Thursday, 6 March 2008

2008 Mar 6th - Ileostomy Reversal Surgery

Well the surgery took place on Friday 22nd February as planned.

As you can see - I was very excited before hand, especially in my lovely surgical stockings.

I wrote a message on a piece of paper to the surgical team, thanking them for saving my life last year and now for giving my my tummy back. I hid it in the peep flap on my last bag with another message for PTW. It said RIP POOTUMWILLY 6/2007 - 22/2/2008. When I was coming round more in recovery I was presented with a bravery certificate from the theatre 5 team on 2nd floor - back on the ward they laminated it for me :o) What a kid I am! Mr A said they found my note and it was appreciated, I hope it gave them a little smile when they took off my paper knickers!

The op was straight forward, a nice quick operation for Mr A and after three hours in recovery sorting out my pain relief I was sent back down to the ward with my incredibly flat stomach and NO bag. Umpalumpa came with Karys and I agreed I felt up to contacting a few friends myself that she'd originally had on a list to confirm all was well. I think I must have been high on the drugs! I was so excited on the way to theatre at the thought of getting this final step over with and then, at last the beginning of the rest of my life. Scary thought.

I was on intravenous fluids only, as before, until I'd passed wind (that old favourite). So nothing on Saturday to eat, but when Mr A popped in to check on me he said I might be able to eat something the next day.

Sunday 24th - The nurses said I could have a bowl of soup at lunch followed by jelly. I had more soup at dinner followed by vanilla ice cream. My abdomen was getting very bloated and swollen, which was disappointing after the lovely flat one I had in recovery Unhappy but I was pretty sure it was just trapped wind. It was painful and I wished I'd packed some peppermint tea (or Brandy).

Becky came to see me every day and was feeding the animals for me (cat and rabbit) but apart from that I was just in bed watching Hollyoaks omnibus and popping to the loo every four hours or so, not because I felt I needed to, but because I hadn't been. Anything that came out was very watery - hard to tell WHERE exactly it was coming from since it was all the same consistency but better out than in.

Monday 25th - Still very bloated and quite uncomfortable as well as the post op pain which really wasn't that bad in comparison but under the dressing was a fair amount of bruising. Plus I've still got a hole in my belly where something once poked through muscle and skin. I had rice crispies for breakfast - the lightest thing on the menu and soup again for lunch. It was a struggle to get the soup down and I didn't eat all of the fruit salad afterwards. I was very bloated and tried rolling around on all fours, lying on each side trying to release what I assumed still was trapped wind. Both children came to visit and some family which was nice, though I did feel like I was in early stages of labour and my tummy was rock hard.

Tuesday 26th - Everything became a bit of a blur from here really. My surgeon was obviously concerned as my temperature kept spiking to 38 and 39, my abdomen was badly distended and I was in pain. Although I had passed stools in the form of water, it didn't seem to be making any difference, certainly not enough, it didn't feel like things were moving at all, I'd not been allowed food since Monday lunchtime. When I tried to take my co-cocodamol this morning it came right back up with a lot of dark green stuff. It seemed quite clear that what I'd eaten so far wasn't budging and there was no room for anything else if it was working it's way out UP instead of DOWN. My worst fear.

I got to drink the contrast stuff for a CT scan mm lovely! One glass every half hour - having been on sips of water and vomited up my pain relief I could see how this would end. Crying in pain they used a board to get me onto the scanner bed and somehow I managed to keep it all in until they'd wheeled my bed just over the door threshold. I said "I need a sick bowl" and tried to catch what was already in my mouth in my hand, but my hand wasn't big enough. I sprayed the entire doorway and wall and my bed with what looked like watery chopped spinach. Vomiting after abdominal surgery with a painfully distended abdomen is NOT a nice feeling, it's just more pain and misery - more tears from me.

Back on the ward the Sister had to put a naso-gastric tube down my nose, more tears. I'd already read on one of the MacMillan stories how horrid this is but truly, when you're in pain, vomiting and wondering if you'll ever be able to eat food again it's fucking awful. The tube is passed up a nostril, down into the back of the throat, at which point you take a few sips of water to help swallow the tube. Sister shone a torch in my mouth to check it was in place. Straight away more dark vivid green goop started coming out of the tube and into the drain bag.

My drip failed. As before, my hand is a fluid filled mess and bruised badly where the IV fluids are going in, but not into the vein any more. A nurse from the main hospital came to put another in - on second attempt at around 3am. I was fading in and out and having vivid dreams/hallucinations and feeling pretty crappy. Becky came to visit but all I did was lie, slightly propped up and drift in and out. She wanted to hug me but everything hurt and I remember saying "Don't touch me" when she arrived, if I'd heard that from someone I loved I think I'd be crushed. When I woke she'd gone.

Wed 27th - My temperature rose to 39 again when the morning shift came to check on me at 6am and I was lying in a puddle and covered in soaked bedding. My duvet was confiscated and the fan put on, doors opened etc. By now I was on antibiotics and IV paracetamol but it didn't look like my temperature was responding. They asked if I felt hot - "No I was freezing, I turned the radiator up". The radiator was switched off. The shivering feeling cold thing when you're burning up is really pretty freaky isn't it? I'd lie there sort of day dreaming or imagining I was doing something, like opening a packet and thought my hands were doing the motions, when I opened my eyes, my arms were by my sides as they always were. I dreamed I was travelling the same route over and over again, always in just my knickers and a top, desperate to find some clothes and passing the same workmen over and over who seemed more and more bemused by my attire, or lack of. I dreamed of a village fete and trying to meet my best friend who would help me, but I lost her. It wasn't a nightmare, but it was bad. Incredibly vivid, I can still see snapshots - this is where I was when they woke me to wash me down and dry me off at my highest temperature. I was so glad to be woken.

Thursday 28th - My surgeon was still reviewing my scan pics from Tuesday, desperate to find any leak that he may have missed to explain why this was happening and he decided on an enema and colonoscopy as the next steps to diagnosing what was obviously some sort of complication but as yet undiscovered. The enema shifted nothing, much to our mutual dismay and the scope showed again a healed join, a good pouch, no surgical problems, no explanation.

I was still emptying something out of my system a few times a day, every time I went for a wee, I'd pass more liquid from my bowels. Never feeling much lighter, but gradually a little less swollen. I was still nil by mouth apart from sips of water, then gradually I drank a little more. Every time I'd been to the toilet, or on some days sat on the commode they put next to my bed as I was so weak, I would retch and often vomit more green stuff. Utter, utter misery. However by Thursday the green stuff had almost stopped and it was just water that was coming back up the NG tube so at last it was removed.

I watched the lovely Gene Hunt dish out his own brand of wonderfully non PC policing in Ashes to Ashes at 9pm. The first TV I'd seen since Monday, not even able to tolerate listening to music on my ipod. I'd also had a headache for a few days. I must have felt quite faint watching Gene Hunt because for two readings my BP went down to 90/45 after that. That evening things seemed to feel better, my tummy was finally starting to go down and I managed to pass a fair amount of wind. I remember smiling before I fell asleep because I thought I might be on the mend and get through this.

Friday 29th - Things having kicked into gear last night I felt a lot more like me this morning. My colon suddenly remembered what peristalsis was and more watery stools and air left me my tummy was a little flatter, but mostly just softer. Mr A said once my drip had run through it could be taken out, which was lucky - it didn't last for the final 100ml because my hand started swelling like the other one had and pushed the cannula out. Time to try food again. This time was even scarier than the first, now I knew what eating could do to me, I just couldn't face going through all that again. Another bowl of soup (for a change).

I managed to shower myself at the weekend, having had bed baths most of the week. I progressed with my meals from half a slice of toast, one slice of bread with chicken, a bowl of soup. The next day I managed a whole slice of toast, half a salmon salad (small grilled fillet) and all of the fruit salad. On Monday after a slice of toast I managed green beans, carrots and some cottage pie, I left the three croquette potatoes and some of the pie.

I had been at the point where I wondered what the hell they would do if I couldn't eat. Well I knew the answer really, a permanent colostomy seemed unlikely if my colon didn't work, so back to an ileostomy and all this would have been for nothing. I would have been disappointed for my surgeon too if that had happened. He is a wonderful man and I trusted him throughout my treatment, though seeing him puzzled and worried I did feel guilty. It all worked out OK in the end though.

Since I got home on Monday 3rd March, I'm pleased to report that my "poo" is now resembling "poo". I can't say I have urgency issues, I don't. In hospital I went by the clock, because it had been a few hours since I last went. Now I'm upright more I think that helps. I go when I need to wee and empty then, just like I did with the bag so to me it's no different frequency wise, I'm still feeling bloated so glad to get rid of anything that's there. I only once had an "accident" in hospital which was at the height of my high temperature so I don't think that counts. Other than that I am amazed at the job my surgeon has done. I still expected urgency and much more frequency than this so I'm feeling very happy about that. Obviously still very wary in case things change but for now, I'm just working on getting my stamina back again so I can get back in the gym!

I can't thank my little Umpalumpa (Becky) enough for all she does for me, I just hope I can recover quickly so she can forget about looking after me and start enjoying herself again. I know I put her through an awful lot of worry, and my Aunty Susan and Angela and Mike, my family in Derbyshire, my internet friends (i.e. bum bandits).

Hopefully now I'm back on the HRT and able to swallow my antidepressants - no tabs for a few days so I think I got some withdrawl symptoms there and I felt myself being very snappy and uncharitable for no reason.


Anonymous said...

Lise, I'm chuffed to have you back mate. You HAD to start feeling better soon after seeing the Gene Genie, or you wouldn't have been able to get the orn.
Love Tina.

Anonymous said...

You had me worried there Sis.....

P.S. You may have asked me not to touch you, but I gave you a sneaky kiss on your hand anyway hehe x

Love you xxx

Carol said...

Well done for getting through that, I bet you were soooo glad to get home!

Sending lots of love to you and your angel sister Becky who's doing a grand job of looking after you!

Loopyloobyloo said...

Angel she is Carol, poor thing, I think I've aged her five years in the last 14 months :o(

suze said...

oh loopy - you are a star

thanks for recording all of this - it sounds hellish, tho! My reversal got put off in January, and now I am going to go for it in May (if my April scan is clear ...)

Did they ever really explain why it all stopped working? .. it sounds as though it was just the lack of peristalsis / paralysis of the bowel that means it just isn't moving stuff along? You'd think they'd have invented a littel injection to get a bowel moving again ... wouldn't you!


Loopyloobyloo said...

Suze, my poor surgeon seemed quite worried, he came to see me every day, Saturday and Sunday included, at least once. He was continually reviewing my scans and was very concerned he may have missed a leak or blockage but in the end it was just my lazy colon. An injection would have been most welcome, had they found a vein that would accept it HA!