I’ve been getting lots of questions lately about ulcerative colitis so I thought it would be useful to write a bit about this disease. Please keep in mind that I’m not a doctor, this information is what I’ve read, been told and learned first-hand about ulcerative colitis.
- Ulcerative colitis is classified as an Inflammatory Bowel Disease. Crohn’s Disease is also an Inflammatory Bowel Disease. Inflammatory Bowel Disease is often called IBD. IBD and IBS are not the same thing.
- 1 in 160 Canadians have ulcerative colitis or Crohn’s Disease.
- Ulcerative colitis affects the large intestine – also called the bowel or the colon.
- There is no cure for ulcerative colitis.
- The symptoms of ulcerative colitis include: cramping, bloody diarrhea, mucus diarrhea, uncontrollable bowel movements (yes – this means not making it to the bathroom in time), swelling, joint pain, fatigue, anemia, dehydration, nausea, and fever.
- There is no known cause of ulcerative colitis. Doctors don’t know why some people are afflicted with this disease and others are not. Some speculate that there is a genetic connection. Others say it is stress related. Others say it is diet related. Others say it is environmental. No one knows. Because the cause cannot be found – the cure cannot be found.
- Ulcerative colitis is treated with drugs, diet changes, and ultimately the removal of the colon.
- People with ulcerative colitis will be in a periods of remission and flares. When in remission, there are no symptoms of ulcerative colitis – but ulcerative colitis is always lurking. When in a flare, the ulcerative colitis symptoms are present. A remission can last for one day or 15 years. A flare can last for one day or 15 years (though no doctor would allow a patient be in a flare for 15 years). In other words – it is hard to know what the disease will do – when it will show up and how long you’ll be in flare or remission.
- Many people make dietary changes to help alleviate their ulcerative colitis symptoms and the risk of flare. Some people remove gluten and dairy from their diets. Others follow the Specific Carbohydrate Diet. Others eat a low fiber/low residue diet. Others find that dietary changes don’t make a difference.
- When in a flare it is important to avoid foods high in fiber: raw vegetables, most fruit, beans and most grains. Sometimes these dietary changes help. Other times they don’t. Some days it seems like no food will stay in your body. Some people become “afraid” of food. Other times you feel like eating “bad” foods because it really doesn’t make a difference what you eat – it is going to come out.
- Often people with ulcerative colitis don’t look sick. Never say to someone with ulcerative colitis “but you don’t look sick”. On the inside, we are in extreme pain and our main focus is on identifying the nearest toilet. Some people with ulcerative colitis are very thin and others not so much – this depends on how you react to your medication, how swollen you get due to the inflammation and your overall body composition.
- At its worst, ulcerative colitis flares can force you to be admitted to the hospital. A hospital stay can range from three days to three months. It just depends on how you respond to treatment.
- If you know someone with ulcerative colitis and they abruptly walk away from your conversation, quickly stand up and leave a meeting, or suddenly pull over to the side of the road – this is because they have to. There is no time to wait.
- Flares can be different for every single person. For some people there is lots of bright red blood in the toilet. For others there is lots of muccus. For others there is a combination of both. Often people will have false urges.
- Ulcerative colitis can be an isolating disease. Many people are shy to discuss the disease because the symptoms are “embarrassing”. This can often result in people not telling their doctors that they are experiencing symptoms.
Well, that is my “brain dump” on ulcerative colitis. I have experienced all of the symptoms mentioned above. I have not made it to the bathroom in time. I have periods of overwhelming fatigue. Yes, I can still ride my bike to and from work. But I cannot push my body hard. It seems like my ulcerative colitis is brought on by the stress hard training places on my body. I try to avoid gluten and dairy at all times – but if you see me eating a cookie from Starbucks – don’t judge – I’m likely having a very rough day and just need to “feel normal”. I often carry a spare pair of pants with me when I’m in a flare – and yes, I’ve crapped myself – choose a place and it has happened. I don’t look sick. I’m tanned. I’m not super skinny. But I am sick. It is hard to not get depressed when in an ulcerative colitis flare. There are days when I just want my colon taken out (like now). Ulcerative colitis is a rotten disease.
To learn more about ulcerative colitis, visit the Crohn’s and Colitis Foundation of Canada website and the IHaveUC.com website (if you search for my name you’ll find lots of articles I’ve written about ulcerative colitis).