update on my post about my colonoscopy on August ... - PMRGCAuk

PMRGCAuk

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update on my post about my colonoscopy on August 6th while on 3.5mg of Prednisolone.

Cact profile image
Cact
38 Replies

Hi all,

I’m sure I had very little sedation because I felt so much pain during the colonoscopy that I thought they’d forgotten to give me any. Only one polyp & 2 biopsies were removed & it felt like I was awake during the whole procedure, which I wasn’t as it took 40 minutes. I even felt the scope slipping out as I woke up. There was no evidence of cancer & the CT scan I had the week before was also clear, so that’s a relief.

I had a Dexa scan in February & a rheumatology appt in April. Got the letter August 6th finally, (he told me in April I had Osteoporosis) but the letter stated “risk of osteoporosis “. Another letter a few days later with an appt for the Zoledronic Acid infusion on 23rd. That went well, took 45mins & no side effects. But the letter written on that same day said “risk of osteoporosis “ as well.

So I’m a bit confused, my Dexa scan results are as follows:

T-score. -3.8. Hip =. -2.7. Neck of Femur =. -2.5.

So I’d like to know if I actually have Osteoporosis or not. Maybe I’m on the cusp? Will be very grateful for any advice thank you.

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Cact
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38 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

This from ROS UK

DEXA - Your results

A bone density scan compares your bone density with the bone density expected for a young healthy adult or a healthy adult of your own age, gender and ethnicity.

The difference is calculated as a standard deviation (SD) score. This measures the difference between your bone density and the expected value.

The difference between your measurement and that of a young healthy adult is known as a T score,

RThe difference between your measurement and that of someone of the same age is known as a Z score.

The World Health Organization (WHO) classifies T scores as follows:

* above -1 SD is normal

* between -1 and -2.5 SD is defined as mildly reduced bone mineral density (BMD) compared with peak bone mass (PBM)

* at or below -2.5 SD is defined as osteoporosis

If your Z score is below -2, your bone density is lower than it should be for someone of your age.

Although BMD results provide a good indication of bone strength, the results of a bone density scan will not necessarily predict whether you'll get a fracture.

For example, someone with low bone density may never break a bone, whereas someone with average bone density may have several fractures.

This is because other factors, such as age, sex or whether you have previously had a fall, also determine if you're likely to sustain a fracture.

Your doctor will consider all of your individual risk factors before deciding if treatment is necessary.

GUIDE TO UNDERSTANDING T-SCORES - Range Examples -

Normal Bone Density -1 and above +0.5

Low Bone Density (Osteopenia) Between -1 and -2.5

Osteoporosis -2.5 and below -2.5

So your T Scores indicate osteoporosis- but do you have Z scores as well (they are usually slightly different because they are comparing you to your age group) - that may be why you are getting different messages about whether you actually have osteoporosis or are just at risk…

..I would be inclined to take notice of the letter/comments that accompanied the DEXA results you state.

Good news on cancer front…

Cact profile image
Cact in reply toDorsetLady

Thank you DL for that info about Dexa readings. It’s probably good that I had the Zoledronic infusion then before my bones get any worse.There are no Z scores in the letter, just a recommendation that I ought to have bone sparing therapy. The rest of the letter was a short list of blood results including CRP 2.4mg, & ESR 8 in April.

Just realised my CRP has risen to 12 after a blood test in A&E last weekend. Very high blood sugar 29.7 on Friday, kept overnight on drips. A visit from Rapid Response on Sunday sent me back in again with 24.4. Another overnighter with drips. They don’t know what’s causing it as I’ve no symptoms, I’m a mystery., just dizziness if I move too quickly.

So does 12 mean I have inflammation somewhere? There was no reading for ESR.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toCact

Inflammation somewhere? Yes probably, but as to what is causing it, difficult to say, could be infection of some sort (Dizziness or higher blood sugars?) or stress - not always PMR.

Hope they soon find out and treat it…🌸

SheffieldJane profile image
SheffieldJane in reply toDorsetLady

Very helpful!

PMRpro profile image
PMRproAmbassador

Those t-scores are in the range defined as osteoporosis - worse than -2.5

You aren;t just at risk of osteoporosis, you have it

Cact profile image
Cact in reply toPMRpro

Oh dear, another condition to add to my growing list😊.

Kendrew profile image
Kendrew

Very good news regarding there being no evidence of cancer. You'll be hugely relieved I'm sure. 💐💐💐

Cact profile image
Cact in reply toKendrew

Thank you Kendrew, it was a huge relief to get that news 🙏.

Kendrew profile image
Kendrew in reply toCact

So pleased for you.

SheffieldJane profile image
SheffieldJane

I wasn’t aware of any sedation either and I am very susceptible to drugs like diazepam. I found some parts of the procedure painful but was fascinated by the screen showing the inside of my colon. I had 6 polyps removed. My DEXA scan showed Osteopenia for the first time, this means borderline and it was in my spine only. The GP didn’t want to supply figures and said I could get them on the GP website. I suspect it’s low and I will need a bit of convincing before I agree to the drugs they propose. Ris ……something.

Theziggy profile image
Theziggy in reply toSheffieldJane

When I had this procedure, they had me turned facing away from the screen - which I so wanted to see!!!!

SheffieldJane profile image
SheffieldJane in reply toTheziggy

They should have offered you a choice.

PMRpro profile image
PMRproAmbassador in reply toSheffieldJane

Depends how the room is set up - and most patients probably don't want to see so they cater for the majority ;)

SheffieldJane profile image
SheffieldJane in reply toPMRpro

I found it reassuring to see pink healthiness when you feel rotten though.

Songbird69 profile image
Songbird69 in reply toSheffieldJane

Me too. Fascinating.

PMRpro profile image
PMRproAmbassador in reply toSheffieldJane

Osteopenia doesn't mean borderline. It depends on what the t-score is and osteopenia is used as soon as the t-score is greater than -1.0. Osteoporosis starts nominally at -2.5. Both readings of -1.1 (almost normal) and -2.4 (almost osteoporosis) are reported as osteopenia.

To say osteopenia is borderline is like saying the path at the top of the cliffs is the same relative to the sea as the sand.

SheffieldJane profile image
SheffieldJane in reply toPMRpro

That’s how the GP described it - borderline Osteoporosis.

PMRpro profile image
PMRproAmbassador in reply toSheffieldJane

What was the t-score? It is only borderline if it is lower than -2,0.

All osteopenia means is a lower than optimal bone density, the level you had at age 30 or so. Of course - I wouldn't expect the average GP to get the stats ...

SheffieldJane profile image
SheffieldJane in reply toPMRpro

Last time I was told that I had the bones of a 30 year old. This time I was told to look up the numbers on the Surgery’s website that has become horribly complicated to access different sections with different passwords and code numbers. The surgery pharmacist issued me with a password that doesn’t work and I can’t get it replaced without access. Good scheme to keep the dreaded patient away. You just lose the will……

PMRpro profile image
PMRproAmbassador in reply toSheffieldJane

I'm staying here - I get my results and if I can't find them on the website I can turn up in person, be admitted to the hospital building to pick them up. And - how novel is this - see someone IN PERSON!!!!!!

SheffieldJane profile image
SheffieldJane in reply toPMRpro

Do you have a spare room or two?

PMRpro profile image
PMRproAmbassador in reply toSheffieldJane

I have a spare bed :)

SheffieldJane profile image
SheffieldJane in reply toPMRpro

😉 Northern Italy, a view of the mountains, Doctors that see you and look like George Clooney. I’m there!

Cact profile image
Cact in reply toSheffieldJane

Risedronate Jane, comes in tablets & taken for 5 years or more. I went for the easy option of one infusion a year for 3 years. But I’m sure I read somewhere that Risedronate comes as an infusion as well. I had no side effects after this.

SheffieldJane profile image
SheffieldJane in reply toCact

That’s helpful thanks!

Pr0jection profile image
Pr0jection

That's great news about no evidence of cancer. I was adequately sedated for my colonoscopy several years ago so felt no pain, but apparently I talked all the way through it! From what I remember it was all about my Pilates classes. I must have bored the pants off the medical staff.....

Cact profile image
Cact in reply toPr0jection

😂😂😂

cranberryt profile image
cranberryt

For my first colonoscopy, I felt everything but was sedated enough that I couldn’t communicate that. It was awful. I had a repeat one this year and talked to the anesthesiologist before hand. She said that the type of anesthesia is critical. She took a guess at what was used on me the first time and was correct when she looked it up. She said that particular drug doesn’t work well on women specifically, with about half having my experience. She used something else for this one and I didn’t feel a thing. I was out in seconds and felt nothing. So if you have another, be sure to discuss your experience with the anesthesiologist and ask them to use something different!

Cact profile image
Cact in reply tocranberryt

Hi cranberryt. My 1st colonoscopy in April last year I was given Midazolam 3mg & Pethidine 75mg. The procedure took 2 hours & I woke up twice with the worst pain, like my insides were on fire. Sedation was topped up very quickly, 10 polyps were removed but 2 inverted lesions needed a more specialised endoscopist to remove them.Had my 2nd colonoscopy in July last year, given Buscopan 20mg, Fentanyl 137.5ug & Midazolam 5mg. This took 1hr 45mins, no pain, but only one lesion removed. Had to have major bowel surgery 3 weeks later with suspicion of malignancy.

My last colonoscopy on August 6th this year, given Fentanyl 50ug & Midazolam 2mg. This took 40 mins but felt awful pain several times & they seemed to take ages to top it up. Maybe they gave me the lower dose because I told everyone who would listen that I was on 3.5 of Prednisolone & worried about a flare. I didn’t have a flare but decided there & then no more colonoscopies for me. Never again ☺️.

SheffieldJane profile image
SheffieldJane in reply tocranberryt

That sounds like my experience of Pethidine during a very difficult labour. Horrible.

SusanEleven profile image
SusanEleven

You might cringe at my story. For reasons I won’t go into, sedation scares me so much that I avoid it whenever possible. I researched for a doctor who does colonoscopy without any sedation/pain meds.I found her via a news article. Turns out she was in my own medical center. It was my first colonoscopy at 60, six years ago. She’s very skilled because she has to be … you have none of the meds that can make you forget the hurt. I felt uncomfortable pressure when she was rounding some curves but no actual pain. The anesthesiologist had to be there in case I changed my mind or I guess if they ran into something difficult and grumbled he had nothing to do. I got to drive myself home. I’ll see this doctor again when I’m 70.

PMRpro profile image
PMRproAmbassador in reply toSusanEleven

It is normal procedure here in northern Italy - I think it makes it safer because the operator has to be more careful as they "round the corners". Unfortunately the "super pair" I and my husband have had in the past are setting up their own private clinic locally. Maybe they will sell their services to the local health board ...

SusanEleven profile image
SusanEleven in reply toPMRpro

I’ve read the same regarding safety. The doctor has to go more slowly and carefully when you’re not using sedation. I hope you can still have access to your super pair!

Hacey profile image
Hacey

I had some unexplained rectal bleeding some 8 years ago, and was admitted to hospital. Once it settled I had a very painful sigmoidoscopy where the surgeon admitted he had “gone further up”. It was horrendous, and although he found no active bleeding or polyps a day later I started bleeding again. It settled down eventually and I was sent home with an appointment for 2 months later for a “virtual colonoscopy” also known as a CT colonography. It is less invasive than a colonoscopy but is no good for having polyps removed. In my case it was to avoid starting any further bleeding. It showed moderate diverticular disease.

I’ve had no trouble since, touch wood.

PMRpro profile image
PMRproAmbassador in reply toHacey

I trust said surgeon has the same pleasure at some point! The probe used for a sigmoidoscopy is rigid - shove that a bit further and you could cause serious damage. What on earth was he thinking about?

Hacey profile image
Hacey in reply toPMRpro

He suffered from a God complex. I’ve moved to the other end of the country now, so hopefully will never come across him again. Seriously, it was so painful I thought I would have a heart attack.

Cact profile image
Cact in reply toHacey

😪😪

Cact profile image
Cact in reply toHacey

Omg, that sounds horrific 🥺. I’m glad to hear you’ve had no trouble since.

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