My name is Sally and I have lived in various countries, taking my ulcerative colitis with me where ever I go. Born in South Africa, my UC started in Canada, I was ok in England, diagnosed in Australia (6 years ago) and well, pooped in a plastic bag on my sister-in-law’s bedroom floor in a moment of desperation (and occupied bathrooms) in Brazil – fun! Now living in an apartment with 2 bathrooms – makes the world of difference!
Some more about me:
I’m from Canada, I love to travel, I love to be in remission ;)
Symptoms include – urgency, blood, volcanic like explosions, watery stools and lately, very little shame…
I have tried many things from enemas, salofalk granules, other things that I can’t remember and the only thing that worked so far was Prednisone. I have taken it twice (2 months each time) over the years and worked like a charm.
Now I am living in Brazil and was in remission for 2 years (yes – shocked to go that long but it was great while it lasted). I just had a flare (3 weeks ago and going strong- the flare that is, not me) and returned to the doctor to then be strongly denied my medication (Prednisone) by 2 different doctors (going to the 3rd tomorrow)! Two years ago I was in Brazil and received my Prednisone without any issues.
Since then they are marketing the “new” drug on the block: Mesalazine … but hey, … isn’t that the same as Salofalk (which I think actually made me worse!?) New? They said it probably wasn’t around when I last saw the doctor. I checked the prices at the pharmacy and 1 month supply of Prednisone is R$33 ($15) and Mesalazine is R$250 ($113). Big difference when you know what works and what doesn’t! I told the docs that I have done my years of experimenting and I know what I need to get better but they refuse to give me my solution – they said it is too dangerous! This now puts me in the vicious cycle of stress because I know there is my “temporary” solution just there… so close … almost in reach at the pharmacy but I can’t get it!
I have figured it out – laboratories! Yup – both doctors prescribed me the exact same medication/brand/laboratory. So instead of helping me to help myself, I am caught in this money making web. So if you live in Brazil and you see a tall blonde girl pushing everyone out of the way to get to the bathroom, please let me go ahead of you because if doctors can’t help me then maybe you can…
So what do I do? Fly to Australia, Canada or the UK to get Prednisone… I guess I will have too … but how would I survive the flight with the seatbelt sign turned on is beyond me :(
I know I shouldn’t be dependent on Prednisone but I am not a beginner at this disease and Brazil has some of the best doctors in the world (and trains the most doctors in the world).
Shame Prednisone is so cheap – if it was expensive, they would give it to me…
Curious- any results on Mesalazine and if it has worked for anyone?
Something you may want to add as part of your next survey – I am curious if anyone finds there is a psychological connecting relating to urgency? I find if I know I can’t get to a bathroom I am ok or semi-ok, when I get closer to one the urgency picks up or I can be totally ok and then put the key in my front door and then it is a few moments of will I or won’t I make it…”
written by Sally M
submitted in the colitis venting area
Thanks so much for sharing, and especially for keeping your funny side alive even through a flare up. AND, congrats to you and all the travel you’re getting under your belt! So as for the mesalazine…Great question once again, and yes indeed there are tons of different ideas/results with regards to that class of medication. As you may have learned, Mesalazine is within the 5-ASA class of drugs, and there’s actually several different medications that fit that bill. What you should do is go and read through this page from wikipedia about mesalazine: http://en.wikipedia.org/wiki/Mesalazine.
You’ll see that there’s quite a few meds (including salofalk) which are under that 5-ASA group.
If you want to read some actual reviews, you can go to the ASACOL reviews page for some detailed reviews of that particular medicaiton too. Here’s the page: https://ihaveuc.com/asacol-reviews/
AND, about the urgency idea. You are right on with your thinking….(I think). Survey would be great on that and I’ll see what I can do about getting it into the survey mix. Would be interesting if others had the same deal as you and me.
Best to you Sally. I’m kinda shocked that the docs wouldn’t throw a prednisone prescription your way since its the most common band aid to flare ups from western med docs. Please keep us posted on how things go.
You’ll be back in remission soon, keep your head up Sally:)