I went to the ibd clinic for my appointment yesterday which was mainly the specialist-trained nurse, who was well-informed I might add, rewriting my gut history in brief. That meant answering a lot of questions. My brain was not taking things in very well and I did not make the best opportunity of the appointment however I came across well. She wanted me to try a different oral thrush treatment so has written that to the G.P. and she described oral Crohn's and how it presents and I only fit in with about half of what she described. Ulcers are meant to be obvious and I didn't have any that actually broke through. She asked about whether I had ever had an MRI or one of the other scans of the gut (can't remember whether she said SPECT PET or CAT). I haven't ever. But I made it clear that I was not there for another colonoscopy. My body still would not cope with an anaesthetic. I just wanted to know what was going on with my mouth. It has started burning again and the Daktarin Oral Gel I bought at the chemist yesterday just makes it burn all the more and I am no better today. I have never seen white thrush marks. It is all just red and she said it looked like my tongue had a surface layer gone. She said I should see a dentist to see if it gingivitis but she has also ordered blood tests to screen for B12 and folic acid deficiency and bloods again seeing they seem to be fluctuating lately and a poo sample. I cannot remember which is screening for something that is a sign of active Crohn's. First I ever knew they could even do it via blood or poo. Finally something non-invasive.
The blood lab was closed and I have to take the poo sample back for this special test that gets frozen and sent to Melbourne so I will get it done next week. It was Friday and everything was closed by then.
The blood tests will be FBC, ELFTs, CRP, ASCA, P-ANCA, ferritin, folate and B12
If the ferritin level is low, there is a risk for lack of iron, which could lead to anemia. Low ferritin levels (<50 ng/mL) have, however, been associated with the symptoms of restless legs syndrome, even in the absence of anemia and sickness.
pANCA (Perinuclear anti-neutrophil cytoplasmic antibody) is found in about 50% of those with UC, but only about 5% to 20% of those with CD.
ASCA (Saccharomyces cerevisiae antibodies), IgG and IgA. ASCA IgG and/or IgA are found in about 40% to 50% of CD patients. ASCA IgG is found in about 20% of those with UC. ASCA IgA is found in less than 1% of those with UC.
The stool sample is looking for Faecal Calprotectin.
I am glad we have a dedicated IBD clinic in Caloundra now - acting as an arm for Nambour no doubt but I can see an improvement over the years.
We will have a telephone consultation on June 10th so that I can find out the results and report on my mouth after trying the anti-fungal starting with "f" or ph I think. I saw it written last night and I still can't remember. Zena is probably more informed about anti-fungal treatments. Is there one only available on script and not just over the counter Zena? Stupid doctor for not suggesting another type of anti-fungal instead of giving me a repeat of the same. I will keep trying the Daktarin type today but it burns so much!!!!!
On May 25th I have to go to Nambour which I imagine will be exhausting since I'll be walking a fair way. Cannot afford the hospital car park and the place has expanded quite a bit so I will have to find a brand new building and a brand new ticket system so I will have to allow extra time on top of travel time. It is times like this I wish scooters were easy to hire. They have them in the Supermarkets for customers in the USA. I may well be walking briskly that day anyway - who knows. But I have continued with a lot of gut problems and nausea as well. My diet has been restricted for two weeks and I have had chronic rather than acute pain in the gut since that horrible attack. And with the gut has come the joint pain, an increase in fatigue and my mood has got lower. I really hate the nausea. My neck headaches are on the verge of flaring and normal pain killers just aren't doing it for me any more. Leg aches seem to worsen because when the gut pains, the lower back seems to go off in sympathy and that extends down my legs. I am still remembering fondly the good day I had when I went for that long walk and came home with a fish. The diarrhea started again not long after I returned - maybe it was toxic fish!
|New home for old microwave - among the Tropical Birch leaves.|
I have not done anything fun since but I nearly had the house on fire yesterday when the electrics went inside the old microwave I got in 1985. I had to turn the power off to stop all the sparking and banging inside but then the black toxic smoke started and I was really scared it would blow up or ignite. It was Flora to the rescue who took the chances. I wanted to call the fire brigade. I was appalled that she might be exploded to smithereens in front of my eyes and tried to stop her, but in the end after the smoke looked like it was subsiding we both carried the melted thing out the front where it still sits stinking.
I've been caught out twice in 24 hours heading towards where the microwave used to be armed with a glass of milk or bowl to heat up. Now I need a man with a trailer who is already heading to the dump with a $25 load. I could be waiting a while.