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.

 

 

 

OSTOPEEL ADHESIVE REMOVER WIPES

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Ok, I didn’t need these just for the bag adhesive, so it wasn’t until I started to use the Eakin seal, which left goo on skin when removed, that I remembered I had some of these. I thought I would give them a go, although I had sensitive skin at the time. I am glad I did, it took all the remaining seal goo off and left my area around the stoma silky smooth. It didn’t stop the bag from sticking either, although I still did my normal routine of barrier spray twice too. Worth a look if you want to remove adhesive of any sort, for any wound.Just to mention, you have to ask these to be added to your routine prescription, not available to order as one off. The company are pretty good for sending samples though. ( Ostomart).

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 possible 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 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.

 

LETS START AT THE BEGINNING…

Ok, so here goes, my first blog about THE operation.

I have had ulcerative colitis for years, with numerous visits to hospital, with drips ,steroids weight loss , embarrassing moments of pooping myself. Not pleasant at all.

Last September, I started with the dreaded feeling deep in my bowels, of an impending flare. I saw my consultant who tried me with various treatments, and I continued to go to work. Things started to get worse, and I ended up having an accident in my pants whilst rushing to the loo. At least it was just blood and fluid ( I will ease you in gently), so I could take my pants off and go commando for the rest of my day.

Can I just say, that people with inflammatory bowel disease try really hard to work with their condition, and only take time off when things get messy, and they feel really unwell.

Anyway, I became so ill that I left work that day, and so far have not returned.

To cut a very long story ,leading up to surgery ,short, I became worse and worse over the next 6 months that I ended up with an emergency total colectomy and permanent ileostomy ( my large bowel removed , most of my rectum and a stoma on the lower right side of my abdomen, where a piece of small bowel comes out onto my skin and I poop through that). Because I was very ill before surgery, I had numerous complications.

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This photo is just before my flare became a problem, I was in Benidorm with some friends.

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This is me hours before surgery, slight difference I think.

I was petrified of the surgery, having never had an operation before, and being a wimp at the best of times. I remember being taken down to theatre and repeating in my mind  ” I need this op, I need this op”. I was left to wait quite a while as they needed to arrange my blood, ( I know I am AB+, but apparently I have a dodgy anti body, so they needed to match it specifically. Finally I went into another smaller room with about five doctors and nurses and anaesthetist etc… to start my prep. I was having an epidural to numb me from the waist down as a pain relief for afterwards.I asked to be sedated before I went through the doors of doom, and they obliged. Can’t remember a bloody thing from then until I woke up. ( really pleased about this).

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Looking fractionally better.

I had to stay in the high dependency unit for a few days. I remember some of it. I remember my family coming in and my sister kissing me and saying ” you did it, well done, I am so proud of you, Clare you actually did it.You are my inspiration (or words to that effect)” This may seem over the top, but if you knew me and my sister, this was very tame. We both had a severe fear of general anaesthetic and not waking up after.

When I woke, my throat was so painful,I could hardly swallow. This was due to the tube down my nose into my throat to stop me bringing up yucky bile from my stomach, it would collect into a bag attached to the tube, gross that I could actually see this. I also found out that I had a difficult airway, and now have a letter I have to take with me should I need surgery elsewhere. They must have faffed around in there and made me sore. Although prefer this to needing a tracheotomy. Sorry if you have needed one of these or have one now, but I can honestly say, they are the scariest of all stomas, I have huge admiration for these folk.

I gradually felt alive, and could manage a few sips of water. Begging them to take out the tube, they agreed after a few days, and it was magical and euphoric, I am not exaggerating, I could talk better and drink better. When it was in and I wanted to speak, it would move in the back of my throat , this was a horrible feeling.

I did the odd throwing up and them threatening me with the dreaded tube again, but managed to avoid it thank god. I had’t been awake when it was put in, and didn’t fancy that one little bit.

At this point I was still on the high dependency ward, so my next post will carry on from there. I hope you have enjoyed my first post, and look forward to the next.

Clare x

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