stoma ileostomy surgery – TOMAS THE STOMA

December 2, 2022December 2, 2022

#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

March 11, 2022March 11, 2022

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.

July 24, 2021

Time for Tomas to have a makeover

Since getting my stoma five years ago to now has been a bit of a rollercoaster of leaks, trying different bags and seals, discomfort etc to now needing a refashion of Tomas. Unsure yet if they will keep it the same side or have to move it to my left side.

The last few months was a worry for me because my stoma now doesn’t work or produce output, but weirdly the fistula does it all now. it’s very near my skin so very difficult to make sure my skin is protected and another thing I have found out is that the pressure of the fistula doing it’s thing can cause the leaks because it is against the base plate where the force is. ( hmmm very jedi )

Anyway, I think it is time for Tomas to be reborn. That pesky fistula has had it’s day and I just hope another one doesn’t form, three’s a crowd.

My most recent bag change has cemented my feelings, I get sore skin even though output hasn’t always leaked, from the general tight skin and a vein that is visible and uncomfortable coming from the area of the fistula, with smaller veins coming from the stoma, I am sure the fistula has caused all of this. All I want is to have a nice stoma without added extras, I have kept going with this for 5 years. The fistula pushes the stoma to the left so it is awkward as F to put the bag on in exactly the right place.

The Eakin seals have helped so much these last years and without them I feel sure my skin would be so much worse.

It has been a few months since my surgeon has passed me on to a colleague due to retirement but I haven’t heard anything probably because of backlog covid etc. I have managed this long so a bit longer is neither here nor there. I have such a love hate relationship with Tomas, if it was a normal stoma with no issues I would be so happy because the stoma actually is great ( when it was working) . I rarely got partial blockages, and have never had a full one, it just seemed to cope with whatever food was given, with no trouble. Even a pea popped out in full like it was being shot from a cannon, hilarious. A slither of mushroom, no problem just popped out too. Peanuts on the other hand can be troublesome for me, I did have a partial blockage from too many handfuls of peanuts, I just massaged around and drank plenty of fluids, luckily it seemed to work.

So to have to change because of an added complication is a worry.

As you can from these photos through the years, you can see the fistula changes, and I suppose it will only get worse.

Comical side, to help me through the difficult bag changes

April 2, 2021

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?

March 6, 2021

FIVE YEAR STOMAVERSARY 3RD APRIL 2021

What a rollercoaster those five years have been.

A gastroenterologist who nearly killed me by leaving me suffering, to ten weeks in hospital having major scary open surgery to remove my large bowel and have an ileostomy formed, including 3 or 4 days on the high dependency unit ( I was a bit out of it there so don’t remember exactly how long).

Waking up with a naso -gastric tube the size of a hosepipe down my nose, and having a second central line put in my neck.

A slow recovery with many complications, rectal stump blowout which caused pelvic sepsis, and feeling so ill I thought I might die. A wound that opened up at the bottom which needed packing for 6 months. A fistula developing at the base of my stoma ( this all happened in hospital ).

Losing over 2 stone in weight and needing another tube for feeding, this one was slightly less hosepipey. Being very depressed and ill.

Having PTSD symptoms ( ongoing with counselling )

Having my remaining rectum and anus removed and sewn shut, developing a perineal-vaginal fistula and needing 3 surgeries then more extensive surgery. More embarrassment by having to have a medical photo of my rectal fistula.

Then ……Feeling better each day and meeting new people, joining the committee of the Notts & Derby Ileostomy association and becoming their Young IA rep. Going back to work and feeling part of life again. Holidays, nights out ( Pre-covid) and finally smiling again.

Starting this blog. Meeting the TG Eakin team and blogging for them on A Bigger Life website and community, along with a promotional video.

Don’t give up.

January 23, 2021

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.

August 2, 2020

Bathing and hot tubs with a stoma

For those of you who are nervous about having a nice long bath or a good few hours in the hot tub, it is not out of the question. As long as your bags stick well then having a bubble bath and soaking in there for an hour or so will not cause your bag to leak or the glue to disintegrate. Hot tubs for me are different as I explain further down.

I love having a bath more than a shower even if it is not bag change day, and will just towel dry the bag afterwards making sure I dry round the base thoroughly. Same with having a shower. I can stay in the bath until the water starts to get colder and all stays well with my bag.

I was more worried about a hot tub when I first went in one with some friends. Would my bag hold for a long length of time? Can’t imagine the embarrassment if it went pear shaped. Anyway, the first time I went in was fairly ok, It stuck pretty well and didn’t leak but the glue did go a bit mushy round the edge.

The second time I went in the hot tub which was probably for a bit longer, the base plate went really mushy and came away in one section, luckily I wear a convex and the important part didn’t leak, I remembered to take a spare bag just in case, glad I did.

It did put me off a bit, but a few glasses of wine later meant I didn’t care. ; )

CHEERS

June 5, 2020

STOMA SPECIFIC COUNSELLING

The sad news of a young man in the UK requesting his right to die rather than have a stoma has spurred me on to continue my quest to ask the government to put into place within the NHS, a stoma specific counsellor role.

Rather than wait a very long time doing a petition to have it declined because there may not be enough signatures, I have written to Matt Hancock ( Secretary of state for health and social care ) in the hope that he will act upon my request. All those who are awaiting stoma surgery have a degree of fear of the unknown and have no real idea of what to expect. To be able to speak to someone who has that knowledge either by having a stoma themselves, or be a trained stoma counsellor, would have a big impact on the mental wellbeing of future stoma patients. To be able to ask those questions that are running around in your head and get the right answers would be so positive.

It’s the fear that can delay surgery so that fear needs to be calmed and the only way that can be done with someone who can answer those fears. I have had counselling but found it mediocre at best because the counsellor just couldn’t understand fully and therefore couldn’t possibly help with my concerns.

I was lucky though, I had the total support of my family, friends, and stoma nurse and I didn’t have time to think about having a stoma due to the speed of surgery ( not really sure if that is positive or negative) but what I do know is that depression is an affect of chronic ill health and that can alter your fear and vision of what life with a stoma is like, that is why a stoma specific counsellor is so needed before an after surgery.

This is a copy of the letter on the way to Matt Hancock, I just hope he reads it.

Dear Matt Hancock

As you may have read in the news very recently, a young man from Barnsley has asked for his right to die rather than have a stoma formed to save his life. That someone can believe death to be a better option than life with a stoma is surely indicative of the life-altering nature of the surgery, both physically and mentally. I am one of thousands of British people with a stoma and I can understand the fear and uncertainty this can cause.

This is why I, and many others believe that a stoma specific counsellor would be the most help to patients pre and post surgery.

I had generic counselling myself and although it was good to talk to someone, I believe I would have experienced far greater benefits with a stoma-specific expert counsellor. It is often left to the individual themselves to seek out this kind of help either online or through stoma charities.

Many people are unable to find help and support within their immediate circle, as few people are aware of the conditions that lead to having a stoma, and it can be difficult to talk about.

They may not realise that their chronic illness is causing underlying depression, which in turn leads to them to fear for their quality of life in the future. This suffering, which often occurs in silence, could be vastly reduced by the implementation of stoma-specific pre and post surgery counselling.

Rather than go through a slow process of a petition to ask you to review my request for a stoma specific counsellor, I believe it is critical to contact you directly as time is of the essence. The news of the young man being so widespread in the stoma community could potentially put people off the surgery who are in desperate need of it.

Would you please reply with any other information you may need to make this important role within the NHS happen.

Kind regards

Clare Mee

May 19, 2020

#WorldIBDDay2020

Let us all have a think about our own journey’s of IBD, where are you now? still struggling? still coming to terms with your diagnosis? or are you lucky enough to be in remission?

We have all been in one of these positions at some time or other and unfortunately some are stuck in one of them for a long time. Talking poo is a taboo subject even now in 2020 so many people won’t talk about their bowels for fear of humiliation. They can only just about speak to a doctor.

It can be a fear of cancer, a fear of someone poking around and looking into their bottom. A fear of whats to come. I know this as I have been there too, at 19 years of age having a nice young doctor poking his fingers up my bottom is mortifying I can tell you. Being in hospital with a flare up and soiling myself before I could get to a toilet, pressing the bell in the toilet after I missed and got it all over my nightie and slippers then a new young male nurse coming in and me saying would he mind if I had a female nurse because I felt scared of what he would think, and too self conscious to let me help me clean myself up.

Seeing A LOT of blood instead of poo and wondering what the hell was happening inside my body. Being threatened with an NG tube if I continued to be sick every time the pain waves came. I will never forget…

Fainting with the pain when having a bowel movement and my husband finding me on the floor. Not having the energy to get out of bed for days/ weeks at a time. If you have a fear of needles you soon won’t have, blood thinning injections so you don’t clot because you can’t move except to try and make the toilet ( with a drip ) cannulas every four days because each one clogs up or just because they have to be change, blood tests galore. You are lucky if you have someone who can find your vein straight away, otherwise it’s pin cushion time, especially if they can’t get a cannula in first time, OUCH.

Most people will need surgery at some point in their lives, you are very lucky if you don’t. The surgery isn’t for the faint hearted either, it is major surgery where parts of your intestines will be removed. You may then have other manifestations on IBD, fistulas, perianal disease, skin issues, eye issues, sores, mouth ulcers of the type specifically given to those with the disease and many many other life altering problems that refuse to mend. The surgeries seem never ending, no one told you what else you might have to fight through.

But you do fight and that is why you are all awesome.

Never underestimate the shear strength of an IBD patient, they have been through hell and back………………… and not just once.

March 21, 2020March 21, 2020

4 year stomaversary

I started this post just before the coronavirus pandemic became more widespread so that is why it hasn’t been mentioned in this post, yes I am worried as I have other health issues that mean I could be vulnerable if I do get the virus, stay safe everybody.

Sometimes it seems an age ago, sometimes just yesterday, but what is for certain is that it’s a rollercoaster ride having stoma surgery.

Stomaversary 3rd April

How do I feel 4 years on ? Do I celebrate or commiserate? Well I am certainly still here, and mostly enjoying life. I say mostly just because of the little blips I keep having or have had since surgery. My stoma’s friend the fistula, that’s a big blip and so is my leaking bottom parts, that’s more than a blip, but in general I feel good.

All the years living with IBD make me realise things are so so much better with a stoma. I can go out and about without the worries that go with having a severely diseased colon and although I still need to use a toilet to empty my bag, the urgency isn’t there anymore.

What about body image after all these surgeries? I admit I don’t like the bottom of my abdomen scar and having my large bowel removed seems to have made me lose my power of a fast metabolism, that I don’t like, as I have a love of anything sugary. I am still going to the gym which I actually like when I am there, and I come away feeling much better. I have limitations at the gym but I work around them. ( Alas this is not to be anymore for the foreseeable future due to coronavirus)

I have met some wonderful people in the stoma community and have a new interest with my blog which has given me some great opportunities. I have brilliant family and friends so I manage my issues with support. I have been lucky enough to have helped others with my story and hope to keep helping others who need it. My story isn’t there to frighten but to prove life goes on with a stoma and it isn’t so scary after all once you are through the surgery and recovery period.

One thing to mention is that most stoma patients don’t just have the stoma to cope with, many of us have either complications from surgery or disease severity before surgery, and /or other auto immune diseases/ issues, so life can be difficult but with the right support, we can enjoy our lives.

I am awaiting for another MRI to see why I still leak and am on a different inhaler for my asthma. I still have foot drop after walking a distance and have been given various devices to help me, but to be honest they are not that great. I have had a confirmed diagnosis of idiopathic intracranial hypertension after two lumbar punctures found raised pressure, which I have pulsatile tinnitus and headaches, luckily for me I don’t appear to have papilledema which causes blindness due to the swelling of the optic nerve.

It would seem I am doomed to ill health, and believe me I felt that way when I started with all this and still do to some extent, why me ? who knows but it all happened in the last ten years ( apart from the Crohns colitis, that was when I was abut 20 years old.) It could always be worse so for now I cope with what has happened.

Once again stay safe everybody and hopefully this awful time will pass quickly.

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this: