Bowel prep

[Haveyoutriedyoga]

Summary: If you have to do bowel prep, be aware that there ARE adjustments that can be made if you need them.


I am on a temporary very low carb diet to manage reactive hypoglycemia, which make my symptoms far more extreme and sudden, and triggers POTS and migraine. I am on a lot of medication and 9 different times of day.

The bowel prep requires three days of a low reside diet, then a fast and high doses of liquid laxative to clear the bowels the night before the procedure.

If I followed the three day diet which excludes almost all vegetables I would be somewhat struggling already and certainly not for prepared for a day of fasting and the laxative procedure (and the non absorption of extended release medication and the electrolytes imbalances that may cause) then a stressful invasive early morning procedure, no way.

After six months of me and the clinic team trying to call each others bluff I won, and the consultant said that I could eat what I wanted for the three day diet except for nuts and seeds, and adjusted the times of the laxative process so that I could let my medication work.

I was frustrated and exhausted by the because I has been saying to nurses for six months that I have to follow this diet to manage acute symptoms AND the PEM from those acute symptoms, explained I have diagnoses if MECFS, have POTS/OH, migraines, etc. and that it was REALLY important that I mitigate the crash that this whole process WILL cause.
Nurse: "have you got mental health support? Then have you spoken to them about these concerns" and "there's nothing on your records flagging any of this up".

Anyway, the result was that I followed the three day diet as closely as reasonably possible for ME, ie avoided the most problematic vegetables, avoided veg and animal skin, cooked things a bit extra, I don't eat much ready made food but where I do e.g. a yogurt with orange peel bits in I switched to plain yogurt.

And on my report, it said "bowel prep: excellent". All that six months of negotiation, stand offs and FUSS over nothing.

If you're being asked to do bowel prep and are on a diet that makes it difficult or on medications that will be interrupted or have any reason for needing adjustments then ask them nicely once and then STAND YOUR GROUND.

 

[Fainbrog]

Well done for standing your ground. The one-size-fits-all that we so often encounter in living with ME is so frustrating when you finally get someone to accept that there are other ways things can be done.

 

[MeSci]

I had bowel problems recently, lasting about 8 months, and asked the GP if I could have an colonoscopy under anaesthetic. The answer was no.

I said that I would look into having it done privately, and was again told that I would not be offered an anaesthetic.

Luckily I found the cause of my diarrhoea - overuse of desmopressin - but I wonder how many people die from bowel cancer in the UK due to terror of unanaesthetised colonoscopy.

By the way, I have been taking desmopressin for many years with no problems, and have recently realised that my need for it varies a lot - maybe more than previously - so I judge whether I need it by my symptoms, i.e. how much I am urinating.

 

[Haveyoutriedyoga]

I had bowel problems recently, lasting about 8 months, and asked the GP if I could have an colonoscopy under anaesthetic. The answer was no.

I said that I would look into having it done privately, and was again told that I would not be offered an anaesthetic.

Luckily I found the cause of my diarrhoea - overuse of desmopressin - but I wonder how many people die from bowel cancer in the UK due to terror of unanaesthetised colonoscopy.

By the way, I have been taking desmopressin for many years with no problems, and have recently realised that my need for it varies a lot - maybe more than previously - so I judge whether I need it by my symptoms, i.e. how much I am urinating.

I read (after my procedure) on a random forum that it's better to have these sorts of procedures fully awake if you can tolerate it, because when you are sedated or under anaesthetic they do the procedure quickly and don't need to take as much care going around corners and forcing the tube through difficult bits, and that this can cause more pain after the procedure.

"Sedated colonoscopy requires different insertion technique. While sedated patients tolerate insertion by pushing through loops, negotiation and withdrawal and straightening out loops needs to be performed during insertion in unsedated colonoscopy. Thus, cecum intubation times in unsedated colonoscopy are often some minutes longer on average. But these minutes are well spent, as recovery time is much shorter than with sedation" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4874794/

I had a painful procedure (gas and air did NUTHIN) but no pain whatsoever afterwards.

 

[lunarainbows]

I had bowel problems recently, lasting about 8 months, and asked the GP if I could have an colonoscopy under anaesthetic. The answer was no.

I said that I would look into having it done privately, and was again told that I would not be offered an anaesthetic.

I had a colonoscopy, endoscopy and endoscopic ultrasound under general anaesthetic (privately, but at an NHS hospital). So it definitely can be done..

and I definitely know that hospitals often run lists specifically for patients who need general anaesthetic and can’t tolerate the procedures otherwise.

It’s not up to the GP to decide whether it can be done under general anaesthetic or not. That’s a consultant’s and anaesthetist’s job. It really upsets me when some doctors make people’s lives difficult because they have no understanding of the terror that these procedures can sometimes cause!

 

[Kitty]

It all seems very inconsistent.

I didn't want an anaesthetic because I'd have needed to find someone to sit with me for 24 hours afterwards, and my mates were self employed and needed to be earning rather than babysitting me. The hospital tried to convince me it would be much better to be sedated, as some people find lower endoscopies painful, but in the event I was fine without. I was able to drive home after an hour's observation, which meant I didn't get nearly as exhausted and overstimulated as I would if I'd had to stay in the department for the best part of a day.

There were no restrictions at all on what I could eat in the lead-up, though, either time. They just told me when to take the hideous laxative stuff and that was that.

 

[Haveyoutriedyoga]

It all seems very inconsistent.

I didn't want an anaesthetic because I'd have needed to find someone to sit with me for 24 hours afterwards, and my mates were self employed and needed to be earning rather than babysitting me. The hospital tried to convince me it would be much better to be sedated, as some people find lower endoscopies painful, but in the event I was fine without. I was able to drive home after an hour's observation, which meant I didn't get nearly as exhausted and overstimulated as I would if I'd had to stay in the department for the best part of a day.

There were no restrictions at all on what I could eat in the lead-up, though, either time. They just told me when to take the hideous laxative stuff and that was that.

No diet at all?! So inconsistent! Can't believe mine was delayed for six months and I spent probably 3 hours total on the phone to multiple people repeating myself and spent days thinking about how to convince them and researching everything

I also didn't choose sedation due to not having anybody to easily get to pick me up and stay with me.

 

[Kitty]

No diet at all?!

Literally never mentioned, either time.

I guess it's possible the reason for the procedure makes a difference. In my case it was just general investigation, firstly to rule out malignancy and then later any inflammatory conditions.

It turned out my problems were caused by a sudden onset, absurdly severe intolerance to even tiny amounts of potato starch—which nobody had heard of before, me included, so it took for-bloody-ever to sort it out.

 

[Arnie Pye]

I wonder how many people die from bowel cancer in the UK due to terror of unanaesthetised colonoscopy.

I would suffer from terror of unanaesthetised colonoscopy. I had a flexible sigmoidoscopy (like a colonoscopy but doesn't go nearly as far) some years ago, and I was told beforehand that there would be gas and air available if I found it painful. On the day there was no gas and air. It was absolutely excruciating and I struggled not to scream. I have a history of severe health problems affecting the left side of my abdomen and this has caused severe adhesions.

I did finally get a colonoscopy under anaesthetic three years later which found the source of the problem I had. I'd had a GI bleed for several years by that time and was extremely ill as a result. I have never completely recovered from that long-term bleed.

One of the doctors I saw after the sigmoidoscopy but before the colonoscopy told me (her words and emphasis) that there is nothing - absolutely nothing - that can justify doing a sigmoidoscopy or a colonoscopy under anaesthetic. I had to go to a different hospital to get it done.

 

[alktipping]

sounds like a lot of doctors prefer to serve their ego rather than a patients needs .there is so much wrong with these attitudes i wonder why they became doctors at all .

 

[Sean]

I had a colonoscopy in December, and followed the bowel clearing protocol to the letter. All I got for my troubles was an "average" for preparation.

 

[bobbler]

I would suffer from terror of unanaesthetised colonoscopy. I had a flexible sigmoidoscopy (like a colonoscopy but doesn't go nearly as far) some years ago, and I was told beforehand that there would be gas and air available if I found it painful. On the day there was no gas and air. It was absolutely excruciating and I struggled not to scream. I have a history of severe health problems affecting the left side of my abdomen and this has caused severe adhesions.

I did finally get a colonoscopy under anaesthetic three years later which found the source of the problem I had. I'd had a GI bleed for several years by that time and was extremely ill as a result. I have never completely recovered from that long-term bleed.

One of the doctors I saw after the sigmoidoscopy but before the colonoscopy told me (her words and emphasis) that there is nothing - absolutely nothing - that can justify doing a sigmoidoscopy or a colonoscopy under anaesthetic. I had to go to a different hospital to get it done.

Sounds like that last para made it clear approx where the source of what you got stitched up to go through was.

Outrageous that one loony can just wake up one day with a thought in their head like that and impose it for however many generations as if it were fact.

I'm glad that you went elsewhere, frustrated that we don't train enough of these people to let those who are lacking go - and that person is lacking, but clearly kept on merely by either politics or some dearth of those who can do the basic mechanics/less than bare minimum but better than nothing. Sad that we can't identify and fix the aspects of the situation that mean such people can slide under such radars.

I do so wish, and it really isn't unreasonable given there are other forms of 'restorative justice' (is that the term where someone has to sit opposite the victim and hear the impact of something on them and their life?) as basics, that such individuals were literally forced to sit opposite people like you and then be tested on whether they took in what you'd said sufficiently as to whether they were even sorry or could learn action-consequences and update their knowledge accordingly. I'm almost suspicious of the internal motive of ending up believing something like that for oneself.