My name is Wendy, 59 years old, and currently very frustrated with the re-emergence of colitis symptoms just as I thought I had my life sorted and I could start doing things I enjoy, like traveling overseas and getting more involved in community projects and causes.
Some more about me:
I have had UC for 15 years and for the last three years or so have basically been in remission. Until now that is. I live in New Zealand, the land of sunshine and earthquakes, have three adult children, am an ex-journalist, love cycling, painting, photography, various crafts, soccer, rugby, and would dearly love to travel again should I get this damn disease under control. (hear the frustration? Yup.)
For the last month I have had typical symptoms for my UC proctitis, that is constipation, bleeding, urgency (with no result), low mood, irritability. The difference currently is the constant bleeding, even without motions which is not quite normal for me. The problem for me is getting out the front door to work/social events without feeling that the day is going to be a disaster. I’m not sure that what I’m doing to ensure it won’t be a bigger disaster, and that’s my concern.
Homemade Juices and UC Proctitis
OK so what I have found is that the constipation itself is a big problem for me socially because of the embarrassment /uncertainty factor – wind, constant trips to the loo etc. I found that homemade fruit juices, especially apple juices, helped with the constipation and that if I took them with the Pentasa, had an instant result. I’ve been doing this in the morning because then I’m out the door and basically OK for the day until about 10pm at night when I tend to get a few symptoms again.
Is what I’m doing a bad idea???
I’m on two Pentasa (mesaline 500g) morning and two at night. I also have a prescription for Asacol suppositories which is what I have used if the Pentasa doesn’t do the trick, but I don’t use it for more than a week at a time. It does work when I do though). I have recently been to a naturopath who has made up herbal teas for me etc. These did seem to help re wind etc but the bleeding seems to b e a constant. I basically follow a SCD diet, although I feel I eat too much meat, and it’s the end of summer here so I eat a lot of raw vegetables but this is gradually being replaced with cooked vegetables as the weather gets colder. I have also joined a UC/colitis support group which is fairly low key and am interested also in anyone’s ideas for getting information out there, promoting the group/fundraising. I’d really like to get to the national conference here one day because I’m interested in whatever the latest research might have thrown up, as living in a semi-rural area means the only other access is through the internet, and very occasionally newspaper articles or from fellow UC’ers.
written by Wendy
“I’m curious about the possibility of a New Zealand/Australian “branch” of this site; not to break away but just to identify, because sometimes I think food availability, climate, lifestyle,names of medication, access to medical care, even genetic makeup might be more relevant from someone in the same area. I am especially interested in sharing the names of any particular doctors, or others (such as the naturopath I’ve seen) who might possibly help others.”
Thank you so much for sharing your story with all of us.
I think you’ve got a super interesting idea, as far as a localized section/version of the site. And, your reasoning for why this might be a good idea is excellent and for sure there’s other who think the same. I’ll do some thinking about this over the next several months, and maybe I’ll come up with an easy way to make this type of functionality possible on the site. For now, what you can always do is go down to the “search” box at the bottom of every page and type in words like “Australia” or “Quebec” and when you click the search button, our friends at Google will scan the whole site for pages with those words. Not as easy as I’m sure you are hoping, but at least a temporary fix to get you quick access to a localized area within the site.
One thing that is already in place which I’m guessing you don’t know about is the “Find a Doctor List”
CHECK IT OUT: https://ihaveuc.com/find-a-doctor-near-you/
It’s international, upon just checking it out, there’s 1 doctor listed from NZ on there. Every single doctor listed made it to that list because another UC’er from this site submitted a doctor review.(There’s a link for submitting a doctor review at the top of that page – or you can write a review here for your doctor: write a doctor review – click here
I try to update that list as often as possible, and whenever I have ten reviews from others waiting in my inbox, I post them all up together. That list is going to keep on growing, so please make use of it and have your friends in your support group do the same. We need some more NZ docs on there darn it!
Best of luck to you Wendy in getting past the symptoms that have temporarily hit you. I’m sure you know, but if the evil spirits of UC are trying to make you forget…keep your head up as your symptoms won’t go on forever. You’ll be back traveling again for sure.