my name is Kim,living in Johannesburg, South Africa.
Diagnosed with LUPUS May 1976 and since have been diagnosed with UC,Chrohns IBD and have a variety of medical conditions to numerous to mention and developed from LUPUS.
Have severe osteoporosis from years of steroids and was wheelchair bound for 5 years,walk now but still have mobility problems,joint and major gut problems,have lost 15 kgs and battle to eat as causes excruciating abdominal pain and the runs. Now have major lung problems COPD.
Daily meds Prednisone Lasix, Slow K, Stemetil also Uniphyll, Beclate, Serevent & Serevent Puffers and lots of continuous Antibiotics and Probiotics to try and counter act the numerous side effects.
I am so happy to connect with Adams website which I found by accident on Digestive Health website and love communication with people worldwide.
Some more about me:
I am Scottish by birth born in the Highlands of Scotland and South African by choice and have lived in Durban for 3 years and now reside in Johannesburg and I am a retired Pharmacist and worked in the Cosmetic & Pharmaceutical Industries as a Manufacturing Chemist so have a thorough knowledge of drugs and done lots of research on Steroids,side effects etc.
Am a former City Councillor and still very involved in SA politics, Community Projects and an ardent advocate for the lobbying for Disabled rights as Chair of Health & Social Development for the Johannesburg Disability Forum (Jdf).
I am known to be very outspoken,determined and stubborn as a mule and highly controversial and known in certain circles as the ” Dragon Lady ” as I will fight any cause on behalf of the underdog.
I love doing Astrology (when I have the time ) and have studied the charts for 30 years.
I live alone at present in Parkhurst with my three beloved dogs and my darling cat Haley and work from home as a consultant on Council Related Issues on the behalf of clients and deal daily with the Johannesburg City Council. I also work with LUPUS patients giving them info and tips on coping with LUPUS in ones daily life.
Colitis and Lupus Symptoms:
As previously stated LUPUS in the GUT will give rise to every GI problem imaginable which I have highlighted,so wont repeat again,however over the years I have actually been diagnosed with Bladder Cancer (Which I did have many years ago ) in the last 7 years Bowel,Colon,Stomach Cancer ?
Have had two major abdominal ops December 2010 and May 2012 Bowel resection and the re attachement of ruptured intestines,removal Gall Bladder. Experience excruciating abdominal pain usually about half an hour after eating,bloating and then either vomiting or the runs,keep book of cross words in the loo along with stacks of loo paper,sometimes runs so bad I am incontinent and from a very sociable person in society I have become reclusive as its so unpredictable.
Last night I was actually screaming with pain on the loo and I can take a lot of pain, so that was a really bad flare up.I find my joints and spine get very painfull,but I carry on working daily and don’t take pain killers during the day,but get very fatigued. Take two Buscopan Co for abdominal pain when it hits, but today although very weak I am still here and typing away on Victoria cos I am a Victor and not a Victim !
Lupus Crohn’s and Colitis
I think I have already given my story about myself my meds,symptoms etc,so nothing further to add there,but I do have a few tips on coping with Predisone or any Steroids if anyone out there is intrested I would be only to happy to assist.
I can only say that you must watch your diet its a bit of trial and error,my food intake is very,very limited and I cant digest any vegatables or fruits other than bananas,no citrus fruits or juices, my present diet:
breakfast Future Life with Yogort and Albumax a supplement for kidney problems with Honey.
Lunch – Glass of Ensure Vanilla and a Banana or a cheese sandwich on White Bread.
Supper – Potato Salad,a few slices Chicken Breast, Boiled Egg that waht I live on at present and I might sneak in a choclate bar with consequences.
How have my problems changed my life.
Considerably, as I had to retire from my beloved profession as a Manufacturing Pharmacist due to suden serious reactions to chemicals, also spent 5 years in a wheelchair,still do when necessary and also have Disability Scooter, Walker, Elbow Crutches, Walking Stick, Leg Brace on my Left Leg and numerous braces this due to LUPUS.
Gutwise,I have become anti social,as I find that friends and people in general cant understand that you cannot eat like a normal person and if you take your own food they get offended,so you either eat to be polite and suffer in agony as a result or you just don’t go out.I live alone now having been married and divorced (3) times and prefer to be on my own now,its not easy and I face many challenges daily,but that’s the way my life has developed and you either accept it or leave the planet,which I do contemplate now and again.I really am inspired by Adams website being able to communicate with others with GI problems,my friends ? would never discuss what we discuss – TABOO subject my dears.
“Hi Adam – Absolutely love your website but I have great difficulty in making contact with you and a lot of my emails have just bounced back since my first contact with you.Can you advise what I am doing wrong.With Love & Light Kim”
What up to J-Bird and the rest of South Africa! I’m bummed to hear you’ve had so much trouble in reaching me, I’m pretty sure my inbox doesn’t have anything against former hosts of the world cup. I can tell you that there was a very brief period in April where my email was not working propertly (just 1 day) and that may very well have been the issue. But from here on out, you and everyone else can reach me at the same email I’ve had for 5 years now: (firstname.lastname@example.org) or you can submit a form from the “contact” page.
I hope that helps you for next time and thanks so much for sharing your story. It’s great to see another fighter duking it out with UC south of the equator! And an even bigger congrats to you for all the public service you have done and continue to do!! Amazing!