I got so worried that I cancelled my procedure

Posted , 10 users are following.

After waiting several weeks after my GP referral, I finally got an appointment to see a consultant who arranged a colonscopy scheduled some weeks later. I wasn't given any information at the initial appointment which really surprised me. I did my own research in an effort to deal with my anxiety and my surgery gave me a leaflet which made things worse for me as did much of what I read on the internet. My GP urged me to go ahead even though he knew that I had become very stressed, so before the appointment I contacted the hospital who were very supportive and gave me another leaflet. I tried so hard to overcome my concerns but the information that I was given seemed only to focus on the medical side and not the personal side which for such an invasive procedure was very important to me. The idea of appearing virtually naked in front of strangers, being partially sedated and not in control plus having such a potentailly humiliating experience really got to me even though the hospital staff tried hard to calm me.

I appreciate that the patient information has to include possible worst case complications but when possible risks listed included heart attack, stroke (with any serious condition), bleeding, allergic reaction, breathing difficulties or infection I just couldn't face going through with it.

My point is that medical staff need to better empathise with patients, guide them through the protocol of the very personal aspects of the procedure as well as the medical issues. As has been said before, the doctors/nurses may carry out the colonoscopy regularly but to individual patients it can be one of the most undignified and worrying things to face and rightly or wrongly I had to cancel.

0 likes, 9 replies

9 Replies

  • Posted

    I had to have a colonoscopy a couple of weeks ago, and like yourself I was very anxious about what to expect but I can honestly say it was really a positive experience.  The prep before is not overly nice but do-able, the actual procedure I found was only slightly uncomfertable and was over really quickly (mine was about 15/20  mins)  You do not have to be naked in front of anyone, you will have a hospital gown and it is pulled to one side as you lay on the bed to start the procedure, and as you say they have to tell you the worse case scenario but honestly if you need to have one then please do not opt out, it is the fear of the unknown that is often worse than the actual event  
  • Posted

    GGhub,

    You are right about the medical profession and the need to acknowledge that none of this is routine or normal for some patients and it is important to get the right type of reassurance to your particular concerns. It is quite difficult sometimes to be honest about what is really bothering you, especially issues of modesty and dignity, because it sometimes feels humiliating to even have to admit your embarrassment to something which may be unavoidable. Sometimes a compremise can be found, but you don't even want to show your vulnerability.

    If you were to have your colonoscopy in the UK - I can say from my experience that in the London NHS hospital that I attended - they had full gown and dignity shorts. These shorts were very effective - they just have a small opening strategically placed so your bottom is covered throughout.

    I have also read of people opting to wear boxer shorts back to front in case dignity shorts are not provided. Also google 'patient modesty'. It is a USA website informing patients how to protect their modesty in a medical setting and gives good tips and insight about all related issues - such as sedation etc. It has good tips on modesty for colonoscopy's there.

    I would say that one thing to always keep in mind is that your concerns are valid and you have a right to choose how your own body is treated. These real concerns should not prevent you from the medical attention you need though. Once you realise plenty of people share your concerns, you can confidently negotiate how your medical needs can be met.

  • Posted

    Hello GG.

    I'm in the US. I know exactly where you are coming from.

    Even though I know many people personally that have taken the test, I too have NO desire appearing completely naked in front of strangers. My wife is the only female that will ever be allowed that privilege.

    As far as colonoscopy goes, it's a money maker for the healthcare industry.

    They see us as cattle not human beings. Get them in knock them out do the test and then get them out as fast as they can and move on to the next victim.

    From what I've seen and heard from others that have done the test, there is very little if any empathy shown on the part of any medical personnel.

    My PCP wanted me to get tested.

    So after reading up on it, then also seeing in the news how nurses are taking pics of patients privates while they're unconscious then getting a slap on the hand when caught, I decided to lay down some ground rules with my PCP.

    I went back to the PCP & said, I have no problem with doing the prep the night before because I don't want to have to do it twice but, the only way I'll do the actual procedure is if I could get an all-male team to do the test or, I'm allowed to wear what are called colonoscopy shorts to protect my dignity, and I'm not be sedated at all.

    I've heard and read too many nightmare stories about the side effects of the drugs they use.

    I even went as far as to purchase a pair of colonoscopy shorts from a company here in the states.

    So I started calling around to places that did the testing. Not one would assure me an all-male team no matter how far out I scheduled the test nor would they allow me the use of the shorts specifically made to protect the patients privacy for this test nor would they do it non-sedated.

    One female nurse went so far as to tell me "Don't worry, you're going to lose all your clothes, but we'll take good care of you".

    No thank you.

    So needless to say, I have yet to do the test.

    I saw an article in JAMA recently.

    Clinical Practice Guidelines for Colorectal Cancer Screening

    New Recommendations and New Challenges for 2016

    In the article it lists 7 different screening strategies or methods of testing the patient in coordination with their doctor could choose from.

    The idea behind the new recommendations is getting people to do some type of testing as something is better than no testing at all. They figured patients would find what they were comfortable with and get tested that way on a regular basis.

    With this new ammunition in hand, I'm going to go back to PCP & just tell them you want to test me use the In-home fecal immunochemical testing (FIT) for occult blood kit as it's one of the 7 methods.

    It's better than no testing at all because that's what's going to happen since there is no cooperation coming from the medical community as far as getting the colonoscopy.

    Maybe go back to your doctor & discuss alternatives to the colonosocopy test that would provide some kind of protection.

    Regards,

    Raffie

  • Posted

    I was not the least bit embarrassed. They supplied a gown which you put on in private, then of course, your bottom was uncovered for the procedure. The team was friendly and reassuring. I suppose it depends where you are. I also found that when I was in hospital, any modesty was soon forgotten as they were simply doing their job and I was more concerned with getting better. Whatever you decide to do, I hope all goes well. I think a CT scan shows any problems and it is less invasive? 
  • Posted

    I sympathise with you entirely. This risk assessment thing has got so out of control that people get needlessly terrified. If you got told the same thing about everything you do in life then you would never leave your front door. And what are you supposed to do with the information anyway? How can you even begin to assess minuscule risks? I'm sorry you have been a victim of it. However, two things, as most people tell you on this site, the reality is rarely that bad at all. You are not naked for instance and the sedation generally just means you are a calmer and maybe remember less. If you do think of having it again, the most important question is why you are having it: if it is because you suspect a condition or wish to check to avoid a condition developing, it might be worth what happens if that condition develops unchecked and what you will then have to go through. You may find that puts this short test into perspective for you. Good luck anyway and hopefully there was nothing wrong in the first place.

    • Posted

      Sorry typo: it might be worth checking out what happens if that condition develops etc. Sorry! Comes of typing in my smartphone.
  • Posted

    Hello GG. I had a colonoscopy and endoscopy procedures done together 2 weeks ago. I'm a modest woman, early 40s. The reason for early testing was because my father had some precancerous polyps removed from his

    Colonoscopy this year. I also am having some swallowing issues, thus the two tests were performed together. I was in a hospital gown, the nurses were very nice. I also didn't have a lot of information before the test, just knew that my parents each had it and everyone is supposed to at age 50 and over. I would have preferred a female but sometimes the medical needs outweigh the preferences. My husband is even more insistent about me getting female doctors than me, but he also knows that sometimes we don't have a choice. I had to go to the ER 2 months ago, in severe, excruciating pain. Before we knew it, the attending, male doctor with another male resident and female nurse came in and he started examining me. I saw my husband's face but he did not say anything. He couldn't because my life mattered more at that point than his preference. Back to the procedure. Although I wasnt given a lot of info prior to the procedure, the nurses prepared me as to what would happen during the procedure and after. They asked my permission if I would allow student doctors to watch, I said no. I was also asked if they could use my images,of inside colon only, for teaching, I allowed that. I fell asleep like they said I would and woke up very comfortably. Although anasthesia and being hungry for a day and a half made me feel weak, that was really it. They gave me some soda, while I rested, they checked my vitals a few times. They brought my husband in when the doctor came to speak to us because I didn't want to not remember what he said because I was groggy. I'm still having some diarrhea which I have informed the office about. But I'm glad I got it done because the polyps they removed from my colon are also precancerous. The other important information is that you need to have someone with you who will stay throughout the procedure and drive back home. Don't Eat Anything greasy or heavy for a day or so. Other than that, it was fine. I hope this relieves some of your fears.

  • Posted

    Really sorry to hear of your experience, but it was such a different experience for me in the uk. I'd had a positive from the fecal blood test that you're given regualrly and a colonoscopy is the next check. Excellent information before the procedure, kind, sensitive reassuring nurses all round. Privacy and respect when putting on the gown. Little discomfort during the procedure and a couple of small polyps removed with no after effects. Good follow up after the procedure.

    • Posted

      Please don't worry about it.   I had one a year ago, some polyps removed and one left that was a but "iffy" !  Been called back for another this year to check the "iffy" one so I know what to expect.

      On my own, gas and air given, lasts 20-40 minutes, given paper shorts so privacy respected.  It is an important and valuble procedure and I am glad I had it done last year.  OK not looking forward to another next week but for my future health I know it is very important.

      Best of luck. j x

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