Day 15: Am I cured of Ulcerative Colitis?

It's occurred to me that since my last surgery to remove the final part of my colon (the 'rectum stump'), I now have no large bowel left at all in my body. Although these operations have been huge in their impact on my life, it's now finally possible to consider the fact that although new issues may come about as a result of surgery, whatever they are, at least they're not Ulcerative Colitis.

Without a colon, there is nothing left in my body to attack, meaning that I no longer suffer from the urgency, abdominal cramps and bloody diarrhea that comes hand in hand with UC. My small bowel, according to my medical team, is extremely healthy, and free from disease.

From a medical perspective, removing the colon is a 'cure' for this disease, the term 'curative' meaning no more symptoms typical of the condition. I now fit that description.

Of course, I know what you're probably thinking. "But isn't IBD 'incurable'?" It's a question that's difficult to answer. For example, Crohn's disease really is incurable, because of its tendency to appear in multiple parts of the body e.g. large/small bowels, stomach, oesophagus, mouth. You can't surgically remove all of these things, meaning that it's impossible to cut out certain parts and guarantee that the disease won't reappear elsewhere. The same goes for people whose diagnosis is complex or uncertain, for example 'Crohn's colitis', where the disease can't be confidently identified as being one or the other.

Some people would also argue that even for patients diagnosed with Ulcerative Colitis, the future is always uncertain because of the possibility that they will be re-diagnosed with Crohn's at a later date. I spent a long time confused about this, so asked my consultant for definitive answers on facts and figures. It's a common myth that Ulcerative Colitis can "turn into" Crohn's disease. This is NOT TRUE. For an absolute fact, from the doctor's own mouth. If a person with UC is diagnosed with Crohn's at a later date, it was ALWAYS Crohn's disease, but at the time of diagnosis, it looked like UC. Bear in mind that the two diseases are extremely similar in their characteristics, and occasionally, even the most experienced medics may confuse one for the other.

For example, at the time of a UC diagnosis that will actually turn out to be Crohn's, the disease may appear only in the colon. However, a decade down the line, disease may turn up in parts of the small intestine too, and then the diagnosis will be reconsidered. Statistically, this misdiagnosis apparently happens in around 10% of cases, a percentage that is decreasing all the time as biopsy techniques/understanding of both diseases improves.

Cured?

But regardless of this, for a person with definitive, clear-cut Ulcerative Colitis, removing the colon is curative of IBD symptoms. Some people consider this to be a real "cure". Others don't. So what's the logic behind this?

People who see colon-removal as a cure may consider the following things:
- They no longer have symptoms of UC. Sure, they may have other issues as a result of surgery, but they're not the same as having UC.
- No part of their body is now affected by the disease. If they were to undergo camera tests or other investigations, no ulceration or inflammation would be found.
- They may feel a great deal healthier than they did when they had UC: in fact, they may feel just as healthy as they did before UC came into their lives.
- It's quite refreshing to finally be able to tell people, "I'm cured". It feels like a life-changing achievement.

However, some people do not see colon removal as a cure, because:
- A 'cure' suggests treatment of a disease that leaves the body in the same condition it was before illness. Without a colon, your body and its function has definitely changed long-term. The condition has been treated, but not 'cured'.
- If you have complications, you may still feel ill after your colon has been removed. Although these aren't strictly UC, UC is the whole reason you were ill in the first place, so in reality it has been the root cause of your current issues.
- Saying you're 'cured' implies that you've got no further issues. This may mean that if you tell them you're 'cured', family members and friends might stop recognising that you still need certain allowances post-colon removal, such as limiting your diet or going to the toilet more often. It may create better understanding to say that you're still affected by disease.
- Although you no longer have intestinal symptoms after your colon has been removed, you may still experience joint pain and tiredness, which are associated with UC.


Personally, I'm not sure what I believe. On the one hand, I'm extremely grateful that I no longer have UC symptoms, and even recovering from surgery I feel ten times better than I ever did with colitis. I no longer have to spend my life looking for toilets, or planning day trips around them. On the other hand, I don't feel that removing one of my major body organs can be considered a real 'cure'. One day, we must hope that sufferers don't have to go through gruelling surgery, but instead that they might pop a few pills and be rid of the disease forever with their intestines intact. We can dream!

I think whatever you believe, being rid of UC symptoms can be a real blessing, and allow you to live a much healthier life than you would have with severe disease. It might not be the best solution, but presently, it's the best one on offer, and I'm grabbing it with both hands!