Just saying hello

[mama21princess]

Hello! I've been lurking around the past couple of weeks, so I thought I'd introduce myself. I was just diagnosed with UC on the 17th, after having problems with diarrhea since November 2011. My gastro put me on Asacol HD, 2400 mg twice a day. Goodness it is expensive. We don't have very good prescription coverage, and it is going to cost us $750 a month until we meet our deductible. The gastro's office gave me some samples, and they are trying to figure something out for me.

I have decided that I really dislike telling people about my diagnosis. Everyone has an opinion about it. They always say, "Oh, my (mom, sister, friend, etc.) had that once. You need to eat this or this, or not eat this." It is driving me crazy. What do you say to people when they things like that?

 

[Astra]

Hiya mama21princess
and welcome

Sorry you've got a dx of UC, hope the Asacol works for you. My friend who has UC is on Remicade with fantastic results. Don't know your health system so don't know if thismed would be cheaper?
It's hard to ignore ignorant people, but ignore them you must!
Other people telling you what to eat is a killer, but smile and thank them politely!! We can't really knock everyone out who suggests what we eat, even tho we want to!
Check out our diet forums, learn from the experts, us!
Lotsa luv
Joan xxx

 

[sickinlk]

hi and welcome to the forum.
FYI remicade is extortionately costly. its thousands of dollars and because you have to get it in a hospital, you would have the extra cost of hospital fees on top of that.
I think the worst thing people say is you need to eat more fibre. ouch!!, if only they knew. it would be nice to have them all watch my next colonoscopy and see then what they think scraping my bowel with grains and fibrous fruit would feel like. i don't know what to say to them. . my father still thinks i have IBS ffs.
ju

 

[scottsma]

Hello! I've been lurking around the past couple of weeks, so I thought I'd introduce myself. I was just diagnosed with UC on the 17th, after having problems with diarrhea since November 2011. My gastro put me on Asacol HD, 2400 mg twice a day. Goodness it is expensive. We don't have very good prescription coverage, and it is going to cost us $750 a month until we meet our deductible. The gastro's office gave me some samples, and they are trying to figure something out for me.

I have decided that I really dislike telling people about my diagnosis. Everyone has an opinion about it. They always say, "Oh, my (mom, sister, friend, etc.) had that once. You need to eat this or this, or not eat this." It is driving me crazy. What do you say to people when they things like that?

Hello and welcome. I'm always horrified when I read about the cost of meds.in the USA.Our National Health gets a lot of bad press,especially with our present Government annihalating everything,but we have nothing to worry about,which is a bonus when you're sick.As to the "experts" giving you advice on diet and lifestyle,it's very annoying to say the least.When I was diagnosed I was given lots of leaflets etc which were good to give to family and close friends,so they could understand about UC etc.Other people don't matter.Could you print something off the web for them? They'd think it was a horror story !!! Feel better soon.

 

[2thFairy]

Remicade in the US is generally done out of hospital, but still costs upwards of $16,000 per infusion.

Welcome to the forum mama21princess!

 

[2thFairy]

As for comments and diet recommendations... grin and bear it is the best thing, I suppose. However, I did lose my cool with an acquintance and that conversation ended with me asking if they bled out their ass everyday for 2 years like me or did the crap always come out of their mouth like it was today. Not my best day... ha!

 

[Astra]

We don't half knock the NHS but our drugs only cost £7.20 a pop! It's only a contribution, we do pay National Insurance with our salary tho.

 

[FrancisK7]

I have decided that I really dislike telling people about my diagnosis. Everyone has an opinion about it. They always say, "Oh, my (mom, sister, friend, etc.) had that once. You need to eat this or this, or not eat this." It is driving me crazy. What do you say to people when they things like that?

:rof:

When I first read this I smiled because I am so empathetic to you. I wholeheartedly agree with you. First, most people have never heard of UC. Some people know Crohn's because it's such a distinctive and unusual name for America, and usually they only know it's related to the "stomach area" but UC? You might as well tell them it's a disease called Fakedonia that originates from Pandora and they'd just look at you with uncertain approbation in their eyes.

The kicker, of course, is when they share their thoughts on the treatment after realizing it's a digestive system issue, as if taking probiotics would reverse the genetic mutations on my genes that code for the immune system behavioral cells. Yup, that'll happen.

I think people do it instinctively because they're unsure what to say and they cling onto the idea that offering a remedy is helpful and therefore, it's a positive response. They don't realize they're the X'th person to do it and it's just annoying as hell.

The best response is simply to thank them and drop something like "I'll look into it" or "I'll discuss your ideas with my doctor at my next appointment." It's a big fat lie of course, but it acknowledges them instead of rejecting their empathy offering (it's like the Aztecs that sacrificed goats, except now the offering is a remedy... society has evolved!) and you can get back to whatever it was you were doing faster.

I only take the time to educate people on my disease with those closest to me, or those who are genuinely interested in understanding what UC is and ask me specific questions.

 

[mama21princess]

Thank you all so much for the encouragement and welcome. It's nice to have someone who understands.

 

[Sauter]

Hey everyone.
I was just diagnosed with UC. I'm actually still in the hospital having just undergone my first day taking steroids. I'm mostly just lurking around for useful information about nutrition, drugs, and exercise. I wanted to say "hi," though.

 

[2thFairy]

Hi Sauter and welcome to the forum! What a drag that you were just diagnosed and hospitalized to boot... Steroids are no fun, but hopefully that will get you back up and running in a few days. I'm assuming that you had them intravenously..? If so, you should see results very quickly.

Stick around and ask as many questions as you want. We may not have the answers, but will try to help you find them.

 

[VitaD]

Welcome to the forums, mama21princess.

So by any chance have you looked into taking Mezavant (Mesalamine) tablets &/or the enema? That's what I'm currently taking (did the enema for a bit last December but was getting too gassy) though I think they may not be working anymore, if they even really worked at all since sometimes as of late a tablet or 2 will appear undissolved or partially dissolved in my stools. Still maybe you'll have better luck than I did if you ever end up on them &/or the Enema, ftm.

 

[Sauter]

Yeah, 2thFairy, I've been on intravenous steroids (methylprednisolone) for eight days now. They just started me on Asacol in conjunction with the steroids Monday night. Since Sunday they think I'm on the upswing based on how I describe my stools, how I look, my pain, and how much I've been moving around. I'm really hoping to be out of here by Friday, but that is nothing but a hope. My GI says that she wants a couple days of consistently brown, formed stools before I'm discharged, so maybe the weekend looks more likely.