Hi Tony,
I hope all goes well for you and you feel better soon, and get home. Love the photo, I am a keen photographer myself.
Best wishes.

Thanks Honey , seem to be all rehydrated today , so better able to deal with the cramps and bms , just waiting for the big guns to arrive and assess me , I'm on tender hooks waiting because the surgeons were hovering around at the weekend giving me options
At least im in a nice room with a lovely view so that does help .

Hi there,
hope the news is good and you start to feel better, and stronger. I was in hospital for sometime a few years ago because of side effects of meds. It is a necessary evil until they make things improve for you, but one would rather be at home! Get well soon.

Had a good afternoon yesterday , night not so good , upping the dose of remicade this morning , here hoping .

Hope it helps

thanks Ron im up early , you're up late the joys of ibd , how are you doing at the moment ?

Thanks, Tony and Layla. Knowing people who have made the switch makes it easier.

I'm thinking seriously about going to Remicade just so I can retire. Humira is still working, but I can't afford my after Medicare portion after retiring. Plus I'd have to come up with 7 or $8000 in January and February just to blow through Medicare's catastrophic coverage.

I know it's not smart, and I know there's risks, but I have been on concrete factory floors for 42 years and I have bone spurs and arthritis in my feet. Big Pharma greed shouldn't prevent a person from retiring, damn it.

Hi Tony, I have been reading your posts today because my GI is talking about switching me from Humira to Remicade because the Humira doesn't seem to be working on me. I was on it years ago and ran into insurance problems and wasn't able to get it, so I was off for over a year. I just got back on a few months ago and I haven't seen any difference in my symptoms on it this time. I was diagnosed in 2010, but had never been sick before in my life, so all this doctor stuff is really new to me. I hope things get better for you soon. I feel like I am flying blind in the dark with all of this, and then I see you and you have been dealing with it for so many years and my issues seem so small. My prayers are with you.

Hello,

I went from remicade to humira. I went to humira because I had an allergic reaction to the remicade. Otherwise remicade worked really great for me.

I had the remicade infusion yesterday , doubled it to 10 mg/kg , had a better night , only one at 4 am , then 2 more from 7 to 8 am , and all quietish since then , I'm still on the iv antibiotics (flagyl and piperacillin ) and hydrocortisone ,
I feel very weak this morning , I presume its the remicade effect ,
thats the end of my update , hope everyone is feeling a little better .

Hope the doubling of the dose works for you!
My second dose has been delayed because of a junior doctor strike so I don't get it until next Tuesday! Which is a bit of a pain as I'll be working on Wednesday so I hope I'll get some sleep this time.
I'm otherwise fine, getting by on immodium and/or codeine.

ps, meant to say lovely view, I've been to Cork years ago and liked it a lot

Layla said:

Hope the doubling of the dose works for you!
My second dose has been delayed because of a junior doctor strike so I don't get it until next Tuesday! Which is a bit of a pain as I'll be working on Wednesday so I hope I'll get some sleep this time.
I'm otherwise fine, getting by on immodium and/or codeine.

I hope good things for you.

Layla said:

Hope the doubling of the dose works for you!
My second dose has been delayed because of a junior doctor strike so I don't get it until next Tuesday! Which is a bit of a pain as I'll be working on Wednesday so I hope I'll get some sleep this time.
I'm otherwise fine, getting by on immodium and/or codeine.

Has a much better day yesterday ,cramps have all but gone and the time between my last two bms was nearly 8 hours, so the double remicade looks like its kicking in ,
sorry to hear your second infusion has been delayed , hope it goes as well as mine "seems to have"
I dont know how you can work when you are feeling so unwell , best wishes from a lovely night in Cork ,
nice to know you have been here and liked it , its a nice compact little city with lots to do all within walking distance .

Tony H said:

Has a much better day yesterday ,cramps have all but gone and the time between my last two bms was nearly 8 hours, so the double remicade looks like its kicking in ,
sorry to hear your second infusion has been delayed , hope it goes as well as mine "seems to have"
I dont know how you can work when you are feeling so unwell , best wishes from a lovely night in Cork ,
nice to know you have been here and liked it , its a nice compact little city with lots to do all within walking distance .

I guess I'm really lucky in that I don't have that much pain. I did when I was initially diagnosed, the cramps were killing but now it's really just D and fatigue with the occasional cramp. Oh and some pesky fissures. Just heard today that I'll also be having an iron infusion when I go for the next Remicade, hopefully that will help with the fatigue and breathlessness.
I also don't look ill at all, my bloods are mostly good and am not losing weight, but inside the strictures are forming and I'm losing a lot of blood, hence the Remicade.
I only work around 3 days a week, I couldn't cope with full time work, haven't for years. Have you?

Are you still in hospital? If so, I hope you'll be out soon, despite the view

Hey Layla , still in hospital , hasn't been the the best 24 hours , bms are frequent again , at least 10 yesterday and 8 and counting today , the latest from the docs is that if it gets much worse that surgery is looking more likely ,
haven't worked in years , you think you can go back and all of a sudden you are back where you started again , charging for the toilet
Really hope that the iron infusion and the remicade will give you some relief .

the view is still great but as they say its a nice soft day today, (its raining)

Well surgery it is , , my GI was just in and Im just waiting on the surgical team to set the time , a bit shocked but if all goes well my quality of life should be a lot better .

Hope the best for you.

thanks Ron appreciate the support , will be seeing the main surgeon monday and if all goes as planned , surgery as soon as possible .

Keep us updated

Tony H said:

Well surgery it is , , my GI was just in and Im just waiting on the surgical team to set the time , a bit shocked but if all goes well my quality of life should be a lot better .

Hey Tony, sorry to hear that!
But yes if it helps your quality of life it's worth it.
I had surgery 2 years ago now and what a relief it was to be able to eat without fear of strictures.

Hope it all goes well!

Hey Tony. Sorry to hear about your set back. Man , they did same thing to me. Released me too early... You take care. never. Ever. give up.

My dermatologist told me that Remicade is stronger than Humira.