This is where I am at with the Ulcerative Colitis.
I was first diagnosed as having Crohn’s Disease, affecting the Terminal Ileum, 12 years ago in the UK. I was in remission for ten years, then diagnosed here in New Zealand with Ulcerative Colitis following a colonoscopy done about a year ago. I was given Asacol as a precaution, but had a major flare-up when I visited the UK in September. I ended up in A&E on a saline drip, and was given steroids (30mg prednisone) to try and calm things down so I could get back to NZ.
Back here in NZ, things began to improve with the steroids, so I started to reduce them. I almost reached the point of being able to stop them completely at the end of December, when it flared again, just as we went on holiday to the South Island. I visited an emergency clinic there, and they bumped me up to 40mg, which got me through the holiday. Back home again, I went down to 30mg until things started to stabilise, and then began the process of reduction again. At the end of March I had managed to get down to 5mg again, and saw the consultant, who was very optimistic that I could continue off the steroids without any treatment other than the Asacol I had been on since September. But, the tests showed I was on the verge of a massive flare-up, the results of which turned up about the same time as the flare started.
So, I was asked to go up to 20mg, then 30mg, and now 40mg, to try and get things back under control. Earlier this week, I resumed a form of chemotherapy called Mercaptopurine after 7 years. Previously it affected my liver quite badly, but now they know more about how people process the chemicals, and so I have to take another drug with it called allopurinol, which will hopefully enable my body to process the drug in the right way, without damaging the liver. Mercaptopurine was originally designed for people with leukaemia, and it works by suppressing the way the bone marrow manufactures certain blood cells, particularly white blood cells, which takes about 5-6 weeks from starting the chemotherapy. This effectively suppresses the body’s immune system. Once things stabilise again, I will have to repeat the steroid reduction to the point where I am no longer taking them. How long I need to be on the chemotherapy is uncertain, and depends on how well I maintain remission and how my body tolerates the chemicals.
Ulcerative Colitis & Crohn’s (Inflammatory Bowel Diseases) are both forms of inflammation brought about by the immune system going into overdrive. Nobody really understands why it does, nor what triggers it, nor how to cure it. There are all sorts of different theories about why, what and how – but things are made more complicated that different things seem to trigger different people & different things bring relief to different people. Before treatment was available, people usually died from this disease, and people still do; one of my last memories of my grandmother was her staying one Christmas, in bed, with sheets covered in blood from the hemorrhaging. While it is believed that certain bacteria play a part in setting off the disease at the beginning, it is not to do with infection, and there may be hereditary factors involved. It is usually diagnosed in childhood, but it can appear in adults of any age.
The most distressing thing for me about this disease is that when it is active, it effectively renders me housebound, because I have to be near a toilet. I get confused from the lack of sleep and loss of nutrients. It affects my memory, it affects my ability to think clearly and rationally, and it affects my ability to undertake physical activity for longer than short bursts. Reading books is the best way to keep myself occupied, which often have to be read a page or two at a time – because the shifting from bed to toilet can be frequent. The frequent use of the toilet can involve not only loss of fluid and risk of dehydration, but loss of blood as well. The constant interruption by one’s own body is itself frustrating, and disrupts concentration. It is very unpleasant for partners, for fairly obvious reasons. Active IBD stinks, and some people just cannot cope with a partner with this condition.
People still die from strokes, heart attacks, peritonitis, or system failure as a result of this disease. I am lucky, in part because I take managing it very seriously, but in part because I simply do not seem to suffer as severely as some others. There is no cure, as I said, but there is treatment, and given the treatment I am now having worked for me ten years ago, albeit with side effects, it will work again, and this time modified in a way that will reduce the risk of those effects. The treatment itself is not without risks. It is chemotherapy, and while it is not for cancer, it carries the risk of triggering a form of cancer; this is offset by the fact that active IBD itself increases the risk of bowel cancer, and by treating it, that risk is reduced.
If the disease is not caught in time, or is too severe, or if the drugs don’t work (and sometimes they just don’t), then radical surgery may be called for. That means a re-section of the colon, or even removal of the entire colon. That then involves life lived with a colostomy bag or pouch.
People who usually mean well, people who care, will often offer advice, even though they know nothing whatsoever about this disease. You get used to it, but it can be irritating. Part of the problem is that the initials “IBD” seem similar to “IBS”. Now, before “IBS” became popular, and there was just UC & Crohn’s, this was not an issue – people with IBD just got very sick, often thin, maybe died, and that was that. But now, people who might have some familiarity with IBS (irritable, not inflammatory – syndrome, not disease) seem oblivious to the difference, and keen to impart their knowledge of how to manage IBS to people with IBD. Not wishing to belittle IBS, which I know is very real and uncomfortable, there are those who seem to view IBS as an imaginary illness, or something to do with hypochondria, or psychosomatic, or even faked or put on. That is not very good really, but the negative side of that for people with IBD is when this kind of attitude is then expressed about IBD. A disease which can be detected through clinical tests of samples, blood tests, and colonoscopies is not imaginary, not psychosomatic, nor faked, and suggesting it is so is highly insulting. It is a bit like suggesting to somebody who has cancer that their illness is all in the mind.
Just for information, and to make matters more complicated, people with IBD can also have IBS. People with IBD can also have anything else that affects the digestive system: Coeliac, gluten intolerance, lactose intolerance, the list is endless. For people with other problems like these, remedies for those conditions can be helpful for those conditions, which may even help maintain remission of IBD. But, for people with IBD without those conditions, the advice and remedies for those things probably won’t have any effect. Homeopathy – nah, I don’t think so, personally. Stress – yes, stress seems to be a factor. More of veggies & fruit – sorry, in my experience it is the worst thing when the disease is active. And that is something that complicates matters even more – what works for one person with IBD may not work for another. All one can hope to do is share what has worked, but which may not work for somebody else. Where things that work for different conditions probably won’t work for IBD, things for IBD just might, so it is good to share about what does, and doesn’t, because you never know.
Unavoidably, I have to touch on the problem of shitting. When the disease is active, my world revolves around the toilet. It is a messy business, and it stinks, and sometimes bloody. That is when it is most scary, looking down at a bowl full of runny shit, blood & mucus. That means that at some point, the mucosal lining of the wall of the intestines, somewhere, has gone, and now it is bleeding as the digestive fluids and partially digested food make their way to the rectum, which it will also, often inevitably, burn as well. Too much information? I’ll get to the point. The problem is not the shitting. The shitting is just a symptom of a deeper problem underneath. That is that the immune system, for some reason, has turned on the colon, and has gone into overdrive, and is attacking it in a way that will destroy it if not placated in some way. That is why the only treatments are to either remove what it is trying to attack before it does so much damage that it kills the host, or suppress the immune system to a point where it no longer attacks the colon any more. The symptoms may seem like they make for a good joke (and believe me, there is plenty of dark humour about it amongst those who are affected), but they represent really is not that funny. Even the farting.
The knowledge and skill of doctors working in this field is progressing, today much more is known than it was a decade ago. Today, surgery is the last option, and most people can live healthy and productive lives. The disease no longer lies under the shadow of the specter of death in the way it once did. But, it is a horrible thing to have to deal with, and there are times when all one can do is rest, pace oneself, and recover. And accept that may be about the best that one can do for the time being.