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.

 

 

 

#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

 

It’s not all bad

 

Cut the bag, size to fit

Making sure there is no shit

Coming out the edges, under the bag

All my hard work, my shoulders sag

Do I change my bag? Or just my seal?

whatever it takes to for my skin heal

 

Tomas just laughs and poo’s some more.

I try to catch it before it lands on the floor

Nothing to lose, I grab the bag

My son then walks in and starts to gag.

Get out I shout, whilst holding my belly

OMG mum, that really is smelly.

 

I slam the door shut and get back to my job

It takes all my strength to try not to sob.

The bag it on, my skin starts to sting

Just in time as the phone starts to ring.

Leave me alone, I am cleaning my stoma

For doing all this I deserve a diploma

My knowledge is vast regarding my poo

And everything else to do with the loo.

 

This is why I shout out about my condition

And having it done isn’t a terrible decision

Despite the poo and sometimes the pain

And the fact that I wouldn’t go through it again

I am left with a blob that I have to look after

But it helped me to live and overcome a disaster

I no longer have to rush to the loo

And there are many more things that I now can do.

So if you are worried about having this done

Just remember you will feel like your life has begun.

THE DISABILITY THING

I don’t like to class myself as disabled because people look at me and might even question me, which in turn makes me feel that I shouldn’t have that blue badge, or the orthotic for my foot drop or that my fistulas are not visible so therefore I don’t look ill or have chronic health issues.

I look like I can function as any healthy person might, but I do have health problems that you can’t see.

I have had neurological problems for many years which include foot drop which shows itself on many an occasion and can cause my foot to miss steps or even miss nothing in particular. If I walk any real distance my foot starts to drop and drag, it is tiring and awkward.

I fall and trip often.

I do worry that one of these days I might do something more serious than cuts and bruises, I have been close to hitting my head a few times.

They say it might be MS as I have a lot of clinical aspects but they won’t commit yet. They treat me as if I have got MS but I haven’t had a clear diagnosis, it can take years before they decided for sure.

I have a diagnosis of Idiopathic Intracranial Hypertension too, which means I have some mega headaches and awful pulsatile tinnitus because the fluid around my brain is more than it should be. I have had lumbar punctures to remove that pressure and all I can say is I am glad I don’t have it as severe as some. I was having a lumbar puncture for MS when they found my pressure to be high.

Then of course there are the fistulas that I have lived with alongside the stoma for nearly five years. I get pain and leakage and it generally makes me tired. I had a big chunk of muscle removed from my buttock and thigh which can have it’s own troubles.

I am not here to say look at me, feel sorry for me, my life is great even with my problems, I am happy and manage as best I can .I am here to ask everyone to accept others, and just because they look great, there may be hidden disabilities or health issues that you just cannot see. If someone gets out of a car with a blue badge, assume there is a hidden disability if it isn’t obvious. You don’t get given a blue badge without reason and it is not for anyone to judge if you need it or not, same for disabled toilets, and the worst culprits are usually other disabled people who’s disability or health issues are visible and don’t need to feel like they need to explain themselves.

 

I have actually never been approached by anyone but I can see the look. I know that some folk look at me and think I am just sneaking into the disabled toilets because I can’t be bothered to queue. If I don’t need to use them I won’t.

Merry Christmas and a happy new year

Another year has gone by but a very strange and scary year for most. I hope everyone is keeping safe and well.

Thank you for still following my blog although I have been a bit quite recently but hope to continue more in the new year. I really appreciate you all and would like to wish you a Merry Christmas and a happy and importantly, a healthy new year.

Crohns and Colitis awareness week 2020

 

Another year has gone by with lots of social media presence helping to spread awareness of these terrible diseases.

There are many manifestations of these diseases apart from going to the toilet multiple times a day AND night. There are many painful and degrading tests and medical procedures.

It is about the chronic fatigue, the weight loss, the vomiting, the pain, the bloody stool and mucus, or even just blood and lots of it, it is the surgeries, the skin diseases, the anxiety or depression, the high doses of heavy duty medications, the joint pain, the incontinence, the liver diseases, the eye inflammation, the multiple mouth ulcers, the hair loss, the fistulas, the swollen anal skin tags, the enemas and nasogastric tubes, the cameras in all bodily opening, the urgency, the panty liners and pads, the missed events, the steroid moon face, the lack of understanding, the needles, the uncertainty, the side effects to meds, the embarrassment of not having control over your bowels.

This was me the night before emergency surgery to have my colon removed.

These are just a few of the things we have had to put up with, so if you know anyone with IBD then don’t under estimate what they are going through, a lot of which is hidden. Ask them is they need help, or just sit and chat with them, it can make the world of difference.

IBD it’s not for the weak.

Pregnancy and stoma or J-pouch top tips

 

Hi, this post has been created using tips from ladies who have been pregnant whilst having a stoma or a j-pouch, they are also members of the group Ostomy & J-pouch moms, so you can learn from those that have the most experience. Thank you for all your input in this post and I hope it helps those women who are thinking of having a baby but want more information, make a decision.

Alice ( right picture above )

“8 months pregnant, didn’t have any complications with the bag apart from a little parastomal hernia that went back in after giving birth. I did have to have a maternity counsellor for my mental health as being back in the same hospital as when I nearly died bought back some bad memories of course.She thinks I had PTSD. So definitely take care of your mental health because we’ve all been through a lot, so this stressful time is bound to bring up some stuff for a lot of people.”

” Be prepared fro size changes with your stoma, and to go from a convex to a flat bag agin was bliss.”

“I wish I had photos of my pregnancy journey with a bag. For some reason I didn’t want to have many taken, unlike my 1st pregnancy without a bag.”

” I never took a picture of my stoma while pregnant. I wish I would have. It’s so weird because it moves lower and lower and it’s hard to do a bag change. Bowel obstruction at 28 weeks so I was in the hospital for a few days and then on a full liquid diet.”

” I have two J-pouch babies. Both pregnancies were different, first one was a breeze, however, I did experience intermittent bleeding which they put down to pressure from previous surgery and had this again with second pregnancy. Both babies lay so low they thought head was engaged and were hard to scan from 12 week appointment. Second baby caused huge pressure on my pouch and the last few weeks caused an intense stinging pain- ice wrapped in toilet paper helped to sooth this”

” Get a good OBS/ GYNAE, preferably one with experience with ostomates. Have a clear birthing plan.Some can have a natural birth but others may not be able to for various reasons.”

” Take pre-natal vitamins that are easy to break down and get a good quality one”

“Eat small frequent meals, stick to food that is easy to digest. Ostomates have a higher risk of blockages while pregnant.”

” Order cut to fit flanges as stomas tend to grow wider. Be prepared for it to possibly get longer or prolapse. Some even experience a hernia.”

If you would like to add some more tips to this list then please get in touch using the contact form, I would also like to make a photo gallery, so please send any in that you would like me to use.

 

 

 

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……..

 

 

 

Merry Christmas to all my followers

I would like to thank all my followers and readers a very merry Christmas and a happy new year.

I am so grateful to you all for reading and commenting on my posts and I hope you will stay for 2019 too ;). I couldn’t do it without you.

The fact that you have read and liked my musings has helped me to come to terms with my new life. It has been difficult, funny, sad, scary, lovely, but through having a stoma I have met some wonderful people, and chatted via message to folk who know what it is like to live with a stoma.

THANK YOU THANK YOU THANK YOU THANK YOU

 

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