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Sunday, 23 October 2011

If you have just been diagnosed with Ulcerative Colitis:

It is not your fault. You haven’t done anything wrong. Give yourself a break and don’t blame yourself. As I understand it the causes of Ulcerative Colitis are still not really understood. Some say that it is your genetic inheritance – and no one should be blamed for that. Some say it is a psychosomatic issue – and that is not a matter for blame. I think I’m right to say that almost everyone says that it has something to do with you immune system. I don’t think anyone can be blamed for that either. So it is not your fault.

The doctors do not really know why you have got Ulcerative Colitis, and in my experience and belief they are not really quite sure how to deal with it. This is not said with venom but as an observation. It’s a tricky disease, and the answers just aren’t yet there.

It’s possible that early visits to the doctor and an examination of your symptoms might have brought forth the idea of IBS. This is different. The initial strategy of your doctor will (I think I’m right in saying) be to prescribe certain anti-inflammatory pills and potions in a kind of ascending order of severity. I started with Prednisone. Other similar drugs include Azathioprine, Mesalazine, Sulfasalazine, Balsalazide, Olsalzine. Hopefully one, or some, of these will bring about remission. There are also enemas that you administer to yourself, and they try to get the medicine to where it is needed.

If you haven’t had one already, you will probably need to prepare yourself for a colonoscopy at some point. This is not much fun; but in fact it is uncomfortable rather than painful. I found the main difficulties were psychological. The medical profession can seem only to eager to find yet another way to invade your privacy; but in this case it is the only way to properly see what’s up (maybe I should change that phrase).

Whatever the origins of Ulcerative Colitis, and whatever your temperament, I’d say that finding a way to reduce your levels of stress is going to be important. I think most people will agree that stress is going to aggravate the situation.

Practical things to make the day to day less stressful:

Know where all the loos are in your everyday environment. You can apply for a RADAR key which will let you into locked public loos which are cleaner and easier than the cramped public bog.

OK, I know this sounds unpleasant – but prepare for the worst. I used to carry what I called my “shit kit” - just in case. You can also get cards that say things like “URGENT” and explain that you need to use a loo. The idea is that you thrust it into the hands of suspicious proprietors of cafés and shops to save time and embarrassment.

The next tip, I'm sorry to say, is not really very healthy. If you are going on a journey, or working in an unfamiliar place where you don’t know the loo situation remember the adage “An empty Bottle Will Not Spill”. I used to eat nothing, or next to nothing, before going into such situations. I’m just saying that is what I used to do.

Drinking alcohol makes it worse.

You are more likely to get dehydrated if you have Ulcerative Colitis; because your gut is not re-absorbing the water as effectively as it should.

Watch out for aching and swollen feet and legs as it seems from reading the blogs, and from my own experience, that it’s quite common to get gout like symptoms. I’m afraid it really hurts and I never found a way round it.

If you don’t get into remission, you may find yourself on infliximab, a relatively new and expensive drug. It’s a recurrent 6 hour infusion. It’s not so bad. Even if it doesn’t fix your gut it will help your aching legs. For me this was the end of the line for my gut.

The infliximab did nothing to help, and I had reached the end of the medicinal route. Gulp.

If you too are past all this, and you are facing a colectomy:

There is no denying that the prospect is terrifying and psychologically difficult. It threatens your self image, not to mention being radical and irrevocable. If you are faced with this possibility, find a way to look at it the most positive and useful way you can. Please don’t allow fear and loathing to get in the way of the person you really are.

The reality of living as an ostomate is really not as bad as it at first seems:

You will be able to eat what you like, you won’t have to worry about the nearest loo, you won’t get colon cancer, you can never be accused of farting in public, it won’t stop you from doing physical activities, they can’t give you a colonscopy, you won’t have to take drugs. What’s not to like?

OK, there are things you have to reconsider:

Clothes; I think if you wear floaty dresses and such like it is going to be a lot easier. If you wear trousers and a shirt it’s more difficult because the belt or waistband may strangulate the bag in the middle, and the upper portion can bulge weirdly. In order to solve this you need to get some good high waisted underpants that are designed to come up over the bag. You may need to loosen your belt a little as well.

You may find, especially at first, that the whole apparatus can come unstuck. This gets better as you get more adept at the process of changing it. So certainly at first I suggest that you carry spares, disposable bags, and wipes.

If you want to swim I suggest the triathlon suit. It is fantastic and nothing shows. Honestly.

I hope this is useful to someone. If anyone has other hints why not share them here.