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Saturday, 8 May 2010

F.Q.A. No. 1


Just asking





Frequently Questioned Answers

I have been thinking back on the thirteen year journey from discovering I had UC through the flare ups, under the knife, and out the other side with a stoma.

Anyone on such a journey will, on occasion, come across certain firmly put forward "answers" or assertions that will cause you to think "And yet I wonder?". These answers can be gathered into subject areas, and often start with phrases like "You should . . . " or "Yes but . . . ."

In this, the first of occasional posts, I question a random selection of "answers" that have been presented to me.

1) Answer: U.C. is psychosomatic.

Questions:

If it is psychosomatic, why can’t U.C. be cured using techniques such as CBT, Psychiatry, Counseling?


If it is psychosomatic, is it always a certain personality type that gets U.C.?

If it psychosomatic, where does this put theories that U.C. may have a genetic component?

Personally I had the psychosomatic theory served at me several times by professionals, and other very clever people. I did, and do, often question whether there is a connection between the mind and one’s health.

In fact I am fairly certain there is a link between physical well being and the mind, but I can’t believe that it U.C. is entirely a work of the mind. It seems to me that I had a genetic pre-disposition to U.C. My Grandfather had terrible guts, as does my mother and my Dad also suffered gut-trouble towards the end of his life.


I don't think U.C. is a psychosomatic disease, I think it is very physical illness whose origin and mechanism is not understood. In my experience the psychosomatic card is often played by people who are running some other agenda behind the scenes.

I must, again, say how I found hypnotherapy helpful as a coping strategy for anxiety.


It can’t be bad to try and get your mind straight, and decode yourself. Even if it won’t cure you, it will be work worth doing.

I think it best to try not to be a prisoner of your mind if you can help it.


2) Answer: Ulcerative Colitis can be cured with a change of diet

Questions:

If U.C. can be cured by a diet why don’t the N.H.S. simply tell you what to eat and save all the money they spend on doctors, colonoscopies, infliximab, stoma nurses, surgeons, hospital beds, and consultants?

I am no mathematician or economist, but surely printing a few menus and even sending someone round with suitable food would be cheaper?

Personally I agree that 15 pints of lager and a blazing hot Phal curry, topped off with a kebab between the restaurant and the front door is going to be quite disastrous for you, the U.C. sufferer. Equally a diet of mild broths, and insipid meals made from inoffensive ingredients will not give you so much of a gripe.


3) Answer: Alternative medicine can cure U.C.

If alternative medicine can cure U.C., why don’t we set up a system in which patients are routinely referred to alternative therapists?

Is there a conflict between conventional and alternative medicines over the treatment of U.C.?

For myself, I tried acupuncture when I was first diagnosed with U.C. and my experience was that it calmed some of the symptoms but it didn’t cure the disease. I really wanted it to work.

The experience of alternative therapy seems to me to have a shamanistic aspect to it as well as any other therapeutic effect. My acupuncturist took time to talk to me, did not frighten me, and only stuck very small pins in me.


I think there may be a great mutual misunderstanding of the two tribes; scientific medicine and “humanistic” (for want of a better description) medicine.

4) Answer: Surgery will “give you your life back”

Questions:

If surgery can give you life back, can I please take off this bag and pose in the nude on the fourth plinth?

What do you mean by “give you your life back?”

Before surgery I thought it was the worst thing that could happen to me. I viewed it as the ultimate submission and failure of the medical process and my personal resolve. I could not easily bear to contemplate being so weird and disfigured.

I was, in a way, corralled into the decision because I did not want to stroke the cat of death again.


Now, on the other side of surgery, I feel that I am still me and I am not as hideous as I thought I would be. I don’t have a rack of pills by the bed, and I can walk and go to the gym and swim. I don’t have emergency bog moments, although I am aware of my plumbing.
This may mean that I have my life back, or not.

It depends on your criteria.



If you have any Frequently Questioned Answers I would love to hear about them.

6 comments:

  1. Excellent post. I have found myself wondering some of the same things. The answers are very slippery and elusive thus far.

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  2. Dear WW

    All answers are questionable. :)

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  3. cool post :D ... who knows ... what works for some, doesn't work for others ... I'm happy to try most things at least before heading to the knife:D ... the thing that scares me the most with a stoma is what happens if I go under the knife and I'm told when I wake up that I'll have the stoma for life as a j-pouch connection isn't possible...or even I get a j-pouch and then find out it won't work properly...

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  4. Paula,

    Yes try everything, of course. If I could have squirmed out from under the knife I would have done, and I was full of fears and trepidations.

    I'm not trying to promote surgery, I'm just describing my journey. As I understand it the surgery is usually successful, and I found there is a good life to be had.

    I am now trying to find out about life with a J-pouch as I think that is probably the next step for me.

    Good Luck

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  5. Answer: Honestly, we really don't know.

    Questions: What EXACTLY is this stupid disease? Why have I got it? Where did it come from? Why is it different for everybody? Why do some people get into remmission with the first wave of basic drugs whilst others try everything on offer to no avail? And why the fuck does a problem with my colon make my bloody feet swell up?

    Ahh, thats better. Thanks for that. But I can't help thinking a little more honesty from some people at the start would have saved me a helluva lot of stress in the early days...

    Ultimately, I think the only answer may be: You gotta find your own way baby.

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  6. A heartfelt response Rich;

    And you are right, we all have to find our own way.

    And your questions are good as well, because anyone who has it knows that there is no answer to why we have it, how to "cure" it, who gets it, why our legs and feet swell up, why it can happen to some people young, and some people later in life, whether it is genetic, etc etc . . .

    I remain

    Rog

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I'm always interested to hear any thoughts or stories of your own. Please do comment.