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

[barefoot]

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??

 

[Fadeaway]

And I don't know how to avoid getting triggered on the day. Any ideas?

Yup, have themm puta you under. I am going to be having another one soon myself. I flat out told due to PTSD I have to be put under. Unpredictable fight or flight during the procedures makes it unsafe not to.

 

[blackemerald1]

Hey @barefoot it sounds like the procedure is going to be difficult for you to handle. You seemed to have thought of all the reasons why and I can appreciate the problems.

I agree with @Fadeaway - either extremely heavy sedation for the procedure or anesthesia. Make sure you have someone with you to help you come out of it all and to get you home safely.

All the best,
:hug:

 

[barefoot]

You mean get a full on anaesthetic?

I did actually ask the consultant if he could 'put me out' for it and he laughed and said no. But, admittedly, I said it in a joking/not joking way and I didn't mention PTSD. I just said I'd be very anxious about it. He said they'd give me an injection for sedation and pain relief. I asked if I could take a valium in the morning beforehand and he said that was fine.
It's NHS so I doubt they will go to the expense of full anaesthetic and the longer recovery time that will take etc? In other words, I don't think they will give that too me, just because I've asked for it.

I did call his secretary last week as there had been a mix up about dates. I blurted out to her that I have PTSD and that doctors/medical things are triggering and that I don't like being touched so would really appreciate it if they could be very communicative with me (eg telling me what they are about to do before they touch me). She was very kind and understanding, thanked me for letting her know and assured me she would pass the info on to the doctor and nurses so that they would be mindful. And she assured me that my consultant is a very nice and very experienced.

So...I feel pleased with myself that I was able to do that. But I have also had experiences before where I've said things to secretaries, they've assured me that they've discussed with the consultant/passed info on...then I get there and the message doesn't seem to have got through and then it feels awkward and I get panicky and then I find it impossible to advocate for myself in the moment.

I just want to cry about it :-(

I will try to discuss it with my T this week. Obviously, she knows about my old doctor-related stuff - that forms quite a key context of our work. And she has helped me prep for other medical appointments, which has been helpful. She even came and met me before a medical appt once and also phoned a medical secretary on my behalf before, so she is supportive about this kind of stuff. But we haven't really talked about the GP in the news story, which has triggered me and caused me some distress. And we had a bit of a rupture last week, out of the blue...I got badly triggered then too...I think we are ok now but I'm not sure how I will feel about talking about this difficult stuff when I see her this week. But, anyway....even if I do speak to her about it and she makes suggestions and is supportive as she's been in the past....my getting triggered and then totally failing to advocate for myself in the moment is the thing I am really worried about.

 

[Mach123]

I'm sorry I'm having medical issues also. It's really hard to deal and I had a rough week. I have an appointment on Fri to discuss my biopsy results and I'm expecting them to tell me I have cancer and need surgery. (Prostate) I hope they tell me something else and anything short of that will be a cause for celebration but I'm trying to be prepared mentally.

I've had quite a few procedures and minor surgeries and in general I don't mind. I've had a colonoscopy three times I think and it was general anesthetic so I didn't mind.

I hope you feel better you might ask them for a one off prescription of Valium or something.

I hope you feel better.

 

[TruthSeeker]

You mean get a full on anaesthetic?

I did actually ask the consultant if he could 'put me out' for it and he laughed and said no. But, admittedly, I said it in a joking/not joking way and I didn't mention PTSD. I just said I'd be very anxious about it. He said they'd give me an injection for sedation and pain relief. I asked if I could take a valium in the morning beforehand and he said that was fine.
It's NHS so I doubt they will go to the expense of full anaesthetic and the longer recovery time that will take etc? In other words, I don't think they will give that too me, just because I've asked for it.

I did call his secretary last week as there had been a mix up about dates. I blurted out to her that I have PTSD and that doctors/medical things are triggering and that I don't like being touched so would really appreciate it if they could be very communicative with me (eg telling me what they are about to do before they touch me). She was very kind and understanding, thanked me for letting her know and assured me she would pass the info on to the doctor and nurses so that they would be mindful. And she assured me that my consultant is a very nice and very experienced.

So...I feel pleased with myself that I was able to do that. But I have also had experiences before where I've said things to secretaries, they've assured me that they've discussed with the consultant/passed info on...then I get there and the message doesn't seem to have got through and then it feels awkward and I get panicky and then I find it impossible to advocate for myself in the moment.

I just want to cry about it :-(

I will try to discuss it with my T this week. Obviously, she knows about my old doctor-related stuff - that forms quite a key context of our work. And she has helped me prep for other medical appointments, which has been helpful. She even came and met me before a medical appt once and also phoned a medical secretary on my behalf before, so she is supportive about this kind of stuff. But we haven't really talked about the GP in the news story, which has triggered me and caused me some distress. And we had a bit of a rupture last week, out of the blue...I got badly triggered then too...I think we are ok now but I'm not sure how I will feel about talking about this difficult stuff when I see her this week. But, anyway....even if I do speak to her about it and she makes suggestions and is supportive as she's been in the past....my getting triggered and then totally failing to advocate for myself in the moment is the thing I am really worried about.

Every colonoscopy I have had my sedation had been light, and I couldn’t hear anything or remember. If you have sedation to relax you prior to the procedure, would that work? I’m a colonoscopy pro- every year or two for quite a while now. Do your part- do a really good prep so it is quick and easy- you can ask the doc to make sure you are cleaned up ( down there) and dry before you wake up-and to help you get your clothes on asap- as soon as you begin to wake up and can sit. Take someone you trust, who is calm and understands you, and have them be the last person you see going in for the colonoscopy and the first person you see on awaking. You should be comfy w this person helping you get dressed. The more familiarity you bring when you’ve been sedated, the less chances for triggering. Try to get the doctors 1st appt in th morning so you don’t sit around waiting if things back up. Your friend could also have some positive music to focus on in the phone,and some simple games to play while you wait. Wear elastic pants- like sweatpants and a baggy shirt for after the procedure. I’m always starving after a colonoscopy so plan to eat a good lunch afterwards- maybe something special. Doing the colonoscopy is a great health prevention! Way to Go!?

 

[Fadeaway]

They didn't put me under in a way that required an anesthesiologist. The gave me an injection of something very powerful, although I don't know what but vallium doesn't knock me out nor do any sleep aids and I have tried them all.

I let them know right off the bat that I had PTSD and this would be such a huge trigger that my reaction to it could be very dangerous if fight or flight kicked in. I didn't give them the option to say no to knocking me out.

You need to assert yourself in this situation. If you do have a reaction your intestines could be punctured. I am sure the have already told you that is a risk if you move, so you need to stress that it is a real possibility.

Just want to reiterate they knocked me out because it was too big of a risk not too.

Now, I haven't explained it yet to anyone this time as I haven't heard back on the refferal, but I can assure you, I won't schedule it without this being clear.

 

[EveHarrington]

Can I ask how you experience IBS?

 

[barefoot]

I'm sorry I'm having medical issues also.

Yes, I’ve seen your other thread, Mach. I'm sorry you're going through such a difficult and worrying time health-wise. I am in awe of your attitude at the moment, though!

you might ask them for a one off prescription of Valium or something

I already have some valium and will take it beforehand (at home or on the way to the hospital etc). I know from experience though that the stress/adrenalin quickly eats through the valium so it does very little. I think this time I will take two and see if that's any more effective.

Every colonoscopy I have had my sedation had been light, and I couldn’t hear anything or remember

This is very reassuring to know. So, were you not really even aware that anything was happening during the procedure?

If you have sedation to relax you prior to the procedure, would that work?

I guess so, maybe. I'm not sure yet what time my appointment will be but my plan is to take a couple of Valium at home/on the way to the hospital to try to take the edge off my anxiety. If they are then able to give me something when I get to the hospital, that would be good, I think.

Take someone you trust

My partner will be coming with me. She knows doctors/medical stuff is hard for me. So, I know I can rely on her to be supportive and caring. I don't know that she is going to be able to really calm my anxiety though, if I end up in a state of very high anxiety/getting triggered. I think she worries that she doesn't know what to do when that happens. But, in truth, I don't think there is anything she can do at that point.

Try to get the doctors 1st appt in th morning so you don’t sit around waiting if things back up

They're going to contact me 48 hours before my admission date to let me know what time I need to arrive. So, I don't think they sort the list/order out until then. It's NHS, so I think they also potentially have emergency things coming in from the hospital, which may take priority and bump the out patient appointment times, so I don't now how accurate the list/timings is likely to be the it comes to it on the day.

Maybe I should call his secretary again and request that they put me as early as is possible on the day? I just find even calling the secretary so stressful and distressing....but I guess stress/distress beforehand trying to plan for the best possible experience is better than stress/distress on the day of getting triggered out of my mind?!

They didn't put me under in a way that required an anesthesiologist. The gave me an injection of something very powerful, although I don't know what but vallium doesn't knock me out

Same here with Valium. I've taken a 5mg tablet before a few medical things. For some minor things, it helped to take a slight edge off the anxiety. For bigger things though - or just times when I felt more anxious in the first place - it was useless. The adrenalin just ate through it, so I think I will need to take two (ie 10mg) this time and see if that helps tide me over until I get whatever they give me at the hospital.

You need to assert yourself in this situation. If you do have a reaction your intestines could be punctured. I am sure the have already told you that is a risk if you move, so you need to stress that it is a real possibility.

Just want to reiterate they knocked me out because it was too big of a risk not too.

Asserting myself with doctors is very hard. I tend to get triggered, totally panic, then freeze. For years I dissociated through medical appointments/examinations/procedures whereas that's not now something I really do in any situation now, so I'm thinking I probably will stay present...but I am still likely to get a voice hijacking. The idea of being present is not great - I would actually rather dissociate! So...I think asserting myself needs to come before the day...perhaps another call to his secretary?

The consultant has outlined risks of the procedure (perforated bowel etc) but didn't say anything about the risks being greater if I move. I hadn't really thought about me doing something, which could cause damage. Yikes!

Can I ask how you experience IBS?

A combination of: bloating, colicky pain (spasms), constipation, diarrhoea...also some reflux.
I've been keeping a food diary but haven't been able to identify any triggers.
GP suggested I could try the Low FODMAP diet to see if that helps and she has also referred me to a dietician to see if they can help. But I really want to get the colonoscopy results first, just to confirm what we're looking at.

GP doesn't think the colonoscopy will show up anything serious. She thinks conclusion will be IBS. Or possibly something like diverticulitis. The consultant didn't make any comment at all...he just said that because things had changed (ie after years of IBS being under control, the last few months I suddenly have lots of symptoms and the old medication didn't work anymore) a colonoscopy was the right next step.

 

[Rumors]

@barefoot I am really sorry! I have had SEVERAL. If you would like to message me privately I am happy to answer, help, whatever. I have suffered from colitis for years. I had a close family member with colon cancer so I require regular checks.
I can tell you that it isnt much different than the lower bowel procedure. Plus you never know bc you are nice and cozy and asleep. I was totally freaked out for my first one bc of the nature of some of my abuse but literally it was the best sleep I had gotten in weeks so when I woke up I felt so good from my nap it was all ok. Hang in there!

 

[The Albatross]

Reaffirm the reason that you agreed for the procedure. Decide if your reason has merit. If it does, use a strategy to diffuse the stressors rather than indulge in all the reasons for the freak out. For example, you've done a good job in identifying reasons that support your stress (listed 4 or so)… so make another list of identifying ways to be successful or that refresh the reason you made the decision in the first place.

 

[barefoot]

Thanks @Rumors - and I’m sorry to hear that you have to have these procedures so regularly :-(

I can tell you that it isnt much different than the lower bowel procedure. Plus you never know bc you are nice and cozy and asleep

This is reassuring to hear.

From what you guys are saying here, it sounds like I won’t really be aware of much/will pretty much be asleep/may not remember anything.
That sounds good to me! Though it’s not really the impression I got from my consultant or his secretary...that the sedative effect would be that strong. Maybe I need to contact the secretary again and ask about that...

@The Albatross - I guess the reason for having the procedure is to get clarity on what’s going on/what’s causing my pain and to ensure it’s nothing serious. So, yes, that has merit and I believe is worth doing (even though GP and me are both not expecting anything to show up)
I understand what you’re saying - to shift focus away from the things that are freaking me out and on to the positive reason for having it done.
And I can absolutely try to prep in advance to try to make it a more manageable/less stressful experience (eg asking people for info here, communicating with the consultant’s secretary in advance, taking a Valium on the way there, taking comforting things with me etc.

I think the part I’m struggling with most - though, I will admit, I am also struggling to stop ruminating about the things I listed that I’m freaking out about, especially numbers 1 and 2! - is that I don’t know a strategy that will help me not get triggered in the moment when I’m there, ready, in the gown, laying down and they’re about to get started/inject me. I don’t know what will help me not to get triggered in that moment, no matter how many plans I think I’ve made in advance. Any suggestions very gratefully received because I just feel so out of control of it.