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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.

 

 

 

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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.

 

 

 

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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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Perineal sinus after proctectomy

Went to see my surgeon today for my post proctectomy review. Because I had the pelvic abscess, my wound isn’t fully healing. It is reasonably common in this type of surgery, to develop a sinus ( hole where there shouldn’t be one, that drains pus or fluid usually.) I have done my usual trick of looking it up on the internet, wished I hadn’t. If it doesn’t heal after the first look ,

He said I need an MRI to see how deep the sinus is before he decides what to do. There is not a big rush as I am well in myself, but because it is a nuisance and could potentially cause more issues, it is best to get sorted. He thinks that he will need to use a probe and it will be a general anaesthetic again. After that, I didn’t really understand what would happen.

These surgeries are a long haul, and take it out of you. I really didn’t know there could be so many complications with it all, and I can safely say, that I have had most of them. This is because of the mess I was in coming into surgery in the first place.

 

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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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Pain in the arse

This post might have slightly too much info for some of you , but I would like to share this for those of you who may have similar, or may be having this surgery in the future. Ok so nine months after my original total proctectomy, and two months on from perineal proctectomy, I am still leaking infection from my back passage. How, you might ask, if your rectum and anus were removed and sewn shut?, the answer is a small dot of a hole.

It was great for a few weeks, even though I was still a bit sore, I wasn’t leaking. Then all of a sudden it started. It isn’t just a small bit either, its a constant dribble or drip.

Now, to set things in order. I had the rectal stump blow out nine days after surgery, which gave me pelvic sepsis. I had to have a rectal drain into my pelvic cavity, and it never really stopped from then. I had intravenous antibiotics quite a few times whilst I was in, and came home 10 weeks later still with the catheter in situ. Eventually, my surgeon removed it and said that the infection would continue to drain through my stump , and I had to wear padding. It was expected to slow down or stop but the proctectomy would make things ok. I thought, at least it isnt giving me a temperature anymore.

Well it hasn’t really cured it at all. It started to leak from a very small hole in the stitched wound, and the wound healed but still left the small hole. I went to my GP who put me on antibiotics yet again, and took a swab. I had a call a few days later to say that the type of infection that was there,needed a different antibiotic so as soon as I had finished the first one, I was to start the second one. It did actually stop for a few days and I thought that was that. But alas, no such luck. It started again with a vengeance and is really uncomfortable, as you can feel it wet and sore. I again went to my GP but because the hole is so small, I can’t have it packed .

The hospital had already changed my post surgery appointment twice , so now it was way off in April. So now I had the task of trying to get in earlier. Eventually the colorectal receptionist got me squeezed it at the end of February. I still have a month to go and even then, don’t know what will happen. I have no idea how serious it is to leave it either.

I know that the NHS is so busy, and do not blame them for this, its just a real pest after all these months of problems and surgeries, it feels like there is no light at the end of the tunnel. Will let you know the outcome , except to say that when I googled it ( I know, bad move) that it is quite rare with the blowout and sepsis that one person had to have a flap of skin of his thigh placed over the wound. Sounds lovely.

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Back at work

Well I have been back to work for two weeks on phased return, and I am glad to be back.Everyone is happy to see me luckily, and I have been reasonable well. I did have a small leak from my proctectomy before I went back and a swab found infection so was on antibiotics for that, which cleared up fine.Only thing is it left me with oral thrush so am on oral suspension for that.

This morning I woke up with a slightly swollen eye and itchy skin, so it seems I am allergic to something, maybe that thrush stuff, annoying. Will see what happens today, luckily I am off work today anyway.

Tomas decided to make himself known in a training session, by making loud noises,there were only three other people and at first I made excuse about tummy rumbles, but the noise didn’t really sound like that so I fessed up. Those happened to be folks who didn’t know about him, so otherwise I would have laughed it off.

I have been lucky that I have not had a leak at work, usually I don’t leak, but this week my stoma bag leaked twice at home.They were both small leaks that didn’t spoil anything, but you always have that fear, and I noticed both as I got up in the morning, so it set my morning routine askew and I felt a bit rushed. I like to air Tomas for 20 mins when I change my bags, to help prevent itchy skin and time for the barrier spray to soak in. I found myself pressing the edges of the bag over my clothes all morning to double make sure it was stuck well. It could be a lot worse though, and I could leak at work or all in the bed. All in all, work has been great, and I have settled back into it, and all the new things that have been introduced in the year I have been off.

I was measured for a hernia belt too last week, I wasn’t sure about them at first, as I thought they might feel very tight, but I was pleasantly surprised. I get three on prescription a year, and not only that, I can have them in the pants style with lace. I have decided to try them both and decide on the third, based on the outcome. I will mainly use them for if I wear dresses and skirts ( those that know me will probably say, never then) but even tighter clothing would look better as the support with hold it all in and flatter, but allow the bag to fill up still.

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You can get them from the NHS or websites that do ostomy underwear.

 

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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

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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

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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

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