I have had Ulcerative Colitis for 9 years – it started when I returned from a missionary trip to Nicaragua in June 2004. I thought I had parasites, and sometimes still do – but after several different diagnosis including Proctitis, Crohn’s and IBS – the ultimate diagnosis is UC.
Some more about me:
I live in Virginia Beach, Va – 44 yrs – I work for a military contractor but my greatest love is animals – I rescue, volunteer and foster when I am not at work. I recently have been certified in Reiki II and hope to use this energy to help animals. I used to be very active – running 5 times a week, doing Pilates, weight training – my goal is to be able to do it again soon!
My symptoms arise when I am active. ie.: walking, extreme urgency – sometimes diarrhea bloody w/ mucus to formed stools all in the same day. I have no control most of the time and wear protection. Sometimes I go from 5 times a day to 20 – 75% of the time it is mucus mixed w/ blood.
Leaky Butt Syndrome
I go in and out of remission -remission has never been more than 4 months. I despise this disease – I cannot walk my dogs anymore, working is a struggle every single day – I miss fun times and activities with friends.
I am on my fourth DR – he is the first one who agreed to take my colon out if I should want to – he doesn’t push Remicade, Imuran or Humira on me – he prex me VSL #3 which other DR’s would not and he actually listens. I want to cure myself and have been trying for years now – I even drank small amounts of bleach for a month and my symptoms went away for 4 months – I started running again and walking my dogs, but then they came back. I have also had all of my old fillings taken and replaced because I read that they may cause UC like symptoms. Light Force Therapy with a practicing Chiropractor brought me relief for months, but I cannot afford the $50 payment anymore – Accupuncture seemed to bring some relief but that is $75 every time – needless to say, I wish Insurance would cover these natural ways of healing instead of backing the Pharmaceutical world we live in. I don’t have a problem with DR’s as long as they listen and are open to alternative method s of healing.
I have a very supportive family and net work of friends who guide me and comfort me. I still go out and do things, but I always have a change of clothes etc…
My biggest fear is that my UC will turn into colon cancer – I plan on living a long time and want to get back some of the last 9 years that I have lost!
I have been on all of the medications except Remicade and Imuran because I refuse to be on them. I have always lived a health lifestyle and have been active my whole life until now. My diet now consists of foods in the Paleo plan and all organic – except with some dairy now and then in the form of cheese. I took myself off prednisone – was on for 5 years straight and now only take 2 Sulfasalazine with Tumeric, B-12, Vit C-1000, Vit D3, Vit E, Krill Oil, and Garlic Oil. Was doing great for last 4 months and now symptoms are coming back again. I have discovered a possible new way to treat UC with a drug called LDN – Low Dose Naltrexone – it has proven relief in other autoimmune disease such as Lupus, Fibromyalgia, Crohns, MS and autism – some have come into complete remission. It must come from a compounding pharmacy. The reason DR’s don’t tell us about it is because it is generic – no one will make money from it. I am making contacts to get a prescription – I will try anything at this time – it comes in lotion form and in pill form.
written by Cheryl