Twenty Years and counting

[annew]

Wow. I just realized that I have lived with Crohns for almost as long as I didn't. Huh.

I was diagnosed in my last year of college. The next four years I did almost continuous prednisone while they tried variations on a theme of all the other drugs that might work. Sadly, only prednisone worked. I hated it.

I've done Remecaid for the last ten years. It has worked like a charm. Two years or so back my doctor tried to switch me to Humira. It didn't work at all so we went back to Remecaid. The Remecaid hasn't been as successful since we tried the switch. I'm now at full dose and going every 6-7 weeks. A couple of months ago we added the pill version of methotrexate to the mix. I don't know if it is working or not. We shall see. I'm still having some problems (and spending copious amounts of time in the bathroom. Thank heavens for the Kindle!).

A year ago I started having arthritis problems in my feet and ankles. Fun times. I'm told it is a common side effect to the Crohns. Yay.

All in all I function okay. My boss is incredibly understanding when I get stunk in the bathrooms in the mornings. I am very lucky to be working for a man like him. I do what I can do and don't do what I can't. The house stays a wreck and yard work gets done when I can do it. When I can't I hire a young strappin' lad to come do the lifting and toting for me. It all works out.

I'm pleased to find this forum. It's nice to be able to talk about stuff with people that get it. And I LOVE that you have this smilie-
oo:

 

[Angrybird]

Hello Anne and welcome to the forum :bigwave: Sorry to hear that you are not feeling your best right now, out of interest have you had any recent investigations to have a look at what is going on inside? I only wonder because of the ongoing problems despite being on treatment. Along with many trips to the loo what other symptoms are you experiencing?

Glad you have joined hun, there is a great bunch of peole here and as you say we really do 'get it'

AB
xx

 

[annawato]

(and spending copious amounts of time in the bathroom. Thank heavens for the Kindle!)
:

:rof: What would we do if we couldn't read on the loo!
Welcome to the site Anne. I love your attitude to the house and garden work - I get so sick of all my friends houses that look like they're straight out of home beautiful when mine is done if and when I'm able. ie rarely, haha.
Sorry to hear that the switch back to remicade doesn't seem to be working as well - i've just done the same thing- remicade to humira and back to remicade. Not working yet but may be too early to tell.
I hope your GI can get things sorted out for you,
all the best

 

[David]

Hiya Anne and a hearty welcome to you!

Out of curiosity, have you had your vitamin D levels checked? People with Crohn's Disease are often deficient and many who properly supplement report a reduction in bone, muscle, and joint pain.

Again, welcome

 

[CLynn]

Welcome Anne! I'm at 24 years and counting myself! Another one from the prednisone club. Although now instead of the prednisone, they stick me on Imuran, well, the generic form of it. Good attitude, we can only do what we can do, goodness knows we spent enough time trying to out do our bodies when first diagnosed. I refused to give in to the Crohn's then, and am still stubborn that way, but my logic kicks in and tells me that I require more down time than a normal person.

 

[annew]

Thanks for the welcome, y'all! It is always nice to chat with others who understand.

CLynn- I hate prednisone, but it does work. It makes me mean though. That filter that keeps you from saying every little thought that runs through your head is apparently dissolved by pred. I get just hateful and cranky. Ugg. I tried Imuran and 6Thioguinine, but had horrible reactions to both. Sad, because they worked great for a couple of weeks.

David- I don't know if I have had my Vit D levels checked or not. I did finally convince the doctor to check my thyroid. I am outdoors a lot when the weather is pretty and drink Vit D fortified milk. Maybe that helps? I am not adverse to taking a Vit D supplement. I'll look next time I'm at the store. Thanks!

Anna- I'm so sorry to hear that your switch back to remecaid hasn't taken yet. Fingers crossed! I wish I had never switched to tell the truth. It was purely done for the doctor's convenience. Grrrr. I hope yours starts working soon.
I used to knit on the toilet, but with the additional of a Kindle to the house I find myself doing more bathroom reading. I do love the Kindle.

Angrybird- I had yet another colonoscopy done back last September. It showed some irritation still, but not as much as I have had in the past. Still having bouts of cramping, mucas, blood, etc. It goes in waves it seems. Was up last night from 12:30-3am on the toilet. Fun times there. Some days I am pretty okay though. I can't figure why some days are wretched and others are no problem. There doesn't seem to be a food connection at all. Weird. I have always triggered with stress and lack of sleep. About a year ago I was told I was being phased out and had to leave a job I loved. I started a new job on October, but there was a lot of associated stress with that (and I admit some residual anger). I sure those emotions have played into my health. If only the insurance company would pay for me to have Sven adn Antonio the House Boy massage therapists!

 

[David]

Hi annew,

I'd recommend you get your vitamin D levels checked rather than supplement blindly. If you're deficient like many here, fortified milk won't help much. Sun of course helps, but if you're covering most of your body or using sunscreen, that removes the benefits.

Regardless, I wish you all the best

 

[annawato]

Haha, I can't imagine knitting on the loo cos I'm quite certain the ball of wool would end up in it all!
I think stress is a major trigger in CD, well for me anyway. Daily massages would be fantastic! Plus a cleaner, a cook, a gardener.......actuall. y it'd probably stress me having all those people around. My happy family will do just fine.