Where to start… well, my name is Amanda. I live in Toronto, Ontario, Canada with my partner, my 2 cats and my 2 sugar gliders. Currently I work as a receptionist for a really great Travel Company, although I hope to be a Wedding Planner in the next few years.
Some more about her:
I love to plan and design weddings (at the moment, these aren’t real weddings). I also volunteer for a great organization The Brides’ Project and watch way more Say Yes to the Dress, My Fair Wedding, Wedding SOS, etc than someone should.
Amanda’s Current Colitis Symptoms:
Currently, I only have gas and bloating when I eat something “bad” (dairy or gluten, etc)
Is It All in My Head?
In August 2011 (can’t believe that was 3 years ago!), I noticed a little bit of blood in my stool. Unsure, I waited until December 2011 to finally tell my doctor. I received my first colonoscopy in February 2012. This was the worst thing I ever did for my colitis. My symptoms went from a tiny bit of blood before my colonoscopy (a negligible amount in hindsight) to what I have dealt with for the last 2.5 years “Severe Refractory Proctitis”. (My doctor switches from saying colitis to proctitis, hasn’t been more than 35cm of disease… so I’ll stick to UC for simplicity sake).
For the past 2.5 years I tried prednisone, salofalk enemas (Mesalazine), salofalk suppositories, more prednisone, naturopathy, diet change and then more prednisone which I was on 10mg for the last year. Even with all of this prednisone, I never went into remission and my symptoms were still terrible.
I was terrified to try immunosuppressive medication as I already had an awful immune system. About a month ago, I agreed to follow this very interesting bedtime routine.
1. Grind the contents of 3 capsules of entocourt (9mg) using a mortar and pestle.
2. Pour into a glass with ½ a salofalk enema and 40ml of water
4. Put into enema syringe, and… You know the rest.
While this seems to have been a “miracle” treatment for me, I can’t get past the feeling of being sick.
I’m not talking about the cramping, discomfort, pain or embarrassment… I’m talking about the mental sick.
I used to LOVE going out for ice cream, or brownies, or tarts, but I can’t do anything of those thing because I have had to essentially cut out dairy, gluten and refined sugar. My anxiety is really high all the time, I feel unmotivated (which is strange because most of my friends think I am incredibly motivated) and most importantly I am always mentally exhausted.
I don’t know how to get past it. I go on this website almost daily because I feel connected to you guys. No matter how much I try and explain to my boyfriend or my family, they just don’t understand like you do. I get excited (is that the right word) when someone at work says “my Mom has colitis too”. I try to do things to keep myself busy, working, gym, going out, spending time with pets, my partner, etc.
What do you do to get past the mentally draining aspects of having UC? Even though I’m feeling better… I don’t feel better.
Thank you in advance!
Medications / Supplements:
Prednisone -> 40mg worked, 10mg didn’t… got so chubby on this medication
Salofalk enemas -> didnt notice a difference
Salofalk suppositories -> didn’t notice a difference
Naturopath -> Lead me in the right direction regarding cutting out gluten, dairy and sugar… I also cannot eat potato chips, anything deep fried or tomatoes
Juicing -> after watching Super Juice Me…. time consuming, but tasty! Did it help my UC? Not sure, I didn’t keep it up for a long time and certainly didn’t drink ONLY juice for 28 days.
written by Amanda C
submitted in the colitis venting area