean a larger operation for a flap surgery or it could mean a smaller operation to get rid of the sinus.

I again waited weeks for this, and then had to wait more weeks to see the surgeon again. We were now in to 2018, over a year since the original appointment, and all this time I have a constant leak which often hurt to sit and made that area sore. I could almost feel it filling up and the pressure was painful then it would settle into a leak, then the cycle would start again. I often leaked through clothes even wearing pads, and that would stop me staying out , I would just go home. I have fabulous friends and family who would sometimes get me into the toilets and rinse and dry clothes with the dryers.

My surgeon decided to do the smaller surgery ( this still involved general anaesthetic) and try and excise the sinus. I got that surgery in May and I was left with a much bigger leaking hole, with not much information to go with it. I managed to get an appointment with my surgeon and he said that the sinus tract was too big to cure with simple measures and I have a large deep cavity close to my skin. I need the bigger flap surgery. I would need to see plastic surgery as they would help with the surgery.

I didn’t wait that long to see the them and he said I would either need a muscle from my inner thigh or the buttock muscle to put into the cavity to help heal, he thinks it is more likely the latter one as the cavity is deep and that muscle is larger ( thanks mate). I will be in hospital for about a week to make sure it has all taken well. I asked what if it didn’t work ? He said I had the other one spare. Let’s hope it works then. I am likely to be off for 6-8 weeks. I am very scared of this one, I know it will be uncomfortable to say the least, and although it is my only real hope of getting rid of the sinus, it could fail and isn’t guaranteed. I think about how mutilated I might feel and that I will look like Frankenstein’s monster before I am finished. I know that I need this, but really thought I was done with all this surgery malarkey.

It’s quite amazing how you and your body cope with all these ups and downs, it is so mentally draining and so into the unknown, you don’t know what the outcomes are going to be, and whether you will be ” cured “. You worry about the pain and recovery, you worry about work, you worry about body image. But in the end you have no choice, I don’t want to live with a constant leak , fatigue and a low immune system as my body tries to fight the sinus damage and fails to make a difference. Antibiotics don’t help in this situation either, so no matter what infection swabs show, they won’t eradicate it. It has to be surgery.

I HAVE DECIDED TO SHOW YOU THIS YOUTUBE VIDEO BY THE COLORECTAL JOURNAL, OF THE TYPE OF SURGERY I WILL BE HAVING AND HOW IBD SURGERY CAN AFFECT YOU IN WAYS YOU DON’T REALISE. I OFTEN THINK HOW WHAT SEEMS LIKE A SMALL HOLE CAN CAUSE SUCH A BIG OPERATION. IT IS FAIRLY GRUESOME, YOU HAVE BEEN WARNED, BUT ALSO VERY INTERESTING AND MUCH MORE INTRICATE THAN OPENING ME UP AND STUFFING MUSCLE INTO THE SPACE THEN SEWING ME BACK UP AGAIN.

August 5, 2018

Bend over……….

I had a humiliating experience the other day, and I think that although I can laugh about it now, not many people would be very happy with what happened.

I am a fairly strong person when it comes to showing body parts, and most IBD-ers know what it is like to have their lower body on show to GPs, consultants and the like.

I had an appointment with the plastic surgeon to discuss where he will take muscle from to fill the dead space where the perineal sinus is. All was well, he had a look and we discussed options, then the fun part begins. ” Before you go I would like a photograph of the wound, if you nip along the corridor there is the medical photography dept, take this form with you”.

Me and mum went there to find the chap was out the office just for another five minutes. We waited and he arrived, firstly I was slightly shocked that he wasn’t in a white coat or medical looking at all. I went along with it though and turned down a chaperone thinking that inside the room there would be a clinic setting with a clinic bed and blanket to cover bits that didn’t need to be in the shot.

How wrong I was, inside was a fairly large photography studio exactly like any other, those umbrella things and bold lighting, with a black large cloth at the back. NO BED, just a couple of stools/chairs. He studied the form and said ” Not sure how we are going to do this”.

” Maybe stand on that cross” I felt a bit like a deer in headlights, not sure who was more embarrassed.

I had to stand in the middle of it all, drop my jeans and pants ( take out my dressing from between my cheeks ) bend over and open my cheeks with my hands………. I know……… I was pretty mortified. To top if off he bent down with his camera to take the shots. ” Just a couple more”. It felt like a porn shoot.

Now I may jest telling the story, but OMG. I can’t be the only one who has a wound in a dodgy place can I? it was as if he had never come across this situation before. I didn’t dare say no because my plastic surgeon had requested it and I didn’t want to delay surgery.

Would you have done it to??Or maybe you already have? I didn’t even know there was such a dept in the hospital.

May 5, 2018

3rd surgery done, what next?

Dressed in my sexy gown and Teddy socks I am ready and waiting to have my surgery for persistent perineal sinus and exploration.

I nervously walk to the pre theatre room to have my anaesthetic, pillow tucked under my arm ( we are told to take the pillow with us from the ward.) There are a few people in there, my anaesthetist included. I have seen her already when she went through the choices I have with pain relief. I feel quite calm really, must be getting used to this.

My cannula goes in, oops missed, I will get a bruise. In it goes again, this time ok. ” Just giving you something to relax you” she says, it works really well and I feel pleasantly drunk. I tell them so, I then get the oxygen mask and don’t panic at all.

When I wake up I don’t feel any pain at all, just a bit of a sore throat. A nurse is sat beside me all the time in recovery. I go off to the ward to recover some more. I remember being told that my packing in the wound will dissolve and the nurse at the GP should just change the dry dressing.

I didn’t know that this would cause me so much stress. I go to see the nurse at the GPs after I am discharged and she seems to have never heard of dissolvable packing and that it usually needs repacking daily. She phones the ward but no one there seems to know the answer to what I had inside the wound. We decide that I would keep trying the surgeons secretary and she will just change the dry dressing as told on the notes. I wasn’t told much at the time and didn’t have a visit from the surgeon letting me know anything. I have a letter that states I will likely need further definitive surgery and he will speak to the plastic surgeons.

This is all I have so I ring around to try and find out if I need repacking or not, I get tearful after being told to ring back on Sunday when my notes might be on the system as they have gone to coding. I resign myself to this and worry about the future surgery, I know that is not going to be an easy surgery as it will probably involved mutilation of my buttocks to sort out a flap. ( This had been discussed previously ) If I thought my body image was wrecked with a stoma, then I ain’t seen nothing yet.

The journey from beginning to end is not over yet as I had hoped , but I will carry on in the usual manner and take it as it comes.

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