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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

 

 

 

 

 

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#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.

 

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The problem with stoma bags

I have been trying various stoma bags for my and Tomas’s needs recently and really need to find my perfect bag, and I don’t mean a Gucci.

 

I need the perfect bag, who can solve my problem? any takers

Since I first got my stoma 4 yrs ago I have been on the search for the right stoma bag, and  it is a very long journey indeed. They all have good points, some more than others but can I find exactly the right one to meet my needs? the answer is unfortunately no, not for me and my fistula with its irregular base shape and output issues.

If I could have a mixture of bags rolled into one my choice would be…

The base plate of the Pelican Platinum with vitamin E

The colours and no sagging effects of the Salts Confidence B

The selection of sizes and baseplate sizes of the Coloplast Sensura Mio.

So the things that don’t work for me but would work for me if different…..

The Pelican Platinum balloons like a dodgy lip job, but the base plate sticking is by far the best I have ever used ( and believe me when you have a pooing fistula, this is essential) When it balloons it can lift off with the weight of it which then causes leaks, it isn’t all the time but it is a problem. The size is great for me with it being a mini but I don’t mind larger. If this bag was in the colours and material of Salts Confidence B and Coloplast Sensura Mio, I would be the happiest ostomate.

 

Salts Confidence B is an amazing bag in many ways, the colours are superb, the material is perfect with next to no ballooning and the way it sits ( no sagging when full ) is fabulous, BUT the baseplate although sticks well on the whole, it can’t manage to stick well where my fistula is. This is a real shame because I really like everything else about it and it causes very sore skin just at the bit around my stoma.

Coloplast Sensura Mio is a great all rounder with a a good solid grey colour and many options with sizes. Again it doesn’t seem to balloon and it sticks quite well BUT again, it can’t cope with my fistula, so again this is sad news because I love the bag too.

I cannot explain how painful and itchy getting sore skin is, it is so bad that the only thing to help it is to take the bag off and attend to your skin, let the air get it ( with plenty of tissues ) and try various lotions and potions to ease it. Can you imagine a sore then loose poo getting onto it for hours? It burns.

I know there are others bags on the market, but for one reason or another I really didn’t like them. These three are as near to what I like that is available ( I think ) so if you, the supplier, could get your heads together I would be very pleased.

So for now at least, I will be continuing with the Pelican Platinum because the baseplate is so important to me and my skin.

 

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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.

 

 

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Hitting the wall

This is a bit of a “woe is me “post, apologies in advance.

 

I have always been very confident about my stoma and scars but this last surgery has knocked me for six. I am feeling very body conscious and not just with stoma and scars, I am now finding fault with other body parts too and I think I haven’t got over how my body has changed. Having a stoma has made me feel well but because I feel well, I have gained quite a bit of weight which I hate and am still trying to to get fit by going to the gym. I feel better for it but am not seeing a difference which is disheartening.

My brace has now come off but I am now picking issues with scars and lumps and bumps. When I have tight trousers or leggings on I can see where the muscle was taken from my buttock and thigh with an indentation. I hadn’t realised the scar would be so long either and wasn’t really told. I also hate the way my abdomen scar really dints in like another belly button lower down. There isn’t anything I can do about either which is frustrating.

My stoma is causing issues again with leakage in the middle of the night due to the fistula, my skin is also reacting with the bag causing an itchy rash. I am scared to have the surgery to repair it and can’t afford the time off work.

All of this is just so damn tiring, I want my mojo back and am hoping that spring / summer will be a better time.

 

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Brace face, my experience with orthodontic braces

 

My teeth have been the bane of my life for many years. As a young child my baby teeth refused to come out and I remember the awful times I needed gas to be put to sleep and get them removed. My big teeth were growing in all directions to get past the milk teeth. After what I thought would be a final trip for teeth removal I was referred to an orthodontist for a brace. I was in my very early teens at a guess and my mum came with me. I was horrified to be told I needed some teeth removing for the brace to fit, and something I regret to this day is that I point blank refused.

I don’t really remember a lot of persuading to change my mind and we went home and that was that. I would love to think that if they had told me that when I was older my bottom jaw would recede to the point I hate profile photos, or that I would smile with my mouth closed on most photos for many years ( looking like Zippy usually) I may have decided differently. But they didn’t tell me anything like that and as a child I probably wouldn’t listen anyway.

So from my twenties to my fifties my teeth have been a hated part of my body. The prices of braces were ridiculous and I knew there would be a chance I needed more extractions, which I was too scared to get done. So I carried on with this hatred, trying to hide my smile and teeth at every opportunity. Children are usually honest and at work one time, a young girl I was helping came out with ” Your teeth are like a vampires”  I replied in the jokey way that I do, but that statement never left my mind. If my teeth did show on photographs the two front ones would look dark because they were set back, and as for the bottom ones …… it was like Stonehenge.

My friends have gorgeous teeth and I was very jealous. When I see photos of me doing a zippy, I can feel the anguish of that photo but no one else would guess. There would be the odd photo that caught me by surprise and I really didn’t like them.

Eventually after I had my stoma surgery and had been so unwell I decided I needed to treat myself and got a loan and braces. It has been the best decision that I have made, so two years and about five months ago, I braved my fear and had three teeth removed and got my brace fitted. I felt great straight away. I opted for a clear brace on the top and because of my overbite a metal brace on the bottom. ( The overbite is here to stay though unless I have jaw surgery and that’s a no from me).

I could slowly see an improvement and began to smile with my teeth showing, and yes it can be painful, and food gets caught in them but my self esteem was improving so much.

Last week I had the braces removed, which was mostly painless, and my teeth are so much better. I smile all the time and show them off, and photos are not an issue. I have many body parts that I don’t like, but the teeth thing was causing some real mental issues.

 

 

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The never ending story

 

 

December

Recovery is very slow at the moment because my wound from the IGAM flap surgery is still healing. I have had two patches that have opened up and the second one is still being dressed daily. I have been told to stay off my bottom as much as possible to give it chance to close up.

Things are very tough and mentally draining. The constant leaking from my other orifice is probably on balance the worst of the two evils because I don’t have an answer yet as to why I am still leaking there. No one is keen to take a look yet so I will still be like this for a few more weeks until I eventually get an appointment through to see my colorectal surgeon, then of course there will be more of a wait for tests, then more of a wait to get back for the result, ( been there too many times to be optimistic ).

I am prone to random bouts of tears, suppose this is normal after a large surgery when things haven’t healed as quickly as expected but I am sure I will be right again soon.

My buttock / thigh scar is still looking ok although I have large patches that are still numb and may well stay numb but also quite painful at times like someone has booted me up the backside . I do find that I can’t sit for long anyway before it gets uncomfortable ( and it increases the leaking ). As the swelling has gone down I can now see and feel where the muscle was taken from that area, it feels very strange and from the side I am sure my buttock looks square.

I have no idea whether the leaking ( with blood sometimes , and not just a bit) is serious or means things haven’t worked, but finding it difficult to get hold of the right people to ask it a huge task.

I have decide to reduce my hours at work which I know is the right thing to do, at the moment I am on reduced hours until I feel up to normal life. I had to go back to work as I was getting brain mush from crap daytime TV.

Looking forward to a few festive days with my family, and I hope all my followers and readers had a fabulous healthy happy Christmas and New year.

January

Leaking has calmed down a lot and my bottom feels fine, so feeling that bit better about it all, long may it last. Still feels weird down there though so will see over the coming months if things are genuinely on the mend.

 

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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

 

 

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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.
  5. 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.
  6. 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.

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