I’m 37. Living in Ontario Canada. Originally from the south of England (UK). Was diagnosed with colitis in 2001 after a few years of symptoms. Things got pretty bad trying to get someone to take me seriously. I have had many different meds over the years. Been on Asacol (800mg tablets x 6 per day) for a long time now. I do not think they’re working. Moved to Canada 3 years ago. Had a temporary work visa for 2 years. Now going through process for permanent residency. Currently have no health coverage which is worrying and costly. Also not allowed to work or travel.
Some more about me:
I like to be active and outdoors. I love my dog, Maggie. She was a surprise gift from my husband almost 2 years ago. I used to enjoy cooking and baking. Not so into baking anymore as I can’t eat sweet treats anymore.
I used to be a dental assistant and part time bar tender. I gave up all that glamor to complete an honors degree in English Literature & Language with Creative Writing. Yes, I love reading and I write.
Currently flaring right now. Have lots of bleeding. The dreaded diarrhea and cramping. No appetite even though I started on 40mg of prednisone! Feeling pretty down as I do not seem to have achieved wellness in the past 2 and half years. Looking into the SCD diet very seriously. I have pan colitis. Was originally diagnosed with right sided and patchy colitis.
How Much TP Does a UCer Use in a Lifetime
So after my first hospital stay back in 2001 it has been a rough roller coaster ride. I used to put my faith in what little information Doctors/Specialists gave.
I am sure we have all met our fair share of people who have forgotten why the joined the medical profession. I’ve been told diet doesn’t matter. That astounded me. I’ve been laughed at by GI’s when I’ve asked questions regarding alternative treatments. And no-one explained that each flare meant inflammation will cause more damage. I understand what chronic means, but I think it only recently hit me. This is not going away. This will get worse. I can’t keep taking these prescribed drugs either.
I got married on September 1st 2012. I was determined to not only look good in my dress. Also I didn’t want to be unwell and attempting many bathroom breaks. That’s just not happening in the dress I wore! So I did lots of research about diet, UC and health. I decided to do a candida cleanse. I bought a kit consisting of probiotics, psyllium, caprillyc acid and calendula. So you had a daily drink made of the psyllium and other 2 liquids. You also followed a strict diet. Very similar to the SCD, except they wanted you to abstane from meat/fish and fruit.
I felt great! Even after just a week. My BM’s were the most normal they’d been EVER! And regular too. I lost weight and I looked good. People I knew kept asking if I’d ‘had something freshened up’!! Meaning had I had Botox or fillers! After sticking to the strict diet for few months, I began to get chest pains. I also found it hard to breathe. I thought it may be the Asacol. We went out for the day as my mum was over for the wedding. I didn’t have my psyllium drink that day. I had no shortness of breathe or pain. These symptoms returned when I had the psyllium again. I of course have an intolerance to it. I also fell off the wagon and went back to including sugary and starchy foods. By Christmas I was flaring.
I have tried many different diets, herbal remedies, probiotics, etc. I feel that either things have not worked for me, caused a flare, or were just so hard to sustain in real life. I don’t want to lose my colon. I still like it, even though it seems to hate me. I feel the SCD may be my last chance to do so.
In the past, I never let UC get me down or stop me doing things. Right now I’m not feeling my usual up beat self. What do you guys do to change your mood? And does anyone have any insight for someone embarking on the SCD for the first time? Thanks guys
Have had lots of different meds in the past. None of them seemed to work. Asacol seemed to have some ok results for a while but now I feel it’s making things worse. Had so many courses of prednisone but I can’t keep putting my body through it.
written by Juliet
submitted in the colitis venting area