colonoscopy fact sheet

colonoscopy fact sheet

Postby member_41389 » Tue May 01, 2018 8:48 am

Hi
I've been reading the new colonoscopy fact sheet and have a couple of comments on it. Some are minor typos but one issue is, I think, important.
Minor points first:
- page 2 2nd para co-inside should have been coincide.
- page 2 last para it seems strange that low risk should have a repeat after 3 years but intermediate risk is 5 years. I suspect that they've been swapped around.

Major point:
Acromegaly patients have, in general, a much increased bowel transit time. This means that the bowel preparation routine is at high risk of failure. The best advice I've found suggests that the preparation will require double the laxative dose and increased duration of use. See for example P.J. Jenkins & P.D. Fairclough, "Screening guidelines for colorectal cancer and polyps in patients with acromegaly", Gut 2002; 51(Suppl V) v13-v14. Sadly I discovered this by personal experience, neither my endocrinologist nor either of the consultants who attempted a colonoscopy were aware of this issue. This is also a potential extra concern for those, like me, who are adrenally insufficient as well as having active acromegaly.
All the best
Tim
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Re: colonoscopy fact sheet

Postby Pat » Thu May 03, 2018 10:40 am

hi Tim

thanks for your comments. We've altered the 3 / 5 years the other day, that was noted as an error. We'll change the coincide too (well spotted!) The sheet has been reviewed medically but I will take your 'major point' back to them.
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Re: colonoscopy fact sheet

Postby member_41389 » Thu May 03, 2018 7:44 pm

Hi Pat
I found a better exposition of the preparation issue in Gut 1999; 44:585–587 , Jenkins and Besser "Colorectal neoplasia in acromegaly".
In my first attempted colonoscopy the procedure was planned for a Wednesday afternoon. I followed the prep guidance to the letter and thought that it had worked; I found out on the Friday what should have happened - and my wife was unhappy when I collapsed during the clear-out! (Fortunately extra oral hydrocortisone did the trick on this occasion.)
Hope you get a quick response from the medical reviewers.
Tim
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Re: colonoscopy fact sheet

Postby plum » Fri May 04, 2018 8:02 pm

Hi Tim
I can provide anecdotal backup to the question of bowel preparation.

The first time I followed the standard instruction and took just the 2 sachets. I also ate a low fibre diet for a couple of days before hand. The report came back that I had not been 'adequately prepared'. So that was a waste of a colonoscopy really.

The second time I stayed 3 days hospital. It was only after the fifth or sixth sachet that things were 'clear'.
It was awkward sharing a toilet with the other people on the ward. Also as I was clearly not 'unwell' the nurses and registrars found me a bit of an anomaly and this caused some confusion. In addition to blocking a bed for a more needy patient, I felt a fraud.

Not sure what will happen for the next one; it's hard to persuade people that I need many more sachets than a normal person so it would be great if the pituitary foundation could assist somehow.

Plum
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Re: colonoscopy fact sheet

Postby Pat » Thu May 17, 2018 2:39 pm

Hi Tim

we have now added the following to the fact sheet:
'Some individuals may require additional bowel preparation sachets due to their acromegaly or individual requirements. However, we suggest you follow your hospitals standard guidelines initially, with the possibility you may require more. Please discuss this with your gastroenterologist to ensure you have an individualised care plan.'

The medical committee members feel it is far safer practice for all patients, including acromegalics, to follow the standard bowel preparation guidelines in the first instance. If this fails, then to have more bowel preparation, prior to the procedure or to have the procedure re-booked. This follows standard guidelines for any individual that the bowel preparation has not been successful on. They fear if we state that persons with acromegaly require additional bowel preparation (as standard), it would cause greater harm, for example, with more having adrenal crisis, and as it is not going to be required for all.

Pat
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Re: colonoscopy fact sheet

Postby member_41389 » Thu May 17, 2018 8:26 pm

Hi Pat
Thanks for this and the quick reaction.
I appreciate the concern and the need for balance. However from my perspective I am unsure that having a failed colonoscopy attempt is safer than having an extra dose of prep.
I'm sure that the patient is not in a position to know whether or not clearance has been successful. In my experience the second attempt at colonoscopy (after successful clearance we thought) entailed a procedure lasting almost 2 hours as they had to do a wash and vacuum process along the whole length of the colon. It was so stressful, despite sedation, that I had a vasovagal faint and was retained in hospital overnight.
All the best
Tim
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Re: colonoscopy fact sheet

Postby member_41389 » Sat May 19, 2018 7:48 pm

Pat wrote:Hi Tim

we have now added the following to the fact sheet:
'Some individuals may require additional bowel preparation sachets due to their acromegaly or individual requirements. However, we suggest you follow your hospitals standard guidelines initially, with the possibility you may require more. Please discuss this with your gastroenterologist to ensure you have an individualised care plan.'
......
Pat


Pat
I've just checked the version on the website and can't find this sentence in it. Have I followed an old link or has the update failed?
I was about to refer to this on the Acromegaly group I'm in on Facebook but now won't.

In hindsight I also laughed at the reference to "your gastroenterologist" they only appear when you've been prepped and waiting feeling a cold draught; who you get is the luck of the draw and they have no interest in you since they expect to never see you again.

All the best
Tim
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Re: colonoscopy fact sheet

Postby plum » Sat May 19, 2018 9:56 pm

hi
I fully agree with Tim
from my experience the gastroenterology staff tend not to understand or even be aware of our differences.
has any decent research been done on the number of sachets needed for adequate prep in our case?

what's the point of a screening program if it doesn't pick up the problem? if they can't see properly due to inadequate clearing, then doesn't that mean that they might not pick up a cancer risk until the next colonoscopy in 3 years' time?

would a double dose of hydrocortisone prevent an adrenal crisis?

plum
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Re: colonoscopy fact sheet

Postby Pat » Sun May 20, 2018 9:37 am

hi Tim

this will be uploaded on website next week; I'd been on leave, so slight delay.
thanks
Pat
 
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Re: colonoscopy fact sheet

Postby member_41389 » Fri May 25, 2018 8:51 pm

Hi Pat

The fact sheet has still not been updated as far as I can see. In fact I think it's an intermediate form - the co-inside typo is still there but the low/medium risk bit is correct.
Cheers
Tim
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