colonoscopy anxiety

[depressedae]

I have my first routine colonoscopy Thursday and am struggling with bad anxiety.

relevent- my grandmother died of colon cancer in the 1990s so I’m higher risk. I am very scared of being diagnosed with colon cancer too.

also relevent- I am an assault survivor. The procedure makes me feel invaded and dirty.

I know about the prep being the worst and all the prep tips. That is part of the problem, the long process of the prep makes the anxiety worse. I have anxiety diagnosis separate from this. I am such a wreck. I have a prescription for anxiety medicine but it is not enough right now. A counseling appointment isn’t an option this week and anyway I’m too upset to even talk to a counselor. 

I tried to talk to the nurse who scheduled my appointment about this. I thought maybe they have a routine for cases like this. She was really mean and said if my anxiety is so bad that maybe they can’t treat me there. So I know now that they won’t be helpful or good to me in any way. 

[yourmother]

I’m so sorry that the nurse wasn’t kind.

Do you have someone that you trust who can go with you and be your advocate? Explain to the staff what’s going on?

I’ve had colonoscopies done before and also take my dad for his routine visits. The staff at these places are really kind and understanding. Perhaps if your advocate can be there to prep them on your situation.

Sending so many hugs.

[depressedae]

Dec 20, 2022 8:20:54 GMT -5 yourmother said:

I’m so sorry that the nurse wasn’t kind.

Do you have someone that you trust who can go with you and be your advocate? Explain to the staff what’s going on?

I’ve had colonoscopies done before and also take my dad for his routine visits. The staff at these places are really kind and understanding. Perhaps if your advocate can be there to prep them on your situation.

Sending so many hugs.

They don’t let anyone with you because of Covid

[bex1973]

I'm sorry you are struggling. My dad had colon cancer so I started doing them at 40 and it can be hard.

Maybe you already know this but just in case: You can ask for a 2 dose prep - I think it's called Supra or something close to that. It's what I have done and it's a shorter time frame. You eat light in the day or 2 leading up to it, clear liquids the day before and then you drink 16 ounces about 6pm the night before and then another 16 ounces the morning of - I had to have my 2nd dose finished by 6am because I had a morning appointment. That at least would shorten the prep time for you maybe?

I'm hopeful for you that the nurse you spoke with was just a one off and that everyone else is kind. The folks at the place I go to are really nice.

[lilac05]

I’m sorry you’re going through that. Your feelings are valid, especially given your history.

Is the office a big one, or is that nurse the one who will be treating you? I’m sorry she was so insensitive and unkind.

When I’ve had tests that feel really scary to me because I’m anxious about the results, I try to remind myself that the testing doesn’t increase my chances of having whatever I’m being tested for, it just increases my chances of being able to treat it and move on with my life. Early identification and intervention makes a huge difference!

[arielroux]

I have medical/health anxiety and had my first colonoscopy last year. I will say, I know everyone’s experience is different, but I didn’t think the prep was all that bad. I expected it to be way, way worse. The drink also didn’t taste terrible either. And I was able to get a decent amount of sleep the night before, despite the prep stuff. The staff at the health center was so nice, and made me really comfortable. Once I woke up from the procedure, it legitimately felt like I had taken a great nap. I was sleepy that day, but the next day I was totally fine.

I do take anxiety meds, and my doctor said to take a little extra that morning, if I felt I would need it.

I’m sorry the nurse was somewhat rude to you about this…it’s normal to have anxiety over something you’ve never experienced before.

[basilosaurus]

My mom died of CRC at age 37 in the late 80s, so I've been testing since 27. I get the anxiety.

I'm quite shocked there's no visitor as you likely need someone to drive. I've had a husband, a friend, a coworker I barely knew.

There are easier and harder preps. Easiest personally was miralax, ducolax, and pedialyte (they say gatorade but I prefer pedialyte for being less sweet) similar to this my.clevelandclinic.org/health/articles/21217-miralax-gatorade-bowel-preparation-instructions. My GI doc friend recommended it, and I was pissed it took so long to get that advice because swigging a gallon of c-prep in quick fashion is no fun. So maybe ask for that. I know you said you know all the tips, but it's nice to have confirmation, too.

I don't want to minimize your anxiety, but you truly do forget how awful it is afterward. I basically just set up movies on my laptop in front of the toilet and hang out with my wet wipes.

I'm sure you can get some mild benzos in this situation. I also have GAD,, on SNRIs on and off, but I've been given an extra boost, if you will, in a known circumstance like this.

You can always ask to speak to someone else which might be a clinic mgr or patient advocate, depending on the practice.

[sarahswim]

I’m so sorry you had such an unpleasant nurse in the phone. I just had my first colonoscopy two weeks ago and also had anxiety about the prep, the procedure itself, and even the recovery period (where I was awake and talking but have no recollection of any interactions with the doctors/nurses/my husband).
I will say that the staff at my facility were kind, understanding, and helpful. Also my husband was able to be with me-is it possible that their Covid rules have been relaxed but just not updated on their paperwork?
If you want to talk or just ramble privately, feel free to DM me.

[circa1978]

I have major medical anxiety and finding the right providers made a huge difference in my ability to get regular care. I have OCD and having that on my chart with accomodations (for example, I ask for no exact numbers or numbers read aloud b/c I will Google and fixate endlessly, no printouts at the end of the visit and for my husband to have full access to speak to the doctor so that a person without anxiety can also hear results and talk about the treatment plan, especially since I often need to have a xanex on board) makes it easier. My current group of doctors understand that OCD is just as much a part of my health as anything else (two of my providers have family members with it). Advocating for myself sometimes feels silly but I now tell all my providers immediately; I just say I need you to know I have OCD fixated on health and wellbeing. I am in treatment but it may impact our visit today and I wanted to share with you some things that I have done (taking medicine or bringing my H) as well as what past successful accomodations have been. It sounds like that nurse was a jerk but not everyone will be and it's ok to set yourself up for success!

[spinnaker5]

Sorry you are having a tough time - there is a lot of hype out there about the prep process being miserable, so no wonder. Like others have mentioned, I did the Miralax + Gatorade Zero version which took away the issue of the bad-tasting stuff the office gives you. Also great advice suggested upthread about double-checking their companion policy- it seems like they should have options for someone with an anxiety diagnosis - and/or patient advocate situation. Hope everything goes, uh, smoothly.

[basilosaurus]

Dec 20, 2022 8:44:31 GMT -5 sarahswim said:

 (where I was awake and talking but have no recollection of any interactions with the doctors/nurses/my husband).

I remember at my first I said to my H as he helped me to get dressed to pull my finger, and I had such a long fart. Clean smelling due to fasting/prep at least. I thought I was so original and hilarious. I did it again a few years later with my friend, once again thinking I was original and oh so funny. I repeated my "joke" many times before discharge, and I have no doubt I'll do again every time. I have no idea what happened in memory lapses, and I hope that they keep their mouths shut! For real, I'd never disclose what someone said while under. I take it very seriously, and so do my coworkers.

At the very least it makes for some funny stories. And, well, we have to do it. I'm a gallows humor type of person. If I get a good fart joke out of being hungry, sitting on the toilet, and all the unpleasant, well, I'll take it. 

[nicolewi]

That nurse was a total jerk and I'd consider complaining. A TON of people have anxiety about this procedure and she should be able to handle it more appropriately in the role she's in!

I don't have a ton of advice. I'm sorry you are going through this. Maybe just take it step-by=step and don't look too far ahead of yourself, and it will be over before you know it.

[chilerellanos]

I’m sorry you’re struggling with anxiety. I’ve been getting colonoscopies since I was 30.

The suprep is by far the easiest I’ve done.

You will likely need someone there with you, because you won’t be able to drive yourself home. They just might not be able to go back to the pre-op with you (although they let my guest go back to pre-op with me last February.)

Once they get your IV started and your consents are signed, they usually can give you something through your IV to start helping you relax.

[ohgillian]

I’m so sorry. Do you think whoever prescribes for you would be willing to call in a fast acting anxiety med like clonapin or Xanax?

I have a strong family history of colon cancer (3 of my 4 grandparents) so I started at 39 getting scoped. I also had Lynch syndrome testing - it was negative, but I still get scoped every 5 years.

[Pilsy]

I'm so sorry, both because I wish I could make it an easier experience for you and also because that nurse had a chance and was a jerk.

I don't even have your history, and when I was having some extensive digestive issues, I went to the ER with abdominal pain, and they wanted to do a rectal exam. I kind of lost it, because I was so incredibly uncomfortable with the idea of it. I told the doctor it felt demeaning, and she repeated that back to me with a question mark on the end as if to imply that was unfathomable. I was so confused, I began wondering if my vocabulary was so bad, I was using the wrong word. All this is to say, I can certainly see why you'd be having anxiety. I'm really disappointed that nurse wasn't kinder and more helpful, especially as you made yourself vulnerable and shared your background and fears. I'd like to think she doesn't represent everyone at the facility, so perhaps you could speak with someone else there about your options.

Also, does your work offer an EAP that might be able to get you an immediate appointment with someone, perhaps via telehealth?

[thebreakfastclub]

I would do the Cologuard home test instead this year. At least until you have a plan in place for a colonoscopy if needed. My husband gets them but it was his mother who died of colon cancer in her early 40s. I might get a 2nd opinion about whether yearly cologuard tests may be OK in your case.

[underwaterrhymes]

I’m so sorry. I can imagine this must be tremendously anxiety-producing and I wish your healthcare providers were better prepared to help you navigate this as you are not alone.

Is there anything that dictates that you must have this procedure now? Can you explore other providers? I have a genetic mutation that predisposes me to colon cancer, so I had my first in 2020. I was not pleased with how things went (the procedure was fine, but they overdosed me with anesthesia and although the resultant texts to my husband were hilarious, I’m seeking a different provider for my next one in 2023.) All this to say, my GP recommended her provider, who uses essential oils to calm patients down if they want it and has an excellent bedside manner. I haven’t seen her yet as she has quite the waitlist, but if you’re in the Chicago area, I can share her name with you if you’d like. I also think you should be able to take something like a Xanax to calm you down prior to the event. ❤️

I hope that you are able to find a provider who understands your anxiety and works with you.

[wesleycrusher]

I know you said you're not up to talking to a counselor, but have you ever called a peer support warmline? I know of the one in my area, but there are a lot out there if you google- local and national.

[MixedBerryJam]

Dec 20, 2022 10:16:11 GMT -5 wesleycrusher said:

I know you said you're not up to talking to a counselor, but have you ever called a peer support warmline? I know of the one in my area, but there are a lot out there if you google- local and national.

I’m sorry your anxiety is getting the upper hand in this situation. I have a family history so started getting mine just a little bit early, and have actually never had a clean colonoscopy result, so I’m in there every 3-5 years. I’d you haven’t read it already, read Dave Barry’s column about his (he has a family history too and May actually have lost a brother to it. But his column about it is really affirming and I truly found it helpful. LINK: www.miamiherald.com/living/liv-columns-blogs/dave-barry/article1928847.html

I’m no Dave Barry but I wrote about one of my early ones, too, LINK blog.twoboysfourcats.com/2010/10/i-think-ill-wait-til-its-over-to-put.html?m=1 includes photos!

I have always had mine under twilight sedation but the last two I was completely out, and I’m going to request that every time from now on. If that’s an option you might think about asking for that. Good luck!

[erbear]

I don’t have any experience with this yet (though I 100% get the anxiety of not wanting to schedule things for fear of bad news) but I second the idea of getting someone you love and trust to come with you so you don’t have to be alone. You can do this ❤️

Also I’d report that nurse to the doctor who runs the clinic. That’s unprofessional and unkind.

[polarbearfans]

I have had to have colonoscopies for ulcerative colitis. I am way over due for another, but I don’t have anyone to go with me.

I always choose to be completely knocked out. It goes better for me than when I am awake for it.

[gretchenindisguise]

I would find the number for the patient advocate at the hospital you're doing your colonoscopy at and let them know what you let us know. They should be able to intervene and help you through this. Most hospitals these days attempt to practice from a trauma informed care lens, but sometimes they fail. This is an instance when they've failed and need to step up to the plate. Use the term trauma informed care to help get some traction.

[mcsangel2]

Well, no one has suggested this yet, but I will. Unless there is an urgent need to have it done this week, cancel it and reschedule in a few weeks. Give yourself time to talk to a therapist about it, maybe even 2 visits, and to get a stronger prescription drug to help (but check with the colonoscopy place first to see if there is a restriction on what drugs you can have in your system the day of).

There is no reason you can't reschedule to when you are better prepared (again, assuming there is no urgent situation). You can also talk to the doctor who referred you to see if he has another practices to recommend (since the nurse was shitty to you). You can also google colonoscopy practices near you and look at reviews.

It's your body and your mental health. You are not OBLIGED to let doctors dictate what and when and where you have done. And sadly, no one is going to be as concerned for your well being as you are. You are allowed to put your foot down on this and wait until you have more tools to cope.

Signed, someone who developed a chronic pain condition this year that is not well understood by doctors who just want you to have all the procedures done even when they haven't been required for diagnosis by their medical associations in ten years. And also someone that has to explain to very skeptical doctors that you have an extremely unusual reaction to a very common drug used in most of those procedures.

It's your body and your life.

[dexteroni]

I'm sorry this is so rough and that you aren't getting the help you need. If this is a routine screening and you aren't having any symptoms, I would cancel this appointment, and reschedule once you feel you're better able to cope with it. There's no reason to force yourself into something this upsetting when it isn't a time sensitive situation. See your counselor and then reschedule when you feel you're in a better place.

Also, aren't you going to be under sedation for the procedure? I had my first this year, and I wasn't aware of the actual procedure at all. If this practice doesn't allow sedation (because then yes you do need someone with you to drive you home), then reschedule with a practice that does allow it. Hugs to you.

[luckystar2]

Dec 20, 2022 11:03:28 GMT -5 mcsangel2 said:

Well, no one has suggested this yet, but I will. Unless there is an urgent need to have it done this week, cancel it and reschedule in a few weeks. Give yourself time to talk to a therapist about it, maybe even 2 visits, and to get a stronger prescription drug to help (but check with the colonoscopy place first to see if there is a restriction on what drugs you can have in your system the day of).

There is no reason you can't reschedule to when you are better prepared (again, assuming there is no urgent situation). You can also talk to the doctor who referred you to see if he has another practices to recommend (since the nurse was shitty to you). You can also google colonoscopy practices near you and look at reviews.

It's your body and your mental health. You are not OBLIGED to let doctors dictate what and when and where you have done. And sadly, no one is going to be as concerned for your well being as you are. You are allowed to put your foot down on this and wait until you have more tools to cope.

Totally agree. Unless there is an urgent concern I’d look into rescheduling. This isn’t just normal stress about a procedure. I would give yourself the time so you can work with a therapist. Without it looming over you, you may be in a better place to discuss with a therapist.

Also I would potentially look into other offices. The nurse could have been a fluke but that wouldn’t make me happy. I wonder if you could ask your pcp for another potential suggestion for a more anxiety sensitive practice. Or perhaps writing a message in my chart to the dr might get better attention. It’s possible the nurse didn’t fully pay attention or understand and written documentation might be more helpful.

I had some major dentist anxiety due in part to a crappy dentist when I was a kid. I went to an office that specifically catered to those with fear. It made a world of difference to have staff and drs who understood and didn’t make me feel guilty, silly or bad about my fear. I’m not sure they’d have something so specific in this field but there may be offices that are better able to handle this. You have real reasons to have this anxiety and need a place you can feel comfortable with.

[depressedae]

Dec 20, 2022 10:16:11 GMT -5 wesleycrusher said:

I know you said you're not up to talking to a counselor, but have you ever called a peer support warmline? I know of the one in my area, but there are a lot out there if you google- local and national.

I’ve never heard of this. Thank you- will check.

For those mentioning Xanax. I have plenty. I was just hoping I could ask the nurse if I can have an IV with something better while I wait. But then I couldn’t ask her because I knew she would just tell me no.

I have heard of people waking up. I really could not deal with that at all in any way.

[letsgetweird]

I agree that you should cancel the procedure and reschedule.

Not sure if this helps at all but I had a colonscopy/endoscopy done several years ago. I heard the prep was awful but I really didn't think it was that bad. Mixing it with a drink helped get it down.

Does your doctor have a patient portal? I would send the doctor a message and let them know your concerns, if you feel comfortable. They may have some suggestions.

[orval]

I also did the Cologuard instead of a colonoscopy. My doctor said she would rather have me do that test than nothing at all(my grandmother also had colon cancer). If something came up on the test, I would have had to do a colonoscopy. I have never had any kind of anethesia so that freaks me out.

[stemmie]

Dec 20, 2022 8:24:41 GMT -5 depressedae said:

Dec 20, 2022 8:20:54 GMT -5 yourmother said:

They don’t let anyone with you because of Covid

I might shop around for a different GI doctor/center. 


My DH has been through 2 recent colonoscopies in the last 5 months. He had a complex polyp that needed addressing in a hospital setting because of the risk of the procedure. At the free standing center they didn't allow anyone to stay but when he was at the teaching hospital downtown, I was able to hang with him until they took him back.

There are different preps. DH did the Suprep the first time is allegedly easier but found the old-school Miralax in Gatorade/Ducolax/Simethicone prescribed by the med school professor less unpleasant. My BFF (who is high risk and has IC) swears by Clinpiq. 

[cap]

I am really sorry that you are so anxious. I have had several c-scopes because I have ulcerative colitis. If it would help, please feel free to ask me anything, either in the thread or DM me. I really do mean anything because I'm not at all shy about talking about it. If actually talking to someone would help, I'd also be willing to do that.