MOVING FORWARD

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A couple of weeks before I went home, my dietician asked me if I would consider  being fed through a tube down my nose into my stomach as I was too thin and still not eating very well, this was keeping the healing process slow. I said I would think about it, and didn’t. She kept mentioning it over a few days, then one day my stoma nurse was with me when a lovely consultant whom I got on really well with was on the ward. I told my stoma nurse about the tube feeding and how scared of it being put down I was, and she said it would really be the best thing for me and to just have a go. My mum turned up too , and I made the decision to try.

We called the lovely consultant over, and I asked her if she would be willing to put it in that moment ( I was feeling brave, but knew if I left it any longer I would chicken out). She said yes and got it all together. She told me to drink some water as she was doing it, so I took the glass and drank, I just drank and drank as she pushed it down. It was horrible but manageable with liquid, but I ran out and panicked by grabbing the tube and pulling it out again. “I was nearly there” she laughed, “why did you pull it out ?”I laughed too and said I ran out of water. So, we got more water and tried again, this time with success. I was so pleased with myself, but also it was uncomfortable to start with.

My mum was upset when the tube was  going in , she went out the cubicle and chatted with another patient friend of mine. My husband was proud of me when he got there, because he knew it would do me good. The dietician was also very pleased as I think she thought I didn’t have the guts ( no pun intended).

That night they connected me up to my liquid food, to have overnight. When they flushed it with water first it was a stranger cold sensation down my throat, then I watched the food following the tube until it vanished into my nose. Very bizarre. I kept it in for a few weeks, then disaster struck.One morning I was sick, not sure why, but when I puked, I puked the tube up, it was awful, the nurse was nearby and she said “pull it out, calm down” I was waving and flailing around, and tried to pull it from my mouth but it wouldn’t budge because it was stuck to my nose with plaster, so I tore off the plaster and pulled and out it came, the relief was lovely. I was then worried it would have to go back in, but they agreed to let me try to eat again and see. Luckily it worked and I didn’t need to go home with it.

It wasn’t long before I was allowed home……

 

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).

RECTAL STUMP BLOWOUT

So when the result of the CT scan came back, I was told I had a collection of puss and fluid in my pelvic cavity, infected abssess caused by a rectal stump blowout.

This mean my rectum was so badly diseased, the stitches didn’t hold and the end blew causing major problems. I had to have a rectal catheter inserted into my rectum ( only 2 inches left) and into my pelvis through the burst stump. That then collected the nasty stuff.It was quite painful at times, especially when sitting , as the balloon bit that stops it coming out, used to press against my internal wounds.I have to admit that the temperature and ill feeling was much better with the catheter in, even though it hurt.

After a few weeks they tried to remove the rectal catheter, but ended up putting it back in because my temperature came back.This was very disappointing and I was upset, but onwards and upwards.Meanwhile my scar was still scary looking with the gaping wound being packed.

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This is it when the wound was starting to open, you can’t really stop it until it decides.

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This was it just starting to heal. Weirdly it didn’t really hurt too much, although it looked like it should. It was very scary to see, and again I used to not look when the nurses cleaned and re-packed it, eventually I would look.

I have no pictures of the rectal catheter in situ lol, not that brave.I was in hospital for over 2 months because of complications. My scar is very nearly healed now but the scar is much wider than the rest,luckily any underwear, bikinis etc cover the wide bit, no such luck with the catheter, so I stayed home until it was taken out. I am due to have my rectal stump removed in November to stop the discomfort and fluid/blood constantly coming out.(sounds as gross at it is).

I am not the only one who has had these things, and knew nothing about these things before surgery. While in hospital I met people with much wider scar problems who needed vacuum dressings. I was the only one on the ward at that time with a rectal stump blowout. The depression and tears are the hardest to cope with, for me and my family. You cannot help it, it just comes over you like a wave, you cannot believe what you have had done and how ill you are, and you don’t know when you will be ok if ever. I am grateful that I recovered eventually, and don’t underestimate the operation. I have scars and my stoma for the rest of my life, but I do have life.I am showing these images so that others know what we had to go through to be alive, and that a stoma is not a taboo subject anymore, nor is it a gross thing, that smells and is for old people.

More on moving forward….

 

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.

 

ON THE WARD

Hello again, so after a few days on the high dependency unit, with my tube out and drinking the odd sip, I was transferred to the ward.

I still felt very unwell, and had a catheter in so I didn’t need to go to the loo at all. The nurse took a look at my scar dressing and decided to remove it. All was well and the staples  seemed ok. With it being an emergency operation, I had to have the open surgery option rather than the laparoscopy option. Recovery is usually quicker and less painful with the second option, which involves small incisions with cameras to guide the surgeon.14089087_10207147621673412_5092671161253933699_n

As you can see, its pretty Frankenstein-like. I had about 26 staples from just above my belly button ( they kind of cut around the belly button) to right in my pubic hair ( they shaved me yuk, very spiky when it grew back, am used to waxing)

My stoma is on the right of the picture, under the ileostomy bag. I remember the day the stoma nurse came to show me the ropes with cleaning and changing the bag. She was amazing and the first time, she was happy to do it for me because I couldn’t bring myself to look just yet. I needed time to psych myself up.

It was agreed that the next time, I would watch and my husband was invited to see for future helping. I am very lucky to have a wonderful supportive husband who is more than happy to get stuck in. The day came, and I was nervous. The bag was removed and I sneaked a quick look to start. It was a bit like a dream, could this thing really be part of me? this was my small bowel coming through my skin !!!

Sorry the pics are large, its just how they appear.

It is so hard to keep your skin healthy under the bag, I leaked a few times too as I got used to sticking it on properly. Because I ended up with the fistula, it was decided for me to have a two piece bag. It meant I could fit the base plate first, and see where exactly to fit it and see that it was correct before the bag went on. I still had the odd leak and the fistula caused pain and sore skin, I was given morphine when the epidural was taken down, so this helped.

Next was my staples to come out. This was painful for me, I don’t know why, especially the ones at the bottom. I soon realised why. Over the next few days my scar started to open at the bottom into a deep hole. This was awful. It is called wound dehiscence. Nobody really knows why some wounds do this, but I needed the wound to be cleaned and packed every day with very sterile dressings .It has taken 6 months so far to heal, and is nearly there now, I had district nurses for months and then trips to the GP practice.

Back to the ward….I was still very unwell and was sick a few times. I struggled to walk about and was slipping into a depression.I cried often, and felt too ill to eat and drink. The ward staff were so nice, and tried to encourage me but never forcing me. My catheter was removed and I used a commode or bedpan at first. Then something happened that frightened me, I started to pass a dark horrible bloody liquid from my back passage that wasn’t supposed to be attached to anything. They sent me for a CT scan to see what was happening, I started getting spikes in my temperature too.

All this was very scary, I will let you know the results of the CT scan on my next blog, and what it meant for me……

 

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