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Crohn's Disease
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Posted 8/17/2020 7:14 AM (GMT 0)
hey everybody, seeing a few of the more recent post, i can say when i had a reaction to remicade trying to start it for the 3rd time years ago i had an immediate reaction as you did. i switched to Humira and have been doing 2 shots per week for several years now. iron infusions, i just finished a series of 5 and feel much better, my legs quit twitching and i can sleep. an update on me- i was just in the hospital for 19 days, got out friday night.i had a extreme fever (103-105) along with a the worst headache you can imagine... they did a spinal tap (rock on!) and found i had Listeria Meningitis. will be on IV antibiotics for 6-8 more weeks.. i have lost some hearing from either the infection or the meds, and i have double vision. dont know if it will resolve when done treating or permanent. i am also back on 7 day per week full TPN.- in my 21st year! so hello to anybody that remembers me.. randy
Posted 8/17/2020 9:58 AM (GMT 0)
Hi Randy,

I certainly remember you, as I'm sure many other will. So sorry to hear of your recent struggles. Life just keeps coming at us sometimes. Hopefully they have this under control. Doesn't sound pleasant at all. I assume they're suspending your Humira while continuing with the antibiotics? Hope you keep recovering without issue. TPN is a difficult option, but I'm sure it will be best in the long run.
Posted 8/17/2020 2:02 PM (GMT 0)
Hi Randy! Sounds like you are dealing with the latest challenge pretty well. Glad you got diagnosed and care quickly, but sorry you have the side effects. Hoping they go away for you! You have always been a great example of tackling life as it comes!
Take Care!
Posted 8/17/2020 2:47 PM (GMT 0)
Hi Randy, while I am glad to hear from you, your news of your recent health battle is awful. It sounds like you are knocking things back, hopefully the hearing & visual issues will be temporary.

I always think of you as the energizer bunny, you just keep on ticking no matter what.

I know it's a long shot, but do you ever hear from any of the oldies, BetaGirl comes to mind?

Please keep us updated when you can. Take care.
Posted 8/17/2020 7:54 PM (GMT 0)
Since straydog asked...I was wondering if you heard from Sniper or VV too.
Posted 8/17/2020 8:49 PM (GMT 0)
Randy!!!!!
Posted 8/17/2020 9:34 PM (GMT 0)
Hi Randy
Of course, I remember you. Sending you healing thoughts for your new battle. Hopefully, the side effect are just temporary and they clear once you finish the antibiotic course.
Posted 8/18/2020 12:50 PM (GMT 0)
Randy, hang in there. I too have been lurking around the site but not posted in a long time. Like you way too many health issues. In fact I am in hosrigjt now with a bad flare. Hope to be released today. On Stelara for about a yr now. Things we’re good until now. Inflammation at resection sites but no blockage. I just had heart surgery 3 1/2 weeks ago. I am now on my third annual renewal for work disability insurance. I did get approved first time without any appeals for social security disability for the 5 to 7 year review period. Yesterday my GI tells me my crohns journey has now turned from the unusual to the usual which he th8nks is good. Unusual meant I was severely damaged internally but no external symptoms which made treatment hard to internal under better control with more external issues he can help me manage better. Not sure I agree since I am in hospital with a flare, but he said this is better than a surgery.
Posted 8/25/2020 12:45 AM (GMT 0)
monte, yes we are holding the Humira till the bug juice is done. got 8 boxes in my mini-med fridge.

i have not heard fro VV or sniper for maybe a year, but yet i have not contacted them either. as for betagirl, last i saw and heard she is a PHd in psycholgy and did an article for the oley foundation last year on IBD andmental issues, like stress, long term sickness etc...

side effects, double vision has gotten better the last 3 days actually still in and out though.
Posted 1/4/2021 2:20 AM (GMT 0)
Randy,
I haven't been on in awhile. I lurk and read. I hope you have recovered from this latest struggle and that you are feeling better!

You reach out to others and give them advice and strength by example. Hang in there!

Clo
Posted 3/16/2021 4:37 AM (GMT 0)
hey all, as an update i just had both my eyes done with new lenses. 2 weeks ago for the second one. seems with the meningitis last summer and fall my eyes decided to develop narrow angle drainage and the drs were scared of having a sudden glaucoma attack. so they wasted no time in doing the surgery. solved the drainage problem and the cataracts that would have to be done in a few years anyhow. glad to see so many old names. randy
Posted 3/16/2021 5:46 PM (GMT 0)
Dang Randy if its not one thing its another with you, as my Mom use to say. Seems you rarely get a break. You were always one of the people I felt got the worst of the worse cases of Crohns. I am in FB group and have met a young lady who has as severe a case as you do. If there is some wild rare issue with Crohns, you and she get it. And just like you, she just keeps on fighting the good fight. Hang in there buddy and I hope no new infections for you! Hugs!
Posted 5/20/2021 8:48 AM (GMT 0)
I remember you!! It's been awhile since I've been here. Hope all is well with you smile
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