Slight setback

It turns out that my digestive system is now working in overdrive, which is keeping me closely tied to the nearest toilet. My surgeon has put me back onto (a lower dose of) loperamide to calm things down a little, and decided to keep me in the hospital today, and reassess my condition this evening.

He’s still hopeful that I’ll either go home this evening or tomorrow morning, as this is not an abnormal situation; it’s very common in fact, which is good to know.

Naturally I’m feeling rather wrung out by the experience, but hopefully we’ll get this under control and me back home on our original plan, as I really don’t want to have to stay in over the weekend unless there is absolutely no other option open to me.

Otherwise things seem to have gone very well; I have practically no pain from the wound site, which is already starting to show signs of healing, and apart from the previously mentioned problem, I’m feeling really well – which has to be good news!

Update: I’m going to be kept in overnight tonight, and possibly through the day tomorrow. Nothing terribly serious, I’m just dehydrated, and my consultant isn’t happy sending me home until I’m both re-hydrated and over the worst of what’s been causing the dehydration. He’s going to run a series of blood tests tomorrow to check my electrolyte levels, and determine when to discharge me on that basis.

So, I’m now quietly sipping water to help with that, and will also be assessed later this evening to decide whether they can help me further by putting me on an IV drip overnight. Since they’d have to recannularise me for that, I’d prefer to do it the natural way, particularly as a needle in the back of my hand isn’t going to make getting to and from the toilet any easier.

But as I’ve said before, I’ll do what I’m told, even if I don’t like it, as I intend to beat this thing.

Reversed, Revisited again

I was woken by my surgeon at 7:25am this morning for another examination, which went well. His advice was to continue with yesterdays approach, eating small amounts of easily digestible food throughout the day, and wait for my digestive system to finish restarting.

Apart from a couple of visits from friends, the day passed pretty slowly, with me reading a book and trying not to get too worried about the apparent lack of progress.

My surgeon visited again around 8:30pm, and did another abdominal examination, and repeated that he’s happy with my progress, and thinks I should plan on being discharged tomorrow (Friday) or Saturday, depending on when (to put it delicately) I first have a bowel motion.

Fortunately, that has now happened, so hopefully I’ll be discharged tomorrow. I’ll know for sure when I see the man tomorrow morning I guess.

At that point I’ll have to find out about mobilising the district nurse to change my dressings, what painkillers I’m going to need to take home with me, and what other aftercare arrangements I need to be aware of. All good fun.

Reversed, Revisited

Yesterday was the final step in my treatment; reversing my ileostomy.

I was admitted to the Spire around 5:30pm, and after L. and I had seen my surgeon and talked through the surgery and it’s possible complications, and then seen the anesthetist, we were already “late” for the 6:30pm theatre appointment. So it was a matter of a quick change into my surgical gown, dressing gown and slippers, before a quick goodbye to L. and walking upstairs to the operating theatre. Once there we went through the usual name & date of birth identification routine, taped up my wedding ring, and I climbed up onto the table and let the anesthetist cannularise me. He then gave me a pre-med and some antiemetics before putting me under.

Surgery started at 7:28pm, and ended with me being moved to the recovery room at 10:40pm where I came around in “my” bed. I vaguely remember talking to the anesthetist for a while, before being wheeled back to my room where L. was waiting for me. She’d already talked to my surgeon, and she passed on all the information to me, though I was so tired and light-headed that I’m not sure how much I actually took in. I do remember her leaving, but nothing else until I woke up at about 2am, feeling uncomfortable and wanting to get out of bed and move around.

One of the nurses helped me out of bed, and got me some painkillers to take the edge off my pain. By which time I was fully awake, so I ended up posting my last blog update, and reading for a couple of hours before going back to bed. Fortunately I woke up again early enough that I could call home and talk to my kids and let them know I was OK before they caught the bus into school.

Since then I’ve seen both my surgeon and anesthetist, who are both happy with my progress. The surgery took longer than expected because there were complications with the removal of the stoma; essentially it had healed more securely to the surrounding tissues than normal, and required a lot more dissection to remove it. As a result I’ve got an additional side incision away from the normal circular incision, which will leave me with something like a tennis racquet shaped scar. The ends of the bowel also needed to be cut back to remove the sections that had become congested with fluid before they could be rejoined. My hernia was also fixed at the same time, though not optimally. In an ideal world a hernia repair uses a surgical mesh to strengthen the abdomen wall, but unfortunately this was not possible because of the possibility of contamination of the wound from the bowel repair; that necessitated an open drain from the wound which the mesh would have prevented. So instead the hernia was repaired with more extensive stitching of the abdomen wall, but unfortunately in some 10% of cases these repairs re-herniate – which would be annoying.

Today has been spent slowly recovering, dozing between small meals of yoghurt and soup, allowing my colon to slowly restart. I also had my dressings changed for the first time, swapping the initial large pressure dressings that had been applied in the operating theatre with a single, smaller, more manageable dressing. This turned out to be really straightforward, except where one of the dressings appeared to have stuck to a stitch, and was excruciatingly painful to remove. Hopefully that will be a one-off experience, with future changes of dressing being painless.

So now it’s simply a matter of waiting for nature to take it’s course; my surgeon tells me that normally takes a couple of days, so hopefully I’m still on track to be discharged on Friday, or possibly Saturday.

Reversed

Well, I managed to walk into the operating theater, climb onto the table and give them my arm. My ileostomy is gone.

Things didn’t go entirely to plan, and the surgery ended up being more complex and taking longer than expected. It was however, completely successful.

I’m currently feeling rather battered and bruised, but on my way to recovery. Will post a fuller update later today after I’ve had some sleep.

Going bagless

Today was (hopefully) the last day with my ileostomy. Tomorrow (or rather, later today) I will have the surgery to reverse my ileostomy, and return my “plumbing” to normal again. Or at any rate, as normal as will be possible – I understand that it’s never going to be exactly the same again.

And I find myself having very mixed feelings about this.

On one level I will be immensely relieved to lose the bag. I’ll gain a huge amount; being able to more easily bathe, go swimming, generally be more active, and lose the discomfort and frustrations of dealing with the bags and the drugs that I currently take to control my ileostomy.

On the other hand, I am really not looking forward to another operation and the associated general anesthetic. I found the whole process profoundly frightening last time. Then I had no choice; this time I suppose I do. I can see that it’s perfectly feasible to live with an ilesotomy for life.

However, for me, at my point in life, the decision is clear – my quality of life will be infinitely better with the reversal. So I just need to get myself through the operation. It’s a simple case of mind over matter – or rather, mind over my emotions. All I need to do is walk down a corridor, lie down on a table, and let them put a needle in my arm. After that, I wake up with the job done.

No sweat. I can do that.

Pre-op assessment

Friday was my pre-op assessment meeting at the Spire hospital. It was interesting mostly because of the contrast to the pre-clerking meeting I had in the NHS. The NHS involved a lot of sitting around, followed by a brief period of frenetic activity to get me through the interview and all the various tests (blood, urine and ECG).

In contrast, the meeting at the Spire was very much more relaxed, with a lot more emphasis on making sure that I was aware of what was happening, what was going to happen, and had an opportunity to ask any questions etc. Once everyone was happy that I was comfortable with the whole process, there was a leisurely set of tests to finish off with. On the surface, very different.

At the end of the day though, they both asked me pretty much identical questions, and did identical tests. The private hospital just has more time (and money!) available for the niceties, if that’s important to you. It’s actually not that important to me, but having elected to get my reversal done privately for speed, the niceties come for free. Fair enough.

Anyway, my blood pressure was excellent (118 over 60), my urine proved I wasn’t diabetic, and that my liver is working well. The ECG proved that (electrically) my heart is in tip-top shape. I even seem to have managed to lose another couple of Kgs – which is nice. I had to provide another three vials of blood (from the other arm), which went off to the Spires’ lab for yet more tests. I’m starting to suspect that there is more of my blood in various testing facilities than there is in me. Still, unless I hear otherwise, I am to assume that all is OK, and that I should turn up for my operation on Tuesday, as agreed.

Which definitely works for me.

Genetics meeting

Today I had a meeting with a nice doctor from the Clinical Genetics Service. I was referred to them by my surgeon when I started asking questions about what caused my cancer, why I’d had it at an abnormally young age, and whether it might have been the result of some genetic factor. In particular, I wanted to understand whether:

1. I might be predisposed to re-occurrences of this or other cancers,
2. my brother might be predisposed to bowel cancer, and
3. my children might be predisposed to bowel cancer.

In the latter cases I also wanted to know how I could get my brother and children identified for early screening programmes.

The result was a raft of forms to fill in, providing the clinical genetics team with my family history and details of any of my ancestors that had had any experience of cancer. Which in my case was easy – as far as I’m aware I’m the first person in my family to have had any sort of cancer.

Todays meeting was fairly quick, probably for the same reason; from my family history it looks unlikely that there is any genetic predisposition to cancer in my family. However, it is possible that I’m the first person in my family to have a genetic predisposition which I could then pass on to my children. So, the main reason for the meeting was to explain this to me, and request that I donate another couple of vials of blood, and agreement for the Genetic Services team to run some additional tests on my tumour.

As best as I could understand it, they are going to run two major tests:

• a test on both my tumour and my blood. If the results are the same then it’s likely that I do have a genetic predisposition to this cancer. If the results differ then the tumour is likely to be the result of a local (environmental?) cellular mutation which then went on to grow into my tumour.
• something related to “micro-satellites” and signs of “stuttering”. I really didn’t understand most of the explanation of this, but gathered that it involves the non-coding sections of my genes that relate to the expression of proteins defined by the coding sections of those genes. But my biology really wasn’t (and isn’t!) up to following the doctors brief explanation.

Fortunately it’s not necessary for me to actually understand all these things; they’ll run their tests and then come back to me with their best answers to my questions, which is what I wanted. Unfortunately that process could take up to six months, which seems like a long time, but I suspect there is quite a lot of work for them to do. Still, six months is perfectly acceptable, as this really isn’t an urgent issue – just an important one!

Recovery from chemotherapy (week 4)

It’s been a hectic week, what with one thing or another, but when I reflect on my side-effects and symptoms, there haven’t been any startling changes to report.

My peripheral neuropathy is feeling worse this week than last, which I suspect is related to the fact that it seems to be quite a bit colder weather this week. My fingers, hands, feet and toes all feel numb and uncomfortable. Still, the problems with my larynx haven’t resurfaced, so at least I don’t have that to worry about. From talking to a colleague who’s now recovered from his chemotherapy, I now know I could have many more months left before the peripheral neuropathy really goes away. Although that’s a bit depressing it also gives me a better idea of what to expect, and at least I know I’m likely to be in for a long haul on this.

My tiredness generally seems to be a little better, though as it’s been a busy week where I’ve burned the candle at both ends, it’s hard to tell for sure. I’m also cutting back on my codeine now, which should also affect my tiredness (positively) so there is a lot in the mix here. Next week is (if anything) going to be even busier, so I wouldn’t be surprised to see me thinking that my tiredness was getting worse, when in actual fact, it’s getting better and I’m just doing a lot more.

My sense of taste is still weird. No change.

My dry skin, and all the resulting flaking and peeling has remained annoyingly pronounced this week; again, I suspect the change to colder weather may have played a part here. I’m back on the “new man” regime of moisturise, moisturise, moisturise.

I am FROZEN. All the time. I just can’t get warm. Admittedly the weather is definitely colder, but even so, despite becoming an expert on layering, I just don’t seem able to get or keep warm; T-shirt, thick overshirt, fleece and ski-jacket, and I’m still shivering. I keep over-riding the programmable thermostat at home too, bumping the house temperature up a couple of degrees to get comfortable. I’m doing it sufficiently regularly that I may just give in and reprogramme the temperatures.

The problems with my ileostomy, hernia and stoma haven’t changed, though fortunately the status of my reversal operation has. I only need to cope with them for another 9 days, and then I’ll be in for the surgery to remove and resolve them. However, in the interim I’m finding dealing with the problems more difficult, simply because I’m now reducing my codeine dose. The consequences are that the output of my ileostomy is rising, and I’m now experiencing more pain from the stoma where it is chafing on my waistbands/belts when previously that pain was controlled by the codeine. Speaking of which, I’ve reduced my codeine dose by 25% over the last week, and will reduce it by another 25% (of the original dose) this week. I’m assuming that when I have the reversal operation I will be taken off the remaining codeine completely, so I really need to reduce it as much as possible before that.

Being forced to go “cold-turkey” on the day of the operation doesn’t sound particularly clever!

Leaky plumbing? Redux

My surgeon called this evening to let me know that he’s happy with the x-rays that were taken as part of my gastrografin enema test. I’m now confirmed for surgery to reverse my ileostomy on the evening of the 17th.

I’ll be called into the hospital for (more!) blood tests and pre-clerking sometime prior to the 17th, then I’ll go into hospital late afternoon on the 17th, and on into theatre around 6:30pm. I should be out of theatre later that evening, and will be kept in for a few days until the doctors are happy that my bowels have correctly restarted.

I’ll then be released home, but probably require a week or two of nursing care to regularly redress the wound, which will be left “open” by the surgeon to aid the healing. Time to fully recover from this procedure is very individual; anywhere from 4 weeks to a year. For most people it seems to be in the two to three months range, but I won’t know how it will be for me until I get there.

Still, it’s really good news – the plan is coming together

Leaky plumbing? Revisited again.

My surgeon called this evening just to let me know where things are with the results of my Gastrografin test. As we expected, the x-rays didn’t get processed in time to make it to the multi-disciplinary diagnostic team meeting on the 20th, and my surgeon, along with most of the rest of the team, was on holiday for the meeting on the 27th. After all, it was half-term, and doctors have families too! So, he’s yet to see my x-rays.

However, he confirmed that I did have an end-to-side anastomosis, which is really good news given the comments from my radiographer (see this post). However, the blind end normally tends to completely fill with contrast agent, which would be very obvious on the x-rays. From what the radiographer said at the time, and what I saw of the x-rays, I’m not sure that that was the situation in this case. So understandably my surgeon wants to review the x-rays himself before committing to a final go/no go decision on the reversal operation.

He’s going to call me on Tuesday afternoon / evening to let me know the outcome of that review, but the good news from my perspective is that he’s sufficiently confident to at least provisionally “book” me for the reversal operation on the 17th of this month. Hooray!

If the join does turn out to be leaking slightly then it will be a case of delaying the operation and monitoring the leak to see if it continues to heal naturally; that could take quite some time. Since we want to get me back to work sooner rather than later, the backup plan is to start reducing my codeine intake now so I can rejoin work with my ileostomy if necessary. I’m hoping to half my intake over the next fortnight, and eliminate it by the end of this month. That ought to be feasible now that I’m no longer on any chemotherapy drugs.

Still, I’m feeling very positive at the moment, and assuming that the reversal operation will go forward as planned. I must admit, it’s strange to see just how excited I’ve become at the prospect of being cut open again!