Tomas the stoma on holiday

Nerves are kicking in just slightly. Looking forward to going away with the girls to Spain, but still have some reservations regarding Tomas and my sinus etc….lots of potential issues.

Tomas is behaving pre holiday so that’s good to start with. Hopefully he is good while we are there.

As I was going away with close friends I was ok, but just because of my leak and bottom problems I was nervous on the way to the airport. I was given a  Diazepam to calm my nerves and it worked a treat. I was totally calm, probably too calm as I fell asleep on the plane.

At the airport I had to go through the body scanner at East Midlands. I mentioned the ” bag” and all was well, I was just patted down and was on my way. They didn’t even swab me this time which I was surprised with because the bag was a bit full and could have been anything. We then had a coffee and then we were off.

After a few hours of me snoring on and off and waking myself up, we landed in Spain. It was lovely and warm. After we unpacked we went to the beach. I had two pina coladas and was totally drunk because of the Diazepam I expect. When we got back to the apartment I fell asleep, woke up later and felt brilliant.

I noticed a lot of looks on the beach at my bag, or maybe it was the cover with Tomas on , who knows. Because I am a member of a lot of forums and groups I see stomas and ostomates all over the web all the time and marvel at how many of us there are, so was mildly surprised to find that I appeared to be the only one on the whole of the beach each day. It brings it home just how uncommon it actually is despite the push from the media and us lot.

One woman said ” I like that” pointing to my cover, I thanked her and said I had had a big operation, she looked embarrassed and apologised, I think she thought it was a fancy bum bag lol. Now that is an idea !!!

I couldn’t go in the sea or pool because of the sinus leaking, I even had to wear a pad in my bikini bottoms. We went for some lunch and that was where I had an accident which upset me. Whenever I sit i tend to leak through the sinus tract, but this time I leaked through my shorts, my lovely friend Helen came to the toilet with me and took my shorts to dry under the hand dryer, and I changed the rest. I was in tears and felt so fed up. The feeling passed and I got on with it again. I was constantly checking myself though which was very annoying but it was something I couldn’t help. I remember lying in the sun with my friends next to me and knowing that I was the only one that would have to check my bag and my bum constantly, and would need to know where the loo was. luckily it was very nearby.

Talking of toilets, Spanish toilets are on the whole very nice. Their disabled loos are amazing. At the airport there were three disabled toilets, all were massive and clean, and had all the things you could possibly want. ( see previous post about toilets in Japan).

I changed my bag twice over the five days mainly because of the heat, I felt the skin was starting to itch but there were no other issues at all with the bag. I drank plenty of water ( and alcohol) and ate lovely food. I over did it one evening and was sick in the middle of the night, I say it was over indulgence, everyone else said it was mixing my drinks.🙄

I did enjoy the holiday and because the friends I went with are my very closest, I could relax enough to tell them if things were not great, but be open enough that I could change and air Tomas in front of them. I had fun, I drank, I ate and I sunbathed.

My stoma looked a bit like a dartboard though, white bits and red bits, but the red is just where the mouldable ring has pressed onto the skin and where I got a bit itchy with the heat.

On the way back from Spain, the airport again was non eventful, I didn’t even travel with a note about the stoma or any extra stuff relating to it. I just thought I would explain when the need arose, and it didn’t. They could hardly deny the facts. A few of us took extra suitcases and hand luggage, it meant I could take whatever I needed without worrying about space. Hand luggage on it’s own would have been a struggle, I wouldn’t be sure what to do with make up solutions , suncream AND stoma solutions in those see through bags.

I would definitely go on a girlie holiday again , but would be so much happier with the sinus gone. Having a constant leak is no fun at home, but on holiday it is a menace. The actual stoma side was ok up to a point ( you are never totally normal). There were some clothes I would have liked to have worn but the bag showed through a bit so  couldn’t. Playsuits and some tighter fitting stuff, usually the lighter colours. I really need to invest in a nice not too tight stoma band, just to stop it dangling. If anyone has any ideas of comfy bands that are not totally tight like the support bands I would be very grateful.

The moral of this blog is… don’t be afraid to go away, nobody is perfect so why should you be the only one?

 

 

 

What’s it like to live with a stoma?

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I have not been sleeping very well, having nightmares and generally blurggghhh. Woke up early and realised I had a small leak, but big enough to piss me off. I had to change my bag before work, and change duvet cover. I am glad it rarely happens to me and lucky that my husband is great about it all.

I normally like to change my bag when sitting up on the bed in the evening, its comfy and Tomas can get an airing for a good half an hour, so doing it quickly makes me uneasy, I worry about causing a rash because once they start, it takes a bit of sorting and can be unbearably itchy. I am blessed with a spouty stoma and not a flat one, so my skin isn’t too bad.

I go to work and all is good. I usually have to empty my bag about two or three times at work, but it’s not a big deal. I do worry about having a leak there though. I have no bed unfortunately, so will have to change it standing up ,eek.

For no apparent reason my output can be like water for a few hours, this means I usually have to empty a lot more. If you leave your bag for too long, it feels like the weight could unstick it, no thanks. So people, if I say I need the loo, I really need the loo.

I empty a few times in the evening and just before bed. This is usually when Tomas decides to wake up and be noisy as I am nodding off. I will then have a sixth sense at about 5am, and wake up to empty again. This is when my bag could be like a balloon, depending on what I have eaten. I am lucky that I can go back to sleep after.

Living with a stoma can be mentally and physically draining, but when things are running smoothly, it’s not too bad. For some, it can be awful, they have very sore skin, many leaks and really struggle to get the right products or help. For most, it saved their life and you have to learn to live with it.

I change the whole bag about 3 times a week all being well. You get a feel for when to change it, I start to get slightly itchy and like to change it then. I have never showered without a bag, having an ileostomy means I am incontinent, so I get output at any time, fine when you are actually in the shower, but not so fine when you get out and are trying to dry yourself. Same goes for a bath. Bags are waterproof and don’t come off in the shower or bath, so I just keep it on.

Life with an ostomy has its ups and downs, but I am glad I survived a terrible ordeal and yes it leaves scars, some visible some hidden, but I am here, and I am ok.

 

Travelling with Tomas

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I was excited and apprehensive about going away for the first time abroad with Tomas. I had heard lots of different things, good and bad, lots of scare stories too. I was told my bag would blow up ( possibly not off, just like a balloon) on the plane. I read that the stickiness that held the bag onto my skin would melt, and my bag might come off in the heat. I might be taken to a room in the customs part of the airport and my bag swabbed. All these things made me a bit anxious waiting in the line for customs and beyond.

This is what happened to me.

I ordered a free travel booklet from Charter that had an explanation of my condition in various languages, I needed Greek and that was there too. There was a part that the GP could sign to say I needed certain things in my luggage. I was miffed to note that the GP wanted to charge just from signature, so I didn’t bother. I couldn’t see a problem there, it is obvious what I have. I still took the booklet just in case. ( and in case…. get it?).

Don’t give up the day job, I hear you say.

Anyway. We were flying at 6.40am eek. I packed some of my stoma kit in the big case for the hold, then some in my hand luggage too, with my adhesive remover and barrier spray in the clear plastic bag. ( I would struggle if I didn’t have the big case, as all my other fluids, makeup etc were in there. Not sure I could fit it all in the plastic bag). As we were in line for customs I noticed they had body scanners and most people were put through them. I knew I would have to mention the stoma.

As I walked into the machine I mentioned to the female customs officer that I had a stoma, and she was lovely. She said it would show up and they would probably swab the area too. She passed me to another female officer who was lovely as well. She discreetly took me to one side and just swabbed and scanned with a hand held scanner very quickly over the top of my clothes. She said, “There, no one needs to know”. I was very grateful and sent a thank you tweet to them via Tomas the stoma twitter afterwards.

After we took off, I kept checking my clothes for signs of ballooning, nothing happened. All was as it usually is. I had to empty once on the plane which was fun, as it was very tight in there and my output wouldn’t flush, I had to get some more loo roll and help it down then flushed again. That did the trick. The thought of having to ever change my bag in there was a scary one though, so I feel for anyone in that situation.

The holiday was wonderful and Tomas behaved himself impeccably. I changed him twice in the apartment and that was it really. I ate a fair bit so the bag filled up quite a lot, but my output was exactly as it is supposed to be, to the point that I only needed Loperamide once a day. The heat didn’t melt the adhesive either, and apart from a slight sore bit where the bag edge sits on one occasion, I wouldn’t worry so much next time I go away.

I even sunbathed with my bag out ( with Tomas cover on), I think I saw one or two people glance but that was all. With all the media coverage for ostomies, I don’t really care now.

On the way back through Greek customs, I got my booklet handy in case they frisked me, but they didn’t and I passed through without problems.

Bag ? what bag?

Don’t let it stop you, there is nothing to scare you except your own thoughts.

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What is ulcerative colitis ?

 

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Inflammatory bowel disease,or IBD usually refers to Crohns disease or ulcerative colitis. They are thought to be an autoimmune disease where the body attacks itself causing inflammation, ulcers and many other manifestations.

Crohns can affect anywhere along the gastrointestinal tract, from mouth to anus, and colitis affects the colon (large bowel). They are life long chronic diseases, and although surgery can get rid of ulcerative colitis, you may still get other symptoms affecting your body, that are associated with the disease. Crohns disease cannot be cured.

I had ulcerative colitis for about 30yrs, and when I had a flare up I would spend most of my days on the toilet, feeling very poorly indeed. Because the bowel would be swollen and ulcerated, stool would be thin with a fair bit of blood and pus. Crampy pain would accompany a flare, as would tenesmus, this means that we have the most intense urge to go to the toilet even whilst sitting on the toilet, and passing anything does not relieve that feeling.

Ulcerative colitis starts at the rectum which is proctitis, some people think this is a milder form of the disease but it can still be severe in that one area. If it travels into the sigmoid ( between rectum and descending colon) it is proctosigmoiditis. If it involves the descending colon, it is termed left sided colitis and distal colitis. Pancolitis is when it affects the whole large intestine. I started with proctitis, then it moved through the sigmoid with more in the descending colon. In the past I have had it across the transverse colon too.( see diagram) Normally left sided colitis can be treated with medication, but sometimes as in my case, the bowel was so severe that medication didn’t help. You can have fulminant colitis even if it is only a part of the large bowel, as fulminant means that symptoms are very severe with temperature, distention , continuous bleeding and generally in need of aggressive treatment. You can have fulminant left sided colitis.

Ulcerative colitis is assessed by colonoscopy, sigmoidoscopy, MRI , CT scan, barium meal or enema, stool samples and blood tests. Sometimes you may have indeterminate colitis, which means that the signs and symptoms cannot be differentiated from crohns of the large bowel. This is what mine was called, and even after surgery, it was decided it was MOST likely ulcerative colitis and not crohns disease, so I keep my fingers crossed.

Because the disease was pretty bad in my rectum, I wasn’t a candidate for a J-Pouch. This is surgery that connects the small bowel to the rectum forming a reservoir with some of the small bowel. This can enable a patient to use the toilet normally again. I have now had my rectum removed anyway, so no going back.

As I mentioned, colitis can also cause other problems that may never go away, these are inflammatory manifestations of the eyes, skin, liver and joints. Arthritis is common, as are skin conditions called Erythema nodosum ( deep tender nodules often found on the shins) and Pyoderma gangrenosum which are nasty ulcer type lesions that can vary in size, they are found mostly on the legs but have been found on other parts of the body too. Aphthous stomatitis is a type of mouth ulcer found in Crohns and ulcerative colitis patients. Episcleritis is an eye inflammation affecting the episclera.

Many others are often present but too many to go through with this blog, I suppose what I am trying to put across is that ulcerative colitis is much more than a bowel disease.

Mentally, it is a strain when having a flare up. You are unable to function properly , and although you look reasonably ok, you are often very ill. A lot of people put on a brave face as they don’t want to be seen as a moaning myrtle, who is always ill. If you are lucky like me, you have a supportive network around you. I had to rely on many people before and after surgery, and this was the case over the years too. Flare ups can vary , they can be fairly mild and clear up within a couple of weeks, or they can grumble along for weeks, months and years. When I read of the struggle for some people, I wonder why surgeons are not called in sooner, I certainly wished I had surgery earlier. I think on some occasions ,we are left for far too long by medics who are trying but failing to keep things at bay , and won’t admit defeat. I know this is major life changing surgery, and they are doing what they can to avoid it if possible, but I feel that sometimes it is quite obvious what the outcome will be.

Surgery for colitis is removal of the large bowel, rarely they will rest the bowel with a temporary stoma, but mostly its all or nothing. If you are one of the lucky ones, you can be a candidate for the J pouch surgery, although this is a big surgery with its own risks and failure rates. The rectum can be left for re-attachment, or removed. Mine was removed and sewn shut. It all sounds pretty scary, and it was, but you soon get used to it, and for me it was all worthwhile as I feel very well now.

 

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.

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.

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.

 

 

 

Bowel surgery – The little things

 

There are a lot of , sometimes little , sometimes big, annoying effects of bowel surgery. For example when I awoke from proctectomy surgery, no-one said that the many injections etc in my anus, would mean I might struggle to have a wee. Now these little things would help people very much if they knew beforehand. I thought they had damaged me and the nurse in recovery didn’t really know this would happen either. I drank and drank but to no avail, and ended up in agony while I waited to have a catheter inserted. Needless to say all ended well and the next morning the catheter was removed and I managed to go.

After my big surgery to remove my large bowel, the same thing had happened, but this was a bit more expected. But for a long while I had many strange feelings down that end . Even though you expect discomfort , no one actually tells you how, where and why. You just get the ” you have a gap now and everything needs to fit into that gap”. Yes, but why does it feel weird when I pee? why does it feel slightly numb, and I don’t ever feel the urge to wee? The pressure pain in my bottom after that first op was huge, I had no idea if this was normal or not. When I stood or walked ,the pressure again was awful. Is it ok for me to walk at the moment? will I do more harm?

Is it normal to get the strong urge to have a normal poo? I have since found out that this is very normal, and a year later I still get the urge. It is strange when you feel wind travelling through your bowels, expecting it to come out the normal way, but of course this is impossible.

Why do they use staples to close the wound? I found them pretty painful to have removed, I suppose there will be a reason, I shall look it up.

Got it…. non dissolvable stitches are used in places where body chemicals could cause stitches to dissolve too quickly. Staples are used in areas that are harder to stitch, and when the incision needs to be closed quickly.

Muscular problems, achy bones, these are other side effects of bowel surgery, or even external symptoms of Ulcerative Colitis that you can still get even though the large bowel has been removed. Sometimes I can hardly move with sore bones.

When your scar opens up ( dehiscense). I remember telling the nurse that it really hurt when they removed my staples, especially at the bottom. A day or two later the bottom bit was weeping slightly, I asked if it was ok, and was told that it was normal.Gradually it opened up to reveal a horrible gaping hole that needed to be packed. It was only the bottom few inches that opened up but no one could tell me when it would stop.It did stop but needed to be packed for 6 months before it healed. I am now left with a tough circular blob of scarring there, which is a pest because it ruins the nice neat bit above. still not sure why this happens.

Depression and anxiety are other things that can swoop down on you, or gradually creep up on you. You may even feel ok most of the time, but some times you will feel very low and tearful, this is because you have had major surgery and you need to come to terms with it. If you have a stoma, this is also a lot to take in. It doesn’t mean you are weak, it means you need help and time to heal physically and mentally. I wasn’t aware of how severe these feelings were until I had complications and was in hospital for 2 months. It is also worth mentioning that your friends and family can have anxiety because of whats happening to you, and may also need support from others. They are unsure what is happening and why you are having certain symptoms.

I didn’t know about having a central line in my neck until I woke up, It hadn’t been put in right, so I needed it removing and swapping to the other side. This wasn’t all that pleasant. You get a local anaesthetic and it takes ages for them to put all the wires and leads together. Your neck is a bit sore for a while too, mainly when it is taken out. I was naughty and picked my scab, and didn’t know it was quite deep so have a small scar.

Having many blood tests and canulas can be sore too. Especially when your veins don’t want to play ball. Can I also say that doctors are not as good as phlebotomists, they don’t do them as often so you usually end up like a pin cushion.

I remember a health care assistant coming round doing observations asking us about our stools. the options were , hard, soft, crumbly,pebbly, and a few others that had no bearing on stomas at all. We said it is none of those, but she was insistant that we needed to answer,even asking if we had opened our bowels. Yes permanently .

I can look back and not be horrified by my time in hospital now, I can’t remember the early days anyway. I can say with absolute assurance, things do get better.

 

 

 

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

I Believe in you

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I have joined a fair few forums and groups to do with Crohns disease and ulcerative colitis , and the overriding theme is not being believed by medical professionals how poorly you feel.

Now, I know this to be true, as I suffered at the hands of a medical professional who didn’t really listen to how ill I felt until it was almost too late. The facts were there, the test results were there, but they were not, because I didn’t fit the Truelove and Witts criteria. Apparently , until your kidneys are failing and you are at deaths door, you are not ill enough for hospital care.

I have an overwhelming need to speak out for myself and others. The Truelove and Witts index is archaic. I am proof that having distal disease can be very severe, enough to have emergency surgery. You don’t need to be on the toilet 10+ times in the day, to be very severe. My haemoglobin level showed It was just on normal, but my iron levels were non existent, which meant that any day I would need an iron transfusion. I began having temperature spikes in the evening, and was losing weight rapidly. Because my temperature was normal when I saw this particular professional, I could see in their eyes they thought I might be mistaken and a bit of a hypercondriac. When the pain was so bad and I couldn’t pee, I was told the person was unavailable and to see my GP. My husband then took me to A&E, eventually seen by a lovely surgeon who said I was very very ill, and needed my colon removed immediately. I also found out that I had sepsis.I had surgery the next morning ( a Sunday) and was in for ten weeks.

I know that the NHS is struggling, and I can say that apart from one person, my experience has been exemplary. The reasons behind that persons decision have nothing to do with NHS failures I am sure. During my ten week stay in hospital, I saw many people come and go on the wards, many I spoke to and I know they were not as ill as I was. To this day, I have no idea why I was treated in this way. I wasn’t given some of the treatments that could have saved my bowel, because they felt I wasn’t ill enough. Have a look at my photos, I don’t exactly look full of beans.These were taken after surgery, 10 weeks in hospital ( which I might add, I had fantastic care by the surgeon and team on the ward).

I read other peoples stories, and a similar pattern unfolds. Terrible pain and bleeding, no quality of life, and yet they are treated like they are a pestering nuisance.

I really feel that the treatment for crohns disease and ulcerative colitis needs a new fresh approach. Surgical intervention, or at least a surgeons opinion needs to be sooner.If a person says they are in pain, just because their vitals are steady, it doesn’t mean it is not true. I struggled with my life for 4 months before it was necessary to help me. Many Crohns and UC sufferers ( yes believe me, they suffer) constantly with symptoms, many can’t go out because of them. They are terrible diseases that are embarrassing for many.

Please please can someone come up with a new system for these patients. If medications are not working, don’t just blunder along with ancient remedies that have no chance of working just to say they are trying to avoid surgery. Surgery may be the only hope that person has.

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