My third and final post for today. It’s been a long and eventful day. The first thing to happen was my appointment with the gastro-enterologist at the hospital, following my recent colonoscopy when I was diagnosed with ulcerative colitis.
He discussed the results of the test with me, and some nice pictures of the inside of my bowel were on his laptop as we spoke – I think he thought he’d got a right weirdo when I said I wanted to use them for inspiration for art!!! I could create a great pink and orange texture from that… He gave me a really funny look (I’m not surprised!) and I expect he sat down for lunch with his colleagues and said, “You’ll never guess what one of my patients said today…” ROFL! Got to give them something to tell the grandchildren, haven’t you.
Anyway, he told me (as I was already aware from what was said during the procedure) that the inflammation goes right round the bowel, but it isn’t as bad as some, so he’s starting me off on the “bottom rung” of the treatment options, with a low dose of a drug called mesalazine, which acts as an immune response inhibitor. Since UC is an auto-immune disease, this causes the body’s action against itself to be less severe. The drawback is, of course, that it leaves one more vulnerable to infection. Given that I had cystitis last week, this sort of thing is now more likely to recur, so I am going to continue with my daily glass of cranberry juice to protect the lining of my bladder. There is a whole list of potential side effects from this drug (all of them highly unpleasant) but not everybody suffers from all, or even some, of them, so I may be OK. I have to be aware of them, and inform the doctor if they become severe. One of the most serious is the small possibility of kidney damage, and I will be monitored for this by a yearly blood test.
The medication comes in a form I have never come across before – small sachets containing granules which you have to pour onto your tongue and then drink down with water. Why they can’t be contained in a capsule is beyond me… It’s a curious, but not particularly unpleasant, sensation to take them, and they don’t taste of anything, but they do leave a curious aftertaste for a minute or two. The sachets look like those free sugars you get in restaurants.
UC increases one’s risk of contracting bowel cancer, particularly if, as in my case, the inflammation involves the whole bowel. The mesalazine also causes an increased risk, because along with reducing the body’s immune response, it also reduces the body’s natural protection against cancer. I shall therefore be monitored by regular colonoscopies every two years, and will be taken out of the bowel cancer screening programme which will now be redundant for me as I’ll be examined for it anyway.
The consultant told me that I need to be realistic about outcomes. This is a permanent, chronic condition for which there is at present no cure. The treatment is a management stratagem which will help relieve the symptoms of frequent diarrhoea and cramping, but I cannot expect to end up with normal bowel function. With the reduction of chronic inflammation in my body, I should start to feel better, as this can cause an ongoing feeling of malaise. I feel this with the M.E. anyway, so it will be interesting to see if I do feel better as a result of the treatment.
Apparently there is no evidence that any particular foods affect the condition in any way, either positively or negatively. He said that some people get involved with all sorts of complicated exclusion diets, but his advice was simply to enjoy life, to which I readily agreed! A positive attitude helps with everything life throws at one, I find.
After examining my abdomen, he gave me a website to visit, of the National Association for Colitis and Crohn’s Disease (NACC) which also includes a forum which I may decide to join. There may be some helpful advice out there from fellow-sufferers, although I have been managing it more or less OK for several years without knowing what it was.
He told me I was part of a rather interesting group that has emerged recently, of people being diagnosed with IBD (inflammatory bowel disease) when being tested for something else. This has arisen quite unexpectedly from the recent launching of the nationwide bowel cancer screening programme for the over-60s. He said that many people would not have discovered what was wrong without the follow-up colonoscopy after an abnormal screening test result, and quite a few older people are joining the ranks of the younger patients (it is more common to be diagnosed in younger people).
He was interested in my experience; I was diagnosed in the late 70s with IBS, which cleared up after several years, when I got married and moved to a different area. I put it down to the change in water. I was symptom-free right up to the summer of 2007 when I started with M.E. when the diarrhoea began again – I put it down to a return of the IBS, which was further reinforced after my M.E. diagnosis in the autumn of that year, when I discovered that IBS is very common in people with M.E. With hindsight, it is a bit different, but not enough to have taken me to the doctor for further investigation, and everyone accepted it as IBS.
I have been taking Immodium (loperamide) for relief of my diarrhoea on and off for years, and find that it works very well – I find I have to take some before I go out, or I really cannot function. The effect lasts all day, and most of the next day, and gives me some relief and allows me to get out of the house. After my colonoscopy when I was informed that I had UC, I did some online research and found there were two opinions about Immodium – some were definite that it should never on any account be taken by UC sufferers because of the risk of the serious condition known as toxic megacolon (sounds awful, doesn’t it!) while others say it’s fine in moderation. I was anxious to find out what my consultant had to say about it, and he said that I could carry on, and it was fine. I am relieved, especially as he says that the mesalazine won’t entirely clear up the symptoms.
Further research is now going on into the newly-emerging group of patients diagnosed later in life via the bowel cancer screening programme. There is also a double-blind clinical trial being set up into the effects of Omega 3 fatty acids on the condition – these chemicals apparently act as an anti-inflammatory and have had dramatic effects on rats and mice – but my consultant said, “Of course, we are not rats and mice!” They apparently have a huge tolerance for these substances, and can gain 25% of their nutrients through them, but he said you can’t expect people to eat that much oily fish! Anyway, I have agreed to take part in this trial if it will be useful to them, so he’s made a note of that. I am already taking a daily dose.
He informed me that I should not expect to feel any different for between two and four weeks. After that, we shall see. He wants to see me again in four months’ time.
I am glad that now I am 60, my prescription will be free; there is a campaign by IBD sufferers to be given free prescriptions; after all, people with diabetes and thyroid disorders and many other conditions receive them, and IBD is an extremely debilitating condition with profound social implications – many sufferers can’t go out because they have to be constantly near a loo. They are also campaigning for car parking spaces near loos, and for loos to be present on all trains. These are things that most of us never even think about. Anything to do with this particular area of the body still has a lot of taboos associated with it, and for the most part it’s a hidden complaint, so there is widespread ignorance about it, despite it being far more prevalent than MS or Parkinson’s Disease in the general population.
I am grateful to the professionals who have chosen this far from pleasant area of specialisation in order to help people live more comfortable and easier lives, but to do so, they have to spend their entire working day looking up people’s bums. Ho hum.