colonoscopy pain

i had a colonoscopy on 6th october 2018 it was really painful and the consultant didnt care i was screaming for him to stop and all he said was that it was taking him too long with all my screaming, he eventually aborted the procedure and used a smaller camera which was a little better but not much. he didnt go right to the end of my colon and was very dismissive about my trauma.I felt very let down as nothing was explained to me at all, only that as far as he could see there was no cancer, so what were the lesions on my colon that were seen on a ct scan. I will be reporting this as soon as i can. and by the way NO the sedation didnt work. 

Parents
  • I had my first ever colonoscopy yesterday, and I'm left completely shocked, traumatised and humiliated.

    I went into hospital yesterday morning, already very anxious as I deal with general anxiety, but also the fact that I was sexually assaulted 4 months ago, the thought of someone I didn't know doing things around that particular area of my body, I was very much struggling. Which is something I immediately mentioned to my nurses as I was nearing a point of outright refusing the procedure. However when my doctor decided it best I have a chat with her and the nurse beforehand, I felt like she dismissed my concerns entirely by telling me "everyone gets a little embarrassed about having a colonoscopy." I wasn't embarrassed, I was absolutely terrified because some strange man was going to be prodding around my bum 4 months after being sexually assaulted, which I reiterated to her and was met with "if you are receiving counselling, to discuss my feelings after the procedure with my counselling service." I felt very much like my doctor didn't care about how this was making me feel or listening to me telling her how I felt. All she really told me was that the procedure wouldn't be painful, but just a little uncomfortable like having trapped wind (an absolute lie), and that I would be sedated. I asked about general anaesthetic as I felt I would cope better with that given my circumstances, but I was told that this wouldn't be a possibility because it was important for me to be awake during the procedure, but that I would be sedated and not really know what was happening or remember it (another lie), but they did tell me that if I told them to stop at any point, they would (yet another lie).

    After being sent back off to my wee cubical I ended up in a full blown panic attack; crying, hyperventilating, dry heaving, you name it; because I was so so stressed about what was going to happen. Eventually a nurse came in and found me like that, so I was given 4mg of diazepam, which thankfully calmed me right down to the point I felt stoned and didn't have a worry in the world.

    So after sitting in those god awful shorts and a hospital gown for 3 and a half hours, I was finally taken up to theatre. The team in there were, mostly, absolutely lovely and between them and the diazepam I was as relaxed as I could be. Unfortunately that lasted all of 2 minutes before my doctor tried and failed 4 times to insert the cannula so that I could be sedated intravenously. This was after I'd informed them that my veins were prone to collapsing in my arms with cannulas, and that my hand would be a better option. So after the 4th failed attempt the consultant took over and got the cannula in straight away. I was then told again that I would feel a bit of discomfort during the procedure, but no pain, and that I would be getting all the good drugs to make sure I was sedated and didn't feel any pain at all. And then all of a sudden I had a finger shoved in my rectum without any warning and I froze. Only to have the consultant then tell me "oh I'm just doing a little rectal exam first" like oh, that's nice and all, but why didn't you tell me before bloody doing it?! Especially when he knew that I had been sexually assaulted.

    I was then given fentanyl and midazolam, and within seconds of that going in, they started the colonoscopy.

    I thought I was going to die. I have never been in so much pain in my life, it was even worse than nearly having my appendix burst. The sedation did NOT work and they wouldn't give me anything else. I was sobbing, I could hardly breathe, I was almost breaking the poor trainee doctors fingers as she was trying to calm me down. The consultant then pressed down firmly on my stomach and I screamed. I felt like my stomach was about to burst whilst at the same time being stabbed by a million tiny knives from the inside, and when he stopped all I heard from the consultant was "why is she crying?" Why was I crying? Because it felt like I was being tortured and killed slowly. I begged the trainee doctor to tell them to stop, which she did, however the doctor and consultant insisted on continuing because I would have to come in again otherwise. So they continued and I continued sobbing. I can't express enough how amazing the nurse and trainee doctor were though, one held my hand and stroked my hair whilst the other kept telling me how great I was doing and that it would be over and done with soon.

    As they finally began to remove the scope I was in absolute unbearable pain to the point I couldn't keep myself still, I was screaming and crying and begging them to just stop for even a second, when the consultant yelled at me to lie still and keep quiet, which I just couldn't do I was in so much pain. 
    Once it was complete, I was just covered with a blanket, still laying on my side sobbing, and wheeled back onto the ward where I was left for an hour without anyone checking on me, before a nurse came in with some toast. She asked how I was feeling after the procedure and I just cried and told her that I felt entirely violated, demeaned, traumatised and dehumanised. I was offered very little support other than "I'm sorry to hear that" and told that once I finished my toast, I could get dressed and then would be allowed to leave.
     

    All in all, I think that it was easily one of the worst days of my entire life, to the point that if I ever was to need a colonoscopy again, for whatever reason, I think I'd outright refuse, even with general anaesthetic. I will never ever let someone do that to me again.

    I've been left with no support, no aftercare. I've been left to feel like I was completely overreacting to the pain, that I was being dramatic for no reason, and that my concerns regarding being sexually assaulted were nothing to be considered. I was completely blindsided by this experience and it's left me feeling just as traumatised, if not more, than being assaulted did, and it's brought back all of the feeling that I had after being assaulted too. I'm left feeling dirty, abused, dehumanised, violated and just in total shock.

    I'd love nothing more than to know who to get in contact with regarding this, because I really don't feel like this should be a normal experience, but being given little to no information afterwards, I have no clue. Do I contact the surgical team and let them know my experience? Do I contact my GP? Do I complain to the hospital?

    I'm at a loss, and I don't know where to go from here

Reply
  • I had my first ever colonoscopy yesterday, and I'm left completely shocked, traumatised and humiliated.

    I went into hospital yesterday morning, already very anxious as I deal with general anxiety, but also the fact that I was sexually assaulted 4 months ago, the thought of someone I didn't know doing things around that particular area of my body, I was very much struggling. Which is something I immediately mentioned to my nurses as I was nearing a point of outright refusing the procedure. However when my doctor decided it best I have a chat with her and the nurse beforehand, I felt like she dismissed my concerns entirely by telling me "everyone gets a little embarrassed about having a colonoscopy." I wasn't embarrassed, I was absolutely terrified because some strange man was going to be prodding around my bum 4 months after being sexually assaulted, which I reiterated to her and was met with "if you are receiving counselling, to discuss my feelings after the procedure with my counselling service." I felt very much like my doctor didn't care about how this was making me feel or listening to me telling her how I felt. All she really told me was that the procedure wouldn't be painful, but just a little uncomfortable like having trapped wind (an absolute lie), and that I would be sedated. I asked about general anaesthetic as I felt I would cope better with that given my circumstances, but I was told that this wouldn't be a possibility because it was important for me to be awake during the procedure, but that I would be sedated and not really know what was happening or remember it (another lie), but they did tell me that if I told them to stop at any point, they would (yet another lie).

    After being sent back off to my wee cubical I ended up in a full blown panic attack; crying, hyperventilating, dry heaving, you name it; because I was so so stressed about what was going to happen. Eventually a nurse came in and found me like that, so I was given 4mg of diazepam, which thankfully calmed me right down to the point I felt stoned and didn't have a worry in the world.

    So after sitting in those god awful shorts and a hospital gown for 3 and a half hours, I was finally taken up to theatre. The team in there were, mostly, absolutely lovely and between them and the diazepam I was as relaxed as I could be. Unfortunately that lasted all of 2 minutes before my doctor tried and failed 4 times to insert the cannula so that I could be sedated intravenously. This was after I'd informed them that my veins were prone to collapsing in my arms with cannulas, and that my hand would be a better option. So after the 4th failed attempt the consultant took over and got the cannula in straight away. I was then told again that I would feel a bit of discomfort during the procedure, but no pain, and that I would be getting all the good drugs to make sure I was sedated and didn't feel any pain at all. And then all of a sudden I had a finger shoved in my rectum without any warning and I froze. Only to have the consultant then tell me "oh I'm just doing a little rectal exam first" like oh, that's nice and all, but why didn't you tell me before bloody doing it?! Especially when he knew that I had been sexually assaulted.

    I was then given fentanyl and midazolam, and within seconds of that going in, they started the colonoscopy.

    I thought I was going to die. I have never been in so much pain in my life, it was even worse than nearly having my appendix burst. The sedation did NOT work and they wouldn't give me anything else. I was sobbing, I could hardly breathe, I was almost breaking the poor trainee doctors fingers as she was trying to calm me down. The consultant then pressed down firmly on my stomach and I screamed. I felt like my stomach was about to burst whilst at the same time being stabbed by a million tiny knives from the inside, and when he stopped all I heard from the consultant was "why is she crying?" Why was I crying? Because it felt like I was being tortured and killed slowly. I begged the trainee doctor to tell them to stop, which she did, however the doctor and consultant insisted on continuing because I would have to come in again otherwise. So they continued and I continued sobbing. I can't express enough how amazing the nurse and trainee doctor were though, one held my hand and stroked my hair whilst the other kept telling me how great I was doing and that it would be over and done with soon.

    As they finally began to remove the scope I was in absolute unbearable pain to the point I couldn't keep myself still, I was screaming and crying and begging them to just stop for even a second, when the consultant yelled at me to lie still and keep quiet, which I just couldn't do I was in so much pain. 
    Once it was complete, I was just covered with a blanket, still laying on my side sobbing, and wheeled back onto the ward where I was left for an hour without anyone checking on me, before a nurse came in with some toast. She asked how I was feeling after the procedure and I just cried and told her that I felt entirely violated, demeaned, traumatised and dehumanised. I was offered very little support other than "I'm sorry to hear that" and told that once I finished my toast, I could get dressed and then would be allowed to leave.
     

    All in all, I think that it was easily one of the worst days of my entire life, to the point that if I ever was to need a colonoscopy again, for whatever reason, I think I'd outright refuse, even with general anaesthetic. I will never ever let someone do that to me again.

    I've been left with no support, no aftercare. I've been left to feel like I was completely overreacting to the pain, that I was being dramatic for no reason, and that my concerns regarding being sexually assaulted were nothing to be considered. I was completely blindsided by this experience and it's left me feeling just as traumatised, if not more, than being assaulted did, and it's brought back all of the feeling that I had after being assaulted too. I'm left feeling dirty, abused, dehumanised, violated and just in total shock.

    I'd love nothing more than to know who to get in contact with regarding this, because I really don't feel like this should be a normal experience, but being given little to no information afterwards, I have no clue. Do I contact the surgical team and let them know my experience? Do I contact my GP? Do I complain to the hospital?

    I'm at a loss, and I don't know where to go from here

Children
  • Welcome to the Cancer Chat community Lillieipad although I'm very sorry to read about your colonoscopy experience. 

    I know you want to find out how to make a complaint so I just wanted to make you aware of PALS. The Patient Advice and Liaison Service offers confidential advice, support and information on health-related matters and will be able to offer you information about the NHS complaints procedure, including how to get independent help if you want to make a complaint.

    You could also share your experience with Care Opinion. This non-profit organisation have been sharing people’s experiences of health and care services online since 2005 and over 500 organisations are using this service to listen to what patients have to say. 

    I'm not sure if you have reported the sexual assault that happened 4 months ago but if you haven't and are seeking emotional support then you can refer yourself to a sexual assault referral centre (SARC). If you feel this is something you may benefit from do be sure to use this search tool on the NHS website to find the nearest centre to your location. I hope this very informative self help guide for survivors of sexual assault that The Havens have produced will prove useful at this time as well.

    I hope all this information helps but if you would like to speak with one of our nurses about this, you're very welcome to give them a call on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

    Kind regards,

    Steph, Cancer Chat Moderator