Saturday, April 09, 2011

Doctor Fleur Again - mouth

I have been having bowel problems more frequently.  I am going through my third bout of severe gut pains and cramps this year.  Unfortunately the Prednisolone tablets got me backed up with constipation so that any cramping was not very effective but still just as painful.  Luckily that changed today so that I got rid of heaps but the cramps have left me sore inside - feeling bruised.  I am therefore now vulnerable to cramping up on eating but I have been OK with last night's tea so far.  I am taking digestive enzymes at the moment with a main meal.

I was too ill to get to the doctor yesterday as scheduled.  I was overcome with weakness and fatigue and that internal shaking but I think the Prednisolone gave me a false sense of energy so that I over-did it around the house the day before.  It was nice at the time though.  I also started getting those toilet urges so there was no way I was going to risk not having one nearby.  I postponed the appointment until today.  Dr.  Fleur is still relatively easy to get into see within 24 hours and according to her I should have come back with my swollen mouth and burning gums rather than put myself on Prednisolone.  I got rapped over the knuckles but no-one understands how hard it is for me to get to the doctor and the amount of energy it takes and the relapse it causes.  It is natural that I just want to stay in my comfort zone at home where I have a better chance of living in some form of equilibrium or homeostasis.  I already had the Prednisolone at home and I wanted to see if it would help the mouth which in turn could lend more evidence to my theory that the mouth pain and lip swelling is Crohn's disease.  It has not gone away completely but it is such a relief in comparison.  So Fleur gave me a schedule to get off it over the next few days reminding me not to be tempted to take it again with the tablets that would be left over ....because it is "a nasty drug".  Again I felt like a naughty girl.  Yet Dr. Herd was happy for me to have another trial but at that time, I declined the offer.  So you can see why I felt like I had the choice to even use the Prednisolone short-term.  She says 20mg is a "high" dose though.  Without the Prednisolone, I fear that the mouth and now the gut too will get worse again.

Dr Fleur was more concerned with my heart.  She has been monitoring my heart murmur and noticed how bad it was yesterday.  I have been feeling peculiar with light flutterings but was not able to locate its source as my heart.  To me it was just as likely the wired feeling that comes with Prednisolone combined with the fluey shakey feeling inside that I am all too familiar with that makes me feel so weak and has me walking at a snail's pace.  Unlike the day before when I was buzzing around the house (in between sitting ofcourse).  I complained about all the different heart diagnoses I have had over the time but insisted that it was benign according to all the tests I have had so far.  I had an ECHO a couple of years ago along with a halter monitor with Dr. Boga at Nambour Public.  He offered me Metrol to regulate the palpitations that were non-stop at the time but said it was my choice whether to continue with it.  It barely had an effect on the heart palpitations so I stopped taking it after a couple of months.  The strong palpitations continued until the following year relentlessly but quite quickly from that point eased off and stopped except for the odd one here and there which I take no notice of.  They have been more obvious lately but still nothing like they were back then.  Despite already being given the all clear with my heart, she wants me to have another ECHO which I will just get at an imaging place next week.

Fleur also wanted the same old blood tests again.  The lymphocytes were elevated 2 weeks ago.  I had the blood test yesterday after the doctor's appointment and I am to go back to see her on Thursday.  She thinks my mouth improved because of the B12 injection but I don't.  I think it improved because of the Prednisolone.  As for the itches, she still thinks it was probably the Plaquenil and this time she gave me the choice to either stay on it at this lower dose or stop it completely.  I think I will stop it for now (again) and for longer than a week.  I may well miss it but it does not seem to be helping during this flare up.  I was more inclined to see its use for me as something to take as a relapse preventative but not at the expense of itches, hives or mouth burning and lip swelling.  Not that I suspect the Plaquenil of the the mouth symptoms but stopping it will let me know if the lips go down or not in response to cessation especially now that I have to stop the Prednisolone.  Once that is sorted out, I think I would like to try it again.  Sometimes it is better to leave well enough alone though and so far all these drugs for the last three months and more have been more confusing with their added side effects.  It is really hard to pull the benefits out of that.

The next thing Fleur wanted to check out was the Crohn's disease.  If it really is in the mouth, a gastro might want to do a mouth biopsy she said.  I suspected that.  Then I had to make a choice about going public or private and public it must be because of the costs of the procedures which will probably include another colonoscopy and gastroscopy.  That is why I cannot just take myself off to any private diagnostician like my Mum wants me to do.  They do very expensive tests requiring anaesthetic costs as well.

However, the last thing I want to do is go under an anaesthetic for colonoscopies when there is never anything to show for it on the surface mucosa - well not since the original ulcer thing in the sigmoid colon.  Anaesthetic rebound has put me into long-term relapses and I really do not think my body could handle that right now.  It is the last thing I want to do and it will be the first thing a gastro up at the public hospital will want to do if they suspect Crohn's.  I will agree to a mouth biopsy though if it is still flaring by the time I get in unless that requires a general twighlight anesthetic too.

It does not seem that long ago that I was in RBWH having those angioectasias argon plasma blasted to seal them and I took months and months and months to recover from that anaesthetic despite initially coming out of it just find and dandy.  It is always the delayed reaction that is the problem in CFS.  I don't want to go through that again but it seems to be becoming a recurring theme in my life.  It is so stressful to the body and I know it does not need any more.

All I asked for (mentally) was to be well enough to go and see grandson Cohen for his birthday next week.  I did not see him for Christmas.  It seems like I won't be going especially now that I have scheduled a doctors appointment for the very next day.  I find it hard enough to get there without having post-trip fatigue.  It looks like I will be sending a parcel in the mail if I can get to a PO.

I want a mobility scooter for when I can't walk without causing a relapse but I will then have to join the ranks of all the others who have to learn to get over the embarrassment of having to use one when the "you look alright to me" attitude strikes like a vicious snake.  It is a shame they do not have them in supermarkets here like they do elsewhere.  As it stands now, a trip to the supermarket is a huge endurance test which leaves no time for browsing.  I took my camping stool once but I felt a bit strange using it just to have a breather.  The looks!!!

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