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

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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.

 

 

 

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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CRITICALLY UNWELL DAYS

I thought I would like to write down my time in hospital, just before my operation and until I left hospital, in more detail. I know eventually that I will forget some points, and probably am a bit vague on others even now. As I said originally, I had a severe bout of distal/left sided colitis. This started in September last year when I started to be unwell.

Skip to about a week before I was admitted to hospital. I felt like I was dying even then, the pain in my side was pretty unbearable, and I was so nauseas all the time that I couldn’t eat a thing. I managed a couple of Fortsip nutritional drinks, but really, it was hardly anything. I was sick each time I had a drink so was getting very dehydrated. The meds I had been given were useless and I knew that I was deteriorating rapidly. My temperature spiked every night and I could hardly bring myself to move from my bed. My husband had to help me to the toilet, and the pain was so severe on the loo that I would cry and panic. My husband will never forget those days for the rest of his life.

The feelings that go through you when you feel you are dying, are awful. My dad kept coming into my mind as I begged him to do something from “The other side”.( I kept speaking to dad on a regular basis throughout my hospital stay). I was scared to sleep incase I wouldn’t wake up again. I started to have problems urinating, and when I went for a wee, I would run the tap or whistle ( things I remember from my dad years ago to help the process). It didn’t really work and I only trickled or started and then the flow would abruptly stop.

This was when my husband took me to A&E, and I was home 10 weeks later.

I remember the surgeon coming to see me and telling me that I had been ill for too long and that I looked ill and was ill. He said he needed to operate very quickly “Tomorrow ” he said. ( it was Saturday so I was surprised it needed doing that urgently). I told him that I was petrified a wave of sheer panic ran over me. He said that he would do a CT scan, and depending on the results we may have a few days to prepare. Needless to say, I didn’t get the few days. I had half a day with my family, they kept my spirits up and I even remember laughing at one point. Hysterical probably 🙂

A stoma nurse had time to come and see me, she was lovely and I am grateful for that.She told me as much as impossible within a short time, and marked my tummy with a dot to show the surgeon where we had decided the stoma would be. I will never forget the porter coming for me, it was surreal. He took me to an empty pre surgery bay, I assume it would have been busier had it not been a Sunday. I saw people walking in and out in their scrubs but they didn’t come to me. I had too much time to think and I didn’t like it one bit. Eventually a doctor came to me and said that they needed time to get some blood for me, as I had an antibody in my blood that wasn’t “in stock”.If there wasn’t any in the hospital, surgery would be delayed. There was a big chance I would need blood, so they wouldn’t operate without it. They then took me to the recovery bay while they waited for the blood. I just lay there, watching people coming back from surgery, and doctors and nurses tending to them. No one really spoke to me as I was just there waiting. It was pretty awful, as I had already waited in the previous room. I hope someone might read this and realise that patients awaiting surgery, really don’t want  lots of delay and to be left alone.

After what seemed like hours, I was wheeled into the pre-theatre room to be prepared for surgery. It was quite a small room but was pretty full with doctors , nurses ,anaesthetists . They informed me that they were going to put an epidural in and got me to sit on the edge of the trolley. I was so scared I asked if I could be sedated before I went through into theatre. They obliged there and then, it was brilliant sedation because I remember nothing else until I was in the high dependency unit.

I woke up and immediately and had the thought that at least I had made it through surgery. My throat was the most painful thing, and I could hardly talk or swallow with the tube down my nose.I thought that I might not be able to cope with this, knowing I had no choice. My family came to see me, and the memory is slightly vague, but so was the visit as I was so sleepy. I remember some words and hugs which I mention in my first blog. Later I remember a nurse coming to me and all I seem to see, was her unravelling lots and lots and LOTS of wires , that were attatched to my neck mostly. It was very strange, because she seemed to be doing that for hours.

A doctor came and said that I had had a central line put into my neck vein, and that it hadn’t been fitted correctly and some of my vitals were not on the screen. He said he would have to take it all out and replace it on the other side. I was still a bit dazed so just nodded. He covered my face with a plastic see-through sheet, and am sure he covered his own head with one too, was I imagining this I wonder? I must ask. Next he put a local anaesthetic in my neck and there was a lot of pulling and pushing. It was dark and the sheet made me so hot, I was struggling and was scared, but eventually he finished that side and transferred the wires, then took out the other central line.

Again the nurse seemed to be ages messing with all the wires. I remember some other patients coming and going, although there are only four in HDU at one time with 2 nurses. I have to admit, you feel quite safe knowing someone is there constantly watching you. They were all exceptional and cared for me so much.

They let me have sips of water, and I was so happy when they took out the tube. What a strange sensation, they tell you to take a deep breath then exhale while they pull it out. Just when you think you can’t exhale anymore, out it comes. Then came the first cup of tea, I thought I would just glug it down, but was shocked when a few sips were enough. They explained that I had ileus, which is when the bowel shuts down and goes to sleep through being handled during surgery. It can take a while to wake up so I have to be slow with food and drink. If I am constantly sick, in goes the tube again. I was asleep when it went in the first time, so the thought of being awake to have it put in filled me with dread.

I was on the high dependancy unit for three days before I went on the ward.