Ulcerative Colitis Tips


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After 1 year of Incredible Pain & Suffering

Jan M fullIntro:

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

Adam Scheuer founder of iHaveUC.com

Adam Scheuer
founder of iHaveUC.com

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:  http://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:  http://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:  http://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:  http://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




11 Responses to After 1 year of Incredible Pain & Suffering

  1. Joan McCaul February 4, 2014 at 10:57 pm #

    Hi Janet,
    I hear everything you’re saying. I wish you the best with this dreadful disease. I just started the SCD diet about 10 days ago. Would you consider trying it? I can’t say yet if it is actually helping but I do feel the foods are soothing to the guy and perhaps are resting the bowel. Good luck.

  2. Darlene February 5, 2014 at 1:43 pm #

    Janet,

    I just read your story with much interest. I’m the one that posted about the Now chlorella and the Nutricology beef liver glandualar tablets. The place I like to order from is swansonvitamins.com. They have good prices and I’m able to get both of these products plus others that I like to use from them. I just checked and this is there policy for shipping to Canada: Shipping to Canada – Actual Freight Cost — “Shipping cost dependent upon weight and destination; calculated during final checkout
    Average shipping time for Canadian orders is 15 business days
    After 15 business days, a refund for the purchase price of the products may be given, upon completion of a postal inquiry. The Goods and Service Tax (GST) is applied when your order is placed. GST may vary from province to province, and depends on the nature of the item(s). Please contact your customs office to thoroughly inquire about import regulations before placing your order. For a list of known shipping restrictions, click here. (The ‘click here’ link is active on their site.)” Now brand Chlorella is also available locally at a major grocery chain and at health food shops. The Now Chlorella contibutes more benefit to my health than the beef liver. It’s the chlorella that caused the big improvement for me. If you’re not able to order online maybe you can find it locally since Now is a popular brand.

    Janet, I was 68 when I was diagnosed in May of 2012. Last week I had my 70th birthday. In April of 2012 a friend of mine at 72 year old female also received a diagnosis of UC. Like you she had a more serious case than I have. Her colon was badly diseased the entire length. About 7 months after her diagnosis she had the surgery to have her entire colon removed. Because of age the J pouch was not recommended. She is doing well, no doubt in part because of her positive attitude, in spite of some meltdowns. She also lives alone but had the surgery in the city where her son lives so she could stay with him a few days after being dismissed from the hospital. She had to rely on friends for help after she returned home. My friend has commented that she has now heard about some alternative things that might have helped which she didn’t know about at the time.

    Like you I work and live alone…with my one cat. At one time I had two dogs and three cats but now only one. To me animals are little angels….

    Wishing you much success and improved health as well as lots of kitty meows and snuggles.

    Darlene

  3. Steve February 5, 2014 at 2:42 pm #

    Hi Janet. I’m 74 years of age and have been a UC patient for about 10 years. I’ve had no success with any of the typically prescribed drugs other than prednisone, which as you probably know, can cause more problems than it solves. However I’ve had great success with a probiotic called VSL#3. It took about a month to kick in, but thereafter it put me in remission, where I’ve been for the past couple of years. You can find the information online – just google “VSL#3. I wish you best of luck.
    Steve

  4. Natalie February 5, 2014 at 3:05 pm #

    Hi Janet!

    I am 67 years old (will be 68 in March). In October, it will be 3 years since I was diagnosed with Ulcerative Colitis. I am now in remission and have stopped taking my medications. I slowly weaned myself off of them and currently take a probiotic, astaxanthin and L-Glutamine….all per Bev’s advice. Bev is our Queen of UC’ers! Some call her Dr. Bev! She has inspired so many people on this site…God bless her! On occasion, I may get slight bleeding but, for the most part, I can eat almost everything and am able to stay in remission. I am not going to lie….I do think about what COULD happen in later years. It kind of scares me because of my age. However, I don’t dwell on this dreaded disease. All I can do is pray that my condition doesn’t get much worse. Maybe, somewhere down the line, they will come up with a cure. I hope it will be in my life time. I get a newsletter from “Everyday Health” and just read an interesting article. It is regarding the connection of sleep disorders and ulcerative colitis. It just so happens that I have sleep apnea and wonder if it contributed to my UC. Below is the article for you (and all other UC’ers out there to read). Does anybody else out there have sleep apnea or any other type of sleep disorder? Here is the website:

    http://www.everydayhealth.com/columns/robert-rosenberg-sleep-answers/is-there-a-link-between-sleep-and-inflammatory-bowel-disease/?xid=nl_EverydayHealthDigestiveHealth_20140205

    • bev February 7, 2014 at 9:45 am #

      Natalie…I am so deeply moved and happy that you continue to do so well! What can be better than being in that place we all so long for….remission?!

      Thank you again for your kindness. You are a true inspiration to all of us!!

      :)

  5. bev February 5, 2014 at 3:24 pm #

    Hello my fellow Canadian!

    I just have to chime in here on the fact that your doc gets his ‘back up’ when you ask questions…if I had a dime for every time that’s happened to me AND for every time I’ve heard that on this site…I’ve stopped going to them, no matter how sick I get, just because I don’t even want to deal with them any more. It’s always painful in one way or another.

    You have to wonder if these doctors now have so many damned UC patients, like us, that they are just tired of all of it too…not that I am defending them…NO WAY, NOT ME…I have my own doctor ‘horror’ stories for sure…but are more and more of us getting UC? I think so…and I am not sure why. At least we are not alone in all of this ‘crap’…no pun…

    Loved your post. I hear that Canadian humor…love the lady you are Janet! I am not 65 yet, but we’re all heading that way, and I too wonder sometimes whether to make the decision to have my colon removed sooner rather than later.

    Cheers
    :)

    • Adam
      Adam February 6, 2014 at 7:14 pm #

      Yo Bev,

      You got to let us all in on the Canadian Humor!! Come on!! are we outsiders missing some good fun???

  6. bev February 6, 2014 at 10:49 pm #

    Nah…you Yanks are just as funny…only it’s a ‘warm’ funny cause you’re so far south…our humor is more of a cold, dry humor…lol

    :)

  7. Bryan C
    Bryan February 7, 2014 at 7:19 am #

    Janet,

    I can feel your pain I know everything your going through and I know Canada had the worst health care that’s ridiculous you have to pay that much for meds. Im 35 and had Ulcerative colitis for 15 years. It helps to know that other people know what your going through and there are a lot of people on this site that are. I was the same as you I couldn’t go anywhere or have a social life. Always looking for a bathroom. I like you had it bad my whole colon was toast. This past September I had one of 3 surgeries to have my colon removed and have a j pouch. I was so bad I needed it done my colon was so beat up my doc told me when he was removing it it was just falling apart in his hands one of the worst colons hes ever seen. Recently I had the second surgery where they went in and made my jpouch and the last one im having in April is the take down where I wont need to bad anymore and I will hopefully be able to go to the bathroom normally again. If you have any questions let me know I been through it all brcook2323@yahoo.com

    Stay Strong,
    Bryan

  8. Natalie February 7, 2014 at 12:08 pm #

    Bev –

    Thanks so much Bev. YOU are the true inspiration to all of us! Like I said….God bless you. If it wasn ‘t for you, I probably would not be in remission!! :-)

    Adam –

    Did you happen to read the web link I included above? I am really interested to know if there is a connection between sleep disorders and UC. I have been reading this newsletter for over a year now and no one has ever commented on the subject. I even asked above if any UCer’s out there had any sleep disorders and no one commented. In all your research, did you ever hear anything about the connection???

    • bev February 7, 2014 at 12:13 pm #

      :)

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