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The stupidest conversation about Crohn's I have ever had

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Posted 11/27/2012 11:37 PM (GMT 0)
Sorry the Humira isn't working yet....I'm hopeful it will kick in soon for you. I'm not doing well either. I just turned in a stool specimen....I suspect I have c.diff again or some sort of infection...I guess I'm hoping it's an infection, because if it is not, then I don't know what's causing my symptoms. I'm skipping out on my book club tonight with some of my favorite friends....I feel too bloated to get out of my sweatpants and into real clothes, but I think I'm getting depressed too. I'm still going to work and functioning, but isolating myself from anything "optional."
Posted 11/28/2012 12:13 AM (GMT 0)
NCOT, how long have you been on humira? i have a good friend with crohn's that has been on it for over a year now. she takes it every 10 days but she still is in the hospital 2-3 days at a time for abcesses and her frequency is usually 6-10x a day. i think her doctor wants to up it to once a week so she might do that. she controls all of her pain/cramping with a certain herb but says she's much better on the humira. i haven't tried humira before but that would be my next drug in the line up.

as for the progress, i can't say i owe any of it to meds. i seem to get every side effect imagineable or just have allergic reactions. i'm ordering some bovine colostrum just to see if that can help. my body is always one big experiment.
Posted 11/28/2012 1:30 AM (GMT 0)
@gumby - I'm sorry about that you're not feeling fantastic either. If it does turn out to be c.diff, then faecal transplants are meant to be an excellent treatment for it; I'm just sayin'... >.>

I feel you on the bloating and the isolation :-/ I know it it is not good to isolate yourself, but when I feel 'fat', miserable, and, above all, braindead, I do not exactly feel like going out and living the high life - not that I have many invitations to the high life, indeed I have precisely zero. But ah dear god, paradoxically, loneliness is becoming a more of a problem for me. Or, rather, it's an old problem which has come back. Bleurgh.

@bananagirl - Not long at all. I had my second dose on Sunday. If your friend is much better on the Humira, I hate to think what she was like before. As for me, I'm still on Pred, on a very slow taper - 1mg a week. (Going down to 26mg tomorrow.) My frequency is about 5x a day at the moment and back to being mainly #7 on the Bristol Stool Chart. A lotta bloating and discomfort, but extreme pain and fevers are being kept at bay.

Can't say I've had a brilliant reaction to meds either :-/ If the Humira fails, my next step would probably be surgery or, maybe, anti-MAP therapy. I like the idea of trying Helminth therapy, but that one really is out of reach.
Posted 11/28/2012 1:39 AM (GMT 0)
Responding to the original post..People fight all sorts of permanent illnesses..If it leads into depression, this is what causes people to kill themselves or wanting control they can't have..For most, we courageously deal with the hand that is dealt to us good or bad..My mother suffered and died in a horrible manner but suicide was not an option--It is interesting when I first got the dx--I had heard from an old classmate one of our old professor's wife had died from CD..so guess what I thought of! Glad that was not a true fate for cd..When I complained to an ER doctor in Vegas about the treatment options before I left for Oklahoma, he did say he felt more treatment options would be coming on the market soon..I am starting after a long term usage of predisone to have problems.. cry
Posted 11/28/2012 1:56 AM (GMT 0)
NCOT, she was pretty bad off before the humira. bms 20-30x a day and she's had surgery to remove some of her small intestine. her family doesn't understand the disease at all so she lives with her grandma now. i know she doesn't eat a lot- just two small meals a day because she doesn't wanna risk having accidents at work. i hope the humira will kick in for you. it's like you don't wanna take it because of the side effects but it better darn well work. 1mg a week is a super slow taper. i did 2.5 mg the time i was on it last year and was on edge all the time. just shakey and really fidgety.

i would totally try helminthic therapy if i could. i thought fecal transplants would be my grossest experiment, but eating worms would probably take the cake. i can't believe how expensive it is and my doctor would not go for it at all. he was pretty shocked when i told him i did FT at home. he was sure i got some infection from it but i didn't.
Posted 11/28/2012 3:54 AM (GMT 0)
@bananagirl, I'm really glad that you're feeling better. :) It's always so exciting when things get to manage! Prednisone is the worst drug ever. There was a post on here a few weeks ago about a guy who did a fecal matter transplant but DRANK it instead.....if I'm remembering right, at least. Did yours at home work for you? It gives me shudders just thinking about. I don't think I could handle it on my own. And it would probably give my poor husband a heart attack and he'd never go near me again!

@NCOT, @gumby, I'm sorry you guys aren't feeling well. :( That's always the hardest. It seems to go through ups and downs. My acupuncturist told me you can't compare the good days to the bad days to see if you're getting better, but if the bad days are less intensive and/or frequent then they were before. I think the hardest for me is when I feel crummy but not sick enough to go in to ER for it.....then it's just feeling crummy and hurting and there's not much you can do about it.
Posted 11/28/2012 4:06 AM (GMT 0)
I have had MANY days, like a few days when I was in the hospital, that I felt horrible and just wished it was all over.

I have had many many MORE days where I see how much by boyfriend and friends love me and I thankful to be alive. I would never cut my life short because of just getting the diagnosis.
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