Two steps forward … and one step back

I’ve been a bit quiet for the last few days, (a) because I’ve been a bit busy sorting out doctors, practice nurses, doctors appointments, repeat prescriptions etc, and (b) partly because I’ve not been feeling very well.

In the end, I was discharged from hospital on Thursday afternoon of last week, the 22nd. And promptly had to go back into the ward that same evening because of problems with my catheter blocking up with some small blood clots. The nursing staff on the ward flushed out me and the catheter, and sent me home again, and told me to make sure I drank more fluids, which I took great care to do.

And all was well with the world.

Except I was very hot and uncomfortable at night. And then over the weekend I started to experience some pain in the abdomen. And that got worse, until I finally gave in and added some Tramadol to my pain relief list. And the long weekend passed by like that, with me feeling ill, and very hot and sweaty, with a 2C fever. It wasn’t fun, but I felt like I was coping.

Until on Tuesday, when some stitches gave way, and let a lot of unpleasant infection out. So, after a day of running around dealing with doctors, nurses and the hospital, I’m now back on antibiotics, and will be re-admitted to hospital tomorrow afternoon for a procedure under (general) anaesthetic to flush out the infection, and probably install a new surgical drain. In all likelihood this will mean that I’ll get to spend a few more days in hospital, which was definitely not the plan at this stage of the game.

All very frustrating.

No place like home

Well, first thing to report was another very poor nights sleep. The reduction in IV fluid flow didn’t really help with my discomfort or increased heart rate at all, and as the evening progressed I ended up in progressively more and more discomfort, with an increasingly bloated tummy.

This brought on thoughts of all the terrible problems I experienced during my original cancer operation where I suffered from ilius, and ended up needing a naso-gastric tube fitting: not an experience I ever want to repeat.

And so my stress levels rose, and my heart rate continued to climb, continuing to worry my nurses, who consulted their bible of drug interactions looking for possible explanations for my problems.

What they came up with was a linkage between the use of ibuprofen on an empty stomach (I’ve not been eating much recently, remember) and problems with gastric pain, so their solution was to simply revert me from the ibuprofen back onto IV tramadol again. And while they were at it, they put me back on IV paracetamol too.

So I spent another night trying to force a lot of fluids through a very small cannula into a vein that repeatedly stopped flowing anything at all. Very frustrating, and at times decidedly uncomfortable too.

In the meantime, the real root cause of the problem was revealed to be … trapped wind in my bowel. Once this was released (with suitably childish sound effects!) all my discomfort went away, my heart rate fell to normal, and all I was left with was a night of unnecessary IV problems. Oh well, best of intentions etc etc.

So this morning my consultant went through all my results again, and declared himself happy with my progress. He decided to take me off my antibiotics, as after 5 days the risk of infection is low, and they interfere with normal bowel function, possibly slowing my recovery. He also decided that we should go ahead and remove the semi-functioning cannula, and move me onto oral medicines and self management of my diet and hydration. Which was great news.

So this afternoon I had my last cannula removed.

I also met up with the stoma care nurse, who examined my new stoma, and talked me through the various management options that are open to me, and how the colostomy will differ from my old ileostomy. I’m general it’s all good news (as I already knew) but unfortunately I still face several weeks before everything will finally settle down into that state, which may get rather tedious.

They have also fitted me with a rather odd contraption that allows me to strap my catheter bag to my thigh. The good news is that this means I have one less thing to carry around the hospital with me, and means I can be much more mobile. Since I will have to keep my catheter in place for the next couple of weeks (at a minimum) while my re-implanted ureter repairs, this also gives me a possible way to continue my recovery at home rather than in hospital. But it does feel very, very, weird.

However, the summary is that if I can maintain decent hydration, and get rid of my last drain, there should be no reason why I couldn’t actually be released home this week. Which has to be a goal to aim for, because no matter how good the care, or how nice the people, there really is no place like home…

Monday’s child is fair of face…

Not such a good night’s sleep last night. This was largely driven by the fact that even with my new “consultant installed” cannula, we had terrible trouble flowing the IV drugs into me. Nothing wrong with the cannula; just a reflection of the state of my veins, which would now give your average heroin junkie a bad run for his money!

The nurse who was looking after me for most of the night ended up running all the drugs in very slowly, which meant we were constantly changing IV bags through the night, leaving very little time for continuous sleep. I also managed to somehow end up with backache, which didn’t help matters. All in all, it seemed like a very long night, though the sunrise over Portsmouth that concluded it was a joy to behold.

Today however, my major goal is to start weening myself off my IV lines, so I decided I ought to start eating and drinking at least something at each meal again. Breakfasts contribution was some very milky porridge, which turned out to be delicious, and coincided with my morning visit from my consultant, who also approved.

He is still happy with my progress, but also wants to see me moving off the IV lines. To help with that he has changed the majority of my medicine to their oral versions, and added some Ibuprofen to the mix to hopefully replace the Tramadol IV. He also ordered the removal of one of the drains that I’ve been dragging around, and I decided to completely give up the Morphine PCA too.

So shortly after he left the nice nursing staff removed the appropriate drain, which, as it was a very deep seated drain in my abdomen, felt very peculiar indeed. My Morphine PCA was also taken away, and rather than facing lots of IV bags, I now have a few tablets to regularly take. Much easier.

My anesthetist called by again to check on me, and after a pleasant chat we decided that there was nothing more for him to do for me.

My parents then arrived for a visit (always nice) and declared that I looked amazingly well, hence the title of this post. We had a great chat for an hour or so before the physiotherapist interrupted us to tell me that they were happy with my weekend walk around the ward, and that I just needed to keep doing what I was doing to continue to make a satisfactory recovery.

Lunch was soup and macaroni cheese followed by yogurt. The soup and yoghurt was good; I decided I wasn’t hungry enough to want to try to eat the macaroni cheese, which didn’t seem to have survived the cooking process!

Then this afternoon I got a ride down to the phlebotomists to draw some more blood for analysis, and since then have largely been snoozing, before being woken up by the arrival of dinner (mushroom soup, a bread roll, yoghurt) and my consultant again.

The one fly in the ointment today is that my heart rate seems quite high – high enough that the nursing staff are a little concerned. However my consultant feels it’s likely to be a result of water retention brought on by the constant supply of IV fluids and my starting to also drink a little more for myself; he’s reduced the IV fluids for me. Let’s hope that solves it, and that I get a better nights sleep tonight!

Still in the land of the living!

It’s now Sunday, and I suspect a lot of people are wondering what has happened to me, and how I’m getting on.

The answer is that the operation went ahead as planned, though as usual I spent a lot longer in the operating theatre than expected; that started with the anaesthetist having a 30 minute battle to position the epidural in my spine, and my surgeon still reckons I then spent about 12 hours under anaesthetic after that. The good news is that everything went to plan, with my surgeon able to remove very little of my colon, giving me the best possible chance of a “good” colostomy outcome, and the flexibility to provide me with what we hope will be quite an unobtrusive siting of the actual stoma.

My urologist apparently spent a lot of time dissecting the remains of my left ureter, which was completely encased in scar tissue, and kinked at the point where it entered the bladder, causing the blockage problems. That kink has now been removed, and the ureter re-implanted into my bladder again.

The difficulties that dragged out the length of the operation seem to all revolve around the various tissues within my body cavity adhering to themselves after all my previous surgeries. This meant the surgeons had to dissect most of my innards before they could repair them all, adding greatly to the length of the operation.

At the end of the operation on Wednesday night I was moved straight to ITU, and don’t really remember very much of that experience; I do remember it being hot and noisy, and people coming and going, but that’s all. However, I was apparently still able to hold a perfectly lucid conversation on the telephone with my wife that I don’t remember taking place. Go figure.

Through the night I became more aware of the people around me, and the care that I was getting; the block from my epidural kept moving, so the nurses were constantly adjusting me and my medication to keep the block over my wounds, and monitoring my health. It turns out that this isn’t normal, and in the end on Thursday morning my epidural failed completely, which was not fun, as I went from total pain block to none fairly quickly. My anesthetist tried to restore the epidural, but that didn’t work, at which point it was then a case of getting the relevant replacement drugs (Tramadol and Paracetamol IV lines and a Morphine PCA) written up on my prescription and administered to me.

Because of the problems with stabilising my pain relief I was then kept over in ITU for an extra night, before finally being released to my room up in the private patients unit late on Friday afternoon. The shock for me was having to transfer from the ITU bed to a normal ward bed; they were only 6 feet apart, but it felt like a mile, and took me literally minutes to do.

Friday night I didn’t get much sleep – a combination of headache and sickness from the new cocktail of drugs I was receiving – so I wasn’t feeling on top form during Saturday. But visits from family helped with my spirits, and according to my consultant, apart from the problems with my pain relief, I was making very good progress indeed. Unfortunately that was countered when the first of my cannulas stopped working and had to be removed. This increased the strain on the other, which was nearing the end of its 3 day life anyway, so one of the specialist nurses installed a replacement cannula for the one that had to be removed. Unfortunately, this new cannula really didn’t seem to flow very well.

However, I still managed to get a really good night’s sleep on Saturday night, and for the first time managed to get out of bed on my own (well, perhaps with just a little help!) and into a chair where I could get washed, which felt like a small victory.

Unfortunately my other original cannula then also failed, closely followed by the poorly performing replacement cannula, so they both had to be removed, along with the now unused arterial line. This left me remarkably free of tubes, which was very liberating, but also problematic, as the nursing staff are not allowed to insert cannulas unless they have undertaken specialist training which most of them are still undertaking. Fortunately my consultant called in to see me at just the right moment and was able to oblige us by re-cannulating me!

Overall I am still making good progress, but need to start to ween myself off my IV lines, and in particular off the saline fluids that are maintaining my hydration, and start eating and drinking for myself. Getting off the IV drugs and onto oral equivalents will also help in terms of reduced side effects and a simpler drug regime (my veins flow so slowly that it takes an eternity to administer the drugs by IV).

More tomorrow!