Howdy.

I am a 58 year old WASA (White Anglo-Saxon Agnostic) from the Midwest, Oklahoma-ish. I have had nut, gut & butt problems for almost forty years now. Originally diagnosed with UC, the diagnosis has changed back and forth from Crohns several times, and in the early 90's I had a gut resection to fix a 180 degree twist in my colon (helped things move easier, but didn't fix the big problems.) Anyway, a steadily increasing dosage of Imodium has kept me functional for the last 30 odd years, along with a handful of other pills, everything from Prednisone to Pentasa, etc., the whole nine yards. You know the drill. (Amazingly, I have bled almost daily for over thirty years; blood seems to ooze through my colon wall or something; the amount of fresh blood I've passed over the years is staggering to me. Once a doctor scratched his head and said I was "weirdly anemic." I just laughed. I've had a low-grade fever for the same amount of time.)

Things settled down in the 2000's and I was able to have an almost normal life for a few years. Then, in 2008 or so I had a stroke, and after my "recovery" (6 years unemployment, almost complete erasure of memories of earlier life, yadda yadda yadda, etc.) something seemed to wake my guts up. My colon became active and angry again, and the last three years have been hell. I realized a few years ago I had anal fistulas due to fecal spotting, and I've had a half-dozen since, though, mysteriously and against the odds they seem to eventually close by themself. I also have peculiar marble-sized nodules (I don't know how else to describe them) that appear, scattered throughout my perineum and near my rectum. These things come and go and occasionally pop and squirt puss everywhere (always at the worst possible time, of course.) Those damn things hurt like hell too, the pressure in them is pretty incredible at times, and it's often a relief when they "pop." I squeezed one once until it popped to get it over with, but I'm not tough enough to ever do that again.

Two years ago I was scheduled for Remicade but at the last minute they put me on Humira, I was on it maybe a year and a half but it seemed to do absolutely nothing for me except remove a few hundred bucks from my wallet every month. After almost forty years of good doctors, quacks, sincere but confused doctors and doctors who are more concerned about the quality of my insurance I have little faith left in the medical establishment. Now that I have insurance again I'm not sure if I'll even bother. After forty years of this disease I welcome the embrace of the angel of death; they told me in '79 that the average life expectancy after a Crohn's diagnosis was twenty years, but they even got that wrong in my case. Sorry if that sounds melodramatic.

Anyway, that's my story, sorry if it seems whiny or "pity-full," but you've gotta be used to stories like that on a site like this. I accidentally discovered this site tonight, and thought I'd put my two cents in. Anyone who has suffered through this god-forsaken disease has my sympathies. As I mentioned I am employed again after a five month hiatus (nobody wants to hire old farts with no education, I was a computer programmer for 26 years but I never had the paper to prove it and when I had a stroke they fired me. Oh, boo hoo!) so I actually have insurance again. I feel like at times, and rightfully so with some of the doctors I've seen, but I feel like I know more about this disease (or "suite" of diseases) than many doctors I've seen. I'm not sure if I'm ready to place myself under the care of someone again, considering how little practical gains I've had in the past. I think it's just the nature of the beast.

That's it! I left out a lot of "crappy" parts! If you made it this far, thanks for listening!

russell j.

Welcome to the board and thanks for sharing your story. I have other health issues and totally share your opinion about the medical profession. Sorry that you've had to suffer so much over all of those years.

chachacha wrote:Welcome to the board and thanks for sharing your story. I have other health issues and totally share your opinion about the medical profession. Sorry that you've had to suffer so much over all of those years.

Your kind words are appreciated. There is literally no way to understand this unless you have gone through it also (I'm sure that's true of any major disease, of course.)

Thank you.

russell

Yes, it is very true for many others issues, and not just those on the medical front, I'm sure.

And thank you for introducing me to the term WASA - I guess that I must be one too (white anglo-saxon aetheist).

Something I just thought of; I suppose it's a little Crohn's "anecdote" or something. Suddenly one morning, about twenty-odd years ago, I had this "sore" appear, on my right side below my ribs. I didn't think that much of it, until about three days later when it had gotten large, hurt like hell, and oozed blood. I finally went to my nut, gut & butt doc, and he took one look at it and (in spite of knowing of my Crohn's history) said I'd been bitten by a brown recluse spider. I kept it covered with a large band-aid, and followed his advice (I think they gave me a gamma-globulin shot also) and after a week or so I imagined it was healing. About this time I went to McDonald's, rare for me, and ate a big mac, complete with sesame seeds on the bun. Yep, you guessed it, the next day, in the bandage for the wound on my side there were some sesame seeds. I didn't even know what a fistula was at this time, and this was before the internet and cheap quick info, so I went to the library and educated myself. I never went back to that doctor, either. In a few months the hole healed up, although I still have a depression the size of the tip of my index finger in my side. Crazy, huh? Just another day in the life of a Crohnie, I guess.

russell
AKA BuhTuglia