Ulcerative colitis has greatly changed my life.
From not having any medical history of illnesses to waking up sick one day and the doctor saying I have this chronic condition and might have to live with it. I have lost quite a bunch of friends because colitis is an embarrassing condition. I feel like they think they might contract the disease by hanging around me. Of course there are those who feel like I complain too much when in real sense I am just sharing what I am feeling at that moment.
I feel embarrassed about the doctor checking on my butt every time. It is very uncomfortable.
My family has been the most supportive people in my life since pre-diagnosis and even after the diagnosis. Whenever I’m at home my parents ensure I eat what does not aggravate my symptoms. When leaving the house they assist me to get all that I may require while I’m outdoors. They allow me to rant as need arises. They offer that listening ear and provide moral and emotional support. My mum always ensures there’s bone broth at home every weekend since I travel home every weekend. My brothers are always concerned about how I’m doing and how I’m feeling. They also assist me to acquire maintenance medication since they’re quite expensive here in Kenya.
When I have active symptoms, they empathize with me. To them I am not a bother. They’re happiest moment is when I am free of symptoms such as pain.
Since I was diagnosed with UC, I am most concerned about having a flare up and how long one lasts. My other major concern is the fact that most of the medications have severe side effects, that could be life threatening. The medication and diet are also quite something. It is very expensive to eat healthy and to acquire drugs.
But I have learned to take it easy and handle every circumstance a day at a time. I am more determined to win this Ulcerative colitis now than I was when it was first mentioned to me.
Some more background:
- I am musical. I enjoy playing the piano.
- Since my UC diagnosis I have loved the art of preparing meals. It gives me a lot of joy and satisfaction.
- I am from Kenya, in Africa, currently residing in the capital city of Nairobi
- I got diagnosed just after graduating from university having cleared my undergrad. I had only worked for about two months.
I still suffer from urgency to go to the bathroom. Currently having about 4 bowel movements during the day and about 6 during the night but this seems to be reducing since I stopped using mesacol.
Stools are not properly formed. I also have gas and abdominal cramping.
I experience fatigue in the morning but as the day unfolds I get better and stronger.
Sometimes there is depression and loneliness. Hyperactivity once in a while due to the prednisone.
Bloody diarrhea sometimes. Painful bowel movements.
Medications / Supplements :
When I was diagnosed I was put on:
-Prednisone 40mg->20mg->10mg->5mg/day for a month.
-Esomeprazole(I had some slight gastritis)
-Ranferon Iron supplement
Of late I learnt that mesacol was making my symptoms worse. I am currently on prednisone and ranferon. I am also taking follic acid tablets 5mg a day since my haemoglobin count has been quite low.
I have less symptoms when taking prednisone and it gives me much energy. I have also introduced centrum advanced multivitamin to boost up minerals and vitamins.
written by J.Ngigi Wangere
submitted in the colitis venting area