4.45pm

Today feels for the first time as if I have gone backwards since my bowel transplant. As you know my original picc line burst and I had been waiting for a few days before I could get a new one inserted.

I get my lunch time anti sickness injections about 1.15pm and sure enough we started them on time and the vein tissued (medical term for basically collapsed vein). This meant that the canular had to come out. It was my 3rd one in about 4 days and my veins have been getting harder and harder to find.

As luck would have it, or so I thought, the team inserting my new picc line arrived by 1.45pm and so the new line could be put in and my meds could then be given in what would only be around 45min late. It transpired that putting in the line took longer than planned. No one's fault but finding the right vein on the ultra sound equipment wasn't so easy. About 2.30pm the line was finally in and all I needed was an x ray to check that it was in the right place.

After waiting for a porter for ages I ended up walking to x ray to check the line. Getting a doctor to review the x ray was easy as they were all on the ward when I got back.

I was about an hour and a half later than I was supposed to be with my iv meds so to say I felt sick was an absolute understatement.

Finally I get told that the line is 6cm too far in. Not a problem I thought. 4 hours after my meds are due, with me totally fed up I try and find someone to do it. What am I then told. Sorry we can't do it, the line team have to. When are they coming I ask? Not sure is the response but it should be in office hours. By now I had been sick twice and had over 400ml of output and counting.

To say I'm fed up is an understatement. You know that it is not really like me to ever moan about my second home but for me this has really been an administrative shambles. My nurse has been great trying to sort things out but surely someone more senior could have helped.

I think also that it is my frustrations from the last few days also boiling over. I was told a couple of days ago that in all likelihood my Stoma reversal would be delayed. My levels of nutrition are not good enough and if I had the reversal soon it would be much harder to correct the levels post reversal. I am caught between a rock and a hard place. I need the Stoma reversal to bring my colon in to play as it will help to absorb fluids and my surgeon is keen to do this quickly. On the otherhand as well as nutritional issues I also have bugs in my system and therefore joining right now my old colon with my new transplanted bowel could cause bugs to move around my system and make it harder to treat them.

On top of that is my stomach issues. I am now scheduled to have botox injections. However these can't be done straight away as the stomach needs settle from the dilatation.

As you can see it all gets a bit complicated trying to fit all the pieces of my transplant puzzle together.

Right now I am due home over the weekend but have been given lots to do. My feed now has to increase in both volume and rate per hour. This means that it will now be on for 15hrs a day. Every 4 hours I have to squirt pancreatic enzimes in to the bowel as this should help keep the right nutritional elements in the gut. Finally I also have to push in over a litre in fluid to try and stay hydrated.

I know that it will all be worth it in the end but right now the end does seem a bit of a distance away. Still let's focus on the positives, I will be home soon to my family and the infections are improving.

Sorry for the rant I just needed to get it off my chest. Who ever said that a bowel transplant was easy.

Till the next time
M XX
Michael Seres

9am

If I am honest I didn't expect this blog post to still be coming to you from room 2 on the transplant ward. I guess that I had hoped I would be home by now.

It is really a case of good news and frustrating news since we last spoke. The antibiotics do seem to be working at last and the infections are definitely improving. Finally I have managed to drag my sorry body out of bed and get going again. Although the temperature here hasn't helped and at one stage I had gone from high temperature spikes to readings so cold it felt like ice in my veins. A room heater later and finally warmth returned. How can it be so cold here its nearly May for goodness sake?

The frustration is primarily centred around my stomach. As you know the real problem has been at the end of my stomach called the piloris (excuse my dodgy spelling). Well after the balloon dilatation I thought things might have improved. They haven't, I'm still being sick and now the concern is that if they do it again will it tear the muscle. So I guess botox is on the agenda again.

My surgeon, who has been away for a few days, is back today so a full review will take place. Hopefully a few of my questions can be answered. Why did my Stoma output go from zero to 1.7litres in one day? Why do my oxygen levels continue to drop, is it a hang over from the infections? And so it goes on.

You would think by now I would be totally used to being back in hospital. Perhaps it is because it came out of the blue but this particular stay seems to have knocked a bit of the stuffing from me. I do feel that it has put me back a bit further than I had estimated. In truth it probably hasn't but in my head it feels that way. In the same way that you can get institutionalised being in hospital well I had started to be comfortable back home in family life. I know for certain that I will be home soon but it certainly feels very frustrating as to how quickly home feels a distant memory.

Right now there are quite a few things up in the air. Some of my levels are borderline as to whether I may need another bout of tpn intravenous feeding. I am waiting for confirmation of the return of "Perry"the picc line. Stoma reversal is still on the cards but if my nutrition levels drop it could be delayed. Will the stomach start working again? So may loose ends I just feel I need a bit more certainty right now. Not that anything in a bowel transplant is ever completely certain.

Finally a quick apology. I have received some lovely blog comments back but being in hospital, internet connections are pretty bad so I can't always log in and respond. Its not personal I promise.

More updates soon.
M XX
Michael Seres

10pm

so much has happened in the last week and unfortunately I am writing this whilst sitting on my hospital bed in bowel transplant HQ.

I came in for my usual scope and biopsy last Thursday and to be honest they had gone well. The real trouble started the day before. Output had gone to over 2 Litres and I was sick several times over. Sadly a large part of the output had come over night and had resulted with me having to spend half an hour in the shower at 3am. I'm sure you can work out why.

So after the scope my surgeon was concerned that dehydration had already set in and he asked me to stay in. A quick run round the local shops to pick up over night essentials and a pair of comic David Beckham boxer shorts and I was back in the ward in room 2. Oh don't ask about the boxers let's just say they were cheap.

After a couple of days of fluids and some blood results I was put on some antibiotics and thought that I would only be there another day or so. My wife and kids came up on Saturday and we had a lovely few hours together and when they left we all assumed that I would be home very soon.

Ten minutes later I found myself shaking and frozen and almost fainting on my bed. That night was a tough one. Temperature spikes, shivers and shakes followed by hot sweats and my Stoma output went from 2L to zero in one day and to top it all I was vomiting like a trouper.

That night I had the usual blood tests, urine and stool tests. Maybe too much detail but hey you may as well know. Over the next couple of days the temperatures have stabilised a bit. Unfortunately it seems that I have developed 3 different infections, in the blood stream, in the urine and stool. In addition my inflammatory markers usual shown in your white cell count had doubled. Thankfully they have no dropped a bit. The final icing on the cake was that I had become dehydrated very quickly and just over 4 litres were put in to my body intravenously in quick succession.

Right now I am much better hydrated. Am on different antibiotics whilst they wait for the bugs to grow more and they can try and identify the source.

My biggest upset is my Picc line. This is the line permanently in a vein to enable me to do my anti sickness injections three times a day. Well guess what, yesterday it burst. So now the tip has been sent off to test for infections. I'd there is one at the site then its bye bye Peter the Picc. If it's clear then I will have a new one inserted. So fingers crossed please all of you.

Tomorrow I will have been here a week and I suspect that I have a few days to go. In truth I haven't felt this lousy in ages. The only way I can describe it is very bad flu with headaches, joint aches, back ache and belly ache.

As always the care here is superb. I cannot fault them. my surgeon who is away at the moment texts me daily with updates and to check on me and also speaks to his team all the time.

Probably the main thing I worry about is how this stay disrupts my kids and wife. The kids were really settled with me at home. They assumed I was going for a routine scope but I haven't been back since. My wife has all the coping to do on her own again but hopefully this time it really won't be for long and we will be a full family again soon.

So there you have the latest. I will let you know more as soon as I know. On the meantime its good night from Room 2 Bowel Transplant Head Quarters.

M XX
Michael Seres

9pm

Well it has been almost a week since I blogged last and I thought that it was time for a further bowel transplant update. In truth there hasn't been a huge physical difference over the past few days. The reality is that I can't eat very much at all and when I do it pretty much re emerges inside about 30 minutes. I guess at least that has confirmed that the stomach really isn't working properly. It is the same thing with drink, about 1/3 of a glass is fine it is the other two thirds well they don't go down that well.

Aside from the stomach the bowel is pretty good. Last sets of bloods were ok, just can't quite get rid of the bacterial overload issues. The foul smelling burps are still there together with bloating but I am pretty content to know that it will be a few months before things settle. I am on a combination of 4 different things daily so eventually it will kick in and work. In the meantime the combination of all things above means that I am still stuck on my enteral feed for up to 14 hrs a day. I was asked to try and put some extra feed through my tube in the hope of boosting my calorie in take and also increasing my protein levels and other nutrients. Unfortunately it started to block my Pej so after finally managing to flush it free I have given that a bit of a wide berth. Am back at Oxford on Thursday when they are tying to coodinate the balloon dilatation with my scope and biospy so let's see.

As I said not a huge change in my physical well being but mentally I have been trying hard to refocus and start to put a plan of action going forward. I know that plenty of people say that you shouldn't plan or have goals because what happens if you can't reach them or what happens if you do reach them, what's next? For me though having goals and knowing that there is a plan in place allows me to cope especially when I have weeks like this last one when there is no obvious physical improvement. With my stomach, my surgeon has a plan in place, I know what he intends to do and actually even if it doesn't work I think that I can cope but not having a plan makes it harder as you feel that time drifts by.

Trying to put plans and ultimately targets to reach seem to be playing an increasingly important role in my life and by default in my recovery. I am actually not sure why or even how it started but I just feel I need to constantly have things I can try to do or plan to do. I have tried to put a plan in place with this blog, to grow it and reach more people in the hope that my experiences really can help others. In a way it helps me feel useful and worth something whilst helping others. There are so many fantastic people who create communities, web sites, forums etc all with the goal of helping share experiences and ultimately provide comfort for patients and their families. I didn't have any plan when I first started but now it has become a very important part of my life and is also a kind of therapy. Being part of a community like the ones I am part of all around the world and the charity work that I am incredibly privileged to be part of is another important part of my life and just enables me to move forward.

I am incredibly lucky to have an exceptional wife and kids; a loving family and wonderful friends and each one of those elements helps me in different ways to cope with things. In truth I am not sure if I am joining together all these elements and trying to fit them in to a box when they don't actually belong there. On the other hand I have never been through this roller coaster called a bowel transplant before. Should it all be this complex? I mean I had bowel transplant surgery, am recovering from the surgery and it will hopefully change my life and that of my family. Shouldn't that be it?

Catch up soon
Mx

8pm

I was back at Oxford today for a fairly routine update. I say routine because as usual in my bowel transplant world I needed to have my regular bloods done. Thirteen test tubes waiting to be filled with my "blue" blood. Thankfully the wonderful phlebotomist was back from her Sri Lankan holidays and although it took about 30 mins she was successful. Then it was up to the ward to have my usual scope. This time though a potential kidney transplant patient was in the treatment room so after a bit of back and forth my surgeon decided that I could do without a scope today.

We spent a bit of time discussing the options open to me over the coming few weeks. I am very lucky that I have a surgeon who is happy to just chat and outline the plan of action before we move forward. My stomach emptying is still the big problem. In truth I am probably eating less than ever at the moment. My weight has dropped a little but thankfully not too much. So the plan of action is still to have this balloon dilatation to try and stretch the stomach muscles at the bottom of the stomach. We will give that a couple of goes if needs be and keep fingers crossed. if it doesn't work On the other hand if it doesn't work then I'm in line for a bit of cosmetic surgery. Yes you heard it right!! Botox injections in to the stomach. Apparently they can also stretch the muscles and may help. Now I have heard of botox on the forehead on lips but the stomach, well it is a new one for me. There is also a final final solution which is this gastric pacemaker but lets get there first before we go in to too many details.

With options on the stomach front in place I can now start to think more seriously about my stoma reversal. It will still be in May and I suspect that I will be in hospital for about a week. Apparently day 4 will be the key day. They will watch me like a hawk as leakages are possible and it is still earlier than planned for a reversal. As I know more I will tell you but for now that is the plan.

Aside from all of that I am still trying to deal with the emotional side of having the transplant. Generally I am fine but I cannot still help but have what I can only describe as flashbacks over the whole stay in hospital. The team have been great about it with the transplant coordinator offering to sit and chat and now the offer of seeing a counsellor. I am going to take up the offer as I think it will help. It is funny, talking about my emotions has actually caused the biggest reaction of most of my blog posts. It is the first time that I would would say that I have had any sort of emotional response to my surgeries and that can be hard to square off in your head. As a very good friend said to me the pain goes away and the physical heals but sometimes it takes the mind a lot longer to reconcile itself with the body. I think for me it is sometimes hard to explain that although I am out of hospital and actually looking pretty good there is an assumption that all is perfect. It almost is but not quite, not yet at any rate.......

Till the next time
Mx