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how do/did you guys spend your days when flaring?

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Ulcerative Colitis
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Posted 7/1/2013 5:54 AM (GMT 0)
Soystud, haha i agree about not being able to workout when you are living in the bathroom. It makes the workout less than fulfulling. Maybe we should invent a bathroom routine and make dvds? We would sell to all ibders and show them that you can be fit while crapping your brains out! We could call it "poo-lates" or "crap-fit."
Posted 7/1/2013 6:02 AM (GMT 0)
Joanna, you totally crapp me up !

 

Posted 7/1/2013 6:06 AM (GMT 0)
so how are doing these days ?
Posted 7/1/2013 6:34 AM (GMT 0)
Eh ill be honest. I had to go to the ER today. Ive been having a lot of neuropathy and today it went into my hand and face. It was all left sided. My sister called an ambulance and i was at the hospital for around 7 hrs. My bloodwork looked great- hemoglobin and rbc are still going up a lot. The doctor thinks it could be MS and im scheduling a brain mri this week. He also said it could be from my antibiotic usage. Ive been on flagyl and vanco on and off since february. Ive been on this course of vanco over a month now. My last two c diff tests were negative so ive decided to stop it for now and see if i can get feeling back in my feet, hands, and mouth. Its just scary though but i dont wanna stay on antibiotics if it causes me this much nerve damage. Im hoping the mri shows no problems and its from vanco.
Posted 7/1/2013 8:39 AM (GMT 0)
I invite my friends over as much as possible.

I have one friend who'se a great cook and she comes over quite a bit to feed me if I'm really poorly, we chat and catch up and I eat mashed up veg. I of course return the favour.

Luckily the weathers always been good when I've been bad too, so lots of just sitting outside and reading. and very very slow small trips places.

My phone bills are always high when poorly but the only way I can stay sane is to maintain a social life. and though when i'm bad i won't drink, i've still gone on nights out to quieter pubs. it might be hard but for me i just have to feel 'normal' or the stress would make me worse.

 

Posted 7/1/2013 1:13 PM (GMT 0)
hey B-girl - I had a brain scan once - they didn't find anything ;-)

ya, those er docs like to toss out the ms card a lot - those guys are numbskulls - I bet they've sent more people into cardiac arrest with their inept diagnosing than -sorry, my dog just farted - I have to leave the country !

anyway, i'm sure it's all the guilt from cow consumption that's giving you all your problems - go back to eating weeds and tofu and you should be fine -
Posted 7/1/2013 2:37 PM (GMT 0)
Joanna I hope it's not MS.

I usually just stay home, watch movies or play video games.
Posted 7/1/2013 2:55 PM (GMT 0)
Joanna, please be careful with the Flagyl. I was on a high dose for about two months and started to develop optic nerve neuropathy. That was actually the "last straw" and the reason I scheduled my surgery. I definitely cared more about saving my eyes than my colon.

Can't believe no one has mentioned this yet... when I was flaring badly I knit like crazy! During my flare I made five hats, two sweaters, two shawls, two pairs of socks, a stuffed animal, and Christmas ornaments. It really kept me sane to feel productive even when I was so sick... and knitting is nice because you can stop whatever you're doing at a moment's notice to run to the bathroom, then pick up at the same spot again when you're back.
Posted 7/1/2013 4:21 PM (GMT 0)
Soystud, well, i think its ms too unfortunately. Ive been suspecting it for a while now and would like a definitive answer if i can get one. Ive heard ldn is used for it but again, finding a doctor near me to prescribe it is impossible.

Andrea, thank u! Im hanging in there.

Pluot, did your neuropathy stop after you had your surgery? I was only on flagyl for two weeks but vanco for almost two months. I just am scared of stopping it since it has helped me so much with the c diff. I cant risk the full body neuropathy though.
Posted 7/1/2013 4:40 PM (GMT 0)
nah, you're wrong - and if i'm wrong, i'll go on a 20 radish a day diet until i'm right - :-)

how long have you been thinking ms ?

Posted 7/1/2013 4:51 PM (GMT 0)
Soystud, thanks for ur confidence! You sound like my mom haha love the positivity.

Ive had neuropathy for a few years since i was on cipro/flagyl/prednisone but ive had weird symptoms this year like dizziness an extreme heat intolerance. I havent taken a hot shower in months. It has to be cold. I also carry freezer packs with me everywhere i go. I just find it weird that all my bloodwork is fine. I cant pinpoint it on something. I do notice the common thing is the antibiotics. Ive been on flagyl three times in about 18 months, cipro once, and vanco twice. No wonder i was constantly flaring.
Posted 7/1/2013 5:07 PM (GMT 0)
so when was your uc dx'd ? before or after all the anti's ?
Posted 7/1/2013 5:32 PM (GMT 0)
Before- It was when i started my stupid fruitarian diet.
Posted 7/1/2013 5:47 PM (GMT 0)
oh yes, the nana nonsense -

live and learn -

geez, there's been a lot of stuff thrown at that poor little body of yours - I think it just needs to rest -

isn't there a skinny farm you can escape to somewhere in pa ? just chill and be pampered -

Posted 7/1/2013 6:21 PM (GMT 0)
It didn't stop immediately but it went away gradually over the course of a couple months. I never had vanco and I'm not really familiar with its side effects. If you need to stay on a similar ab I believe tindimax is a lot like Flagyl but the side effects are not as bad.

Hope you get things figured out soon *hug*
Posted 7/1/2013 6:33 PM (GMT 0)
Researched things to make me feel better
Made healing foods
Prayed
watched things that made me laugh
read to, colored and played with my kids
cuddled my kids- lots and lots of this
Turned music on and sang
Prayed more
Talked to friends on the phone and facebook
Sewed/Embroidered
took scenic car rides
Posted 7/1/2013 9:06 PM (GMT 0)
I see several gamer posts. We should exchange gsmertags. I play on consoles and pcs (I'm a game designer so that's my excuse for having way too many games!:).
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