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

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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