Enema Day (And A Blog Webpage Begins) by Cort Johnson

It was in the middle of my coffee enema that I decided to create a BLOG page at CFS Phoenix and why not? It’s after my coffee enemas, after all, that I feel most creative, most inspired, most intact mentally…it is really only during these times that I feel clear enough to look ahead and plan out my days, when I come up with projects rather than get buried beneath the events of the day.

A few days ago, as I lay there on the bathroom floor, coffee coursing through my colon, I thought ‘Blog! What a great idea! The Tell Your Story section didn’t work out – only one other story in two years - pathetic! but what about a blog? Blogs are shorter, people can describe their day to day issues  and thoughts, they're manageable and spontaneous and they're not long....in short, they're perfectly suited to brain fried, burnt out CFS patients who struggle to make sense of news article let alone a long story.

Besides if any disease cries out for communication it is CFS, a disease misunderstood by the general public, by most doctor's and probably by a lot of CFS patients. Its so isolating as well; I'll bet that most CFS patients don't know anyone else with CFS 'offline', I don't! Nor is there much discussion of the day to day problems, frustrations and fears as well as hopes and expectations or even ways of managing the illness on  the web. At least with regard to the online groups I  belong to much of the  emotional content is missing; people are focused, rightly enough, on getting well but there's an entire spectrum of the CFS experience that's missing. Athough CFS saps everyone’s energy it also really makes them upset – in particular it makes me mad, very mad – there’s a lot of angst there and a blog page could be a good way to let it out.

Besides CFS/MCS/FMS patients are all so 'rich' in their problems, so diverse in their complications, so varied in their strange manifestations that this disease really lends itself to communication. Nobody knows how to deal with a disease of this magnitude, nobody is prepared for the loss of health, job, career, relationships, etc. This is a disease that people 'need' to communicate about. I could see a books worth of short essays on  CFS; poignant, hard hitting, diverse...everyone with a different story, people connecting... I could see CFS Phoenix being the center of the CFS blog world, 'non-CFSers' checking it out to see what's really going in CFS, I  could see Oprah, Letterman....OK I was flying a bit too high. Still I thought, massive amounts of caffeine permeating my cells, this could be good, this could be really good.

(The Blog page worked a few months and then fizzled out as almost all the bloggers lost interest)

Yes I love my enema days. They do not come often; at the most once every couple of weeks, usually now every couple of months. I used to do them weekly but they were too successful for me – they raised my energy levels too high – and my 'reaction' set in and I had to scale them way back, but that's for another blog.

Oddly enough given the good reaction from the coffee enemas I’m always a bit tentative about doing them. It must be something about their route of entry. I pick a day but then put them off and put them off and then finally when its starting to get too late – I don’t want to be awake all night! – I throw the organic coffee grounds into the pot and crank it up. When that's done I pop in a CD,  insert tube, lie down on the flow, and raise that enema bag high.

As soon as the coffee hits my colon I can feel my senses start to heighten and my focus sharpen. At times like this I can really HEAR the music.  This time I could hear one hand trolling away on the piano in the background while the other in accompaniment with the orchestra rose and smashed like a wave crashing into the shore – Mozart really was pretty damn good wasn’t he?

Coffee enemas make feel quite peaceful but a little fragile as well, almost like I'm wrapped in a kind of thin cocoon. After I have one I want to be off by myself to contemplate or to listen to music. Sometimes I study CFS - my mind, after all is pretty clear, its working pretty well and I want to take advantage of it. The one thing I don’t want to do is exercise. Several times a week I do go for short walks in the afternoon but not now; this is not that kind of energy boost; this one wants me to use my mind, not my body and this is strange. Before I got CFS I was an avid exerciser and that desire still persists. If a treatment is working well I’ll want to move my muscles, go for a walk, do something physical, but for now exercise is a no no.

What’s going on here? Why such a reaction? Is it the caffeine?  I am supersensitive to caffeine – just a few sips are usually enough to send me flying for hours. This, of course, made me about the wary about them. Would filling me up with roughly a gallon of coffee turn me into a jittery anxious wreck? I thought, yes, it probably would. I really didn’t need that, I’m already anxious and jittery enough as it is.

That didn’t, however, turn out to be the case. At least in the beginning it coffee enema's smooth me out and settle me down. They clear the cobwebs away. Sometimes at the tail end of the experience I feel a little jittery but that's rare. 

It couldn’t be just the caffeine effecting me - even ordinary enemas leave me feeling cleansed and energized, my senses more acute, my brain more engaged. So what could account for such a drastic change? It must be a detoxification reaction. Both Dr. Cheney and Dr. De Meirleir emphasize cleaning up the colon. Dr. Cheney says it’s the most toxic organ in the body. I think he must be right.

A Laymen’s Musings - The hypersensitivity phenomenon in CFS is so intriguing. Why do I only need a few sips of coffee to get me going? Why do CFS patients react so dramatically to so many things? This seems almost like a signature problem for CFS but is rarely talked about by researchers and even more rarely studied. I don’t think I’ve ever seen it referred to in the scientific literature and I’ve read hundreds of papers on CFS. It’s apparently too weird for the research community to get a handle on but I would think, given its uniqueness, it would be a very fruitful area of research.

There is some evidence it come from the brain. Some researchers think another type of hypersensitvity reaction, MCS, is due to nerves in the olfactory lobes going crazy when they are exposed to volatile chemicals. A somewhat similar kind of ‘kindling’ may also occur during epileptic fits, and Chaudhuri and Behan have demonstrated a good degree of symptom overlap between CFS and migraine suffers, who as we know become hypersensitive not to drugs but to light, sounds, etc.  Chaudhuri and Behan think we have a nervous system channelopathy or ion channel dysfunction. Ion channels play key roles in both nervous system functioning and muscle activity. A problem with ion channel functioning could cause the nerves to respond abnormally to stimuli. Chaudhuri and Behan have, unfortunately, received almost no funding to pursue this avenue of research but recent studies have suggested that a channelopathy may be occurring in CFS.  Still we're a long, long way from figuring the hypersensitivity thing out and but I don't think we'll figure out CFS until we figure out why these strange problems occur.

Until then I still have my enema days, as  rare as they are - they make life so much more interesting.

(2/21/06)