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?

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:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001295/

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.

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.

The ugly truth

First of all to anyone who drops in to read my news- may I wish you all a Happy Christmas.
here's the update on my nose. As I may have recounted, it all started back in the summer when I had a spot on the end of my nose. Nothing unusual, except that this spot would not heal. I asked a doctor to look at it when I was at the skin clinic and he suggested I see a specialist. He told me it was a sub-basal carcinoma.
This is what it looked like about a month ago.

As you can see, it was tiny, but it looked enormous to me. There came a time when it was the only thing I could see when I looked in the mirror.

I had an operation to remove it. This is what my face looked like a couple of hours afterwards.

I had the stitches in for a week. There was a large red scab on the end of my nose for most of that week. At last I had the stitches out, revealing this:

I have an appointment in a month or so when the surgeon will tell me the results of the biopsy. I suggest that if any of you have a mole that is getting bigger, or has an irregular shape or bleeds from time to time- get it checked out.

It might just save your life.

Minor ops etc

I've said before that I'm slowly visiting all the clinics and departments in our hospital. The other week I had an appointment with a specialist to try and sort out my colitis. Since I came off tour with a severe throat infection and diarroea back in July I've had my appendix removed, had x-rays and a CT scan, and a procedure known as a sigmoidoscopy. I now know that I don't have diverticulitis, and that a biopsy of the areas of inflammation they could see have not revealed any clues.
So I went to my appointment hoping for a successful diagnosis. I got some pills to take, and another appointment in the new year.

I had an appointment today at the treatment centre to have a growth on the end of my nose removed. The doctor diagnosed a sub basal carcinoma- but when he looked again he's not so sure, so we won't know what it was until the biopsy result comes back.
The operation went well. I sat back on the operating table, closed my eyes (the light was very bright so I had a swab to cut down the glare. The surgeon injected my nose with a local anaesthetic, and we chatted away while it took effect. All I could feel was my nose being pushed and pulled and before I knew it I'd been stitched and returned to the ward.
I stole a look in the mirror. What a sight. My nose was a pale sallow white, with a lurid and bloody scar criss crossed with black stitches on the tip of my nose- which was swollen. Not a pretty sight.

That should complete all my treatment until January, when I have a return appointment to check on my finger.

All that remains is to wish you all the compliments of the season.

November checkup

I had my checkup a day or two ago and nothing much to report really.
My blood results are good. My weight is steady. My other conditions are under control or in the hands of other specialist departments at the hospital. All good.

I've been taking Aciclovir for a few months following my throat infection back in the summer. I've also been taking septrin for the last 16 months or so. These have both been discontinued, leaving me with a daily dose of allopurinol to minimise the risk of gout, and omeprazole to keep the acid reflux down.

I played a celebratory gig with my band last night (www.facebook.com/daveclemo)and it went well. I was very tired from standing all night and so slept well.

Sixteen months of remission. All good.

November 2011

It seems a long time since my last post. My Appendix operation has healed and the scars are faint; I've had a sigmoidoscopy which revealed some inflammation but the biopsy couldn't find anything. I'm still getting problems but nothing like as bad as before. I have an appointment to see a specialist next month.

It seems that I've visited every department at the hospital. While undergoing treatment for CLL I had to see the eye specialist because of a bad attack of scleritis (which turned the whites of my eys to a lurid shade of red) That's currently cleared up, but my CLL specialist is keeping a watch on that.
He kindly referred me to a skin specialist about a year ago because my right index finger was looking very sore. It was diagnosed as Bowen's disease, a pre-cancerous skin condition, and two does of Photo-Dynamic- Therapy has cleared that up for now, and although the skin still continues to crust up, the lesions have healed.

I asked the skin clinic for treatment to rid my hands of some warts. They've blasted the warts with liquid nitrogen three times so far, but they're still there. It seems that my compromised immune system is allowing the virus that causes warts to thrive. I go back for a checkup after Christmas, so I'll ask for some more treatment then.

When I had my last appoinment at the skin clinic, I asked them to look at a spot on the end of my nose. I still get the occasional spot (I had really bad acne as a teenager) and I think I had a spot on my nose back in the summer. It never healed but would continue to bleed from the scab. They decided that it was pre-cancerous so made me an appointment at yet another department.

I had the appointment last week and was told that it was a basal-cell carcinoma, a type of skin cancer, so I will have a small operation in the coming weeks to remove it.

So although my CLL is under control, there are a number of other issues to keep the doctors busy. I'm working my way through the various hospital departments, and getting to know people all over the hospital. To illustrate this I had to walk through a clinic area on my way out of the hospital last week, and all the staff knew my name.

Is this a good thing?