Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

You Can Get Your Life Back, I Did

Introduction:

Hi, my name is Lorraine. I am a wife and mother of 2 adult children. When I’m not sick with UC I am a social worker (for the past 26 yrs). I was diagnosed in January 2012.

I was a perfectly healthy woman, very active and enjoying life. I was a new mom to a golden retriever and was walking him 6-7 kilometres a day.

I was prescribed an antibiotic for a head cold in January 2012 and 10 days later I severe bloody diarrhea . I spoke to my family doctor, he told me to stop taking the antibiotic, which I had already done. He said it would probably clear up. Well, five days later, I was admitted to hospital, nothing cleared up. Upon admission to hospital, I received 4 units of blood, (one of many blood transfusions I received in the past year), 2 colonoscopies, and was then diagnosed with UC. My GI put me on prednisone 60 mg, and Mesalazine and sent me home after being hospitalized for 2 weeks. My life has never been the same since. I did NOT have any UC symptoms prior to the antibiotic.

Some more about me:

I am from Ontario, Canada. (the only city in Canada that has produced the most NHL players) just a little trivia!! So, of course, since I am Canadian, I am a hockey nut, and to my female friends thats very odd, I would rather watch hockey than anything else. I know there are lots of other women like me, and thats great. Some people just say its weird, but I have been this way for 50 years.

From the day I was born, it’s been hockey, hockey, hockey.
Growing up with 2 brothers who played hockey really helped.
When hockey season is over, I love to golf and when I wasn’t sick I was training my new Golden Retriever. (who is now 2)
Between that I volunteer for the Cancer Society and Special Olympics.

Previous Colitis Symptoms:

I no longer have symptoms of UC as I had my colon removed in January 2013. Prior to the removal and for one year, I was confined to my home, bed and toilet. I haven’t worked in a year.
You could set your watch by my bathroom visits, every half hour, just like clock work. This went on for, one year, 24 hours a day non stop (I swear).
I only left the house once a month for doctor visits and would then, starve the day before, then diaper up and get the visit over as quickly as possible, so I wouldn’t have an accident.
But, I can honestly say for the entire year of 2012 I only saw the inside of a hospital 3x and the doctors office. My entire life had stopped as I knew it, and thank god for my husband, as I could never have gone through this without him.

You Can Get Your Life Back, I Did

I was diagnosed with Ulcerative Colitis in Jan of 2012 after taking an antibiotic. (yes I was absolutely healthy before this), some doctors say this is not possible and others say it is. It really doesn’t matter it happened, its history. During my incredible year I lived on the toilet, (every half hour), day and night, I cannot express to you, how physically exhausted I was. I was hospitalized 3 times during the year, each because the meds weren’t working and I was literally bleeding to death. Each time I was admitted to hospital I received 4 units of blood, thats adds up to 12 transfusions in a year.

Was sent home, all juiced up, given new meds to try, nothing worked, back in hospital, and on and on. Finally, surgery is discussed and I jump at the opportunity. The doctor explained it all, and I can’t wait. I am so excited, REALLY!!
I did not have the surgery done locally, flew to Toronto, and met the best surgeon ever. She removes my colon and I am home 7 days later, yes wearing a bag. Not just any bag, I call it, my designer bag.

You may not think that as funny, but I do. Humour is a huge part of how I dealt with my UC. My nick name was Puff Daddy, because of the prednisone moon face.

This past year was hell, today, I feel like I have won the lottery.

I know I’m not alone in this strange world of UC, and I hope and pray that every person who suffers finds some type of peace, either by meds or surgery. Just know that surgery is not the end of the world. Yes, there is worse (only death) ha ha, but seriously. Nobody knows I’m wearing…unless I tell, I received lots of nursing support in learning how to adjust to the pouch, and now, its easy and NO more meds, life is good. Most importantly I have my life back. I can go out, do things, I feel human again, not tied down to a toilet. My family and friends are so happy as they see the person I was returning to life.

I hope to be having the j pouch surgery in June. Will let you know how that goes. Patients is a virtue as you all know!
I do have a couple of questions: For someone who has taken Prednisone and stopped, did you experience joint and muscle pain and for how long?

I am still having rectal mucus drainage, but it is still bloody, is this normal.
Thanks for listening and Good Luck to everyone.

Medications:

Initially I was put on Prednisone and remained on that for one year, doses ranged from 60 mg daily to 45 mg.
I think its important to mention that while I was on a high dose of prednisone I did not bleed, as long as the dosage did NOT fall below 45 mg. I was fine, but the doctor was trying to reduce the dosage and when he did the bleeding came back with a vengeance and I would end up in hospital and receive a blood transfusion.

I remained on prednisone till one month post surgery. I was told by a doctor that Prednisone is a miracle drug, but poison to your body. Try to get off it as soon as you can. I lost my memory, I shook all the time,I walked like I was drunk. My hair stopped growing then fell out, my vision was affected and of course I got the moon face.
The first drug that was tried on me was Mesalazine. It made the diarrhea worse. Then the doctor tried Imuran. This drug nearly killed me. I lost 45 pounds, was hospitalized and received another 4 blood transfusion, all while trying to take the Imuran.

The last drug of choice was Remicade. I received 5 infusions over a 6 month period. That did not work either. I was admitted to hospital again after all this for another blood transfusion. One month later I had my colon removed. (Jan 29, 2012)

It is now May 1st and the only thing I am taking is Calcium and Vitamin D, but I am really suffering the side effects of the Prednisone. I have been off prednisone for 6 weeks but the pain I am experiencing is unbelievable. Every joint and muscle hurts, even the bones in my toes ache. Its hard to get out of a chair, as the pain in each hip is excruciating. My body feels like I am 100.
I told the doctor and he says it “should” pass. God I hope so.

written by Lorraine

submitted in the colitis venting area




8 Responses to You Can Get Your Life Back, I Did

  1. bev May 13, 2013 at 1:43 pm #

    HI Lorraine,

    First off…YEY Ontario!! I am from Toronto, myself. Those Leafs are gonna beat the Bruins tonight and go on!! My favorite team. Hopefully…fingers crossed.

    So, you got UC out of the blue after antibiotics?? If I had a nickel for every time I’ve heard this story. I’ve said it before, antibiotics may have been one of modern medicine’s most exciting discoveries….but at what cost to some of us?

    You are wonderful…and now you are UC free!! You deserve this.

    Thank you so much for telling all of us your story. It means the world.

    Get out there and kick life’s ass again…because you can!!

    Bev
    :)

    • Lorraine May 13, 2013 at 3:18 pm #

      Hi Bev
      Go Leafs Go!!!
      Thanks for the great words of encouragement, All the best to you to.

      • bev May 13, 2013 at 9:55 pm #

        Dammit…we had it…and then we lost it…dammit…

        Oh well, I guess there’s always next year.

  2. Jen From UK
    Jen May 13, 2013 at 2:30 pm #

    Inspirational!

    I was only pred 7 months, swapped to budesonide… Still on that but had dreadful pred withdrawal joint/muscle ache for 4 weeks ended up in hospital getting scanned. Had acupuncture and took lots of tramadol as I have 2 small boys to keep up with and that helped, hope it passes soon xxx

    • Lorraine May 13, 2013 at 3:14 pm #

      Jen I really give you credit, and wish you strength, I can’t imagine having this disease and looking after children.
      I wish you well and thanks for the info. I am 2 month post prednisone and every bone and muscle in my body is still aching. I can only hope it goes away. Taking Tylenol 3, but no relief.
      God Bless and good luck.

  3. Wendy
    Wendy May 15, 2013 at 8:49 pm #

    I was on prednisone twice. The taper off was as horrible as you described it and I was only on it for about six months each time. Even my eyes hurt, behind my eyeballs. I would curl up in a ball and dread waking up (well, I was already up, but getting out of the bed and doing anything). I am not on prednisone right now or any other drug but I feel, when I’m not in a flare, no bone aches at all, so I think it does go away. Doctors also commented that it was unusal that I lost ten pounds on prednisone. They said that’s unusual. I hope to hear more about your j-pouch surgery.

  4. Lorraine May 18, 2013 at 2:15 pm #

    Wendy thanks for the info, it all helps with the healing process. I wish you well and hope you stay flare up free. In one way I’m glad I’ve had the surgery, I can’t imagine living like this (always waiting for the “flare”), I give you and everyone else credit, you are strong.

  5. Wendy
    Wendy May 18, 2013 at 8:08 pm #

    I didn’t mention, I really hope you feel better soon and it is just taper from the prednisone. Best wishes for a full and healthy recovery.

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