Friday, 28 September 2012

September update

I've had my six monthly checkup and basically there's nothing to report. My lymphocite (sic) count is 0.9 (whatever that means). When I was diagnosed with CLL in 2009 it was above 30 so that's good. My weight is above 106Kg. 3 years ago it was less than 94. I've just come back from a holiday in Cornwall so some of the weight gain is down to all day breakfasts, Cornish Pasties and Cream Teas (with clotted cream) Life is good.

Friday, 20 July 2012

July update

Hi there, I don't know where the time has flown. I could be said that no news is good news and I have very little to report. I've been able to manage the Crohns and can now recognise the onset of an attack. Tiredness and stress bring it on. The good news is that the diarrhoea has not returned. I've also worked out how to take the daily medicine (Pentasa) without leaving the tiny granules stuck to the glass or in my mouth where they taste..not a bad taste, but not one you'd choose to have in your mouth constantly. The wet summer hasn't helped. A bit of sun can lift one's spirits, and in my case, a prolonged absence can bring on the blues. After a particularly gloomy and tiring/tiresome weekend I rang my GP to ask for a blood test as I was feeling so drained. I wondered if my symptoms had returned. I had the blood test and contacted the Haematology Department at the hospital to ask if they could look at them (as well as my GP). They rang back to say that my blood tests were OK and I had nothing to worry about as far as they were concerned. So, no news really. Life goes on. Roll on summer!

Monday, 19 March 2012

Crohns it is

I received a letter confirming that I do indeed have Crohns disease. I've been prescribed a course of drugs and will see the specialist in three months or so.

So far so good. Except that my symptoms have all but disappeared since the week before my last hospital appointment (about six weeks ago).

I spoke to my GP about this. I still have to take the course. So if my symptoms don't recur (a 50/50 chance)- will that be down to the treatment or chance?
If they do recur- does that mean the treatment isn't working?

Surely I have to be having a flare up when I start treatment in order to prove the treatment works one way or the other?

Tuesday, 6 March 2012

Self diagnosis may be a bad thing...

Well I've had my colonoscopy and all that goes with it. Starting on Sunday when I had to cut out fruit, vegetables, cereals and red meat from my diet. It didn't leave a lot. On Monday I could eat some white bread so I had a couple of slices of toast in the morning before I started the prep procedure.
Which is- drink a litre of some strange tasting liquid every hour- and stay near a toilet. I had in all 4 litres of the stuff that afternoon.
This morning I had to go to the Endoscopy Unit for the procedure. Until then I hadn't felt hungry but I was just starting to feel a bit peckish when it was my turn to walk around to the operating theatre (I was pushed back in a bed).

I won't go into the details of the operation, except to say it involves a camera and various other bits of kit being inserted into your bowel and then being pushed through the large intestine, taking photos and samples along the way. I was glad to be sedated as there were times when it was quite painful- as if you were full of wind- which I was.
I won't get the results of the biopsy for a few weeks but the report the doctor gave me said that it was Crohn's Disease. You can read all about it here:

It certainly ticks a few boxes (and you need to have read the link- although I'm not Jewish or a smoker!)
From the article
"The exact cause of Crohn's disease is unknown. It is an autoimmune disorder. An autoimmune disorder is a condition that occurs when your body's immune system mistakenly attacks and destroys healthy body tissue"

I'm immune compromised. I was advised not to eat shop prepared salads when I was originally diagnosed and I don't know if that includes pasta based ready meals that you can buy in any supermarket. When I was touring with Nicki Gillis last year I ate several of those and that may have triggered my symptoms, which included mouth ulcers, sore mouth and throat, and severe diarrhoea.
Looking at the article again:
"Crohn's disease may involve the small intestine, the large intestine, the rectum, or the mouth."

I'm hoping to see my GP tomorrow and I will discuss this with him.
In the meantime, I'm enjoying my food although I may need to adjust my diet if Crohn's is confirmed.

Saturday, 3 March 2012

March update

Where does the time go?

I've been working my way through the various out-patient clinics at the hospital. Last week I was at the Maxi-facilial clinic for the update on my nose operation. It appears that it was a cancerous tumour, but the surgeon is confident that he'd removed it all.
Next week I'm having another procedure in the "underpants department" as the late and lamented Ray Moore might say. Yes, this time it's a colonoscopy, and I have to start preparing for it tomorrow. I have to change my diet and cut out fruit and vegetables, breakfast cereals, milk in tea, anything with fibre in it.
Then on Monday I have to drink a lot of a liquid that will clear me out completely- and I won't be able to eat anything. Then on Tuesday I have the procedure.
I hope that after all that they don't postpone it....

The main health issue this winter has been a cough. I picked up a head cold in the middle of January which laid me low for a week. The head cold cleared up,leaving me with a cough. I don't have a chest infection- no wheezy bronchial breathing. I don't have a throat infection. Just a cough. I can still sing (just) and I don't seem to have lost any range or power, but every now and then I get a coughing fit. My lower abdomen hurts from the strain. I even coughed so much I vomited. What is it?

I've been having this cough most years for at least five, if not ten years. If I sit still I'm OK. If I move position or have a sharp intake of breath, I cough. I don't cough in my sleep. I wake up and continue to lie flat without coughing. If I sit up, I start coughing. Once I start, I can't stop.

Once I've recovered from my colonoscopy I shall be asking to have this cough investigated.