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Lakeshore
An author of no particular popularity

Jay Lake
Date: 2011-09-18 09:13
Subject: [cancer] A very bad couple of days
Security: Public
Tags:cancer, health, personal

Yesterday and last night were as awful in their way as the violent lower GI disturbances of Friday. Today (Sunday) isn’t promising to be a whole lot better, though things are a bit low key so far, so maybe I am being pessimistic.

On the plus side, H— took me and [info]the_child to the circus yesterday here in town. That was fun, in a sort of cultural-experience-I-don’t-need-to-repeat kind of way. It would have been more fun if I could have teleported from Nuevo Rancho Lake into my seat at Rose Garden and back again, as the logistics of getting in and out with 10,000 of my closest friends and their tiny children were a bit daunting. This was a small touring subset of the big circus, mostly animal acts and acrobats. Always interesting to see people pushing the limits of human achievement. And really, who knew you could train dromedaries so well?

As for the GI stuff, a few details for them what wants it.

Under cut for medical and digestive TMI

About midnight Thursday night/Friday morning, I started experiencing overactive bowel movements accompanied by very severe gas. Stool was still firm, so it wasn’t really diarrhea, but subjectively the experience wasn’t much different. By midmorning Friday I’d experience eight or ten increasingly violent, copiously productive bowel movements, and my rectum and anus were quite sore. While I’ve had innumerable bouts of diarrhea and overproductive bowels on my two chemo regimens, this was about the worst I’d ever experienced for intensity, frequency and pain.

Violent lower GI disturbance is a known side effect of my current chemotherapy regimen, FOLFIRI. So far I’ve been fairly lucky. What my oncologist wants me to do in these situations is take Imodium to shut it down, in order to rest my bowels and deter the fluid loss that inevitably accompanies these events. The problem is that ever since my colon surgery, I overreact dreadfully to any constipating agent such as opiates or Imodium. It’s basically a concrete enema for me, which causes a whole different roster of problems. So normally I just tolerate the bowel activity, take a lot of fluids and ride it out.

What was going on Friday morning was so overwhelming I couldn’t think straight or accomplish much of anything. So I took the Imodium.

It had no effect.

So took more Imodium.

By mid-Friday afternoon, I was shut down completely.

Mind you, all this does is shut down the passing of stool. It doesn’t shut down whatever’s creating the problem further up in my digestive system. In this case, chemo-induced distress, probably exacerbated by excessive lactose consumption. (Chemotherapy seems to make me transiently lactose-intolerant.)

I got through Friday evening in fairly good order, but by overnight and Saturday morning I was experiencing persistent bowel cramping, as a deep, stabbing sensation that pretty much overwhelmed me every time it happened, and as a distracting dull ache and bloat the rest of the time. My GI was still producing gas and stool, it just had nowhere to go. By midday Saturday this was so bad all I could do was lie flat in my recliner and rest with a heating pad on my abdomen in an attempt to relax the muscles involved. (Luckily I had gotten my writing time in Saturday morning before it really grew out of control.)

We already had paid for the circus tickets, so I went, but was balanced between deep discomfort and significant pain the entire time. That made it difficult to enjoy the show. I came home and endured a great deal more of the stabbing pain, until about nine o’clock, twenty-seven hours after I’d taken the Imodium, things opened back up again.

I was up five times in the night with the same symptoms as Friday morning.

So my choices are sleeplessness, overwhelming distraction, and butt pain, along with hours on the toilet; or sleeplessness, overwhelming distraction, and abdominal pain, along with hours lying flat in my easy chair. If I shut it off with Imodium, I suffer longer and I still have to experience the diarhhea later.

I can probably ameliorate this a bit with diet. Eating very simply and probiotically, whole foods, fiber and no lactose, would slow things down a little. But the problem isn’t bad food, or a specific food reaction. The problem is the chemotherapy attacking my digestive tract. All the while I’m dealing with food craving and aversions at the consumption end which don’t align at all with the causes and treatments for the bowel distress.

This makes me feel very trapped. Trapped on my toilet, trapped by my bowels, trapped by the pain and distress. I’ve commented before that I’d rather have bowel distress than nausea, because at least I can still think and function with bowel distress. I believe I’ve finally hit the limits of that.

I hope like hell I don’t have to go through increasingly worse versions of this over the next six chemo sessions. It’s overwhelming, and deeply discouraging.

Originally published at jlake.com. You can comment here or there.

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Autopope
User: autopope
Date: 2011-09-18 16:55 (UTC)
Subject: (no subject)
Suggestion -- have you tried chamomile tea for the lower gut pains/cramps? Chamomile contains a bunch of flavonoids that are smooth muscle relaxants. (It's not available in a prescription formulation because (a) the active dose is quite high, (b) the effect doesn't last very long, and (c) it's ancient and probably impossible to patent; plus (d) it's easier to make an active derivative of an alkaloid than a flavonoid). I've found it very useful when having bowel spasms. Dose is to brew up a cup of chamomile tea, drink, then repeat as necessary. For severe cramps it may take 3-5 tea bags' worth of tea.

Note that this won't stop the diarrhea and wind, and it's not a pain killer. However it may make the dull ache subside somewhat.
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Jay Lake
User: jaylake
Date: 2011-09-18 16:59 (UTC)
Subject: (no subject)
In fact, I should go make some now.
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anghara
User: anghara
Date: 2011-09-18 18:00 (UTC)
Subject: (no subject)
I would actually suggest peppermint tea. My family swears by peppermint tea whenever any gut disturbances begin to make themselves unpleasantly intrusive. It kind of settles the stomach - I am not entirely certain what effect it would have on your own symptoms, Jay, but SERIOUSLY, try some. if it doesn't entirely cure the ills in question I guarantee it will HELP.

And I'm sorry you're in this situation at all, my friend.
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anghara
User: anghara
Date: 2011-09-18 18:01 (UTC)
Subject: (no subject)
Oh, PS - the mint tea - drink without additives. No sweetener, no nothing. Just plain peppermint tea. Repeat as necessary. Hope it helps.
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Autopope
User: autopope
Date: 2011-09-18 19:10 (UTC)
Subject: (no subject)
There is, in my kitchen cupboard, an emergency box of peppermint and chamomile tea bags for just this situation ...
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desperance
User: desperance
Date: 2011-09-18 17:18 (UTC)
Subject: (no subject)
Jay, hon - I have nothing useful to offer. Just to say, I read all of this, as I do of all your posts, and I am thinking of you from afar.
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User: twinkelbelpeach
Date: 2011-09-18 18:20 (UTC)
Subject: (no subject)
Sorry that you're going through any of this, and after having a mild case of food poisoning a few weeks back, I really do sympathize. I just want to second the recommendation of Peppermint tea. I find a couple cups of it really helps with constipation.
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cathshaffer
User: cathshaffer
Date: 2011-09-18 19:52 (UTC)
Subject: (no subject)
This all sounds awful. I'm so sorry you have to suffer through this. Since people are making suggestions, I'll add "wind removing pose." You can google it to find out how to do it. It's very simple and not strenuous. You basically lay on your back and pull your knees up in sequence, right knee first, then left, then both knees. Optimally, you'd do two or more in a row, and rest quietly on your back in between. The movement massages the bowels and helps...move things along. You can do it as many times as you want or need, and it helps with all of the above. I hope this is just an unusually bad episode, and not the beginning of a new trend. :-(
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mectech
User: mectech
Date: 2011-09-18 23:02 (UTC)
Subject: (no subject)
yeowch! I have nothing to offer but my sincerest sympathies. that sounds decidedly unpleasant.
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Ruthanne Reid
User: ruthannereid
Date: 2011-09-19 22:35 (UTC)
Subject: (no subject)
Definitely not-fun, and especially hard when you're trying to enjoy something for someone else.

In the end, it matters that you went, and I know she'll appreciate it for the rest of her life.
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Rick Moen
User: rinolj
Date: 2011-09-20 01:49 (UTC)
Subject: (no subject)
Loperamide ('Imodium') is an extremely useful tool if you understand what it is and does. It's an extremely rare example of an opiate that doesn't pass the blood-brain barrier (unless you blitz yourself using extremely high doses, in which case you'll have Happy Fun Psychoactive Effects). Therefore, it has no CNS effect, which odd datum explains why, despite being a real, honest-to-Cthulhu opiate, it's not embargoed by the War on Some Drugs.

When you take Loperamide, it has a severe suppressive effect on the opiod recepters of the large intestine, relaxing the smooth (involuntary) muscles of the intestinal wall, and thereby thereby slows down the activity of your large intestine and colon. Any food (or other things, such as, say, chemotherapy drugs taken orally) in your lower digestive tract therefore takes a great deal longer transiting through there.

Whether this is A Good Thing or not depends on whether you want those digestive contents to stick around, and what the root cause is. Let's say the root cause of why patient is undergoing the Tijuana Trots is external beam radiotherapy of a cancer in or near the lower GI. In that case, loperamide is very much the patient's friend, slowing down digestion and letting him/her venture from the small room.

On the other hand, if the root cause is, say, food poisoning or chemo, then loperamide will keep the irritant in the lower GI, overriding the body's efforts to speed the irritant through and out. The patient's understandable desire to end the diarrhoea has to also be weighed against a conficting objective to 'Get this stuff out of me'. Since in your case, you said the chemo was attacking your digestive tract, loperamide would seem to have been perhaps a tool to solve the wrong problem.

Best Regards,
Rick Moen
rick@linuxmafia.com
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Jay Lake
User: jaylake
Date: 2011-09-20 19:07 (UTC)
Subject: (no subject)
Thank you. This was extremely helpful. I'm about to see my oncologist to discuss this exact issue.
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