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.

 

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.

 

Living with fistulas

A fistula is an abnormal hollow tube that forms and links two organs of the body. I was originally told I had a perineal sinus tract ( an abnormal tube that is closed at one end) but they later found it to be a fairly long and wide fistula.

I have an unusual fistula, because I don’t have a rectum but have a fistula there that connects to the top part of my lady bits near my cervix. It is unusual because when I google it they don’t seem to be very popular AFTER rectum removal. A fistula connecting the two is called a recto/vaginal fistula but mine doesn’t come under that heading. My surgeon called it perineal/vaginal fistula, and although it is awful to live with ( especially 3 years down the line and two failed surgeries) if I still had my bowel then bowel contents would come out of my female parts, so there are some things to be thankful for.

This is a ( very) basic diagram where my fistula is in red so you can get the idea what is happening with me.

Needless to say, I leak out of both bits more or less constantly. It seems to come in waves of severity. I think the fistula kind of drains, then fills up then drains and so on. Sometimes it leaks just yellow fluid, others it can leak the fluid with blood or/ and  pus ( grim, believe me I know how it sounds, but I also know how it feels) If they don’t drain properly or close up temporarily then an abscess can form and you can become quite unwell. A surgical thread called a Seton is placed into the fistula to keep it open and draining and sometimes if they are tightened regularly then the fistula MAY heal. ( Although if you speak to people who have this they might not agree that a fistula can be cured this way)

They are notoriously difficult to get rid of and my upcoming flap surgery in October is the last resort really. There are no promises that it will work and I can only hope that it gets rid of the damn thing. The flap surgery I was having for the perineal sinus is pretty much the same, I will be having my buttock muscle used to fill the dead space in my pelvis after the fistula has been removed. So a plastic surgeon does the difficult bit this time. I asked him what would happen if it didn’t “take” the flap graft and he said ” You have another one” hmmmm.

I am very scared of the recovery for this operation and just hope it goes as smoothly as possible. If anyone has had this type of surgery I would be grateful for any tips.

 

I often mention my stomal fistula on here which I have had since the original surgery. This is where an abnormal link occurs from somewhere in my small bowel to the skin surface just at the base of the stoma. This time my poo does come out onto my skin around the stoma. Now this is quite difficult to manage and live with too. Apart from the fact that my skin has to be protected, I find it hard to cut my base plate to exactly the right shape AND to place it in the correct place. I have tried quite a few things and know in my heart that I will be having surgery to get rid of that too. Fistulas are not very common with ulcerative colitis and are more usual in Crohns disease, so I often wonder if I had Crohns of the large bowel, as I was told it was once ,then they said Crohns colitis then back again until it was settled on indeterminate colitis. Of course as with most things fistula can develop from other reasons too.

As you can see quite clearly, my fistula looks like a mini stoma and that connects somewhere inside along the length of the small bowel. It is tiring to look after two fistulas and I would like to be able to get on with my life without them. My stoma is great in every other way so surgery comes with worries too because I have no other problems with it at all so could I be causing more issues that isn’t there now… decisions decisions.

 

The annoying and weird stuff about having an ileostomy

WARNING – STOMA PHOTOS

Although my life is better with a stoma there are obviously some things that are not so much. My first pet hate is the dreaded itch and it you don’t have a stoma then let me explain….

Sometimes your output ( poo ) leaks a bit under the baseplate, it can’t always be helped as there is always a small gap around the stoma so you don’t strangle it, ( believe me, I have wanted to strangle it a few times ) and this means that the poo burns the skin which starts off by causing the most painful itch that you can’t get to unless you remove the bag, and it can go on for a good while. Your skin eventually gets used to being burned by your poo and the painful itching stops, but it leaves very sore skin.

( The bobbly bit is a fistula where I get output from when I shouldn’t )

Also for no obvious reason your skin decides it doesn’t like the bag you have been using for the last 6 months, and reacts to it by being red and sore too.

( This photo is a mild soreness around the stoma, it has been more severe at times)

 

I started with one type of bag 3 yrs ago and all was well until one day I started with a reaction and it just got worse and worse, so I had to change my bag, no rhyme or reason.

I also hate it when ( again for absolutely no reason that you can think of) your output get so watery it looks like a well known water feature.

( gross I know, but thats the only word for it ). As you can imagine, changing the bag when you have Niagara falls doing its thing is no mean feat. Oh and it makes your skin red raw if it gets through your bag.

Granulation is fun, bumps and lumps of over granulated stoma develop and look unsightly (relatively speaking ). They can be uncomfortable and usually have to be frozen off with silver nitrate.

And another thing…….worrying what people think all the time, I really shouldn’t but sometimes I do. I try and be brave and ponce around the beach with my stoma cover out but deep down I am still acutely aware of folk looking. Half of me isn’t bothered and the other half, that annoying devil on my shoulder, tells me I am. It is a weird thing to be proud of my scars and showing them off, to that little voice that’s they’re saying ” should you really be showing the world ?” same with the blog, should I really be showing everyone my arsehole, cos that’s really what I am doing indirectly, or does it matter what people think? as long as I am helping people and raising awareness. I have decided to carry on and show the world because that is more important to me.

Using a disabled toilet is another thing, the amount of looks I get because I sometimes use a disabled toilet. If only they knew why, but why should they? it’s absolutely none of their business.

The fatigue….it is ruthless. I am not sure why I get it and if it has to do with my surgeries but it can be very debilitating. One minute you are like a ” normal “person going about your day, then wham, you are totally and utterly exhausted unable to function that well at all.

The strange….There are times when weird shit happens. You pass an identifying piece of food like a chunk of mushroom. I remember changing my bag and seeing two fairly large chunks slip out the end, and taking a few minutes to  identify it. You forget about that beetroot you had earlier and nearly pass out with fear when you empty your bag to see what appears at first glance to be a whole lot of blood.

You feel like you need a poo the old fashioned way, that’s very weird. You can feel gas travelling around your small bowel and it gets to that point when you would have passed wind from your bottom the normal way but it then carries on towards your stoma and you fart through that instead. Going through customs and instead of the officer patting you down and scanning the top of the bag through your clothes, asking if she can ‘have a quick peek’ !!! and when you open the peep hole in your bag she looks at you in a feeling sorry for you way, with an intake of breath through her teeth as if to say, that looks sore.

 

 

 

Meeting the TGEakin team.

I was extremely lucky to go to Belfast to visit TGEakin. You may have heard of Eakin’s products but don’t know a lot about them. Their most well known product is the Eakin cohesive seal. I have used this since just after having my surgery and cannot rate it highly enough. But there is one thing about it that is possibly better and that is the people who are part of the Eakin team.

This short video tells the story of TGEakin and how it all began.

 

Because I use the seal, they asked me to go over to Belfast as they wanted to produce a short documentary about the seal and how it helps you with getting on with life, they also didn’t want to use an actor and felt it would be much better using a “real” stoma patient who uses the product. Of course I said a definite yes to that.

All the arrangements were made, and off me and my husband went to Ireland. We had an amazing time, they treated me like a celebrity and were so welcoming when we arrived, and were shown round the factories. Tom Eakin himself came to say hello, as did his son Jeremy. The other son runs another part of the Eakin family business which you may have heard of.. Pelican Healthcare . I finally met Laura who I have emailed regularly because of my posts in ” A Bigger Life ” website but never actually knew what she looked like. I also met Kiera and Patrick who arranged the shoot. They were all lovely.

Laura and me         ( Laura deals with ” A bigger life” website)                                          

Kiera and me

Patrick, me, Jon ( hubby) and Kiera

In my protective clothing in the factory

The factory was so well organised and immaculately clean. It was so interesting to see how the products were made and how meticulous the staff were with making sure the products left the factory in perfect condition, I can see why Eakin’s seals are well liked.

The filming started on the streets with me and Jon visiting different places, and meeting friends going for coffee, having meals out and drinks. We then did the talking part in the hotel, which was the bit I was anxious about, but it seemed to go well, and I hoped they could edit it if it was awful. Sean ( the person doing the videoing) was good at making me more relaxed and I got to know them all comfortably by the end of the two days.

Here is the finished product, it is strange seeing myself in a video but it was great fun, and the fact that I am a genuine wearer of the seal. ( Oscar’s next year, must sort out my acceptance speech )

 

Visit their shiny new site at  www.eakin.eu

Body image and positivity

 

Body image and what we should look like haunt most people. Those with physical body changes , more so. Why should we worry if our bum looks big in something or if our features don’t conform to scientific studies of what beauty is? so what if we lost a limb or our hair? so what if we have a stoma…

As you can probably see from my posts, I am an open person when it comes to my stoma, but believe me, I have many hang ups about my body. I could write a fairly substantial list about what I don’t like, but for the most part, it doesn’t include my stoma. It’s things like, my ( slightly) large nose and lack of a great jawline, but really, why? why do I feel like that? because I know it isn’t perfect so therefore I don’t like it. What is perfection? well science has decided it is certain criteria and measurements that are deemed attractive, but if that were true why are we all different? and why do we find different people attractive than others? therefore science is not right. It has a lot more to do with the person we are, and how we carry ourselves than what we actually look like.

I happen to come across a really great programme called Naked Beach

The concept is quite scary to even the most body positive of people but it really shows you that in the end no one really cares what you look like. Three contestants who are very insecure about their bodies go to a private villa in Greece where a number of body positive people are there in the nude ( initially with body paint and knickers) and they help the three overcome their hang ups, and at the end they have to join the team and go naked. It really seems to work because the team that are there to help have all sorts of shapes and sizes, including Dan who had to have his arm and shoulder amputated. After watching it I felt sure I would have gone there and stripped right off and gone skinny dipping in the sea too.

I love the photo shoots from #GetYourBellyOut and Purple wings charity too, they really show that we are not really different from anybody else, we are just as gorgeous. The more we show that we don’t mind having our bottoms on our tummies then the more it becomes accepted as just one of those things like a broken leg, and nothing to stare at on the beach.

( photo Purple wings photoshoot, permission granted for this blog)

I am no spring chicken but have decided that I am comfortable with my body enough to wear clothes I like whether they are tight fitting or not. I will wear bikinis with my stoma bag on show on a crowded beach, why shouldn’t I? I realise that if you are not confident then you will think that everyone is looking at you and whispering under their breath. But maybe, just maybe they are thinking how good you look, how confident you are even with a stoma ( or other difference). If you speak to everyone you know, I can almost guarantee that there will be something they don’t like about their bodies, so that must be true about all those folk you think are staring at you.

I say embrace your body and it’s differences and don’t let me be the only one with a stoma and a bikini on that beach.

Oh, and watch  naked beach  

YOU ARE NOT ALONE

Crohns or colitis ? ( plus a bit about the IA information day)

Sorry I haven’t posted in a while, busy busy busy. I am also excited about a thing I was involved with to do with stomas, but it is still hush hush at the moment so I can’t tell you yet. Watch this space !!

I went to the National ileostomy and internal pouch association information day the other week in Birmingham, and it was a great day out. I met many people who I only ” know ” from social media so to meet them in person was so nice. It was based around  Living well with a stoma or internal pouch and it was very informative. We got to have a great taster session about exercise with Sarah Russell called Move without fear, which was great for me personally as I have a fear of exercise for my abdomen. She is a massive inspiration having achieved so much since having her own surgery.

I missed hearing a talk given by Natalie Gardner ( aka @thespooniemummy) with the young IA peeps which I am sorry about because I now wished I had been there, as it was about body image which is a topic that can mean a lot to people with a stoma, particularly the younger generation.

We also had a mindful session which gave us techniques on how to slow down and relax which I found useful. ( Although me and Sue did a bit of giggling 🙂  )

The talk I was very interested in was called ” Should it be called Crohns” but alas as is usual for me, it wasn’t at all about the subject I had thought it might be about. I might just add though that it was a very good talk and very interesting, so I am glad I attended. I really thought that it might be about the question mark over indeterminate colitis/ Crohns colitis. I thought maybe he was going to discuss whether Crohns and colitis were actually variants of the same disease, as I have often wondered. Yes they are both IBD, but many folk have been told one then changed many years later to the other. Some say they have been told they have both, is that possible? is it just the same disease showing in a different way? ( The talk was actually about who really discovered Crohns disease.)

Many years ago when I was first diagnosed, I was told I had Crohns disease and that diagnosis stayed for about 10 years. I even had a biopsy that showed Crohns of the large and small bowel. Those notes are now so old I don’t think I can get hold of them, it was also in a hospital in Surrey. Move forward years and I was then told I had indeterminate colitis ( unsure which IBD I have) or Crohns colitis ( Crohns of the large bowel). Then it was decided I had ulcerative colitis.

I have always had a few doubts about which one, even now without the large bowel. The histology said severe UC but there were some bits that could be Crohns related, like thickening of the bowel wall. I also had severe swollen skin tags before surgery which is more Crohns like, and mouth ulcers.

Now, things again seem strange for me once again. The perineal sinus tract that I have had for a few years and have had a few surgeries on, has now been proved to be a rectovaginal fistula. Fistulas can happen with UC but again are more likely to be Crohns disease. I also have the fistula at the base of the stoma ( which is part of my small bowel.) Hopefully nothing else will appear within the small bowel to suggest I am not clear of IBD.

 

  • FISTULA – an abnormal or surgically made passage between a hollow or tubular organ and the body surface, or between two hollow or tubular organs. So could be linking any internal organ or skin together.

This is why it would be great to get the conversation going about the subject of one IBD or two? who else has the question mark over their diagnosis? I hope and think that I had UC with some tendencies of Crohns in the colon that has now been removed.

An eventful week

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

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

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

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

 

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

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

 

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

The trouble with perineal wounds-wound care and dressings

 

 

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

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

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

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

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

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

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