After 1 year of Incredible Pain & Suffering

Intro:

Hi, I’m Janet- 62 years of age, diagnosed with 99% large colon UC about 3 years ago. After one year of incredible pain & suffering, someone finally did a scope and voila. After being tortured with all the usual black arts, eventually I talked my specialist into trying Remicade. Symptoms managed with IV Remicade for past 15 mths, however, the old body is using up the meds faster now and the distance between infusions has gone from 12 to 8 to 5 weeks apart. At $5,616.00 a pop, my medical carrier is balking. My take-home pay is only $2,200/mth.

Some more about me:

I’m a Canadian, eh. Still working F-T, share my home with 3 felines who keep me sane. I rarely eat red meat, I do enjoy a glass of wine with dinner. I am a huge Dr. Who & Orphan Black fan. I’m tired and sore from shovelling snow this winter (insert whine here). I talk about UC as often as I can to everyone who asks.

Symptoms:

Though being infused with Remicade every 5 weeks, major nasty-gas, and diarrhea occur in the 10 days prior to treatment and continue for about 4 days afterward. I’m tired most of the time and fall asleep in seconds. Of course some of that could be age-related, but I have a 65 year old sister who runs circles around me like an energized bunny.

I’m Janet:

Yes UC changed my life. I rarely go to restaurants and have little to no social interactions outside of work. I’ve had way too many ‘accidents’ and carry extra clothing with me to work, just in case. I have had turn the car around and rush home too many times to count, and more recently, overnight “accidents”. I’ve had some challenges with my Specialist who rushes me thru appointments and often postpones them. He gets his back up when I ask questions, or make suggestions. I’ve had one endoscopy and colonoscopy in 3 years. Some of my family members are understanding, and others, no matter how much I explain and diagram, they just don’t get it.

I had some success with a naturopath during this past spring/summer, however, the supplements were very costly and I’ve since drifted from them because I can’t afford them. After reading “Wheat Belly” I eliminated wheat from my diet and that alone has made a positive change in my digestion. I drink about 5 litres of water daily and take a multi-vitamin when I remember. Unfortunately, I retained 50lbs of the 125lbs I gained during my Prednisone days.

I have tried to purchase Chlorella and Nutricology Liver Beef Natural Glandular, which I have recently learned about, but it appears the U.S. supplier doesn’t ship to Canada. If anyone knows a Canadian distributor, please share.

I just read the EVOO blog and will also give that a try.

My big concern is that when I retire and lose my medical coverage I cannot afford Remicade. And, of course, my last option is surgery to remove the large intestine. Because of my age, I’d have to make that decision really fast – ie) will I be too old to survive the surgery at 65? That terrifies me, mostly because though I’ve read as much as possible, it remains a mystery to me (the hows, whats, what-ifs). And it seems that only the very young have had that major surgery. Haven’t read any “old fogey” stories yet.

Ask Adam:

Hi Adam, your website has inspired me. I have shared your website with EVERYONE I know, sufferers and sufferees (new word I made up for those who have to listen to me). I applaud you for putting this out there.
My big question is, do you have any 65 – 70 year olds sharing their trials, successes, etc?
PS: I purchase incense in bulk from Anna’s Incense website.
I have also found a spray that eliminates odor: NILODOR available at some DELL Pharmacies.

written by Jan M

submitted in the colitis venting area

Hey Janet,

Super happy you’ve been inspired by the site! Awesomeness you Canadian you!

I’ll be checking Webster’s next year for your new word too.

As for your big question, 65-70 year olds sharing trials etc…

UM…you’re not thinking you’re alone here are you?????

Well, I knew for sure there are some people who fit that bill, and after doing a search down in the “search” box at the bottom of this page, here are some results:

Barb H, awesome woman, likes to kick it in Hawaii, she’s just a tad bit younger than you at 61 (maybe 62 now) but either way, her story is here:  https://www.ihaveuc.com/questions-after-6-weeks-of-scd-and-reduction-of-meds/

Also, here’s a link to Jo Ann’s story from May 4th, 2013, she’s 63 years old:  https://www.ihaveuc.com/starting-to-have-a-flare-up-of-ulcerative-colitis/

Josephine’s a tad bit older at 83 years old, here’s her story:  https://www.ihaveuc.com/i-hate-to-have-the-doctors-check-my-butt/

Mary S, she’s was 62 when she wrote this story back on October 7th, 2013, so she’ll definitely be 65 by 2016, here’s her story and she was pretty sure the fall weather was sending her into another flare at the time:  https://www.ihaveuc.com/who-knew-life-would-bring-me-here/

So Janet, there’s a few stories.  Unfortunately there’s no simple easy way to search the stories by age of the writer, but I’m sure there’s probably a few dozen other ones from people in that general age group.(There’s over 2000 stories on the site…).  What you might want to do, is get some high speed interent, go to the homepage, and just read the little blurps for each story.  You often can see the age of the writers there.  AND, there’s a link for “older posts” when you get to the bottom of the stories that are listed which will bring you to the…older posts.

I wish you the very best with your UC, and thanks again for being a part of the site.  Where you from in Canada anyways???  East side? West Side?  where are you claiming?  Cannucks..Canadiens…??? — Adam