Crohns / ulcerative colitis sufferers

dl8860 · 13 Jun 2018 at 15:18

I've had 2 on NHS and one privately. The private one was a much more civilised affair, but I'm back NHS this time so not looking forward to it too much. The prep is indeed the worst, I've had a couple of different types before, I think moviprep and citrix. One was a lot harder to chug than the other, but I can't remember which. I have moviprep this time, so hope that was the good one!

The one upside is the guilt free stuffing of your face afterwards following the day or so of fasting. When I had it done privately they had an excellent post-procedure menu, sadly on NHS it's usually just tea and toast in my experience.

dowie · 13 Jun 2018 at 15:37

Both times I've had it done I've pretty much gone to sleep half way through. I remember being sedated and then getting to watch the first bit of footage on the monitor then the next thing I know the nurse is waking me up.

Thekwango · 13 Jun 2018 at 15:47

going for colonoscopy on monday as i've been having quite a few flares recently. tapering the steroids off now, thank **** - i'm blew up like the stay puft marshmallow man - but at least they are working. they also took me off my asacol and put me on salofalk granules...weird things that are a nightmare to swallow!

monday's going to be 'dfferent' to my normal experiences. previously i've always had to take movi/kleen prep the evening before to flush out - not so tihs time.....getting a good ole enema instead!! fun times!!

dowie said:
I remember being sedated and then getting to watch the first bit of footage on the monitor then the next thing I know the nurse is waking me up.

of the 4 or 5 i've had i've only ever been given a mild touch of gas to aid with the discomfort - which is fine by me - i quite enjoy watching it all on the monitor!!

dl8860 · 13 Jun 2018 at 15:47

On sedation, my first one was unsedated (I didn't have anyone to help me get home after), my second was very well sedated (privately) and third one was sedated too but not so good. I've also heard some people don't really benefit from the sedation. I wonder if different doctors use different amounts.

dl8860 · 13 Jun 2018 at 15:48

Thekwango said:
going for colonoscopy on monday as i've been having quite a few flares recently. tapering the steroids off now, thank **** - i'm blew up like the stay puft marshmallow man - but at least they are working. they also took me off my asacol and put me on salofalk granules...weird things that are a nightmare to swallow!

monday's going to be 'dfferent' to my normal experiences. previously i've always had to take movi/kleen prep the evening before to flush out - not so tihs time.....getting a good ole enema instead!! fun times!!

of the 4 or 5 i've had i've only ever been given a mild touch of gas to aid with the discomfort - which is fine by me - i quite enjoy watching it all on the monitor!!

Interesting, have never had an enema. It would have to be pretty bad to be worse than the usual prep. Does that mean you don't have to fast too?

Thekwango · 13 Jun 2018 at 16:06

dl8860 said:
Interesting, have never had an enema. It would have to be pretty bad to be worse than the usual prep. Does that mean you don't have to fast too?

apparently not. just turn up and get 'hosed out' :eek:

i've generally never minded drinking the movi/kleen prep....it's the fasting i hate....i like my grub too much!! but you're right. the utter pleasure after the event when you get to stuff your face is glorious! makes it all worth while.....

edit: if you struggle with drinking the liquids a drop or 2 of lemon barely really helps the taste.

DB_SamX · 13 Jun 2018 at 17:24

Thekwango said:
of the 4 or 5 i've had i've only ever been given a mild touch of gas to aid with the discomfort - which is fine by me - i quite enjoy watching it all on the monitor!!

I've always ask for sedation. I have no interest in watching my guts, or being awake whilst they do it. I remember the first time being on gas and air alone, and being in sooo much pain.

p.s. colonoscopy for me tomorrow!

p.p.s. Anyone take part in Crohns and Colitis's UK "walk it" charity walks? I was a route marshall for the London one on Saturday - my 7th or 8th time doing it I think.

Thekwango · 18 Jun 2018 at 15:06

Oh gimme movi/Klerk prep any day of the week. Enemas are not fun.....in fact I’d go as far as to say they are a pain in the arse!

dl8860 · 20 Jun 2018 at 10:37

Can I ask what experience you guys have had with booking time off work for a colonoscopy? In my previous job (big multinational company, big on work life balance etc) I had no problem booking the time off as fully paid sick leave. However my current job is a much smaller company, and I asked HR yesterday if I could book it as sick and she said it would have to be taken as leave. I asked if she could double check (I have ****** all annual leave left due to taking 2 weeks after my son was born recently and not qualifying for statutory Paternity leave), and in the meantime thought I'd check what others have found.

There is no provision in my employment contract regarding sick days, so I imagine if the company plays hardball I will be out of luck, unless anyone knows of anything I don't?

wingman · 20 Jun 2018 at 10:50

dl8860 said:
Can I ask what experience you guys have had with booking time off work for a colonoscopy? In my previous job (big multinational company, big on work life balance etc) I had no problem booking the time off as fully paid sick leave. However my current job is a much smaller company, and I asked HR yesterday if I could book it as sick and she said it would have to be taken as leave. I asked if she could double check (I have ****** all annual leave left due to taking 2 weeks after my son was born recently and not qualifying for statutory Paternity leave), and in the meantime thought I'd check what others have found.

There is no provision in my employment contract regarding sick days, so I imagine if the company plays hardball I will be out of luck, unless anyone knows of anything I don't?

Can't offer any advice but I'd also be interested to know as I also used to work for a large multinational, and it simply wasn't a problem taking it as sick leave, but I know the smaller company I work for now would see it is a problem. I think to qualify for any sick pay I need to follow the SSP guidelines.

dirtychinchilla · 20 Jun 2018 at 11:35

dl8860 said:
Can I ask what experience you guys have had with booking time off work for a colonoscopy? In my previous job (big multinational company, big on work life balance etc) I had no problem booking the time off as fully paid sick leave. However my current job is a much smaller company, and I asked HR yesterday if I could book it as sick and she said it would have to be taken as leave. I asked if she could double check (I have ****** all annual leave left due to taking 2 weeks after my son was born recently and not qualifying for statutory Paternity leave), and in the meantime thought I'd check what others have found.

There is no provision in my employment contract regarding sick days, so I imagine if the company plays hardball I will be out of luck, unless anyone knows of anything I don't?

I work for a small company, had about 30 employees when I started and they've taken it in their stride. If I do just have an appointment to go to, I tend to book off a day or a half day. However, for the infusion that I have to have every 8 weeks, I have established the schedule with the company and therefore take it as sick every time.

I believe the company should appreciate that you are trying to care for yourself, and therefore are likely to be better of long term, which they should be interested in. Interestingly, they may actually, for insurance reasons, need you to be signed off. I'm not sure on the details of that though.

beachBOYken · 20 Jun 2018 at 11:42

I have been diagnosed with Ulcerative Colitis, well about 7 years ago now, I would say my case is quite mild as generally I'm perfectly fine and have not had any flare ups for well over a year, when I do I just up my medication.
Just a little thing I think may have helped me is that I rarely drink tea anymore, something I used to drink a lot of, since I switched to drinking coffee I have been much better, I do still drink tea but very little, weather stopping drinking as much tea has helped, I can't say, but I certainly feel like its helped me at this present time.

Thekwango · 20 Jun 2018 at 12:01

dirtychinchilla said:
I work for a small company, had about 30 employees when I started and they've taken it in their stride. If I do just have an appointment to go to, I tend to book off a day or a half day. However, for the infusion that I have to have every 8 weeks, I have established the schedule with the company and therefore take it as sick every time.

I believe the company should appreciate that you are trying to care for yourself, and therefore are likely to be better of long term, which they should be interested in. Interestingly, they may actually, for insurance reasons, need you to be signed off. I'm not sure on the details of that though.

much the same as myself. if I have annual leave I tend to book days off using that. if I'm running low they just let me book a sickie off on full pay so I'm lucky to that extent. but a decent employer, if you play fair, should be accommodating given that you are, as you say , trying to get yourself better.

in a previous company they initially were playing it much like dl8860 is experiencing - I spoke with the general manager and explained my situation and he informed hr to give me time off in future on full pay, provided I showed them a copy of doctors/hospital appointment in advance.

@dl8860 maybe speak to hr and explain to them. or a line manager that has some sway over them? hopefully just some drone following the company rules to the letter.

dl8860 · 20 Jun 2018 at 13:03

Thanks for all the replies guys. Had a word just now with one of the directors who I get on well with and he's said definitely book it as a sick day, regardless of what is or isn't in my contract and he'll override anything that needs overriding. Indeed is it often the case HR just toe the line and actually given a reasonable explanation something can be accommodated. Happy days!

dirtychinchilla · 20 Jun 2018 at 14:56

Well done!

DB_SamX · 21 Jun 2018 at 00:07

WHen I was at a multinational several years ago, I started taking this the inpatient and recovery days as leave, until I had to tell a director that it left me too few holidays, and he said I could take them as sick leave.

RIght, now, at a smaller one of 60ish people, I either take them as sick leave or flexi time (when I have enough saved up) just so taht my sick leave record isn't too bad.

dowie · 21 Jun 2018 at 00:10

DB_SamX said:
WHen I was at a multinational several years ago, I started taking this the inpatient and recovery days as leave, until I had to tell a director that it left me too few holidays, and he said I could take them as sick leave.

RIght, now, at a smaller one of 60ish people, I either take them as sick leave or flexi time (when I have enough saved up) just so taht my sick leave record isn't too bad.

I don't think you should worry about your sick leave record being bad when you have a chronic condition - if you have an operation or a colonoscopy then that is a reasonable reason to take time off... your employer should only be worried about what you actually produce/your overall work output etc...

jacksgotbones · 21 Jun 2018 at 10:52

I have a Flexible Sigmoidoscopy in less than 2 weeks for possible crohns or UC - cannot wait :/ I have said yes to sedation, though dreading a cannula more that the procedure gah

dl8860 · 21 Jun 2018 at 11:14

jacksgotbones said:
I have a Flexible Sigmoidoscopy in less than 2 weeks for possible crohns or UC - cannot wait :/ I have said yes to sedation, though dreading a cannula more that the procedure gah

Have you had a cannula before? They aren't bad at all as long as they are fitted properly. In my experience the sedation is certainly worth it. Hope it goes well.

Thekwango · 21 Jun 2018 at 11:22

jacksgotbones said:
I have a Flexible Sigmoidoscopy in less than 2 weeks for possible crohns or UC - cannot wait :/ I have said yes to sedation, though dreading a cannula more that the procedure gah

i know different folks have different thresholds but i would'nt bother with the sedation for a FS - they're in and out in a few mins. there is a little discomfort but i'd rather that than the hours of feeling 'urgh' and groggy after sedation

dl8860 said:
In my experience the sedation is certainly worth it. Hope it goes well.

i'd defo opt for a bit of sedation for a full on colonoscopy but not for the FS - but then i hate the whole crappy feeling after sedation. i'd rather put up with a bit of discomfort for a couple of minutes than the recovery from sedation.