OK this sucks
Part of having Crohn's is periodically dealing with a huge number of mouth ulcers forming all over the softer tissues in your mouth (tongue, connective tissue, inside your lips) overnight while you're sleeping. They're INCREDIBLY painful to the touch, even just closing your mouth hurts.
EATING is nearly impossible.
So there's pros and cons, ha ha ha.
Seriously this bites. It usually lasts 2 or 3 days once it starts, too.
April 26th, 2007 11:53am
what are you reading for?
April 26th, 2007 12:03pm
You can only eat so much Benzocaine in your life.
April 26th, 2007 12:12pm
Damn, sorry to hear that. Another Crohn's person here. Had a hemoglobin of 3.6 during my worst attack. Just starting to see a dr again and voyaging through the diff meds. Good luck.
April 26th, 2007 12:23pm
I have no idea what my counts are like. I don't generally rely on them for any sort of barometer, as they're pretty useless all told. The best indicator of how my Crohn's is doing is what comes out after I put stuff in, and how tight the knots in my abdomen are.
April 26th, 2007 12:30pm
I'm allergic to all of the meds, which is fun. Asacol and Colazal make my skin peel off like a leper's, and that's currently what I'm on because 6mp and Imuran make my pancreas kick into overdrive and try to dissolve my own innards.
April 26th, 2007 12:31pm
I haven't tried Remicade yet, and don't plan to, because if you have an adverse reaction to Remicade you pretty much just die.
April 26th, 2007 12:32pm
Wow, I've been pretty lucky that my main symptom is being anemic (hemoglobin of 9 instead of normal ppl's 13-15). 3.6 means my heart should have given up, according to my dr at the time. Currently transitioning onto imuran so i can drop pentasa.
April 26th, 2007 12:38pm
Oh wow. No I haven't had trouble with anemia which is why I guess I ignore my counts. My daughter has been anemic only once, which is a miracle considering that she has Crohn's coupled with a blood-clotting disorder called ITP.
Pentasa does hardly anything for me except to make my skin flake off. It makes my daughter bleed uncontrollably. One or two doses is enough to hospitalize her. She's on 6mp. A few doses of 6mp or Imuran is enough to hospitalize ME.
Is your Crohn's mostly in the colon, or have you got small intestine troubles too? To get anemic you probably have a lot more inflammation than I do, I would guess. Mine's all concentrated in one area, which is bad enough.
Come to think of it, I may have been anemic from time to time when I've had really bad episodes, but I've generally avoided doctors as their guesswork tends to make things worse.
April 26th, 2007 12:41pm
It's pretty much entirely small intestine inflammation. Colon is pretty clean actually, according to the last colonoscopy. Been on imuran before in college after my attack and got my hemoglobin up to 16, so I'm looking forward to results hopefully like that. I wish your daughter luck, a friend of my mom's has a 10year old boy who just had to have his colon removed and use a colostomy bag for the rest of his life. I can't even imagine. At least I had a mostly normal, if nerdy and out of shape, childhood.
April 26th, 2007 12:53pm
I've had the word "colostomy" floated to me a half dozen times, but I've never allowed it and I'm not dead yet. Years ago the doctors were WAY too quick to try to "solve" Colitis/Crohn's by just cutting it all out.
April 26th, 2007 12:55pm
Small intestine Crohn's has got to be worse than mine, I imagine. It just seems to me like there's WAY more potential for fistulae and pain and all sorts of shit there. I'm sorry to hear that about your condition. I have no idea who you are, but good luck! :-)
April 26th, 2007 1:02pm
Thanks. Like I said, I've been lucky enough to be pretty much symptom free, at least after I started meds way back when. Was even ok when I went off meds the last couple years but some recent stress made the anemia more severe, no pain though, knock on wood.
BTW, I'm from JoS, but as I do here, I mostly lurk/read there. They've kinda fallen off in quality. Not that CoT is shakespeare, but there is a variety (like ?off had back in the day). There's no real reason for you to know me.
April 26th, 2007 1:16pm
Yep. CoT sucks, JoS sucks, and Blah sucks. ?off was a phenomenon that comes and goes. You can't bottle it. Some day a bunch of jerks from here will rise up and form their own forum and it'll be good, for a few months, and then it will suck again. Such is life.
I managed to be symptom free for about 12 years without medication. Imagine my surprise when I discovered that I "still" had Crohn's around age 24 or so... :-P
April 26th, 2007 1:19pm
why do people visit forums that suck?
what are you reading for?
April 26th, 2007 1:28pm
Lack of an alternative? I'm at work. My work is not challenging and does not engage me. Here, I can have some light conversation in between reading interesting articles or working on some mildly boring personal projects.
If I had higher quality conversation available, I'd go for it, but I don't, so here I am.
April 26th, 2007 1:29pm
Quality comes and goes in waves. 90% of everything sucks (to paraphrase Sturgeon's law). So you can avoid everything sucky and avoid 100%, or you can accept the 90% while waiting for the 10% to come around again.
That's why I'm here, after all. I'm very patient.
April 26th, 2007 1:59pm
Yeah I agree 90% of everything sucks but I get quite a laugh out of this place
Thats shit that your work doesn't engange you but I suppose 90% of jobs are shit to, oh well
what are you reading for?
April 26th, 2007 2:14pm