15 Year Story (in a nutshell)

[mogulgrandma]

I was diagnosed with Ulcerative Colitis a little over 15 years ago at age 43. Interestingly enough it all started when I quit smoking. What appeared shortly thereafter was an article in a United Kingdom medical journal (my father-in-law found) that related UC with nicotine as a useful drug. I spoke with my GP who poo-pooed the article (he was determined to hand me a hemorrhoid remedy). When I insisted it was more than that, he sent me to a gastro guy who fortunately was up to date on the info.

Over the years, I've had one week-long hospital stay with transfusions, more frequent flare ups,:ybatty: and more drugs, I'm so tired of controlling with prednisone. I have so many scars on my body because of my skin thinning from the prednisone, my husband wants to put me in a bubble. I crave an existence where I don't have to forfeit a quality of life in exchange for minimal drug control. Flare ups are constant and I'm always on some steroid in addition to currently 6MP, balsalazide, and calcium. This latest bout has me depressed and soooo tired. My gastro guy and I have recently decided to try Cimzia self-injections and I must admit I'm scared about this but I've been on almost everything else. If anyone has any info, please let me know.:sign0085:

I've been reading your posts about B complex vitamins. I think I may try that. Diet doesn't seem to matter with my energy level. I just keep eating less to prevent bathroom breaks. Being a teacher makes it hard to leave the classroom.

Thanks for listening - it's my first time ever post on a UC/CD website.

Judy

 

[xJillx]

Hi Judy and welcome! Being that you have been getting little relief and regular flare-ups, I think upping your meds is a good idea. I don't know too much about Cimzia, but check out the Cimzia Club thread; I am sure you'll find it informative.

I give you lots of credit for teaching with this disease. I used to teach, but I left the field before being diagnosed. But I don't think I could return because of my often/urgent bathroom breaks. How do you do it??

 

[Grumbletum]

Hi Judy
A big welcome to the forum, I am really glad you found your way here. Sorry to hear about your long struggle with UC. I can totally understand why this gets you down. I haven't taken Cimzia myself, but if you go to the Treatment Sub-Forum, there is a link there to the Cimzia club and you will find other members who are on it and might be able to get some information and insights.
Although it's Crohn's I have, I was diagnosed at age 51, was also a teacher for 20 years and my symptoms reared their ugly heads 6 months after I quit smoking. I don't know if there's a connection there or not, but my GP says for Crohn's smoking is one of the worst things I could do.
Did you stay off the cigs?

 

[mogulgrandma]

Thanks both Jill and Helen for your encouragement.

Helen, I actually made it out to Scotland (as far north as the Isle of Skye) 5 years ago - my daughter's graduation present. You have a beautiful country - my father's siblings were born there before the family moved to the US. We stayed in bed & breakfasts and also took in the Edinburgh Arts Festival and Military Tatoo.

I did check out the Cimzia Club and feel better already. As far as smoking goes, I did kick the habit. I really do think that the nicotine kept the disease under control for awhile. I actually used nicotine patches as a therapy for awhile after I quick smoking.

Teaching gets stressful every once in awhile, but I've been able to keep it under control most of the time (lots of steroids).

Thanks for your help.

 

[Grumbletum]

How lovely that you made it to the Hebrides! I'm on the Isle of South Uist. The weather is hot and sunny today, and the island looks so beautiful.
Here's hoping the Cimzia works for you and you can have a break from all the steroids. Take care x

 

[chrisnsteph1022]

Welcome! I'm also on Cimzia. It's working fairly well, but I'm not quite in remission. Good for you quitting the smokes. Wish I could do the same. Maybe then I'd see remission...

 

[Sue-2009]

My flare up started after I quit smoking too!! Grr.....Good luck and stay positive...I know its hard, but keep going... Peace, Sue