Dinosaur Hands

Wednesday, February 1st 2017 is a date that’s winding the stress levels up for me!

Why?

I really don’t know the answer to be honest. I have an appointment with my GI consultant then and I suppose I feel this consultation will be a turning point for my future treatment plan, a change in direction maybe? A change in direction that is out of my control and a reduction in the options available to me.

To recap, I’m currently taking Pentasa, I’ve had a course of Salofalk enemas (which I stopped due to a pretty severe reaction) and I’m also on a four month course of Prednisolone steroids, 40mg daily reducing dose.

None of the drugs so far have provided any real relief or had any real impact, other than a few unwanted side effects! The Salofalk enemas gave me instant diarrhea, and I do mean instant. Not the desired effect I’m guessing 🙂

The Pentasa is OK now, but initially I got quite nauseous with them, guess my body is growing more tolerant to it as time goes on.

Finally, the Prednisolone, OMG ‘Roid Rage’ 🙂 When I started loading the steroids at 40mg daily I was turned in to an irritable, intolerant old arsehole. They acted like a truth serum, I just couldn’t help speaking my mind, honestly and far from tactfully in some instances!

Sleep is a luxury some nights, my chest and shoulders are getting spots like I’m still a teenager, I get cramp in my toes, fingers and calves daily too, my fingers end up looking like they’re stuffed inside an invisible tube of Pringles, with me just sitting there in pain and impersonating a dinosaur, just for my own amusement while it passes

dino

The one steroid induced side effect I’d been told about that I actually was looking forward too was weight gain and GUESS WHAT! Not a bloody ounce in the last seven weeks as deposited itself on my bony little body!

TYPICAL! Guess I’ll have to live with my pool cue physique then 🙂

pred

So, I’m still getting ‘unformed’ stools with little warning of their impending escape, passing blood far too often from my battle weary poop shoot and getting bouts of sudden and severe pain, sometimes a few seconds of stabbing and gripping, sometimes a prolonged onslaught. I’m beyond tired some days and weight gain eludes me no matter how many calories I try to stuff into my face 🙂

Ah well, at least I’ve got myself prepared with a list of questions for the GI consultant! Other than that, I really don’t know what to expect and I’m dreading it for no good reason to be honest, all the prods and probes, needles and canulas I’ve had recently haven’t really bothered me or had me stressing prior to the event and this is just a chat really, a sit down and discuss session!

Perhaps I need some ‘Man Up’ pills prescribing, see if that helps, but knowing my record with side effects recently, I’d probably grow breasts!

At least I’ve still got my sense of humour, all present and correct 🙂

Thanks for reading and please add your comments below 🙂

10 Comments

  1. I worked out my moderate UC not with a food elimination diet, but with an Aluminum elimination one. If you search the web you’ll find it’s implicated with many diseases, but of course medicine won’t admit this because modern medicine predicates on the use of this inimical metal to ‘stimulate'(hate that word, provoke is preferred.
    You hate Salofalk, I loathed it from the off. Instant grumbling in the belly, didn’t make it to the toilet in time :-(. Try to stop this, I hadn’t an icicles chance in hell.
    I used a professor’s work on a Water incident, and his research, he had people drink Volvic/Spritzer and tested their urine for Aluminum. I had used that metal as cookware before, it altered the taste of water.
    Started drinking it 1 litre/day, it tastes softer to me and more like water should of nothing. So the water just passed through me, and since I did this to myself I had to fix it, didn’t I?
    I checked silica capsules, since it’s from a plant that makes this more bio-available, we eat bamboo in Chinese food.
    That calmed the inflammation in my colon down, it can then do it’s job, returning moisture to your system, a long time ago I studied some biology.
    Just start he water and the other meds you take, after all we all need water to exist. Try silica or take some silicol gel, look up what is silica. Don’t expect miracles, just an alteration in bowel habits, then because of how long you’ve had this will depend how long you may take to heal, it’s a bot depressing, internally (if I’m correct) you should feel and notice change. Good luck, I know what caused this in me, would it help you?

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      1. I just used his research towards AD, removing aluminium via a silicon rich water, plain drinking water is cleared with the metal salts. And I just figured after the professor used the water to clear the body of aluminium (salts), I tried and it cleared me out turning to water, then I tried silica capsules. See?

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  2. Your symptoms sound the same as mine right now! You don’t really want to gain weight on prednisone, and I’ll tell you why–it wastes muscle and stores fat (particularly in the midsection).
    You would only be gaining fat, not muscle. In order to try to hold on to the muscle you have, try taking Glutamine (very important amino acid) and eating higher protein meals–meat is not on my menu now, but eggs are a good source of protein and gentle to the gut so I eat them.
    For the cramping, you need electrolytes (the Glutamine should also help immensely with cramping). Many sports drinks contain electrolytes, such as Garorade. But I actually use a product called Pedialyte.
    If you buy the Glutamine, buy powder, not capsules. You’ll need to take between 20-40 grams per day.
    Best wishes to you!
    MLACS

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    1. Hey, thank you for commenting 😊 I will look into the glutamine thanks.

      I mainly eat chicken, salmon and eggs so hopefully getting plenty of protein, but still no gains and I’ve tried fortisip and a protein shake in the daily mix too.

      The sports drinks sound worth a look too. Is there a reason you prefer powder to capsules or is powder more effective?

      Take care 👍

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      1. Hey! So I don’t think you can expect any gains in muscle until you are off the Prednisone, but a good amount of daily protein should preserve the muscle you already have.
        The glutamine powder is tasteless/odorless and mixes easily into a drink. The reason powder is better is ease-of-use and saving money by buying in bulk. You need to take 20-40 grams per day, and that would be a ridiculous amount of capsules. Just toss the glutamine powder in your protein shake. Here is a link to one of many articles explaining the benefits of glutamine–google and you will find many sources that advocate for it. I used to take it religiously as a young athlete, but I stopped (why, I do not know).
        https://draxe.com/l-glutamine-benefits-side-effects-dosage/
        XO,
        MLACS

        Liked by 1 person

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