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

 

 

The wrong thing to say to an ostomate

This week I have seen some comments on other stoma advocate’s posts that have upset me. I don’t mind the odd joke about my stoma as I am very open and a lighthearted joke or two lightens the mood. I can laugh about it quite happily with my friends and family.

But get me a stranger being rude and unkind and it makes me think that it is what everyone really thinks deep down. People commenting with the puking emoji on seeing a stoma is one of those. But the very best of the bad bunch is one that my friend The spoonie mummy mentioned on social media this week. It was from Twitter and the person concerned is a nurse in America I won’t be naming though, they can’t help being an arse ( excuse the pun)

Comments such as ” I can deal with anything in the nursing field…but a trach and an osomy I just can’t do” ( puking face)

(A trach is short for a tracheostomy which is an opening created in the neck through to the windpipe so that a tube can be inserted to help with breathing, it is a different type of stoma hence the ending of ostomy.)

” I gag every time I hear I have a patient with one ” ( puking face).

” They are both nasty as FK to me and stink sooo bad” ( puking face)

What are their mentors teaching them? I hope these comments are seen by their employers so that they can decide if nursing really is the job for them.

Now don’t get me wrong , I can assume a lot of people might find stomas difficult and even scary, but putting such things on social media for the world to see really does make me feel sad to the point that I think if they feel like that then does everyone? Am I kidding myself that I can change the negative thoughts of people by being an advocate for raising awareness? These kind of comments really sets things back a few steps, but we must push through them or we end up hiding.

A similar comment on another post by Mr Colitis Crohns of eight puking face emojis this time from a primary school teacher. With the added poetry of ” F…ing gross”. Can you imagine if your child had a stoma and was under her care? hmmmm.

You may think, why are you telling us if it can be upsetting? well I think it is important to know that our job is to teach these ( luckily only a small few) people that their words and thoughts are inappropriate and really don’t help new stoma patients to overcome their fears. Exsisting ostomates are slightly more thicker skinned and we need to be the voice to let the world know that having a stoma of any description is perfectly fine and not dirty, smelly or any other discriminatory remark that these people think.

I have also read on an Australian site that there was a case that found a comment relating to the physical manifestations of a disability ( in this case a stoma ) at a workplace, the person had comments from her boss that were classed as discrimination, and acting in an insulting manner, so I urge these people to think before they speak.

Just as an extra note, I know you get derogatory comments in all walks of life not just stomas.

 

GUEST POST – DAN RICHARDS @onearmedwonder

 

I am so pleased that Dan agreed to write a blog post for me and my readers, he is a massive advocate for body positivity and body confidence including being a presenter on Channel Four’s NAKED BEACH, and I admire him greatly, thank you Dan.

Find Dan @theonearmedwonder on most social media channels.

“Coming to Terms with Body Altering Surgery”

Up until about 3 years ago, if you’d have asked me what ‘Body Confidence’ is I’d have probably looked at you and said something like “what on earth do you mean?” It was only through a friend who was making waves in addressing body confidence and lack thereof that I got my first introduction to it, but through my own naiveté and the fact that my friend was a woman I also assumed it’s something that only effects women!? Obviously I found out that this wasn’t the case.

I lost my arm and shoulder whilst in the military in a road traffic collision, I was 23 years old and my career was going relatively well. I’d not long finished a tour of Afghanistan and just completed a five-week trek through Nepal and The Himalayas, with aspirations to train and qualify as a farrier. These ambitions (and eventually my career) were taken away from me almost in the blink of an eye.

I had accepted my situation, life as an amputee, pretty much straight away. In hospital I somehow managed to crack a joke and get a few laughs and I suppose, looking back, it enabled me the mental capacity and freedom to begin the learning process of adapting to and overcoming this new situation and environment I found myself in. The rest of my life as a left handed man, having spent my life right hand dominant. The first goal I ever set was to win back my independence, I had no idea just how much of an impact goal setting will have on my life in the years to come.

I returned to my regiment after 6 months of rehab for 3 more years before being told I was to be medically retired, during that time I’d relearned to ride a horse, gained back my fitness and learned to rock climb, ultimately though, I had to accept that my aspirations of becoming a farrier were just not meant to be.

I returned home to my parents after 10 years with the military on 28th September 2012 and so began my spiral down to what became my rock bottom. I guess the absence of any self-worth and my entire identity coupled with the fact and realisation that I couldn’t get a job anywhere or even an interview, I felt more like a drain on society. I tried and ultimately failed to ‘find a way out’. The realisation that this wasn’t normal and that I needed help.

Over the next few years I set about getting myself back to London doing various jobs including working as a chauffeur and project management deciding to grab any opportunity that came my way.

I’d always felt like there was something missing, I’d spent all the proceeding years accepting my situation and how “different” I looked from everybody else. I spent a number of years laughing about the various descriptive ‘tongue in cheek’ self-reference jokes. I figured that if I could make people laugh and see that I could laugh at myself (which I still can), then it’d put others at ease.

I used to wear a prosthetic arm with a pretty cool robotic hand, the fact that it actually served no functional purpose to me other than giving other people something cool to look at, the prosthetic arm became my shield like some kind of robotic safety blanket!!!! I’d wear clothing too big just to hide the outline of anything out of the ordinary underneath my clothing. I guess I compartmentalised everything in a kind’ve validation seeking exercise! It just meant that I hated summer because wearing less clothing wasn’t an option I was willing to explore, this image of self-confidence I portrayed was a put on show for everybody else, I wouldn’t even take my shirt off, go to a swimming pool or even the beach just to avoid any judgement. I literally felt like a duck floating gracefully on the surface of a lake but kicking hard underneath to stay afloat; it was a pretty vicious cycle!

 

So what changed? I had decided to take up cycling early in 2016 and in doing so got myself an Instagram account as a means to track my progress. I had set a goal of competing in the 2018 Invictus Games, I had caught the attention of an agency who offered me a modelling contract, this coupled with some test shoots the cycling and my first modelling, I started to notice various changes including the fact that I wasn’t wearing my prosthetic arm anymore, in fact it had stayed under my bed for the best part of a year, my cycling was getting better and I developed a whole new appreciation for what I was actually capable of!

I was asked by my agency to take part in a test shoot project for an art photography student – a test shoot is an unpaid shoot where a photographer books a model to build each other’s portfolios. The catch with this was that it was a risqué shoot; completely out of my comfort zone!! About half way through the shoot I just decided to embrace the unknown and I guess in essence I took a long running jump so far out of my comfort zone that (speaking metaphorically) the only way back was to get used to it and stroll back, I guess you can liken it to jumping into a pool for the first time to embrace the cold. It’s the single most liberating feeling I’ve ever had. What unfolded from that point was a complete feeling of self-acceptance and self-worth that had been missing all those years.

Even though I had accepted my body altering surgery from a hospital bed way back in 2009 which I absolutely had, I guess I hadn’t accepted that acceptance runs so much deeper than what other people think. I began to put in place a number of prerequisites, some rules if you like, for myself.

For one thing I spent a number of years constantly comparing myself to other people’s aesthetic, especially where other guys were concerned. I’d look at guys with big shoulders and chests and instantly feel utterly shit about myself because, well, I’d never be able to look like that – a quarter of my upper body is missing including my right shoulder and it’s never coming back, So I decided that if I couldn’t be “that image” then I’ll just be my own and compare myself to the guy I see in the mirror. More over from that another big marker for me to contend with was what (I thought) other people thought of me and people’s opinions, then I discovered one day at the beach (of all places) that nobody is actually really bothered about me being there, they’re more interested in doing their own thing and those opinions… to be quite honest somebody’s opinion of me is literally none of my business and completely out of my control and what’s out of my control isn’t my problem, it’s there’s so, let them deal with it.

I never really intended to become a body positive advocate, I guess that all change in 2018 when I was asked to cast for and then subsequently accepted as a member of the Body Confidence Host Cast for a Channel 4 series called Naked Beach.

Naked Beach was a 5-episode social experiment reality TV Series which looked at and dived into the various hang ups people had about themselves when compared to the ‘media norms’ of an idealistic and beauty standard or the “perfect image”. Dr Keon West; a social psychologist conducted research that found people with low opinion of themselves; Body Confidence, Life Satisfaction and Self Esteem, that being around an array “normal bodies” allowed them the lower their barriers and be able to begin to address their issues, and together with Natasha Devon, Naked Beach was born. I guess that’s what gave me a platform and a voice for advocating body confidence.

Coming to terms with body altering surgery is something that has taken me, all in all, almost 8 years from 2009 to 2017! Could it have taken less time? Yes, probably, who knows? I never really had anyone like myself to look up to on social media or anywhere else for that matter so I’ve spent a lot of time figuring it all out for myself, I’m grateful that I’m in a position to be able to help and share my experience with others. This came a lot closer to home recently, towards the end of 2019 when my brother was diagnosed with Ulcerative Colitis which resulted in the removal of his colon. I guess he knows I’m at the end of a phone should he need help or advice but he’s my little brother; he’ll get the advice whether he wants it or not!! We often joke to my mum about us both being amputees we both agree though, that above anything else we’re pretty lucky.

What else can I ask for?

 

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

 

 

 

 

 

#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.

 

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.

 

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.

 

 

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.

 

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.