My name is Vicki. I am an Arizona resident and was diagnosed with UC in 1990 although I had irritable bowel disease from the time I was in my teens. I am a medically retired RN. I love to be outside and that is why I moved to Arizona six years ago. I hike, bike, garden and have five dogs.
20 Years Post Colitis Diagnosis and Colectomy:
I was diagnosed with ulcerative colitis in 1990 and in 1991 I had my colon removed.( I had no idea of the life long struggle ahead of me.) A J-pouch was constructed out of my small intestine and after three months I no longer had to have the ostomy bag. I was able to go ‘normally’. All this while raising an infant and a two year old and during my first year of college. It took me five years to get a two year degree in nursing but I became an RN and a very good one learning from my experience as a patient. All that was 20 some years ago and I have done everything I would have with a colon but always with the knowledge of where the best public bathrooms are !!
I also keep a roll of bath tissue
in my car for emergencies.
If I was asked how I have coped with going to the bathroom 6-10 times a day for thirty years it would be good reading material and a sense of humor but I would like to sleep eight hours with out going to the bathroom.
Medically the whole experience was a nightmare. I finally found a great Doctor and after the surgery he moved to Boston. Since (30 yrs) then I haven’t found a doctor that I feel really understands and a big problem has been the side effects of drugs. The colon has a purpose. One is It reabsorbs fluids. Medications such as antihistamines pull fluids from the body into the small bowel and those fluids are reabsorbed in the colon. If there is no colon to reabsorb then there is severe diarrhea. It is always good to have a conversation with the pharmacist even before taking OTC meds.
Main problem now is I contacted hepatitis C from the many blood transfusions. This was before blood was screened for hep c.
Even though I no longer have a colon and have been told I am cured I still sometimes feel as if I am physically having a flare up, just without the bleeding colon. I will have mouth sores and fatigue similar to when I had UC and I would like to know if anyone else has these symptoms.
I did not have very good results with the medication. I wish I had known about the relationship between quitting smoking and colitis. I just wonder if a couple cigarettes a day or a nicotine patch would have helped calm the colitis. Not that I would ever encourage smoking but I did become a hundred times sicker after giving up the butts.
written by Vicki