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July 7, 2015 / zzirf

Crohn’s Disease again or something else?

A bit more personal update on my life over the time I have been mostly away from this blog for:

I firstly wrote about it here: http://www.crohnsforum.com/showthread.php?p=875538&posted=1#post875538

Yes, I still have fibro flares.

ME/CFS improved when I was treated for Lyme Borreliosis with a year’s worth of antibiotics. During which time unusual psychiatric problems arose.  But I was physically so much better.  Not home-bound.  I had my bad runs but they were short.

I went from being 53kg to 82kg between the end of the agitated activity (psychiatric herx) phase and this new obese phase of my life but I was still able to schedule in walks with my friend.  I was taking Effexor and I went from worrying about everything to not even being nervous to go to the dentist.  You might say those pills work!  You could say the effect might have been a bit extreme because I don’t worry about the housework enough.

Health started to deteriorate very, very slowly but not so often in that fluey feeling kind of way.

And then I turned 60

At first it was hives for two months which turned out to be an allergy to egg white

My holiday medical in a strange shopping centre unveiled high blood pressure and high blood sugar.  The beta blocker helped with the blood pressure but it went away again by itself.  But I could see that my heart rate (HR) was too high.  Other’s noticed too but not my doctor.  I had monitored HR for at least a year when I had an HR monitor back  when I was really sick and breathless.  It was often very low but would go high, as in too high, when I stood up.  I assumed it was POTS and the beta blocker back then helped it.  Somewhere between then and now something has changed.  My tachycardia is consistent even throughout the night in bed.  I’m sure nobody cares.  And now, my blood pressure can be lowered by simply lying down for 20 mins. Standing up, even sitting upright elevates it by enough Hg to consider another form of orthostatic intolerance.  But it is not top priority.

I was diagnosed with diabetes mellitus type 2 fairly recently but I knew the diagnosis was coming because of many blood tests by now and I altered my diet as I guessed it should be.  I gave up sugar in my drinks and finding it hard I added cream to coffee as a substitute.  I swapped a cereal breakfast for a cooked meat and egg breakfast and I had already given up bread to try to lose weight.  That surely did not work but it saved a lot of heartburn and reflux. I was eating a lot more fat.  It seemed to be going fine and I even started losing the craving for sugar even with my naughty relapses into the biscuit and cake world.  I think I had started to lose weight until I had to stuff myself full of carbs for 4 days in preparation for a glucose tolerance test.  I would have gone back to that diet if you can call it that; instead I started having stomach and bowel problems which made eating pretty difficult.  I reckon I am losing weight again now because of it.  I have also cut back on the anti-depressant a little but I am strongly affected by withdrawal syndrome so it is a very long process.

So I am leaving you at the current point in time where I am learning to use a glucose machine and prick my finger while trying to discover if the current month-long run of stomach problems which seem like gastroparesis and bowel problems which seem like Crohn’s are going to be diagnosed.  Just don’t go to Caloundra Hospital if you are in so much pain that you think you will pass out.  They will take away your ambulance trolley, send you back into the public waiting room and make you use the public toilets until the blood comes which was 4 hours and then they will give you a buscopan and I must not forget the lecture about not being able to be treated in Emergency because Crohn’s disease (although pronounced cured or a phantam of someone’s imagination) in me has been long-standing and therefore something every day and she reminded me (the doctor on duty who did not even send anyone to check on me during my prolonged stays in the bathrooms) that in fact, I did not pass out.  I assume they mean that I can only go to hospital during a bowel attack if I actually do pass out.  I asked to go home in the end.  Being cold in the hospital trying to lie down across several seats was adding hell to torture.  My home was not hell.  I had blankets and a bed.  And a clean toilet with softer toilet paper.  I thought Emergency Departments were supposed to have most of those things and accept people who are nearly in another dimension because of painful spasms.

When I was in private health insurance, the private hospital I went to a over a couple of decades ago insisted that I should go to hospital to get something strong like pethadine for the pain.  Caloundra Public hospital obviously does not treat bowel cramps (that leave you sore for a week after, and that make you wonder if you might die).

Anyway, my doctor told me to go to hospital next time and I did.

Now I am being tested for all sorts of things.  I wonder if I will get a diagnosis this time.  Last time one doctor suggested gall stones and the other suggested gastro.  So I leave you without any results and a totally messed up diabetes diet.

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