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More recovery

I’ve realized that I’m in a bit of a recovery trap, between the ileostomy, loperamide (immodium), sleep apnea, caffeine, and methylphenidate / ritalin.

Immodium is very helpful for sleeping through the night. I find I have to manage the intake to keep it regular, using a pillbox or similar. In the past I’ve been in the habit of taking rather a lot, popping a few pills whenever my eye alit on them. Then my pharmacist cautioned me that this was a bad idea, as excessive intake can result in dependence.

So, I decided to stop taking the loperamide. There was a revelation here: I’ve found, over the last few months, that loperamide is at the root of a lot of the worst of my symptoms: muscle aches, toxic fatigue, feeling unable to speak or socialize, and so on.

The curious thing is that I haven’t found any other mention of this reaction through googling (and there’s plenty of literature out there on loperamide and ileostomy management, both papers and Reddit etc.). I don’t know if it’s particular to me and my response to opioids, or if it’s something in the way I’m taking it, or if there’s an interaction with something else which I take. My oncologist advises for taking loperamide, he tells me it’s very safe (and the literature agrees). My psychologist tells me that it’s wise to avoid loperamide, suggesting that there’s a link with dopamine deficiency. My GP is generally of the view that ultimately, one’s personal experience has to be the guide, and if I have observed this link with loperamide, I should trust it.

While I don’t have the quantitative records which I’d like to support this—a symptom diary or similar, which I haven’t managed to sustain despite being advised to on various occasions—the link is well established in my mind. My wife gave me a present of a few days’ retreat at Creacon Wellness Centre, and there I was able to discontinue coffee and immodium, and I felt much better for it. Of course, there I was free of all other pressures, was eating very healthily, and slept from about 10pm to about 9am. each night… but the recovery from loperamide felt very clear.

Going back on loperamide is very risky, and I’ve a tendency to forget this. When the reaction hits (most recently after about 2 weeks regular use), I experience a total shutdown, sleeping during the day, unable to respond to my family, consumed by aches in my limbs, fatigue, and general despair. This entry is essentially to remind me of this, because the temptation to think “I must go back on loperamide, I’ll manage it properly, it’ll help” is strong and recurring.

It’s strong and recurring because without loperamide, I get up 4–5 times a night to empty my pouch. It’s been suggested that I should get used to this, that men have to go the bathroom frequently during the night as they age anyway, and that this should be manageable.

This doesn’t feel realistic to me. This is quite different from stumbling half-asleep to the bathroom and falling back asleep within 5 minutes. With apologies for indelicacy, the output is continuous and palpable. Often I get up to empty, and can feel (and hear) the pouch filling up rapidly again as soon as I get back into bed. As I’m sleeping with a CPAP machine, and tooth-grinding guard, and often an eye-mask (sleep is rather a desperate business at this stage), getting in and out of bed is a bit of a process. Going to the bathroom frequently disturbs the sleep of most of the house. A few nights of this leave me exhausted and desperate for a solution — and loperamide is the standard recourse.

The alternative to loperamide seems to very rigid management of eating — trying to finish consumption by 4pm. This is not at all easy to sustain, considering work schedules, wanting to eat dinner with my family, and social outings. I’ve bought some Huel, which makes this a little easier, but one does get sick of it.

It seems also that the CPAP machine exacerbates the issue, as the full-face mask can lead to swallowing air.

Some level of tiredness can be managed with stimulants. Coffee has been my go-to for years, but I’ve noticed that it can lead to very acute anxiety during the day, and a lot of lying awake thinking dark thoughts during the night. This is even when just drinking one cup in the morning.

Recently I began taking methylphenidate (ritalin), and this is good for shifting early-morning tiredness. I’ve found that for me, it interacts with coffee and makes the anxiety much worse, so I find it important not to combine them (I’ve switched to a good decaf from Imbibe). The Ritalin is to counter symptoms of ADHD, which have become much more problematic than before in the face of sleep deprivation (from the ileostomy, but also other family members waking in the night, a brief experiment with an unfortunately unsuitable dog, anxiety, etc.).

So Ritalin has replaced coffee. I have a few concerns about it. I notice that while it can mask tiredness from sleep deprivation, my cognitive function remains a bit reduced after a bad night. I think that without Ritalin, it was easier & more likely that I would take the occasional catch-up nap during the day, which may have been better over the long term than ~perpetual sleep deprivation. I think that in general, stimulants should be for acute conditions, and a debt mounts as they’re used for chronic conditions. Our family life is quite busy, so it’s not generally feasible to power through the working day and then relax in the evening.

I’ve had a look at the previous recovery entries. These are very long… it’s sort of soothing to let it all out. Last year I was concerned about neuropathy / cold dysethesia. I’ve done a reasonable amount of cold showers, ice-bath plunges, and so on, and I think all that did help. We did a sea swim on New Years’ day, which was great. So there can be progress.

Today (it’s a Sunday), the goal is to have 2000 calories by 4pm (it’s already 10am). At some point I will consider diet options and so on, but the first thing is to manage the timing and see how that might help.

Other things to follow-up: my sleep study suggested restless-leg syndrome, possibly due to low iron (also a factor in dopamine deficiency). And it may be possible to try a nasal CPAP mask, or a sleep-apnea oral appliance, which would be preferable to the full-face mask. And. I’m continuing to try to exercise. It’s hard to sustain weight lifting, but I get a bit of running in. It can only help. Weight loss would be good too. Onward..!

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