From Crohns disease to a bowel transplant being a patient isn't easy

While I was going through the surgery and the three months in hospital my wife kept everyone informed with life and she will continue to keep you all updated in her own style so please feel free to read her blog on www.the-transplant-wife.blogspot.com. Both blogs are linked for ease of use.

.

So let me recap about life from my perspective since 8th October.

Somehow I seem to have blogged a day after my op from intensive care. In truth I have absolutely no memory of doing that at all. In fact I have no real recollection of the first few days post transplant at all. Obviously I have been told all about the care given to me and the team that looked after me but I feel terrible because I don't even remember who did what. My last memory before the op was of that walk to theatre. The most nervous, scary 100 yards of my life. I'm not really sure how I kept it together or even if I did but I do remember giving my wife a kiss goodbye walking through the doors and just wanting to cry as I physically shook with nerves. I remember then climbing on to the table in the anaesthetists room and feeling freezing cold. I kept saying can you just put me to sleep but it was about 30 mins before that could happen. Sticky pads that linked up to various monitors were stuck to my chest and I remember thinking that I wished I didn't have a hairy chest as it would hurt like hell when they pulled them off. A line was put in to my arm, a few other bits and pieces were done and then the surgeon popped in. He tried very hard to reassure that all would be fine but by then I wasn't really focusing I just wanted to go to sleep. Finally the big syringe came and the famous words "count to ten". I think I got to about 4 but who knows I was finally out for the count.

All I remember about intensive care was the intense pain when I did wake. Originally they were going to put an epidural in but on the day they changed their mind and gave me a pump which I could continually press to ease the pain. The pain was like nothing though that I had experienced before but thankfully I think I fell in and out of sleep for a while which was great.

Although I have no recollection of being transferred back to the ward or who was looking after me in those first few days. I do remember that every time I woke up I would feel down below (no not that low!) to try and get an idea of what it was like with a stoma. I couldn't face looking but just wanted to know what it felt like. Before my op they had marked up two places where the stoma might be; either to the left side or right side. In the end all the new bowel was transplanted to the right side of my body so that's where the stoma is. I'm not actually sure why it bothered me so much. I mean it wasn't as if I didn't have other things to worry about but somehow the idea of part of my small bowel being outside my stomach didn't sit comfortably with me. Looking back now I realise what a plonker I was to be so worried about this but 11 odd weeks ago it was uppermost in my mind.

After a few days I think that I started to get my brain in gear and realise the enormity of what just happened. For a while I couldn't get it out of my head that some poor family had lost a member and that I had benefited from this. I had some one else's small bowel inside me. It's a very weird feeling and until you go through it I guess it's very hard to explain why. Then there was just the overwhelming disbelief that at 42 years old I had just had a transplant. Transplant - these happen to other people not me. I don't even know why these feelings even happened after all we made the decision to go for it, no one had dragged me kicking and screaming to theatre I think it was simply the emotion of the situation that overtook me. That and a few drugs inside me.

As you might read I went back to theatre about a week later as the I kept leaking from the wound. At the time I hadn't even realised that they used staples to put me back together so when I recovered from the second op and saw stitches I just assumed that they had been used in the first place. Again why was I even bothered about this, I don't know. With all my previous surgeries they had used staples so perhaps that is why I even thought about it. It's amazing what drivel you think about. I mean stitches, staples who really cares as long as it was closed properly. I was though incredibly disappointed to have to go back to theatre. I do though remember the nurses calling my name as I was trying to wake up, I have really clear memories of being asleep, hearing my name but not knowing how to get to the end and open my eyes. I remember dreaming that I was in a Star Wars movie, then I met Moses and then I was going to meet the Queen and all in the space of a few seconds. When I did open my eyes I think I expected Prince William to be there. Don't ask me why, lord knows what tricks your mind plays on you.

I think I recovered from that second op pretty quickly and then started to get to know the team looking after me a lot more. My surgeon, who is an absolute genius, was in my room every day looking in to every blood result, every little ache and pain and was completely on top of the situation. What helped me the most was that he took the time to explain what he had done, what might happen and what he was going to do to try and improve things. The team at the Churchill Hospital are incredible. The nursing care really is the best I have encountered. Of course there were one or two that I didn't always get on with but overall they were and continue to be superb. I became paranoid about little things. I felt and still feel that I can smell my stoma every day so each time I emptied in I wanted it taken away quickly. They were brilliant at little things like this with the exception of this one time. A nurse, who was not looking after me, popped in as I had pressed my bell. He took away my urine bottles and then managed to spill the bowl with the contents of my stoma all over one of my counters. Don't worry I hear you say he mopped it up and cleaned it all within 2 mins. Oh how wrong you are. In fact he left it and scurried out quicker than I could say flatulence! Unbelievable. I did though then see the definition of pay back. My own nurse came in and horrified. She ran out and yelled for him to come back and watched while he cleaned up all his damage. It made me smile, it made her smile and funnily enough I wasn't assigned him again for some while.

Without doubt the hardest challenge in recovering from the transplant was the mental challenge. So many highs and lows and I found it very difficult to keep positive the whole time. The team would continually talk to me about the long term, about the fact that I need to think where I will be in a year's time. For me it was hour to hour, a year was way to far ahead. Come to think of it a week seemed an age away. You all know that I entered a phase of quite bad infections. One minute it would be the shakes and feeling freezing and the next minute it was very high temperatures. I'd go from 8 blankets on top of me to covering my body in ice cubes to try and cool things down. At one stage I had my wife and kids stuffing ice cubes in to the rubber gloves that the nurses used so that they could be balanced on my feet and legs. All I actually wanted was one day of feeling normal. I remember clearly saying just give me one day to get my strength back but of course that wasn't in their gift to give.

From the brilliant transplant coordinator, to the head dietitian, to the pain team and nursing team the support was superb but I felt lousy. I really tried very hard to keep my spirits up for the family but it was a dark time for me. I couldn't see the kids because of infection. Even when the surgeon had a cold he wouldn't come in to the room and night after night I would lie awake just watching the clock tick round. I'm not ashamed to say that most nights I would have a good cry to myself. It was in this period that for the first time I began to think was it all worth it. I knew that I needed the mental strength to get through but when you go from four sets of antibiotics in one day to none the next as they grapple to get to the bottom of things it is hard to take. I can't really compare the emotional roller coaster with anything else that I had been through. Twenty previous operations didn't prepare me one iota for this. If there was one thing that I would say to the transplant team when they talk to prospective patients is test their mental strength. It is so so important perhaps the most important thing you can take in to this process.

Whilst struggling with infections I did though start to realise that the pain from surgery was getting easier. Every few days they would drop the pain relief and I began to move around a bit more. The night that I was able to put ice on my feet was sheer bliss. I could bend over and actually touch my feet. Then I could stretch up and switch on my light and slowly but surely the pain eased. It was like I would laugh and cry all at the same time. It's a bit like watching QPR.

Although I hadn't seen the kids for a while my wife was able to bring in a dvd of the boys bar mitzvahs. Our youngest son Nathan had only just had his in July so it was fresh in the mind and I just wanted a reminder of what they were like. I know it's a cliche but you only realise how much you miss your family when they are not around you. Every hour that my wife wasn't with me I missed her and I longed to just see the kids for a few mins. So there I was watching the dvds with tears rolling down my face. So proud of them, so happy just to see them even if it was on a screen but I guess it just reminded me what I was missing. if anything though it did give me the resolve to get better for them. I have always said that I would take all the pain if it meant that they never had to suffer and I would stand by that a million times over.

Eventually the infections started to improve, the shakes became less frequent, temperatures came down gradually and very soon I got that day that I longed for, I started to feel better. I'm not ashamed to say that in the beginning I hated the sight of the physio coming in to the room. It was painful and I didn't feel that she was sympathetic but in reality the early work they did helped me in the long run. So if you are reading this, sorry if I was rude to you! Gradually my wife and parents would take me on walks down the corridor. My wife always encouraging/pushing me to go a little further. She would know exactly which room I walked to last time and always seemed to remember to push me to the next room. How could I let her down but I'm sure I muttered a few choice words under my breath.

Another thing that I eventually started to conquer was the fear of my stoma. Something does eventually click in your head that says your stuck with it for a while so you have to just get on with it. Gradually I learnt how to clean it, I even started to touch the stoma and realise that it didn't hurt. The best way of describing what it feels like is a softer version of touching the roof of your mouth. For some reason mine bleeds a bit when cleaning it so that took time to get used to it. One of the nurses said to me just treat it as if you are wiping your bottom except your bum is on the front of your tummy. What planet was he on!!! They say practise makes perfect and now I really can do it without any worries. At the moment I use a two piece contraption, one bit is like a base plate that sticks to your skin and you cut a hole in the middle to go over the stoma and then there is a bag that clips over the top to collect... well you know what it collects.

As the days went by so I decided that I would get in to some sort of routine. Bloods would usually be taken around 6am along with my anti sickness drugs then I would try and get an hour or two sleep before getting up to wash, change the stoma, make my bed (yes I was often forgotten but it gave me something to do) and be ready for my wife's morning visit. Washing was ok but you try washing your own hair with a stoma bag and feeding tube dangling down that you can't get wet. At first my wife would kindly do and then one day I thought this is silly I can do it. Yes I could but what state would the bathroom be in. Bending over in the shower, sticking my tube to my bag and wrapping a towel around my picc line to ensure that didn't get wet would have been the funniest site ever. Anyhow it took 6 towels to dry the bathroom but I did it. How proud of myself was I and all I had done was wash my own hair.

The next challenge was actually set by the surgeon who knew that it was time to put together an exit plan. He decided that I should go out for a few hours and get used to life outside the hospital. The dietitian on the other hand had another challenge. I could only go home if I could tolerate my feed going up to 100ml an hour so that it would only run for 15hrs. The second challenge was the hardest part bearing in mind that I started and could only tolerate 20ml an hour. Again though it was a challenge that I needed to overcome. It was my ticket home. The first challenge was more of a tough one for my wife than me. As I can't walk very far she had to lug a wheelchair in to the car and then push me up and down hills. We did though have a few lovely journeys out, or at least I did, she was probably knackered but never once complained. We saw quite a bit of Starbucks and even Peacocks but my highlight was always Waitrose - it's such a posh supermarket. We'd park in their car park and always pick up some nosh for my bedside. Knackered was an understatement when we got back but I could have a sleep, my poor wife then had to drive home. I honestly don't know how she had the energy some days, she is truly an incredible person and I love her very much.

After ten weeks or so it was time to go home. I'm not ashamed to say that I was extremely nervous and excited all at once. I was desperate to be home but it was like my comfort blanket was being taken away from me. You all know what happened a day later so no need for me to repeat it. For me it wasn't just the disappointment of having to go back it was the fact that the word "rejection" had come in to the equation. They termed it mild acute rejection but for a while I didn't hear the first two words just the last one.

Again I had to pick myself up and be positive. I think that I have got better at staying positive but again alone in my room I did find myself very fed up and frustrated. I ended up having three scopes and biopsies and staying in longer than had been predicted. After all three rejection was still there and that does leave me with nagging doubts in my mind. I am on new drugs and face another scope and biopsy next week. I guess that will be a telling point to see if there is progress. If not then what next? I don't actually know, maybe I shouldn't even worry about it but you can't help it.

I came home again just before Christmas and it is the greatest feeling that a dad and husband can ever have. To sit down with all your family around you made me the happiest man possible. Tomorrow I will pick this up again and fill you in on the rest of my journey. All I know is that it will be a journey with lots of twists and turns, lots of ups and downs but for now I'm home and that means so much. I will tell you very openly about the trials and tribulations of having a feed on for 15hrs a day and the highs and lows.

I would welcome any feedback, comments or questions that you may have. Having lived with this through my teenage years, married life, having kids etc there is not much that i won't answer. Hopefully I can help any one in the IBD club and their families.

I hope you didn't mind this long opening blog. I promise that it won't happen again but I thought that you might like to know what it was like from my side of the bed.

See you tomorrow.

Michael

Readers who submit articles must agree to our terms of use. The content is the sole responsibility of the contributor and is unmoderated. But we will react if anything that breaks the rules comes to our attention. If you wish to complain about this article, contact us here