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

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