6.30pm

As you probably know by now I ended up back in hospital on Sunday night. Following problems with bacterial overgrowth I ended up being sick every time I would take food and by Sunday morning enough was enough.

Soon after being admitted it became obvious to the team that I was very dehydrated. Although I was putting about a litre of water down my tube and drinking as much as I could my kidney function results had worsened dramatically. The first bag of fluid went through in an hour and eventually new bags settled back to 8 hourly. Fortunately my kidney function is now starting to improve but I will need another day or so of fluids to get back to where I need to be.

My surgeon did an immediate scope and biopsy and with both results coming back positively I was able to rule out rejection issues. I have though developed a fairly acute fungal problem and that coupled with the bacterial problems seem to be the cause. It is definitely a relief to get this sorted as there are medications that I can go on to hopefully improve the symptoms. One of the drugs does though effect my immune system so it is a balancing with my other drugs to ensure that my immunosuppressent levels remain stable. Hopefully in a couple if days I will be able to go home, meanwhile it is awaiting game to see how things react.

Justine and I do still have a concern over my motility issues with my stomach. It is still causing me difficulties in digesting properly. The combination of the problems I have coupled with the anti sickness meds make it difficult to settle and it seems that it might not settle for some while.

This episode is definitely seen as one of those things on the path to recovery. For us as a family it is still tough to deal with the ups and downs. Although life wasn't perfect at home we had got in to a routine. Now it all changes again. Still I have been reassured that things will get right and life will return to normal. I feel that this is just another blip on the road but it has got me down and feelings of frustrations rear their ugly heads again.

Oh well!

More updates as soon as I have them.
X
Michael Seres

5.58pm

Well last night was fun - NOT! As you know I was a bit rough over the last few days but after a decent scope I thought things were going to be fine. Having got home from a lovely evening with friends I started to feel really uncomfortable. The horrible taste of bad eggs became continuous but I thought that a decent night sleep and all would be fine. Boy was I wrong. 2am I found myself with my head over the toilet and large stoma output. Then 5am came the next wave, except this time it was far bigger. Unfortunately I only just made it to the bathroom so while I kneeled down with my head over the loo again my poor wife who I had woken up by mistake had to spend the next few minutes clearing things up. Eventually I managed to get myself back to sleep but it was lunch time today before I could face a piece of toast. I know that so many of you have been sick plenty of times before as indeed have I but somehow the discomfort last night was not something I had experienced for a little while. Of course I have been in touch with the team today just to make sure it is nothing more than a symptom of the bacterial overgrowth and hopefully things will settle tonight.

The real unsung hero in this whole process is my wife Justine. I am not sure that this was exactly what she signed up to when we got married twenty years ago. However throughout this journey from crohn's disease to a bowel transplant she has been absolutely incredible. To put up with everything that she has had to without ever really complaining (well maybe only on the odd occasion) just shows what a special person she is. When you go through illness it is in some way easier to be the patient. However looking on from the side lines, sometimes feeling helpless and always having to pick up the pieces takes a very special person. For those of you who have been through surgery you realise that two very important things have to be in place to ensure recovery. Firstly you have to have absolute faith and trust in your medical team (something that I have in bucket loads) and secondly you have to have a support network. Again I am incredibly blessed to have amazing friends and family to help but I could never imagine going through it all without my special wife. She is my unsung hero.

Right I have said enough and she will be home soon and probably tell me off for still being on the computer. I decided this time that although most of you know my wife, plenty don't so tonight's picture is the unveiling of my wife (in blog world that is!!).

Till tomorrow.
xx

5.45pm

Yesterday was a particularly crap day. For the first time in ages I spent most of it in bed and when I wasn't in bed I was throwing up. I suspect that it was just one of those things, even a bug but that is the trouble with bowel transplant recovery, you just don't know. There is always the question, shall I phone Oxford but given that I am starting to know my body a little bit better Justine and I took the view that if there is no temperature that it should settle down. I hadn't realised how much of my life is dominated by blogging, tweeting, Linked In, discussion forums and all things on line. You go off line for a while and end up with so many wonderful messages asking if you are ok. Believe me I am a complete computer dummy so the fact that I can hook up with so many people around the world is amazing. It makes me feel part of an incredibly special community. Then of course there is the world of texting, bbm and WhatsApp now what would I do without them, I might have to actually talk to people.

Anyhow I woke up today feeling a little brighter but still pretty uncomfortable. I guess that by sleeping so much yesterday I had got a little dehydrated but it was off to Oxford for my usual check up. There is one lady in the blood test room, Helen, who is amazing and always seems to find the tiniest of veins. Thankfully she was around today so things weren't too bad in that department for a change. Without Helen its usually 5 prods and then revert to the picc line but today she was there. Only problem is that she is going away again soon - I can feel the bruises starting up already.

After a good catch up with the transplant coordinator it was time to see the dietitian and my surgeon. There was also a visiting dietitian at the hospital today so she was brought in to the discussions just to see if she had any new thoughts. You know that I think they are all great but somehow after each visit they still manage to make me feel like they are in control and will always solve things. We discussed with both the coordinator and the dietitian my problems with food. They both totally understand that this is a long term problem that will eventually solve itself. Shoving food at me or constantly asking what I am eating won't work over time it has to come from me. So one of my homework's over the next couple of weeks is to make myself something, whatever I want, each day and eat it without anyone else suggesting food or making it for me. It is not the volume that matters just the psychological fact of trying to do it myself.

We also discussed the problems with the feed and bacterial overgrowth. The output issues are caused by the bacteria problems and not by the feed itself. The fact that I cannot seem to tolerate the feed is not down to the contents of the feed. In fact I could be eating steak and chips and with the bacteria problem as it is at the moment the output issues would remain. So I am now on a new lot of sachets to take. It may be that they will also have to be joined by antibiotics and eventually the good bacteria will get stronger and the bad bacteria will disappear. That is the theory so I am happy to go with it.

I also had a scope which in general was ok. A few of the vilai in the bowel were not quite perfect but overall the surgeon was satisfied. Hopefully no more scopes for another month!

Another piece of homework is to continue to inject water in to the bowel on a daily basis. It now needs to be 1.5litres per day plus whatever else I can drink myself. My urine output remains relatively low and they just want to ensure that I don't cause any damage to my kidneys.

So as you can see it was a thorough MOT today and now that all my parts have been checked I am good for another two weeks.

One of the things I am discussing with Oxford is to create a bowel transplant support group. I am incredibly lucky to be linked to so many wonderful groups at the moment, it would just be fantastic if I could help and support others who might need to go through what I have been through. Will keep you posted when I know more. In the meantime though it has just been agreed by my kid's school that the Transplant Coordinator will go in to the school and give a talk about transplants and bowel transplants in particular. Am very excited by this and can't wait to see and hear the talk.

Finally here is one image that won't freak you out. One of the main reasons for having the stoma is that it provides access to scope the bowel. This was one of my first scopes. It may look a little blurry but the surgeon knew what he was looking for!

Till tomorrrow
x

7.42am

Back on the feed today with similar results. I have been back in touch with the team at Oxford and will go back on Thursday for more discussions and no doubt another scope. If I am giving the impression that it is all doom and gloom then I am sorry because that certainly isn't the case. I remain incredibly upbeat that this bowel transplant will turn my life around and will do the same for my family. In the meantime though it is a journey to reach that goal but believe me I will reach it.

I have spent quite a bit of time lately trying to get back in to work mode. I have a few different things that I am trying to develop so although it seems that I am chained to my sofa I am trying to put the time to good use. I will let you know as soon as there is some real progress but for now it is a load of emails. I am though realising that my blog is getting out there to a wider audience which is beyond my wildest dreams. Helping other sufferers and their families is an absolute goal of mine but it has started to lead me down a path of techno babble that is way over my head. You have to realise that at 42 I am so old in computer terms. Suddenly I am having to learn about key words, google analytics and don't get me started on SEO. It has taken me a week just to remember what SEO stands for. Anyhow it has got my brain in to gear and I guess that is also part of the recovery process. Just thinking about anything else other than my transplant is progress. However the most amazing part of it all is the chance to meet and communicate with fantastic people from all over the world, how lucky am I.

Back to the reality of my recovery and things are moving at a little slower pace. This bacterial overgrowth issue doesn't seem to be settling as quickly as I would like. I certainly can't fault my team though for trying to solve the problem but from tonight I have been given a two day reprieve off my feed to let things settle. The only condition is that I eat a little but that I drink as much as possible. And before you ask yes I am drinking and also putting water down my pej so that my nice new bowel can carry on working.

Tomorrow my wife and I have to attempt a bit of wallpapering - yes you heard it right. We had a leak right before I got called in for surgery and now that it has dried out we need to wallpaper. Can't say that I am so excited by the prospect but hey it will be fine.

Given that my photo gallery is nearly over I thought that I would show you what it was like going in a London Ambulance. Notice the expression on my face it says it all.

Night night.
x

11.44am

It was a fairly quiet day yesterday so I thought that I would give you a rest from reading my drivel. Today however my bowel transplant world came alive again.

After the usual bathroom visits in the night (it is actually amazing what you can do with your eyes virtually shut) I woke up feeling really yuk. A dash to the toilet resulted in an early morning chuck up and then it was back to bed. Eventually I summoned the energy to jump in the shower before changing the stoma bag. Well changing the bag was fun. NOT! After using what seemed like an endless amount of wipes I ran out, still that would usually be the time to put on a new bag and get dressed. This time though the output didn't stop. It kept going and going for about 15 mins. Needless to say it was shower time again. Finally I got myself sorted and decided to take the dog for a walk. As you do when your dog does what a dog has to do I carefully picked up his mess only for the bag to split. What is it today with me and poop - don't answer that please.

As you will have probably read my relationship with food is a hot topic at the moment. It took about 1 minute 30 seconds after I woke up from surgery for some people to assume that I would be ready for a full chicken and roast potato meal followed by apple pie oh and don't forget the soup starter. The reality some four months on is that I am eating more than I have for some time but my desire for food hasn't kicked in. I am lucky on two counts; firstly my dietitian is brilliant about taking the stress away from eating and doesn't push me too hard and secondly my wife is equally brilliant at ensuring that I do eat little and often during the day. Without her I would probably eat less as I don't ever really feel hungry. I am still convinced that it will come all in good time but maybe that isn't the case and I know that is what worries her. Sometimes I just want to scream when the word food is mentioned, especially when the first words from some are always what are you eating? why aren't you eating? what shall I make you to eat? Leave me alone please!!

Away from my transplant bubble my eldest son Aaron has his mock GSCEs this week. Scary really that I am old enough to have a son who will be 16 in 2 weeks. He is taller than me, better looking and yes he eats more than me. I am incredibly proud of all three of my kids but I can't help but worry about how well he will do. As long as he does his best then Justine and I can't really ask for more than that.

Ok this morning's dramas are over, let's see what happens this afternoon. I suspect that I will let you know.

Thought you might like this photo. It was written to me by a very dear friend while I was in hospital.

Take care
M

7.46pm

I had a day off from my feed yesterday. Had been feeling particularly rough so I thought that I would take a break and let things settle. Today was back to normal in my transplant recovery. Although I had fairly high output over night and plenty of broken sleep I took my anti sickness meds and then put on the feed. Generally reaction to the feed going on is ok and today was no exception. The problem seems to occur later on in the day after I have been hooked up for about 5 hours. I still seem to suffer with a bloated stomach and discomfort that gets worse as the day goes on. The the output starts and so the circle continues.

I am though very conscious that I probably spend to much time worrying about my feed and forgetting the progress that I am actually making. When I think back just 4 months to how I was then my life is very different now. Sometimes it is very hard to focus on the positive when there are still so many things going on that cause a few problems. Perhaps it is inevitable that my feed is what occupies my mind the whole time but believe me going though this bowel transplant will prove to be life changing, of that I am certain.

One thing that does worry me a little is my lack of interest in food. Actually it probably worries others more than me as it would be totally unrealistic to think that a switch would be turned on and suddenly I would start stuffing my face. Food has never been a high priority for me and I have always said that if I could take a tablet instead then I would rather do so. However one of the potential up sides from this bowel transplant should be that my appetite will come back. Do though wish that sometimes people wouldn't constantly ask me why I am not eating and why I don't have a bigger appetite already. My dietitian says it will come back in time and as you know I have complete faith in her.

That is all for now. It seems that there are still so many unanswered question but as every day goes by it is a day closer to a more normal life. Now that really is something to dream about.

Yesterday sleeping beauty was shown on rogues gallery, today though I thought I would show you how fashion conscious I was in hospital. In true tradition nothing ever matched!!

Till tomorrow.
x

9.25pm

I won't bore you with the latest output saga, you know the score in my bowel transplant world. The only thing I will say is that these anti sickness patches are not working. By the time I went to bed last night I was feeling pretty rough and had to take my injections and ditch the patch. I guess that I will give it another go again in a few days but I need a few days back on my usual meds.

Over the years and after many operations I never really worried about keeping my six pack and how my body looked. Before you ask I actually never had a six pack it was more like 26 pack and I know that I am no George Clooney perhaps closer to Brad Pitt or Tom Cruise. Anyhow like many sufferers my stomach and upper body carries quite a few scars. I have managed to accumulate a few more going through this transplant and with a stoma and feeding tube still in place it isn't the prettiest of sights. Yes I know it could be worse but actually for the first time I have started to feel a little self conscious. I am not actually sure why because I am no Adonis but somehow it does seem to matter. With my daughter being head of the fashion police at home I am used to brushing off comments such as "dad you can't go out wearing that" or "dad not your best haircut" but when it comes to my scars the fashion police have never said anything. In fact the kids are brilliant and don't actually care but I don't know why but it does bother me a bit.

Generally I have been lucky that with the bulk of my surgeries it has almost been as if I had a zip in place as the main scars just seem to replace each other and not add to the patch work quilt. Maybe I am having some sort of mid life paranoia but I can't seem to shake it off. I am very much aware that there are plenty of people who will be worse than me for all sorts of reasons yet somehow for the first time ever I don't really like what I am seeing. Hopefully it is just a passing phase and very soon I will revert back to that care free attitude. Maybe you can buy stick on 6 packs? If anyone knows where to buy them or better still has one I could borrow please shout.

Not only have I started worrying about my physique but my hair is still thinning out and even bizarrely starting to change colour a bit. What is going on, it was a bowel transplant I had not an audition for a realty tv make over show?

Tomorrow I may well be back to the usual transplant issues but tonight I thought I would share with you what is on my mind. Tonight's picture is of sleeping beauty!

Till tomorrow
x

9.01pm

Went back on my old feed today just to ensure that the problems were nothing to do with the antibiotics at all. Judging by my output today I think it is fair to say that the feed alone doesn't seem to be a disaster and the antibiotics also seem ok so tomorrow it is back on the new feed and back on the anti sickness patches as well.and let's see what happens. There is no doubt that the new antibiotics have caused a change in timings of the output as well as a few other differences but we won't go there. At the moment I seem to have a few difficulties within the first couple of hours of the feed starting but then it is at least a further six hours before the real output starts.

Perhaps the biggest aggravation of the new feed is the constant stomach ache and also bloating issues. I probably sound like a broken record going on about it over the last few days but the reality is that the discomfort hasn't gone away. I have kind of got used to it and taking more pain relief and I guess that I am hoping that it will settle over the coming week or so. I will go back to Oxford in a week's time so hopefully by then all my experimenting will be over and life will be a bit more settled. On the positive side I am definitely eating a little more. Can't say I feel hungry but thanks to my wife's perseverance in ensuring I eat what she puts in front of me I am doing better. Mint Vienetta is definitely a favourite. Wonder if I could get them to sponsor my bowel transplant recovery? Maybe not.

Right time to go. Got to watch a recording of Hustle with the kids. I will up date you tomorrow once the new feed and new patches have done their stuff - whatever that might be.

Thought I would end with a laugh at myself. For those of you who have been a bit put off by some of my pictures have a look at this one. You may have read about my high temperatures due to infections so this was how I cooled myself down. They are filled with ice, honest!!

Till tomorrow
x

5.56pm

It has been nearly two days on the new feed and I think things are starting to settle down finally. My stomach looks like its carrying quads and I'm still taking tramadol regularly but the output has definitely slowed down a bit. Hopefully if things go well tonight then I will definitely feel that it is going ok. The next step on this bowel transplant road to recovery is to try my anti sickness patches again. I will start these tomorrow and see how it all goes. I get regular reminders to keep trying them so I promised tomorrow to give it another try. The thought of potentially being line free is both exciting and very scary but I guess that it has to happen at some stage. Pathetic how attached you become to these things. I am not sure if it is even the line I'm attached too, I actually think it is the fact that the best relief from sickness comes when the meds are put through the line so I guess I am more concerned about losing those meds and the relief they bring. I have been told that the patches are excellent so I guess I will just take the plunge.

The kids are on half term this week so chaos and mayhem reigns supreme. It is actually amazing how much they take what I have to do in a day in their stride. My routine is just the norm for them which is just the way it should be. "Where is dad this time?" "In the loo again" "don't go in there for a few hours, dad has just emptied his bag", "dad, do you have to show us your belly all the time?" These are a few of the daily phrases that just seem to come naturally to all of them. With my eldest doing his GCSE exams this summer he has even asked if one of the transplant team can come and talk at the school. They have so kindly said yes so I am trying to arrange it. A few days before breaking up he had a biology lesson that happened to be about transplants. The teacher couldn't quite understand when he asked "how do you get a cannula in when the veins keep collapsing?" "Do you need a hickman line for all transplants?" The questions went on until finally the teacher remembered who he was and what he had been witnessing with his old dad. They are though incredible kids. Justine and I always said that we would tell them exactly what is going on at all times and they just take it all in like sponges and really do not get phased by anything. What this does do though, is make me even more determined to get back to full health and just be a normal dad. Stomas, enteral feeding, picc lines need to become just a memory for them.

After a few overnight hiccups with output I have started to sleep a bit more upright. Although it may seem a bit more uncomfortable it stops my stoma bag from effectively going horizontal and reduces the risk of it leaking. It may sound a bit paranoid to you but until I have had a few more days without any overnight problems I at least feel that I am reducing the risks a bit.

So finally my rogues gallery. Lying in hospital I couldn't wait to get my own pyjamas on. The only trouble was that I still had a few drains in me. So I decided to start a new fashion trend in pyjama bottoms. I won't say any more.

Till tomorrow
x

12.09pm

Yesterday was interesting to say the least. I started the new feed the day before and although I felt pretty rough things seemed ok when I went to bed. By 2am I was awake completely covered in you know what as not only had the bag split but it was overflowing. So in to the bathroom I ran whilst my very tired but amazing wife sorted out the mess left behind. Sorry if this is all a bit too graphic but if you are interested in following this bowel transplant journey then it is warts and all!!

By the time I woke up yesterday morning I really did feel rough. The trouble with working out the cause was that I started new antibiotics, new anti sickness meds, new feed and new tablets all at the same time. I automatically assumed that it was the feed but in truth it could have been any one of those changes or even a combination of taking them all together. Yesterday we took the decision to lay off the new feed for a day and to revert back to my usual anti sickness regime. Although things were pretty uncomfortable yesterday at least the output slowed down somewhat. Most importantly though I managed to get some decent sleep last night.

Now I can bring you right up to date with things this lunch time. I am back on a feed but am on my old feed today. Why you may ask? Well simply because I know what the usual output will be and I just wanted to rule out that it was solely the antibiotics that caused the trouble. I suspect that it is not them and I will be back on my new feed tomorrow but it seemed to make sense to do it this way. I have also been in touch with the dietitian and she seems to be happy with what I have done so it is just a question of keeping going. What was amazing that with such high output I really felt totally dehydrated. I am usually a bad drinker but yesterday probably downed more fluids that I have done in a long long time. I was also told to take dyralite sachees to put back some of the lost salt so the combination of everything kept me going.

Am just taking it easy today. It's my eldest son and me together as the others are out for most of the day so while he revises for exams I will watch football, can't be bad!

I have heard on the grapevine that some of the photos I have posted caused a little upset so hopefully today's will be a bit more cheery. The idea behind posting these is just to raise the awareness of what it is like going through the journey. So apologies if I have upset anyone. This one was taken preparing for my first walk out of bed. I am modelling the wonderful NHS gowns, the only problem is that they are open at the back so you can imagine the view - not a pretty one I can assure you.

Till later
xx

8.06pm

Woke up this morning full of positive fibres. New anti sickness pad stuck on behind the ear. New feed already to be started and biotin tablets to stop my hair falling out. So off I then went and had a really busy day which was great for the brain but not so good for my physical well being. Started first thing seeing a friend and neighbour for coffee and then followed that up by a meeting with one of my former doctor's at a hospital his central London. I went there in my capacity as a new trustee of our charity 3C's. If you haven't heard of it have a look at www.3cs.org. I spent a little while talking through my transplant as I think I was the first patient to have come from this hospital to then go for transplant. I very much hope that they will refer any new patients potentially needing a transplant to Oxford and hopefully I did a decent job as surrogate sales director for my transplant team. The rest of the time was spent discussing how we can grow the charity and to my delight the Professor has agreed to head up our medical advisory panel which is a great coup for us.

Eventually I got home around mid afternoon and to be honest was already feeling pretty sick and fed up but determined to stick with it and despite wanting to take off the patch I surprised myself by not being a total wimp and kept going. With the feed now in full flow, antibiotics being taken I felt worse as the day wore on and by the time I started writing this diary entry things really didn't feel great. The trouble is, I had started everything in one go so I don't actually know what is the cause - pretty stupid eh, you would think by now that I would know better. Anyhow I can't stop the antibiotics and having had them before in hospital I figured that it couldn't be them so it was down to the patches or the feed. So sorry Oxford but the patch has just lost!! I decided to take it off, stick with the feed and do some anti sickness injections.

Tomorrow I think I am going to keep going with the feed and do the injections for a day and see how I feel. Logic tells me that if I still feel lousy then it is the feed but if I feel a lot better then I will reintroduce the patches and see if they are the cause. So if any of the team in Oxford are reading this SORRY!! I didn't have the will power or the energy to keep going on everything. I will go back to it all over the coming days and then let you know what happens. As for the rest of you, yes I know I might be a bit of a wimp but hey tomorrow is another day so lets stay positive.

Right that is my lot done for the evening. Time for a bit of tv then meds and bed. Obviously I can't go without the next instalment from my rogues gallery of pictures. This time have a good laugh at my sexy leg warmers!

Night night
x

8.06pm

Apologies for no blog last night, in truth I was knackered and figured that I wouldn't bore you with idle chit chat. Today on the other hand is different and you will have to put up with my bowel transplant exploits.

We left early for the trip back to Oxford and found that for once there were no snow delays, no icy roads, no stupid traffic delays and we were there in about an hour. My check up always starts with bloods. I am greeted with about a dozen test tubes and then is my favourite game of "hunt the veins!" Trouble is I know who wins and it's not me. A few attempts later and the joker gets played "let's use your picc line" and they do and problem is over. Having said all of that I know that the picc line already about to walk the plank and may not be around forever so at some stage these random stabs have to hit blood. There is an ongoing worry about the risk of infection with the line so whilst I have managed to get a stay of execution for now I am not sure how long that will actually last.

I had my usual scope which seems to be fine and the key thing is that the bowel looks pretty good. I still seem to have a bit of bleeding around the stoma but I don't think it's anything too serious so we agreed to leave it be for now. In keeping with the incredible standard of care and attention that I receive there the dietician had spent quite a while reviewing my feed issues. The feeling was that whilst it isn't a disaster it is still something that needs to be sorted and she is confident that it will be. I hadn't realised that the gut literally has masses of bacteria in it so identifying the problem bacteria isn't so easy. The previous antibiotics were not strong enough so I am now on another ten day course of stronger ones. The idea is the same that they will get rid of the bad bacteria so that eventually I can take other meds to put back in the good ones. At the same time as changing my antibiotics I have a new feed to try. Hopefully the combination of the two should knock things in to shape now only time will tell. You can't help but come away with a feeling of complete trust in the team. The care and attention is second to none and I am certain that if by some chance these changes don't work then there will be other solutions. Sometimes it is a bit of trial and error and although at the beginning I found that quite frustrating I think that I understand things a bit better now and there isn't always an immediate solution.

In keeping with trying to be weaned off the picc line I have been given special anti sickness patches which are supposed to last up to 72 hrs. You stick them on behind your ear and I guess they will work in the same way as pain relief patches. Sickness is probably still one of the biggest factors in my day and one of the symptoms of the bacteria problem is feeling sick. Well I promised to give these patches a go so starting tomorrow I will. At least I still have the picc line and meds as back up. Will keep you posted with what happens, but I have to admit I am very nervous about this change. Not because I feel so attached to the line but more because I have found that giving the drugs through the line is the most effective way but hey let's see.

I will be back again in two weeks for a further follow up and will continue to keep them updated in between times so tomorrow the new feed will start - don't worry I will keep you posted!!

Finally I can't end my blog without commenting on the fact that today, 8th, is the same day that I had the transplant a few months ago. Although it does feel a lot longer than just a few months I am already starting to think towards the future and the key time of having my stoma reversed. It is funny how we always say at home that it has already been a few months whereas the transplant team say, well it has only been a few months. I guess that shows the different emphasis we place on our recovery timeline and does serve as a reminder that actually it really has only been a relatively short time.

I thought that I would finish with another photo from the rogues gallery. This is my impression of sleeping beauty, yes I know I needed a shave!! I am on the high dependency section of the ward having come out of intensive care.

More tomorrow so take care
x

8.22pm

Well this belly ache has come back with a vengeance. I woke up this morning and thought that it had improved massively but that didn't last much past lunch time and at the time of writing this it is back to being pretty uncomfortable. Who said being a bowel transplant patient was easy?

Despite the usual ups and downs I have taken a long hard look at how much I have progressed over the last four months. If I think back to where I was last summer and compare that to now then I really begin to realise how positive the future will be. Trouble is that when you are in pain and discomfort then it isn't always easy to keep focused on the big picture. Stoma output today went up again. I'm not actually sure why as I haven't changed my regime at all today so I will just put it down to one of those blips. I am very conscious of not being a nuisance patient and by now you would think that I would be used to the ups and downs. So much of it though is the unknown. Living for 30 years with Crohn's I pretty much knew everything that was happening to me, I knew what the different aches and pains were and when something was serious and something was just a minor blip. At the moment I guess that I am still in the getting to know you phase with my new transplanted bowel. With time hopefully I will be able to wheedle out the minor problems from the more serious ones but it is still early days and therefore I think I probably worry more than I need to. It is probably the same for Justine and often we ask each other what we both think may have caused this or that and then stare blankly at each other when we don't know the answer.

So another day is nearly over. Not been that good today but still it's a day closer to full recovery so I had better stop moaning.

To make you laugh I will put up another photo. This one is of me being told to get up and move in intensive care. Enjoy!!

Till tomorrow
x

5.58pm

Sorry I didn't blog last night. Could come up with a few excuses but actually I couldn't be bothered, it was late, I was knackered what else can I say.

Been feeling a bit down in the dumps this weekend. In all honesty I am not sure why. Yes my stomach has been giving me a bit of jip and a few extra tramadols have been taken but I don't think that is the problem. I just think it is one of those things. Can't be happy the whole time can I?

I have noticed over the last few days that my mind has started to focus back on work and what I can do and when. I had this pipe dream that I would be able to build a network helping others who are either suffering from Crohns/colitis or contemplating going through a bowel transplant. I would like to feel that I am fairly well equipped to support patients and their families and talk through the issues in hand. I feel very lucky that through this blog, my tweeting and the wonders of the Internet I am not in touch with so many people around the world. I probably spend a few hours a day on line to families and fellow sufferers and for me it is incredibly rewarding. I have been very lucky to have been asked to write a few articles for various patient bodies and the blog now features on a number of different sites. At the same time I have come across some truly inspiring people who despite all their troubles cope amazingly. I feel very lucky to be part of this global community where we all have a common bond and all try and help and inspire others. Hopefully this is something I can continue for years to come and if at the same time I can tell people of the wonders of the team at Oxford then so much the better.

Recently I became trustee of a great Crohns and Colitis charity and of course there is our 3rd Paris to London bike ride to look forward too. This year my wife is part of the crew and one of my son's is riding part of the course so feel free to click the link on the right for more details - excuse the shameless plug!!

On the work front my mind inevitably wanders back to licensing and merchandising as this is the area I have worked in for twenty years. Things have changed enormously over the last couple of years but finally the old brain is starting to work and I have a few things that I am looking to develop so hopefully watch this space.

Meanwhile back in my bowel transplant world there is actually not much new to report. Food seems to be the last thing I want at the moment but before anyone shouts at me I am still trying, or rather my wife continues to place portions of food in front of me to eat. Am back at Oxford on Wednesday for the next check up and in the meantime let's see what happens with the feed. My dietitian seems happy that the output is now not happening as soon as the feed goes on. In fact it can be six hours later before the flood gates open. Soon I will have to go back on to the "full fat" feed again so let's see what happens then. I will keep you posted.

I figured that might be a good time to start posting a few images of life in hospital. As well as doing the blog my wife also kept a photo record of all stages of my recovery. So please ignore the fact that I will probably remind you of what George Clooney looks like in a hospital gown and have a look at my first pic. This is me in intensive care soon after theatre. Feel free to comment in any way you wish!!

Till tomorrow.
x

8.01pm

Took a unilateral decision today to stay off the enteral feed and give myself a rest. As you all know this feeding lark has been a real pain and I know recovery from bowel transplant isn't all plain sailing so I felt it was time to give myself a treat - a day off. If any of the team from Oxford are reading this then sorry I didn't ask first!! Having been up most of the night I just thought I would treat myself.

Anyhow enough said on the subject as there have been other things on my mind so forgive me if I rant a bit. There are two things that are frustrating me.  I'm so pleased that people think I am, thankfully, looking ok but unfortunately that doesn't automatically mean that life is anywhere near normal.  It's going to be a long while before I'll be eating steak and chips everyday and yes, I am I still getting pains and problems? The second thing is kind of linked. It is the feeling that people don't feel  I am perhaps progressing as quickly as I should. 'Are the team on top of things and should I not be all sorted by now?'  Those doubts really don't help me -  give me a break. I think I am entitled to get frustrated on a daily basis but if you look back to where I was just a few short months ago I think I am doing pretty well. No one ever said that I would be eating steak every night.  I am doing my best but I was always told it would take a year for everything to get back to normal. It's only been 4 months.  And if you wonder why things are not going quicker, then you really don't appreciate what I've been through. I know most of you are bored of me saying this so forgive me. The team that I am under are all incredible. I don't doubt for even one second that things will eventually settle down and there is no team out there that I would rather be under than the one looking after me.

Right, rant over just wanted to get it off my chest!!

Today has generally been a fairly quiet one.I am starting to get my head around work and the fact that I need to look at getting going sooner rather than later. I am starting to where out the sofa but at least it is with positive things as I am slowly starting to move in the right direction work wise. My greatest enjoyment though is the fact that through the blog I am able to help others. I really hope that those who have been in similar places to me over the years realise that there is hope out there and there are people who care and want to help. I wish I could speak to each and every one of you and help make your lives better. That is my mission as I want people to realise that although it is very tough coping with being a constant patient, you must never give up.

Till tomorrow
x

8.36pm

Right I have had my day without talking about stomas - it was quite therapeutic really. I just tried to ignore what was going on and act as if everything was fine in my bowel transplant world. So the debate in my mind now is do I bring it up again or shall we just ignore it. Ok, I win, just a very quick mention. My wife and I decided that my lack of appetite might simply be down to the variety of food that I am eating as opposed to a complete loss of any desire to eat. In truth that was probably partly right with the other part being a genuine desire to avoid food. So in the spirit of being adventurous I tucked in to a baby size portion of chicken goujon and followed it up tonight with a little bit of pasta. All I will say is that if I was a recycling business, I think I would be on my way to my first millions. However I am going to keep trying and see where it takes us.

It was changing base plate again today. I don't know how many of you find it but although it is part of everyday life it is still a chore. Today though I had the benefit of a new bit of technology (at least for a man!!). Yes my wife bought me a ladies razor, the one they use to shave legs in the hope that it would be a soft and gentle way of shaving the hairs under the base plate. What next?? Don't even go there on waxing, it is not happening. I have to say though it worked so any of you out there who may have similar hair issues around the stoma - ladies razors do the trick!! The only thing that I haven't managed to do is teach the stoma to stop working when the bag is not on. Perhaps a cork next time.

The dog did manage to take me for a walk today and I did get out to meet a close friend at lunch time so I guess that is continued progress. Despite everything I know and all the comments and warning I still get up each morning hoping for an improvement from one day to the next. Yes if I look how far things have come over the last three months its fab but the sickness is still there, belly aches and bloating still remain which in truth do get me down.

I know stay positive. Supporting a team like QPR you have to stay positive so I guess it is time to take stock and it is nearly time for bed. I'm knackered!

Till tomorrow
x

8.45pm

Right no talk of stomas and output today as you have probably had enough. I know I have and I don't want to bore you. So instead today in my world of bowel transplants we will talk about picc lines. My beloved picc line that could possibly be on the way out.

I have been trying to avoid the time when the line might have to come out. It is the access point for all my anti sickness drugs. I take 6 injections a day and to be honest wouldn't cope very well without them. The Transplant Coordinator called yesterday and as part of the conversation she mentioned that the surgeon might well want to take it out. Apparently the risk of infection is far too high. In truth I know this and I do understand but I have had lines for so long and always tried to look after them so for me it has been the easiest way to take these drugs. I know that there are both alternative drugs that I can take and even different ways of taking the existing ones but taking them as I have been has been part of my daily routine. All the injections can be done as intra muscular ones but they are very painful. I have been down that route in hospital and they bloomin well hurt. Still if it is the only way then we will have to go for it.

Back in hospital I developed a bad infection that was probably traced back to my Hickman Line so I know that the risks are there and they are probably heightened given my current level of immunity in my body. Still next week will be decision time. I will try and go in and negotiate with my surgeon (so if you read this then you will know my tactics) and although I know he will almost certainly win the argument I would like to know what all the alternatives are.

Tonight we sort of gave up on a very soft diet. Or at least I tried something else - a little bit of chicken. As I promised that I wouldn't talk about stomas etc I won't tell you the outcome. Tomorrow is another day though!

Till tomorrow
x