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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Cleaning Tomas the stoma

A new year will hopefully bring a better year. So far so reasonably good.

The over granulation on my stoma that the stoma nurse put silver nitrate on (pic 3) is now much better (pic 2). My skin around Tomas is fine too, only itches when I need to change my bag. I find a lot of ostomates have trouble at some time or other with soreness etc, but I seem to have found a routine that suits me.

My bag change routine is as follows ( for those who might get some tips for theirs)

Use Brava adhesive remover spray to ease the bag off, without pulling at it , as I found this aggravates things.

Clean all around with warm water and tissues until very clean.

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I then use ostopeel adhesive remover wipes to get rid of any sticky seal that is still left on from the Eakin seal I use.

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Dry with soft tissue, and if there is time, I usually lie there for a while on my bed watching tv to get some air onto my skin.

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I will then spray ostoguard lavender barrier spray, leave for a bit, then spray again, leave for a bit.

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Finally I mould the Eakin seal ring around the base of the stoma, when everything is fairly dry, so that it sticks well. This then helps prevent leaks under the bag. I know there is a gap in the photo, this is where I have the fistula, so I have to mould around that.

 

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The bag then goes on, and I make sure it is stuck all the way around the stoma and outer edge.

Usually this goes according to plan, but if Tomas is in a naughty mood, he will inevitably poo whilst I am doing all of this, so I have tissues tucked under him, and judge when to put on the seal and bag. It has gone wrong though ,when he poos after the ring is on, and that can be a pest, not to mention wasting time and stock.

Everyone is different, but if you are having trouble with sore skin etc, it is sometimes useful to try what others are doing.

Good Luck and a happy and pain free new year

Tomas and me

Tomas can be a right pest when he wants.

 

Just when I have decided not to have surgery to refashion Tomas ( because of the fistula ) he plays up. I was managing the fistula very well with the Eakin seals. Then low and behold , my skin around Tomas popped out and started to curl around. Apparently it is called over granulation, where the skin is irritated / sore, and white cells gather and cause these unsightly raised bumps, which can be sore and sometimes bleed.

 

I went to see the stoma nurse, and she has dabbed silver nitrate onto them , a bit like you would with a wart. Hopefully they will eventually come away. It stung a small amount when she first did it, but after about 30mins, it was back to normal. They are harmless anyway, so if you can manage them, leaving them alone won’t be a problem.

 

She also told me about the new Eakin seals that clean off much easier, I like the sound of that, I do like Eakin seals anyway but they can be a pain to clean off when changing your bag, so the new ones will be much better I hope. I have one on now and will order the new ones when I need some more. It seems very comfortable at the moment.

I am also being fitted for a stoma support belt, which ostomates are usually advised to wear, especially when working / exercise/gardening etc, as we are more prone to hernias and prolapsed stomas. This was also the reason I didn’t want more surgery on Tomas because I was told that I would be even more prone to these complications.Better the (little) devil you know.

 

On a different subject, I went to see my councellor and she said I had come a long way since I first met with her, and I accept what has happened to me now, and embrace Tomas. I have to agree, things are much better and I have one more session after I have started back to work, to check things are still ok. It seems a long time ago when I was in hospital for all those weeks, not knowing if I would make it in one piece ( am not quite in one piece, a piece has gone never to return) but I can actually talk quite openly about it all. I dont remember ALL my time there in full, but I undestand the severity.

At the moment I am looking forward to christmas, and I really hope people in a similar situation can overcome things and enjoy christmas too. To those awaiting help, it does get better.

Merry christmas everyone, see you soon.

Love Tomas and me xxxx

On the up

It has been 8 months since my first main surgery and 3 weeks since my proctectomy, and I am doing well. I can sit pretty well without much discomfort and am beginning to feel my old self. The scar is less sensitive and the bruising on my inner cheeks has gone 😉 It is great not to leak fluid constantly from my rear end, and I am saving on sanitary pads and loo roll.I still don’t know if I made the right decision to leave more surgery on Tomas, because he is being a right pest. I get itching under the bag, my poo sometimes gets onto my skin next to Tomas and becomes sore, and the skin that connects to Tomas , a part of it has decided to pop out and curl over which is sore. I can still handle it but it is a nuisance. I am seeing the stoma nurse soon, so will see what is happening, and seeing the surgeon for my check up in February.

I have found that my hair under my fringe is very thin, this can happen apparently when we have had this sort of surgery, and I hope it thickens up soon. Having Tomas to concentrate on with twitter etcetera is a help, and I am thinking of doing more with the concept.

I go back to work in the new year and am really looking forward to it, I am a bit apprehensive as I know some things have changed, but the team are fantastic so I am sure I will get plenty of support. I am hoping I will start to feel “normal”and my mind won’t constantly be on my health. My friends and family have been my rock, and because they know all about me, I don’t feel embarrassed about things. I do worry that Tomas will make a lot of noise at times, especially at work, but me being open about it means I will probably come clean.

I haven’t mentioned up to now, that I had a confirmed diagnosis of multiple sclerosis, which I kind of denied the idea for quite a while. I have some symptoms that need treatment but I am not going to dwell on this for now as this blog is for Tomas and me, but I may tell the odd snippet now and then. Although I was advised to have vitamin D supplements ( a high dose) which is great for your immune system, I was never told this before, and it may have been worth taking them with the colitis too, as that is also an autoimmune disease.

I am going to have a better christmas than last year as I was unwell then, with the start of my last flare of ulcerative colitis. I can relax at home and enjoy time with my family.

Please follow Tomas on twitter @tomasthestoma

PERINEAL PROCTECTOMY (BARBIE BUTT)

 

Well its two days before surgery at the moment , and I am shitting myself (not literally, thats impossible). I have high anxiety levels where my whole body is on high alert. I feel on the verge of panic constantly. I hate this feeling, I wish I wasn’t such a worrier, my mum almost skips into surgery , whats that about ?.

My bag will be packed soon, I keep looking at it ready but not quite sorting it out yet. I have to be on the ward at 7am and have four pro op drinks to drink before midnight, then two more a couple of hours before my op. Thats great, that means I should drink them before 7am in case. The surgeon is refashioning my stoma too, although I need to ask again if it is worth the risk, as I am coping ok with it now. The risk was …more prone to hernias, and prolapse of the stoma. Don’t fancy either of those thank you.

I am trying to fill my few days before surgery so I am not thinking too much all the time, it is very hard to do. Even though the last surgery was awful, I am much healthier but also have the time to worry, I didn’t really have time before.

THE DAY OF SURGERY

We had to get up very early, I had to drink 2 pre op drinks, 2 hrs before surgery so I played safe and had them before 6am. Gross that early in the morning but had to be done.

 

We went to the surgical admissions ward and I had various checks, then got into my gown. My surgeon came to see me, and I mentioned my worries regarding having my stoma redone. After a short time, we decided to leave the stoma and concentrate on the proctectomy. I am able to look after Tomas as he is for now at least.

When it was time, I had to walk down to theatre, it was the walk of doom, I really wanted a sedative before all this, but no luck. The anaesthetist said I wouldn’t need an epidural for after pain relief this time and should be ok with intravenous painkillers. I lay on the bed, the surgeon was there too. Before I knew it, It was done.

I woke up in recovery, in complete pain,the worst I have ever had, the nurse soon filled me with pain relief and then I was fine.I had a bit of temperature but that got sorted very quickly.I felt the odd twinge but all was ok. I had a cup of tea and a sandwich, then had to wait the whole afternoon for a bed on the ward. Meanwhile, my catheter was removed and I had some fluids. I was soon asking to use the loo. They tried a bed pan and I just couldn’t wee, so they got a commode, and again, I tried, but just couldn’t wee. I got quite scared and soon needed to wee like a horse.Apparently this is not uncommon after this type of surgery, as they are so near the bladder, and have also put in pain blocks, so another catheter was inserted, and oh the relief. Eventually , at 8.30pm, I was moved to my favourite ward. My wound was looked at, and deemed very good, I was settled and ok.

I started being a bit itchy, which I had last time and they said I was allergic to the antibiotics, but I wasn’t on those. My cannula stopped working so they gave me morphine by injection. As soon as it was done, I knew it was the morphine. My arm went red with a largish white patch where the injection site was. The doctor had to draw around it to make sure it didn’t spread. Luckily all was fine and I was swapped onto Tramadol. I had a comfy night and in the morning was the doctors rounds. He was pleased with how it had gone, and said that my surgeon had found some infection in the stump still, so had put packing up there with antibiotic gel, and sewn me shut. The packing absorbs eventually.

I had on my sexy socks, and was told they would leave the catheter in another day then to see how I got on.I stayed one more night, then the next day, I thankfully had a wee, ( I rang round family to tell them the good news 😉  ) I was allowed home.

I decided to have a look at my wound at home. I was a bit shocked, if I thought my other scar was frankenstein-like, I was in for a shock. I had bruising, but the scar was long and swollen.No wonder I was having trouble sitting. It became a bit more uncomfortable as the days went on, but I managed to sit very wonkily. One cheek then the next until it was easier to get on the bed and lay on my side. Cleaning the wound was fun too, either in the shower with the spray directed onto it, or a very shallow bath to splash myself with.

It has now been 10 days, and it is not too bad.Slightly more comfortable to sit longer with, we have bought some foam to cut into a seat shape made from memory foam, I hope it works as I want to see my daughter perform at christmas at the theatre.

I have taken a photo of the wound, but am not ready to show all just yet. Watch this space.

I wonder what happened to whatshername…oh yes , me

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Back to stoma talk. Can’t be helped , this is me now , confused, sad, happy, weird , questioning, always questioning. Is it normal for ones emotions to jump about so much? I think I am used to having a stoma one minute, to pure fear with the thought of living like this for the rest of my life. For instance, have you thought about coping with a stoma when you are old? I have. I see older folk in the hospital with stomas, who struggle to cope now for various reasons, arthritic fingers, dementia, waiting for help from the busy nurses. For the nurses, it should be a dream patient, one who doesn’t actually shit the bed, but they would come with their own stoma issues. Only nurses who work with stomas all the time, truly know.

As of the 17th of this month, I have absolutely no way of going back ( I don’t now really, but I still have my bottom even though it isn’t connected to anything ). I won’t ever use the toilet for a poo the same way EVER again.I will always have Tomas, ALWAYS.

What about when my skin gets wrinkly and baggy, will the bags fit properly? We hear about the young people with stomas much more now, before it was very taboo, but why? didn’t anyone ask the mature stoma folk what its like? I don’t ever remember any stories or pictures of elderly stoma patients enjoying life. Maybe because they were just getting on with it, not worrying about what people thought. I would love to hear from an elderly  person with a stoma,( did you name it?,) and listen to their story. If anyone reads this, please let me hear your side of the stoma story.

Not sure if I am doing the right thing by being so open about my journey, but when I see others doing the same, I feel proud. ( and upset, I thought I was the only one being so graphic, then more people might read my blog, but alas….I am not alone).

Not long before I go under the knife again, am so scared of it all. I read up about it, sometimes wishing I hadn’t, sometimes glad that I did. It still feels a bit like a dream (nightmare ?) and one that I won’t be waking from.

I am feeling very morbid at the moment, I am sure it is because of the upcoming surgery, the winter drawing in, coldness etc… I feel isolated in my own mind, with my own thoughts. Will I be able to enjoy christmas? how much pain will I be in? eeek. If I am like this now, what will I be like the day before?. I need a sedative from now until then.

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I have had problems with peas lately.

They seem to bother Tomas. I end up very watery as the skins block the output, and it makes me feel just ugh . I have had them before though, so I think I don’t chew as well as I should the more I get used to it all. I had a small amount of mushy peas the other day, and I think even those are no good now, I assume that being mushy, it would go through no bother, think again. It makes changing the bag a barrel of laughs. I get through a million tissues. First time I have seen Tomas look like he is having a wee. Mums first comment on seeing it in the first place months ago was ” it looks like a penis” .Today it is a lot better, but I hate the fact I have to be careful what I eat, I have found going for meals, a pain in the barbie butt,( haha) I might love the sound of it but you can bet that there will be something used in the dish that could cause me problems. People who know me, know i like to eat so this is sad news.

I can’t wait for all the surgeries to be over with, not long now, hopefully my and my families life will take an upward turn for next year.

 

 

 

The voice inside my head

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A problem I have always had even before the operation is a little voice in my head. Not like schizophrenia , just me questioning everything I say or do. I am a well known worrier. Tried to put whittler but it seems to mean someone who uses a whittle knife thing lol.

Since surgery this is now causing me problems. I don’t sleep well for worrying, My mind goes into overdrive when all is quiet. I feel this is starting to get out of hand , and my counsellor spotted it too. I feel it makes me a weak person who over worries things constantly to the point it takes over my days. My councellor says it doesn’t make me weak in the sense of power /weak, and any mental health issues are an illness like a broken arm. Interesting.

The fact that I have down days at the moment is to be expected and I suppose my worrying more is too. It’s just that it is exaggerated at the moment. After my sessions I am worn out and pretty emotional for the rest of the day. I also realise that I miss my dad more than I thought. He would be right by my side with the rest of my family, and would be down to earth, with lots to say and right beside me.

I have been given sleeping pills but know not to use them every day, so I struggle on the days I don’t take them. Last night I lit a lavender scented candle for a while, my husband agreed that we could hardly smell it, that is until I blew it out, then you could smell it for a few minutes. I have been given a relaxing CD which I keep looking at but doing nothing about. I just want to be able to close my eyes and go to sleep. She suggested a warm bath before bed, but that wouldn’t work for me. I would have the bath then get out and feel that I need to change my bag, even though they are supposed to be waterproof, I feel better when it is changed completely. A milky drink, maybe , but I end up waking again for a wee.

I wish I wasn’t a worrier, I would like to be a warrior instead.

 

GETTING TO GRIPS

 

Things are falling into place. I ‘do’ my bag change myself, and have for a while now. I have started to change it when I want to, and know what to do should it require more attention. ( if it gets sore around the stoma or itchy where the base has irritated it.)

For absolutely no reason I can find, the area around my stoma will be sore, also I will get itchy underneath the bag for no apparent reason. All I know is, if I have a good clean and airing, plus use all my potions ,it will improve again and be fine for a while.

The output is another wonder. One minute its thick like porridge (this is the normal output to expect) then it is suddenly very watery or smooth like chocolate. I know it has to do with what I have eaten, but it is difficult to know exactly what. Except when I eat a whole bag of Galaxy counters of course. They tell you to watch or avoid certain foods, and to chew chew chew, that is my new knew annoying word of the month.

We are not supposed to eat veg skins, potato skins, raw veg, mushrooms, sweetcorn, etc… but I have eaten a bit.I remember seeing some fairly large bits of mushroom come out the other end. Very weird, as you can’t feel it actually coming out.

I use disabled toilets when I am out and one is available. I have never had anyone comment yet, but god help them if they do, I will be ready for them. I feel better in them than normal toilets because I have space to do what I need and don’t feel embarrassed ,for many reasons too. Its not just the stoma at the moment. I would also need to use them to change my bag if I need to, I know it would be very hard to do all that in a small cubicle.

I went for a meal with my husband the other day, and I must say, things were fine. I have also been out with my closest friends and all was well.I have managed some alcohol but do get dehydrated much quicker so don’t go too mad.  Things are on the up… just when I need to go into hospital for my next surgery. Sods law I think it is called. I am not looking forward to it,( who does?) but I know it needs doing. I will be having a perineal proctectomy and stoma refashion. In other words, a barbie bum and stoma re-doing, I just hope I recover quicker than the last one. Don’t think I will be sitting much after for a while, I assume it is a bit like having had a baby with lots of stitches.

I AM excited for it all to be over and I can be normal again, but I also wonder if being normal again is possible. Will I be able to go out without constantly feeling if my bag is getting full, will I forever look down at my tummy to see if you can see anything underneath. I know it seems silly to worry when I am happy to paste it all over the net, but that doesn’t feel like me really. I can tell the story and even post the pics, I can tell my friends ,and show my friends even, but don’t like the thought that people are talking about me in a negative way. I want to tell the world that it is ok and not strange / smelly/ odd, and I know that is what some think as I used to. I want to be able to tell people that it is not always old people who have stomas, and not all stomas are the same.I am trying to embrace my new life because I will go rapidly downhill if I don’t. If I think about my future too much , it can be very scary.

This is me now, and compared to months ago, I am doing well. Fingers crossed…..14479783_10207377242333785_4917849874162228449_n

 

 

BALLOONING AND OTHER FUN

 

A funny oddness about stoma bags, is ballooning. I suppose its my breaking wind that causes it. I first encountered this oddity on the ward. I woke up and felt the balloon under my nightie, and when I stood up to go and empty, I had to hold it up slightly otherwise it feels like it is dragging enough to come off altogether. I am used to this now, but cannot believe someone hasn’t invented something to stop this happening. I mean, stomas have been around for years and bags have got much better since the early days when a sponge was attached to the opening with an elastic bandage to absorb the leakage, this was in 1776 and  was the first successful ostomy.Previous to that ,the procedure was not effective and they couldn’t control infection.

I expect manufacturers are looking into ways of perfecting the pouches, but farting and blowing up the bag? really?

Another annoyance is pancaking, and it pretty much is what it sounds like. The poo has flattened and is squeezed between the pouch base and the skin, so it leaks onto the skin and then the skin becomes sore. I seem to be lucky and only had this happen once, and very minimally.

I had my first shower without my wound plaster today. It was wonderful, the final scabby bit has gone and this means I can now have a proper deep bath too.

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It still looks like a second belly button, but I suppose it is something I will have to accept. Again, its better than the alternative. Bio oil here I come….

Sleep is something that gets disturbed for many reasons. Obviously the stoma doing its thing through the night can wake you up, either because the bag is getting too full or the sensation is enough to wake you. But an important factor for many people would be your thoughts. Especially in the early months, or when there are still issues, it can be hard to shut down. As soon as the lights go out, my mind goes in to overdrive ,and I relive the horrible experiences I went through , and my time recovering. I was given sleeping pills which really help me when I need them, I do struggle to get up before 11am if I have had one though, as my husband likes to remind me.

I have also started my counselling sessions, which are an eye opener. It is nice to talk to someone who has the expertise to help you get your thoughts in order. I am not sure if it will help in the long run, but I am happy to try. She is very amenable, and makes me go deeper into my feelings. When she asked me to tell my story, she said I was good at telling the story but at no time did I say how I felt at each point. Also she said I was good at worrying what everyone else was thinking and feeling but not myself.

She was perfectly correct.

 

WOUND HEALING

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Well I am pleased to say that my wound dehiscence is almost closed. It has taken 6 long months of care from my nurses and I cannot wait to have a proper soak in the bath, which is so close for me now. I have only been able to have a shower with a waterproof plaster over my normal dressing , being careful to still not get too wet.

I have had two very shallow baths in 6 months and it wasn’t worth it. because I was so boney, it really hurt to lie down in the bath, so my husband had a brain wave. We bought two kitchen chair covers from Ikea , and put them in the bath, then I got in.I have to say, it was very comfortable, just a shame the bath water was a cup full.

I don’t have any pain in the wound now, and only really had minimal pain even when cleaning before. It is unfortunate that it had to open in the first place, as the scar now looks strange at the bottom. In fact when I stand it looks like I have two belly buttons.

I suppose I can buy high waist bikini bottoms if I decide to show my tummy on holiday. I think I will, it will help raise awareness and it will boost my confidence I think. It would be silly to flash everything on my blog pages but then worry what people think on the beach.

I know some folks have had much worse wound dehiscence than me, where most of the wound opens right up and they need vacuum healing. So I was lucky for it to stop at the bottom of the scar. I remember looking each day to see if had crept up the scar , and watched it do just that to start with. I was also allergic to the plasters they used originally, and found it very itchy but not being able to do anything about it, until I was told about Mepilex plasters. The are amazing and don’t hurt whatsoever when taking off, and no allergy. They are apparently quite expensive so they may try and put you off ,but if you have an allergy to plasters, this is the one.