Freaking out about upcoming colonoscopy - how to get control of myself?

[Phoenix(not)]

I have a condition called Barretts Oesophagus aswell as PTSD. I have had more than several colonoscopy and oesophegus endoscopic procedures. In New Zealand the anaesthetic used is a hypnotic class drug injection (Ruhypnol or similar) and not a "general" anaesthetic. We are conscious but otherwise totally unaware of the procedure and suddenly regain awareness a couple of hours later and it seems like minutes only has elapsed. I was very apprehensive about the first procedure only and only dislike the dietary constraints, nil by mouth for 16h prior (sips of water allowed). I had assumed this class of anaesthetic was universal, worldwide for colonoscopy procedures. It's worth asking about. I hope this adds value to the thread.

 

[RVA21]

I'd likely be demanding to have full sedation. One time (I know this is different) they tried to do an endoscopy on me without sedation and I gagged so much they had to stop and I was too scared even to go back (luckily it was not absolutely essential that it be done). It would make it easier for you, and for them I would imagine.

 

[Fadeaway]

I have a condition called Barretts Oesophagus

My husband has that condition, have you found anything that helps?

 

[Phoenix(not)]

My husband has that condition, have you found anything that helps?

I take 1 No. 40mg Pantoprazole daily. It is an anti-acid reflux medication. It's the acid reflux causing repeated internal injury that causes this Barretts disorder. I'm monitored every two years for abnormal cells in Oesophegus and Colon. They keep finding them but thanks to this regular monitoring they are promptly removed so condition is really just a matter of taking the pill each day and letting them check me out periodically. I do not fear this hypnotic anaesthetic. I find it fascinating and no matter how hard I try to maintain awareness, I always fail and it returns about 2 hours later. Apparently I am conscious and can respond to surgeon's instructions. I have met several other Barretts patients and my experience is typical. So optimistic is always best. I hope this is helpful to you.

 

[lostforgottensoul]

I was prescribed bentyl for IBS and it worked and thank god it went into remission. I would be on the floor rolling in pain, screaming, anytime I ate anything. Horrid to deal with!

When I had my upper GI looked at (scope down the troat which found my bleeding ulcer) they gave me that "don't remember" drug that they often give you when going into surgery. You literally wake up and don't remember any of it though you were awake for the procedure. Don't they do that for a colonoscopy as well? Then you really don't have to worry about PTSD triggers as you literally don't remember it.

 

[Phoenix(not)]

I was prescribed bentyl for IBS and it worked and thank god it went into remission. I would be on the floor rolling in pain, screaming, anytime I ate anything. Horrid to deal with!

When I had my upper GI looked at (scope down the troat which found my bleeding ulcer) they gave me that "don't remember" drug that they often give you when going into surgery. You literally wake up and don't remember any of it though you were awake for the procedure. Don't they do that for a colonoscopy as well? Then you really don't have to worry about PTSD triggers as you literally don't remember it.

I don't know about IBS treatments, only the Barretts. In New Zealand they use the same sedative for both procedures, in the private and public hospitals. I was surprised to read it was not universal, globally used.

 

[whatamidoinghere19]

Almost 20 years ago, I was diagnosed with IBS. I was given medication, which helped. For years now, it has calmed right down with only the odd blip. The last few months though, my stomach has been bad. Very painful. The long-term IBS medication isn't working at all.

GP felt I should have a colonoscopy (though she doesn't think it's actually going to be anything serious, probably IBS, but she wants to be thorough and check). She referred me to a specialist, I saw him for an initial consultation a few weeks ago and colonoscopy is now booked in in two weeks time.

When GP initially suggested it, I felt fairly ok about it because I thought I'd had one before and I remembered it not being too bad. When the specialist talked me through it though, I realised I hadn't had a full colonoscopy before, only the procedure that just goes round the lower part of the bowel (flexible sigmoidoscopy??) And, thinking about it now, I don't actually remember anything very much about it, apart from that the woman doing it kept trying to get me to look at the screen and watch what was happening but I didn't want to. In retrospect, I think I probably dissociated, which was my MO with doctors/medical procedures for years, though I didn't really know it at the time.

Now, I am freaking out!

One of the reasons I have PTSD is doctor/medical procedure related stuff when I was a kid, so I get that this is triggery for me.
And a story in the news that I posted elsewhere here has also recently stirred this stuff up. So, probably the timing isn't great.

And I get that it's not a very pleasant thing so most people would be nervous/not looking forward to it etc.

But I think I am having an over the top reaction about stupid things around it and I don't know how I'm actually going to manage to keep my shit together on the day. I can't seem to get control of myself, even just thinking about it.

Things I am freaking out about:

1) Something being put in my body - and staying in my body, moving around quite a big area for quite a while
2) I won't be able to get away
3) Having an injection in my hand - I actively want whatever pain relief/sedative they are willing to give me but I'm squeamish about veins and when I had a hip surgery a couple of years ago, the moment when the anaesthetist tried to put the cannula in my hand was the moment I got triggered out of my mind and it was just pure, brutal terror
4) I have to lay curled on my side. This feels like a really vulnerable position, which is very anxiety-making. Plus, it reminds me of a lumber puncture that went wrong when I was a kid. So, more anxiety-making.

I know these things ^^^ are irrational and stupid. But just writing this out, I feel so light-headed and anxious. I just can't seem to get on top of these thoughts to calm myself down. And I don't know how to avoid getting triggered on the day. Any ideas??

I say don't worry, just be clear that you don't want to feel anything and you will not. It's standard procedure in most places to administer "twilight" anesthetic which will put you out and clueless as to what happened. The bed is comfortable and a cozy warm blanket holds you before you go in. Hope that helps ;=)

 

[Chris-duck]

Yeah, you'd get pretty good sedation, IME general anaesthetic hasn't been necessary because even though I've been awake (and most people seem to have just been asleep through it), conscious sedation has totally been adequate anyway. General would be possible but remember you can say to stop at any point if you're uncomfortable so I'd recommend trying the conscious sedation route first because of risks with general anaesthetic, and the pretty big delay you'd have if you had to wait for a theatre to do it. It's totally okay if you discover that's not adequate, but yeah, it most likely would end up being tolerable with conscious sedation.

Re the cannula I'm not sure what to suggest. For mine it was put in right before I was sedated and taken out at some point before I was awake enough to remember it. Is there something that could distract you for the minute or so between getting it inserted and being sedated? Nurses can chat at you incessantly if you request it, music is totally allowed, portable dvd player etc.

Hope that any of that is helpful..

 

[barefoot]

Yes, @Chris-duck - I don't really want to go down the general anaesthetic route if I can help it as I always feel wretched for days afterwards! It usually makes me emotionally out of whack for quite a while. So, I would prefer to avoid.

I think I was thrown by the term 'conscious sedation' – something some of you guys said here, not a term my consultant used. I didn't equate 'conscious' with being asleep!

GP said they will likely use a drug called midazolam to sedate me.

Anyhow...I got myself into a bit of a state about this whole thing....spoke to my T about it...she said we need to 'stage manage' every part of the process and while speaking to the consultant's secretary was good, it would make sense to speak to the consultant directly. She said she was happy to speak to him in addition or as well as me speaking to him if I wanted.

So, I have asked her to speak to him. Part of me feels very disappointed with myself that I haven't opted to call him myself – that this was an opportunity for self-advocacy and I have wimped out and passed the buck. But another part is just relieved because even just the thought of speaking to him on the phone was stressing me out so much.

 

[blackemerald1]

Oh @barefoot - I'm glad you've got such a good & sensitive T!
pfft re being disappointed in yourself!
This is a good way of dealing with the concerns you have. This will get the message across to your consultant that you must not have any screw ups on the day! It's great being one's own advocate but sometimes, like this time, it's better for someone who is well qualified to do it on your behalf.
Well done for discussing this with your T.

 

[barefoot]

Thanks @blackemerald1 I do feel a bit...inadequate, I suppose, that I wasn't brave enough to do this myself. But I know my T will do a good job of the call (I imagine she will be very clear, firm and forthright!) and if it's saving me a lot of stress I guess that makes it the best decision this time...

 

[TheTwinlessTwin]

For everyone confused about sedation and colonoscopies. It is referred to as light sedation, you are not in a coma or require ventillation. You will however most likely not remember or feel a thing. You will be conscious and aware but minimally. You are normally given a mixture of IV midazolam and fentanyl. It wears off in about 45min unless they give you more during the procedure. Normally only dentists use propofol and it is ethically questionable to use for basic procedures.

Do not take any medications unless they know about it first!!! They need to make sure your liver is functioning normal, no blood abnormalities, and vitals stay good. Drug effects and interactions can mess that up. Taking valium before they give you midazolam/fent is very dangerous! You need to discuss medications with them, what you can and can't take and when. Including anything like diet supplements, CBD, or illicit drugs.

Talk to your intake nurse and the team in the operating room on the day of it. They are experienced in helping people get through this. I was scheduled for lithotropsy on my kidney and the intake nurse had 12 kidney stones before! Talking to her made me feel safe and not so alone. My last colonoscopy for crohn's the anesthesiologist was such a sweetie and again I felt like I had someone supporting me. I focused on her eyes and eyeliner the entire time and with the midazolam all was fine and calm. Communicate what you see, feel, taste, hear, think, everything. The more they know, the more they will be attuned to your issues and needs.

You can deny medical treatment to a reasonable point (not life-threatening or in the middle of a procedure). If someone restrains you this time tell them that you do not give your informed consent and that you will report them for violating your medical rights and malpractice. 99% of professionals will stop immediately. They are afraid of administrative fallout and legal culpability. I once did this on my way to the OR for an upper endoscopy and colonoscopy. They only told me about the colonoscopy. When I found out that they were going to do other stuff without me knowing I revoked my consent and left.

You will also be talking to your anesthesiologist the entire time (you probably won't remember) because they need to make sure you are not overdosing or experiencing pain, discomfort, or anxiety. They balance you between enough drugs to not care or suffer and too much drugs and coma time.

If you don't trust men you might request that at least one member of the team is female. I did prefer having two women there even though I trust my male GI doctor. I just wouldn't feel as safe. Men can be very rough, uncaring, and sexual so I don't want a completely male team to be honest.

One pro tip for the fasting and hunger... gummy bears and worms. No purple, orange, or red because the dye can look like blood or infection but gelatin breaks down into nothing in your body. I even make chicken broth jello with unflavored gelatin. Thank pornstars and sex workers for that tid-bit of knowledge. They advance so much butt science it's scary. ?

My personal favorite thing to do is have the procedure as early in the morning as possible. You will be so tired you will sleep through it all. The team is also very fresh because you aren't the seventh scopy of that day.

You might have a small amount of blood or mucous in your rectum afterwards. Don't panic, mine cleared up almost immediately. It's normally from biopsy and lubrication, not an ulcer/perforation or assault.

You might want to have them test your blood for anti-Saccharomyces Cerevisiae Antibodies (ASCA) IgA and IgG. Then Anti-neutrophil Cytoplasmic Antibodies (ANCA). That will help rule out IBD from IBS. It can also yell you what IBD you have if you do have it, UC or CD.

Get help if you do have IBD and research any meds they give you. I have had decent success with cannabinoids and lifestyle changes. I have also been poisoned twice. Once by comitant use of CBD (CYP3A4 inhibitor) and haloperidol (they thought I had cannabis hyperemesis syndrome, rookie on-call doctor) and another time from metoclopramide (reversed with IV diphenhydramine). I also have financial issues, am almost disabled, and frequently deal with mental health issues from crohn's. When you already have PTSD that can lead to serious dysregulation and suicidal thoughts. Take care of yourself ?