This page was last updated Sunday July 22, 2007
Following will be our experiences with some of the things that have come our way due to Carcinoid (and illness in general) and how we've faced them. As always, follow your doctors orders/advice for the tests and if your not sure, then ask.
| Morphine based Medicine | |
3 Day Faecal Fat
This is the worse test ever!!
For 3 days you have to collect all your bowel motions (even explosive diarrhea) in a large paint tin like container in order to test pancreatic fat function. I did this in hospital in October 02 and performed amazing feats of toilet gymnastics to do it all myself much to the relief and amusement of the nursing staff. The smell on day one is bad, by day 3 toxic.
Not many hints here - just hold your nose and imagine the reaction of the lab technician who has to open the tin.
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5HIAA Urine Test
You will be given a large container with a narrow neck that has a small amount of acid in the bottom. DO NOT attempt to pee directly into the container. Apart from the very real chance you'll miss, the danger of acid splash is something not to be experienced - at least I don't. Use something that is not only suitable to catch but can also pour.
You'll also have to abstain from certain foods. It seems to be a lot of conflicting information on what and for how long and often depends on the Pathology company. They should provide a list.
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Barium Enema
Much the same as for the Colonoscopy. Its just not a very nice test. I was going to say its a shit of a test but thought better of it. I think a doctor should have one of these BEFORE they prescribe this to any patient.
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Blood Tests
These are fairly easy, unless you have a thing about needles. All I can suggest is that if you bruise as easily as I do, then when you find someone who takes blood well, keep on going back to them.
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Colonoscopy - Preparation
Follow the instructions for your particular preparation as prescribed by your doctors. Drink slowly. On the day when you have fluids only and the bowel preparation, make the smallest room in the house as comfortable as possible. I do the following:
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Have a good supply of books, magazines |
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Have a very good air freshener. I also put a couple of aromatherapy burners and candles on throughout the house and open the windows. Otherwise you won't get any sympathy or compassion; not even from the dog. |
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Have a glass or two of water handy |
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Some Vaseline to anoint the tender nether region |
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Put some music on |
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Buy some really good toilet paper and/or baby wipes |
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Endoscopy - Preparation
Not much to do for this test except fasting. Your throat can feel a little raw afterwards.
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Fasting for tests
Can be different for each test, so follow the instructions. Make sure you drink plenty of fluids when you're allowed to again.
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Injections
I got a lot of advice and instruction from many nurses on how to give myself injections and change the Butterfly clip for my Sandostatin injections and am now self sufficient, independent and adequate with the left and right hands. I just take it slow, relaxed and remember the way others have given me injections that have been comfortable. Videos etc are available, but at the end of the day if you can't then your nurses and doctors should do your injections for you. One day I'll teach Michelle to give them to me - but as Merran (Tony's wife) advised me, they call it wife's revenge for good reason.
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MIBG Scan
Had this done on 5/12/02
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Morphine based Medicine
They have been a godsend for me compared with the paracetamol alternatives. Not sure of any side affects apart from a bit dry in the mouth and more forgetful in the head and some other things I can't remember. The ones I'm on are slow release so need to be taken 12 hours apart to ensure that your pain is covered for the day.
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Octreoscan
Preparation was easy - none for me, but if you take Sandostatin you need to be off this for 3 days. The needle hurt and left a huge bruise, but the most uncomfortable thing was being strapped to the table so you remain motionless for 2 hours. The plan for this test is to have the injection, come back in 4 hours for the first scan, then 24 hours for the second scan, then another 24 hours if a third scan is required. Drinking lots of water to flush your system of radioactive material is a good option.
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Sandostatin - Sub Cutaneous
I Used to administer my Sando through a Butterfly clip in my tummy that I move every three days. I always ensure my hands are clean and I use the alcohol wipes to avoid any infections.
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Small Bowel Series X-ray
Not too bad, but is time consuming as they wait for the radioactive material to flow through into the small bowel. Take a good book. The material can set like cement in your bowels so ask if you require a laxative.
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Stomach Emptying
You have to fast and then eat a cold radioactive hamburger pattie - as my kids would say - GROSS - I tasted this for days. Take a book as you'll be there for at least 2 hours.
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