photographs – TOMAS THE STOMA

May 7, 2017

Does my bag look big in this? What about the rest of me?

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I thought I would chat about body image. We all worry, me too.

It has come to my attention that we all spend too much time worrying about the way we are perceived by others, and that includes how we look. Now, I am a born worrier about everything so I speak from experience in the subject.

When I was younger right up until I hit 40, I would say I was pretty skinny. So did everyone else. But, although a lot of people said they wished they looked like me, there were some who were downright rude.

One friend said she wished she was thinner, ” Not quite as thin as you though Clare” hmmm nice. How would they like me to say ” I wish I was fatter, not quite as fat as you though” that would go down very well.

I went to see a comedian in Blackpool years ago, and we were a loud table so he picked on us, actually he picked on me. He invited me onto the stage, big mistake.

” lets move the mike stand so they can all see you”

“I am going to tell a joke, you’ll laugh your tits off, oh you’ve already heard it” Yes I know, its funny, but can you imagine a teenager with hangups on that stage? I was distraught.

Ulcerative colitis then appeared, and my body image changed again. Skinny legs and fat belly, lovely. Bloating with inflammatory bowel disease is not nice, I had a few people ask if I was pregnant on many occasions. This pot belly look lasted until surgery really when I was 49, but I also got more meat on me elsewhere. I liked the fact that my boobs grew, but not my arse or hips.

I have also been “blessed” with pale skin and freckles and moles. I would love to be a nice tan colour but it takes 2 weeks in Corfu laid out all day to go a great shade of pink. Fake tan is better nowadays but I do worry that I have damaged my skin over the years. I have jealousy when I see the perfect bod.

I have crooked teeth, ( I bet you are dying to meet me, I sound gorgeous), I haven’t smiled on a photo with my mouth open and teeth showing for years,except when drunk and I don’t care, so now I am doing something about it. My top brace is going on in a few weeks.

I was about 10 stone 10 pounds before surgery, which is reasonable as I am 5ft 7.5 inches, when I became poorly I went down to under 8 stone and ended up with saggy skin and old persons hands. We can’t win, there will always be something . I started to put weight back on after surgery and got to about 9 stone, I liked 9 stone, I felt ok, my skin fitted again and because my large bowel was removed my belly was quite flat, I thought ( wrongly I might add) that because the bowel was gone, my pot belly would be forever gone. But alas , something else has moved in. I can’t stop eating and am now 11 Stone !!!!???? and my belly is returning. Whats that about???

I turned 50 last year, and about 2 days after, received a flyer for Saga over 50’s. I felt older than old. How could I be fifty? I was in the OAP bracket for SAGA flyers.

I have fine hairs above my top lip, I am not sure whether to have a top lip wax, but I might end up with a red rash, do I keep the moustache or opt for a sign saying ” I had my lip waxed, look here”

Not only am I looking to see if my stoma bag is showing through my clothes, what about all the rest of my baggage?

May 6, 2017October 3, 2017

So far so good with the bum thing

I forgot to let you know how one of my previous posts “A pain in the arse ” was going.

Very good is the answer. I went to see my surgeon about the small hole that leaked after the proctectomy. It was called a sinus and can heal itself sometimes. Other times they need opening and draining, sometimes they need much more serious healing strategies, like using skin from your thigh and covering the scar with that. I have no idea how any are done and how they work, but needless to say, I hoped it would be the first option.

Well , he said he would book me in for an MRI of the pelvis and rectum to see how superficial the sinus was, and go from there. I had been leaking for months now so was pleased something was being done. My MRI wasn’t immediately and my next appointment was for the end of May, so still a while to wait.

Well would you believe it, the leak stopped dead about a week before the scan, and hasn’t reappeared since. I am pleased and just hope it stays that way. My appointment to see him with the results has been moved to August anyway so its a good job.

So the moral of the story is…. have faith that things will work out usually, and not panic about what could be.

May 2, 2017

What on earth can I wear?

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I have to say that I just cannot get on with stoma support wear. In all honesty I have only tried the one we get on prescription similar to the above picture. I just find it tight and restricting, my skin around Tomas starts to itch too.I worry that when the bag starts filling, it will squish it and it will leak. I think I won’t be able to tell when it needs emptying. I would like a nice lacy very stretchy and not too tight, band. I have seen some that look nice but don’t want to spend money on them if they are not right, so if anyone has some nice support wear that I have described, please let me know.

I must say, I do quite well with clothes now. For months I wore leggings and that was about it. I still love them for comfort but I have worn dresses and jeans. I have always worn high waisted jeans, as they are much more comfortable than the low or mid waisters that cut into your tummy and you can’t sit down and eat without being really uncomfortable.

I wear skinny jeans quite happily and tights dresses too. I used to think everyone and his dog would see my bag, but they really can’t. It is something that you get over with time.

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I still scrutinise myself before I step out the door, but when I first had Tomas, I wore for comfort and covering up. I thought I had to wear loose tops/tunics and shouldn’t wear tight things as I saw myself as flawed. My only issue with a dress is when my bag starts filling , it flaps about a bit unless I tuck it into my pants, and you can notice it through the dress. This is why I thought a stoma support garment might help, it probably does as far as flattening it all, but I just feel as though it is doing something that I can’t see. At least I can tell when I need to empty if the bag is loose.

As far as sex goes, it is no different than before surgery. ( Except it sounds like a bag of crisps between us ). I would still like a nice lacy something, to cover it, but really want it to be comfortable. I am very lucky that my husband is fantastic and doesn’t see the bag whatsoever. So I am not at all bothered about showing it in front of him.

I still wear baggy or tunic tops, but again more for comfort than self confidence. I am not ashamed of my body and scars, in fact I am very proud of them. It shows what I have been through and overcome.

It is very inspiring to see my fellow ostomates getting on with it and looking fabulous at the same time. I am going on holiday in a couple of weeks and aim to wear my bikini with pride. Watch out for my next blog about flying with a stoma and being abroad.

March 31, 2017

Let’s talk MRI (Magnetic Resonance Imaging)

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The MRI scanner is a fear for many, enclosed spaces, not sure what will happen, will I have a panic attack?

I have had many on various parts of my body. I will try and explain in as much detail as possible , what it is like to have an MRI of different body parts.

Firstly let me say that it is rarely as bad as you think it will be. I always imagined a long coffin that is dark and stuffy. On the contrary, it is much shorter than you think it is, nearly always you will find that a part of your body will be sticking out of it. It is well lit and has air blowing through. You have a button to press if you really can’t manage anymore, and the operators can talk to you through a speaker. Yes, they do leave the room but if you really need to, you can have a friend or family member in the room with you.

So with all the MRI scans , you get a questionnaire to fill out asking if you have had metal in your eye and other such things. They ask about your health for things like pace makers etc.

Don’t worry too much if you have tattoos , they did say to me that they may feel warm but I have never experienced this in all my 8 plus MRIs. ( I have lost count).I am also going to have a brace, and asked my neurologist about this, he just said that they can sometimes scramble the signals so they don’t get a good reading, but it shouldn’t put you off getting a brace.

They then check that you have no metal on you, jewellery , watches, zips, studs. I have to take my bra off, but I tend to wear leggings and tops with no metal.

MRI HEAD

I have MS so head MRI’s are the norm. They ask you to lie down on the bed bit and put a comfy cushion under your knees. They will then ask you to put in some ear plugs, as the noise is pretty loud even with these in, then they will put headphone on you, this is so they can talk to you, and also for you to listen to music through. I have heard that you can ask to bring your own music, but I have not bothered, you can’t hear it too well anyway. You may need a needle in your arm depending on if you are having a contrast dye put in. This can enhance some of the MRI images. They will do some of the scan to start, then they will insert the dye. You cant really feel it, but you may notice a warm flushed sensation and metal taste for a few minutes. Also try and drink plenty afterwards to help flush it out. It is very rare to get an allergic reaction to this and they are well equipped to handle it.

Depending where on the body the scan is, you may drink the solution or have an enema.

Anyway, after the headphones are on, they will place a plastic cage type thing over your head, this is not a problem and it doesn’t feel uncomfortable. The good thing is, a mirror is attached to this cage, and when you are in the scanner, you can see them in the mirror through the window of the control room.. It almost feels like you are sitting up slightly and not lying down at all. This is a godsend for claustrophobics. When you are comfortable they will give you the button incase you need them to stop, and they then go into their little room behind the window.

Please please remember that there is nothing that can hurt you in the MRI scanner.

You will then be told that you are going to move into the scanner. Try and stay calm, think happy thoughts, I know this is ok for me to say, but I can assure you that with my first MRI I was petrified and even felt quite faint for a bit. I just rode it out, and all was well.

The bed will start to move and away you go. When the first images are taken you will hear lots of noises, loud rattling, loud bleeping buzzing. All is perfectly normal. After each image, the technician will tell you how long the next one will last. These scans can take up to an hour on most body parts. When it is all done, they will come in and remove earphones, cage and ear plugs and help you off the scanner. That is the end of the scan. It can take weeks for the results to come back, so don’t be worried if you haven’t heard for 2-3 weeks.

SMALL BOWEL MRI

This one is quite a long MRI, but it is different in a few ways. You have to drink a solution beforehand. It isn’t very pleasant but it has to be done. My technician added orange juice to it for me, to make it taste a bit better . I had to drink about a litre and a half, I couldn’t manage much more as I was unwell with severe colitis when I had this scan. Just drink as much as you can as the images will be clearer.

Instead of a cage thing on your head, this time it is on your tummy area. You can feel it but it doesn’t hurt at all. I think I felt like I needed to pee, but it wasn’t too bad at first. I do remember after about half an hour, really needing to poo, but they then gave an injection which relaxed your muscles, and the feeling went away. No I didn’t poo myself, although I told them I was worried that I would. The other difference with this scan is you go in feet first, and your head just about stays out the scanner. If I looked slightly back I could see the room, so again, not too bad. Because I was so ill my husband came in the room that time.

SPINE MRI

This is also a long winded scan, especially if it is the whole spine. I would say without trying to scare anyone, this is the scan that isn’t so nice for claustrophobics. You go all the way into the scanner, ( still with earphone etc) but because you don’t have the cage thing on your head, you don’t get the mirror, so have to look inside the scanner all the time. I did have one once where I said I was scared, and he found some prism glasses, that did the same thing as the head MRI, and I was fine again. Recently I had another without the specs and because I had had a fair few scans, I managed. Not my favourite though. I tried to spend most of the time with my eyes closed, but I am the nosy sort, so struggled to do this. When they moved me further in, I tried to look slightly behind and found I was nearly out the other end, so felt better about it.

All in all, these tests are for our benefit , with state of the art machines that can detect most things, they are safe and you are made to feel as comfortable as possible ( I sometimes get a blanket if I feel cold). So please try and keep calm, maybe ask your GP for a sedative or phone the department beforehand if you really can’t bear the thought of it.

February 25, 2017

Problem solving, and book writing.

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A funny thing happened this week. We went to Manchester as my daughter had an audition for university and my son goes to Manchester Uni, so we killed two birds with one stone and stopped at a Travelodge.

This was my first stay in someones else’s bed, not family. I made sure I had a spare ileostomy bag with ring seal, barrier spray, adhesive remover spray, poo bag. Good, I could go away in peace knowing I had my kit. NOT.

I woke up at about 6am and knew things were not quite right. I felt my bag and it had ballooned again, but because of that, it had come away from my skin, luckily only slightly, but enough to have a small leak. Bugger.

Oh well, I had my kit bag so I went into the bathroom ( I must add that I have never changed my bag standing up, so this was a novelty.I will not be repeating it either ). Luckily I got my fresh stuff out before I took the existing bag off as low and behold, I hadn’t packed the scissors or pre cut my bag. ( you have to do this in order to fit the bag around the stoma).OH NO, what do I do?, I don’t want to wake the family up, but I can’t really go to sleep either. I laid on top of the bed with the old bag still attached but with a slight leak, and tissues stuffed around it. As I lay there for about half an hour, I could feel that my skin was getting a bit sore and itchy, I knew it shouldn’t be left much longer.

There was nothing for it, I got dressed with some tissue pressed around the base of my bag, and went down to the reception.A lovely young man came to the desk ( he wasn’t English so although he spoke very well, I knew it might be a struggle). I asked if they had some scissors I could borrow. ” I am happy to get you them, but I will need to cut whatever you need cutting” said he.

Hmmm , ok ” I just need to borrow them for a very short while” said I

” I can’t give you the scissors I am afraid but am really happy to cut something for you” he repeated.

Right. ” I have a stoma, and need to cut the bag to the right size to fit my stoma”

Silence.

He looked slightly confused, then I heard a voice from his office behind him.He went in the office, came back and said. ” My manager says you can take the scissors” LOL

On another note, I feel strongly that there isn’t really much reading material for the very younger 0stomate, or young children who have family members with ostomies. So I have started to write a small book about ostomies, in a cartoon funny way that they will appreciate, nothing too intricate but enough not to scare either. It will be starring Tomas The Stoma, with cartoon pictures of Tomas doing various things stoma related. It would be lovely for your views, so that I can research the need for this. So far the forums I have asked have been a very positive response, which leads me to believe that it is needed or wanted. Should there be much charge? should I see if the NHS would be interested? Maybe another way to get it out there? Please get in touch and let me know your thoughts xxxx

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November 6, 2016

Now for something completely different

I have decided to put together some of my most favourite photos , some weird, some comical, some very normal but just different ,but mostly fun. Hope you like them, I will put a small description by them.

Thought I would have a change from bags and bowels.

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