Ulcerative Colitis

I was diagnosed with Ulcerative Colitis almost exactly five years ago.

You’ve probably never heard of it, you could probably make an educated guess though. Ulcerative suggests ulcers and you might even be able to see the resemblance between colitis and colon.

Ulcerative Colitis (UC) is a chronic Inflammatory Bowel Disease (IBD). Don’t get the IBD mixed up with IBS (Inflammatory Bowel Syndrome), though.

The two main IBD types are Ulcerative Colitis and Crohn’s Disease.

In simple terms; the inside of my large intestine has ulcers which, when I’m not in remission, bleed.

Bleeding isn’t the only symptom though, I get severe pain and stomach cramps, diarrhea, and (luckily this one rarely happens for me) vomiting.

At its worst it’s common for me to go to the toilet nine times a day, and most of the time the urge to go is sudden, so I try and stay in the house because one of my ultimate fears is not being able to find a public toilet in time.

The loss of blood makes me severely anemic and doctors try and get me to have blood transfusions. As well as this, I have developed peripheral arthritis which has kept me bed-ridden for days on end in agony. The drugs they’ve given me to help me deal with the pain (500mg Codine as well as 500mg Naproxen) worsen the symptoms of my IBD.

Ulcerative Colitis is, by far, not one of the worst diseases out there, but the difference is that it’s embarrassing.

Nobody want’s to talk about it because it’s just an embarrassing thing to have, to go through and even though my friends know and my family know, nobody really asks me anything or discusses anything because it’s just embarrassing.

And because nobody wants to talk about it, nobody really knows what it is and that leads to more embarrassment because when I tell people that I can’t have alcohol, or certain foods and drinks, they ask why. So I tell them what I have. Then because they’ve never heard of it, they ask what it is, so I explain.

I’ve had mixed reactions, some people wrinkle their nose and say “Ew” and back away like they’re going to catch it by being close to me. Some people just change the subject and some people ask questions. I don’t mind either of the latter reactions because often those people look it up later and find out more then they aren’t ignorant for the next person they meet with colitis.

The thing is, Colitis isn’t contagious, we don’t even know what the cause is, it may be environmental factors, stress or even inherited, maybe even a combination of those three.

There is only one “cure” for Ulcerative Colitis and that is the removal of the colon (large intestine). This process is a long and hard one and takes years of healing and relearning to use the toilet again, because they eventually fashion your small intestine into a colon. Over here in the United Kingdom this operation is only performed on patients who would die without it.

So if you know someone who doesn’t go out much, doesn’t drink, seems to be a bit of a fussy eater, who seems to be wasting away, thin and pale. Maybe they have what I have, maybe they are struggling to get control of their life, just like I was.

I once heard someone talking about someone they knew who had IBD, one thing they said was “I don’t know why they’re making such a big fuss, it’s not like they’re going to die”

You don’t die of IBD the same way you don’t die of anorexia; you die of malnutrition, you can die from cancer (because we’re at an increased risk, 20% of us develop tumors within the first 10 years of having the disease), and infection (toxic megacolon),

If that wasn’t enough we’re prone to perforation of the intestine, some eye diseases, liver disease, Ankylosing spondylitis (spinal disease), Pyoderma gangrenosum (a disease which causes deep ulcers to form, usually on the legs) and the inflammation of fat cells under your skin.

IBD is a horrible thing to have, and to cope with so if you know somebody with IBD and you can hardly tell, it’s not because it’s not a bad disease, it’s because they’re a strong person and they are coping well.

All we need now is more publicity, we need to raise awareness about what IBD is and how it can affect people.

The main question I get asked is “When are you going to be cured?” the answer is, unless I’m about to die, then never. IBD isn’t something you cure, it’s something you have to learn to live with.