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