The thing that I find truly striking about
other patients histories here on the forum is the boom and bust cylical nature of the disease. It seems to me particularly pronounced, because most people seem to get worse over time, despite the expensive, dangerous, modern drugs regimes they are on. (
I'm not saying that this impression is always correct - but that is the overall impression I get, because most cases seem to be like that.)
By comparison, my health has seemed to be much more of a gentle slide, with very, very occasional speedups of more acute bouts of symptoms. I have had no surgery, other than for appendicitis which almost certainly was Crohn's related. The only time I was ever really ill, I was on Asacol, methotrexate (I think), steroids, and eventually only Cortifoam seemed to do any good - all the others actively made me more ill. This was a straightforward cause and effect relationship; take drug, score higher on all measures of illness activity. Stop drug, reduce score on all indicators. It is not rocket science. As I was messing about
with dosages for over a year, I had plenty of time to notice all the variables, and see what was making the difference. Like I say, eventually I got steroid enemas, and like magic the problems disappeared.
I have been without medications for at least ten years now, if you do not count antidepressants like Prozac. I do, because although Prozac did not eliminate my stomach pains, it certainly toned them down; like the probiotics I currently take, it didn't cure by any means, it merely turned down the boiling pan to a gentle simmer.
I definitely have periods of enhanced inflammatory activity, and I manage these by being very careful to not eat the foods that trigger or enhance inflammation, trying to keep my electrolyte balance good and vitamin intake high, and taking probiotics. The illness doesn't ever go away, but it subsides, and I am left with what seems to be better health in between the bouts of ill health, than most Crohnies here have. My worst day for trips to the toilet for example is as good as many people ever seem to get - anything over half a dozen trips, I count pretty ill. Of course, many folk here have the energy to hold down jobs - I do not, I can only marvel at their tenacity and guts ! (Pardon the pun...
)
And whenever the docs shove a camera up where the sun doesn't shine, they tell me they see no inflammation, even when I can feel it, and am passing blood. They ignore problems with my kidneys, aching joints, skin problems, eye problems, possible all bladder problems etc, when I report them - extraintestinal symptoms are not their field, so these go unremarked and untreated.
So, I do with "no drugs", using basically diet and graduated exercise - am mildly ill all the time - get more severely ill sometimes for no obvious reason that I can ever see - and I am never properly fully healthy.
I am inclined to think that this is pretty much the natural course of this illness, and frankly I would expect progressive damage; judging by my levels of fatigue until recently, anyway.
The question in my mind is not, does going without drugs make you more ill ? There seems to be nothing that stops you from being severely ill if the bug or whatever decides to give you a bad time, and nothing that stops progressive damage by the disease. The question in my mind is, how often do the intensive treatment programmes end with all the drastical surgical procedures that have been mentioned here, as opposed to the no drug regime programmes ?
I'd guess it is neck and neck, simply because the biggest factor in disease progression is what strain of MAP or whatever causative factor you have. I think I am lucky to have a mild strain that manifests itself with mainly extraintestinal signs, and others more usually have an aggressively virulent strain that works more on the guts.
I wouldn't ever rule out taking medications, I know they have worked for me in the past ( a very few) - but until the scientific studies manage to get a handle on why different people react differently, all the studies that lump all Crohnies together when judging outcomes are really worthless. The only science I am interested in is how do people with a disease pattern like mine perform under different circumstances, and so far no-one seems to be asking that.
All clear as mud, innit !
