Ileostomy problems

As happened when I had my first ileostomy, I’m starting to run into some problems, and sadly they’re getting progressively more intrusive.

The first issue to raise it’s head was the classic problem of the ileostomy herniating. Because of the way a loop ileostomy is formed, there is quite a large hole made in the abdomen. This forms a real weak point, with the result that about 50% of them herniate. I managed to draw that short straw, though not as badly as it could have been.

Unfortunately, other than wearing a (very uncomfortable) corset-like arrangement, there’s nothing to be done about it until the ileostomy gets taken down. So for now I have to just live with it. The end result is I have gained a rather lop-sided pot-belly, and it gets distinctly uncomfortable from late afternoon onwards.

Next up were the chemical burns. These form because of the high levels of enzymes present in the small intestine. Normally these get neutralised by the time they’ve worked through the large intestine, but of course in my case, that’s bypassed. The result is whenever I cut the hole in the flange of the bag a little bit too big, my skin gets exposed to my bowel contents, and gets burned. There are some barrier creams to help prevent this, but they tend to stop the bags sticking too, which leads to an interesting dilemma. Given the issues I’ve had with the bags coming loose anyway, I’ve tended to avoid using the barrier creams. But my skin is now very painful. Again, there’s no magic solution to this beyond more very careful cutting, and the judicious use of barrier creams.

And finally, I’ve got some physical trauma to the actual stoma itself. This has been mostly caused by my cutting the hole in the flange of the bags too small, allowing the flange to cut into the stoma. But I’ve also bashed the stoma on furniture from time to time too. It all takes it’s toll. The result is that they stoma (which is really a protruding bit of my small intestine) is now quite battered.

And that means that occasionally it will start bleeding – a lot. The small intestine is very well supplied with blood, to help you digest food. But it also means you can let quite a lot out, quite quickly. Scariest so far was managing to fill a couple of bags with bright scarlet blood in about 30 minutes on a Sunday afternoon. Not funny.

But a good reminder to take more care of myself.

Summer holiday update

It’s been a while since my last update as I’ve been off on three weeks summer holiday; a mix of my usual fortnights break, and an extra week from the backlog of vacation that was accrued while I was on long term sick leave last year. The poor August weather here was a bit of a blow, and prevented us from doing some of the family activities that we’d planned, but fortunately we had a week in the south of France with friends, staying in a villa just north of Montpellier. The weather there was 30-35c each day, with glorious sunshine, which was fabulous and more than made up for the poor UK weather during the rest of the holiday.

I’d been worried about how well I’d cope away from home, with changes of routine, different food etc, but in the end there were no major problems. In fact, it does seem that in general things are suddenly starting to improve again. I still have bad days of course, but my current bad days are more like my good days from 6 months ago – which is very positive.

I’m also still experiencing some problems with peripheral neuropathy in my feet & toes, but these days that’s pretty much the only issues I have left. I’m hoping it stays that way, but I do have an uneasy suspicion that come the winter and colder weather, I may find that it spreads to my hands and fingers again. Time will tell.

Recovery from chemotherapy (week 30)

Still no real change to report. The peripheral neuropathy is still the main problem, and mostly only in my feet and toes. I did notice a small amount in my fingers for a week or so, but that faded away as quickly and easily as it had emerged. At this stage I’m not convinced that my feet will actually get any better; my suspicion is that the nerve endings are damaged too badly, and that it’s just something that I’m going to have to put up with.

However, I was talking to an old friend who is a pharmacist, and she recommended that I take some supplements to see if they will help; her recommendation was vitamin B and folic acid. Apparently between them they help with nerve growth. I don’t know how likely it is to help me in practice, but for the price of some multivitamins and folic acid I may as well try it. I’ll report back if I have any success!

Other than that, I continue to feel the cold very badly. At this time of the year it wouldn’t be a problem in normal circumstances, but I went out on one of the sailing club safety RIB’s, and didn’t wear enough layers. Within about 30 minutes all I could feel was the cold. It turned what should have been quite a fun event into a rather miserable one, so in future I’ll ensure I wrap up more warmly!

Reversal recovery (part xx)

It’s been nearly a couple of weeks since I last posted about my recovery, and things have been moving on steadily in that time. Sometimes my progress has been slightly better and sometimes slightly worse, but at least it’s been progress.

The major “happening” in that period has been that I’ve been trying to explore the limits of my endurance and capabilities so that I can (a) set some sensible expectations with the people I’m going to be working with, and (b) make sure I keep within those limits, and don’t do anything too stupid. To do that I set myself a couple of trials, which basically pushed me well beyond my normal limits. In combination with some physical effort helping my family with some decorating, and I’ve seen exactly what will happen if I push too hard too soon; and it’s not fun. It’s basically taken me all of this week to recover.

Suddenly the recommendations of the nice lady from IBM’s Occupational Health department are sounding a lot more sensible, and having seen the result of over-doing it, I am now very motivated to not push too hard too soon, despite my nature!

So after this Easter weekend, it’s back to work. My first meeting is on Tuesday, in Bedfont, where I hope I’ll get to meet many of the people I’ll be working with from now on. Time to make a good impression. 🙂

Recovery from chemotherapy (week 20)

Still no real changes to report. My peripheral neuropathy is the worst remnant of the side effects from my treatment, and it’s largely now confined to my feet and toes. Sadly it still doesn’t seem to have improved much, if at all. I’m still hopeful that this will eventually fade, but there’s no sign of it yet.

I continue to feel the cold very badly, and that seems to be worse when I’m tired, or feeling under the weather for any reason. Still, now the new central heating system is in and running, we’re not generally cold any more!

Recovery from chemotherapy (week 18)

As with my last report, my peripheral neuropathy is still the bugbear. However, I’ve noticed that my fingers are much better than they used to be, and that I don’t seem to struggle (as I used to) when going into the fridge or freezer. Which is good.

Unfortunately there is still very little progress with my feet and toes, which don’t seem to have improved at all. Hopefully, based on the progress with my fingers, I’ll eventually see a similar improvement in my feet and toes. But clearly not yet.

I’d also note that I still feel the cold very badly, but given the recent cold weather, and the failure of our central heating, that’s probably no surprise at all. Roll on the middle of next week when we get our new heating system installed!

Recovery from chemotherapy (week 15)

Sadly, nothing really new to report on this front.

I’m still struggling with my peripheral neuropathy, especially in my feet and toes, which seems to be harder to cope with for some reason. It feels like I’ve got balled-up paper tissues in my shoes; or rather, under my feet, as it feels the same even when I’m not wearing footwear. Most strange, and very irritating. Still, I guess it will either fade, or I’ll eventually get used to it.

I still feel the cold very badly, which given the cold, snowy weather we’ve had recently, has not been much fun. In the end my response was just to turn the heating up, wear a lot more layers, and dream of spring. It wasn’t perfect, but it helped a lot. Of course, I may feel differently about that approach when the gas bill arrives!

This has also persuaded me that in the spring I need to complete the last few major wiring jobs in the loft (some final structured cabling runs, and wiring up an aerial distribution system) so I can get around to finally topping up the loft insulation to the new recommended maximum.

Recovery from chemotherapy (week 12)

Just a very brief catch-up on the chemotherapy side of things again:

As with a month ago, my peripheral neuropathy continues to cause me lots of problems. My fingers, feet and toes continue to all feel numb and uncomfortable. I’ve not noticed any change over the last month, but I’m hoping that it will eventually start to improve at some point, though there is information on the internet that implies that the nerve damage may be permanent, which would be … frustrating.

I continue to feel the cold very badly, and struggle to feel comfortably warm, despite having increased the thermostat settings in the house. I wondered if this might be related to my weight loss, and not having so much “built-in” insulation now, but layering on more clothes doesn’t seem to help, so I suspect it’s more likely to be something associated with my peripheral neuropathy again. It’s annoying, but it’s not the end of the world, and hopefully it will improve when (or if) my peripheral neuropathy improves.

Apart from that, I’m pretty much over the chemotherapy side-effects now. I still have some taste “changes”, where things I used to like are no longer as palatable, and vise-versa, but that’s hardly worth mentioning.

So I guess I’ll just have to see how things progress over the next few months.

Recovery from chemotherapy (week 8)

Recently I’ve been rather caught up in the process of getting my ileostomy reversed, but it occurred to me that I’ve neglected documenting my progress in recovering from my chemotherapy.

My peripheral neuropathy continues to cause me lots of problems. My fingers, feet and toes continue to all feel numb and uncomfortable. Worryingly, I’m tempted to say that the problems in my fingers are actually worse, not better. I now struggle to touch-type at any kind of speed, without making lots of mistakes. Which is very frustrating indeed.

My tiredness feels hugely better. I suspect having a reasonable gap since I last considered this really highlights the change. But it certainly feels like the tiredness that I’m experiencing now is much more related to the lack of sleep that I’m going through with the ileostomy reversal, rather than lingering side-effects from the chemotherapy.

My sense of taste is now working fine, but there are some things that I would have previously described as being some of my favourite foods that just aren’t any more. Weird, but hey, I can live with that.

My problems with dry skin, and all the resulting flaking and peeling have all gone away. I can’t even remember when it went away, but it has. Although it’s no longer a problem, I may continue with the moisturising routine anyway. New age man and all that 🙂

I am still feeling the cold, and find it very difficult to get warm. As per the last post on this topic, I eventually broke down and reprogrammed the house temperatures. And I still don’t ever feel completely warm, despite everyone around me being fine. I’m beginning to suspect that this may actually be something to do with my peripheral neuropathy making my fingers and feet feel cold to me, even though the actual temperatures are perfectly fine.

So, overall, it’s progress!

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!