Terrified about colonoscopy..honest experiences please?

Posted , 7 users are following.

Hiya,

I have been having a number of problems for a while now and I am looking for some advice.

It has been suggested by a colorectal consultant that I have a colonoscopy just to double check that everything is okay. I saw him a couple of months a go as I had been experiencing intense aching/pressure in my rectal area which would last for hours at a time which was unrelated to needing the toilet(my bowel movements were normal, no blood, dirrahoea, constipation etc.) He diagnosed me with a condition called proctalgia fugix with possible levator ani syndrome and prescribed me some medication to help me with the pain. I had also been experiencing bladder symptoms for a long time (around a year) where I had been getting frequency on and off and a deep, throbbing ache in the mid-lower right region of my pelvis whenever I drank anything (it would feel like I could feel my bladder filling up). I did mention this to him and he said if it carries on I might need a colonoscopy. Although, for me the pain doesn't feel related to my digestive system it feels like it's too low down and related to my bladder especially with the urinary symptoms I had been having?

I started taking the notriptyline and after a couple of weeks I started passing excessive wind and feeling like I needed to go to the toilet quite a lot (worst was about 5 times a day) but when I would go I would pass very little stool and still feel like I wasn't empty. I would also get mild abdominal pain alternating on my left and right side. My appetite was fine and I didn't feel feverish or anything. This would be a different type of pain and higher up than the pelvic pain. This happened on 8 separate occasions over a month. The intense aching (proctalgia fugix/levator ani pain) continued during this time.

I saw him again and mentioned that I had been having some new symptoms. He suggested I try some new medication for the aching which so far has been working really well. He ordered a stool sample test to check for inflammation which came back normal, and when he examined me at his surgery everything looked normal. However, even though the test has come back normal he still wants me to have the colonoscopy. I still have the pelvic pain/urinary symptoms and I have been referred to a urologist for this.

My bowel/rectal symptoms have been a lot better the past few weeks (I have had one day where the bad wind/trips to the toilet returned) and I really don't want to have this colonoscopy as it scares me so much. I have heard so many horror stories where people have experienced extreme pain and had long term side effects like diarrhoea, tummy pain that lasted for months afterwards which hadn't happened before the colonoscopy. I am always terrified about the bowl prep (I have been sent Moviprep). For me, it all just seems too much. I am under 30 and as much as I appreciate that the doctor wants to rule out anything sinister I am terrified and I don't want to put myself through this unnecessarily if it's going to cause me more problems down the line.

Does anyone have any advice on how to approach this or what their experiences of colonoscopy was like? I am close to cancelling it because I am so anxious. Everything about the procedure terrifies me.

Thank you for reading,

Charlotte

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9 Replies

  • Posted

    hi i have had 2 colonoscopies and each time i was the same especially as i have health anxiety.

    however each time its over i think why did i worry so much. As soon as you are sedated you dont know anything and as you come round you slowly forget what happened.

    moviprep isnt the nicest but i just hold my nose and drink it.Not eating much before is hard but i was so scared if i did the prep wrong then id have to go through it again that i was strict.

    The doctors know your scared, i was shaking and crying and they really compfort you.

    you will have lots of wind after for a day but thats normal

    Just rest afterwards.

    You lie on the bed on your side and your still worrying.They put the sedation in your arm and its so weird you know youre awake but you go blank then what seems like 5mins later your being wheeled out when its actually been 45mins or so.

    In one of them i think the sedation wore off as i felt a bit of pain in my upper bowel but as soon as he knew, i was soon put out again.

    You have 3 people with you and they are all watching you very closely so if anything happens they are quick to put it right.

    You have to weigh up the outcome , is it better to not have it done and risk having a serious condition that will in the future mean more invasive surgery or loosing ur life or to have it done to rule out anything sinister or to catch it early.

    Someone i knew was 27 and kept going to drs and kept getting told he just had ibs. By the time he was able to have a colonoscopy it was too late, he had bowel cancer and told he had a year to live but he sadly died 2 weeks later.

    I have to have them every 5 yrs and i get so scared but i feel lucky that im on the system to as im 34 and when you are young its so hard for drs to refer you so id say to you stay calm its not as bad as the fear , they do these all day every day. People who normally have things go wrong are old and frail or have existing health problems.

    You will be ok, if i can do it you can 😃

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  • Posted

    Don't listen to the horror stories!...every medical procedure has one. I have had about 8 colonoscopies and have had NO problems...no pain or discomfort during or after the colonoscopy. Have the concsious sedation . As for the prep you are right to be wary of this ..it's not nice ..I had moviprep too. Try putting it in the fridge and drinking it through a straw . I bought some a anti sickness pills over the counter that helped with the sickly feeling during the moviprep. I could only manage 3 of the 4 sachets I was given. The important thing to bear in mind is that the Doctor can nip out any polyp during the colonoscopy rather than wait for them to potentially turn cancerous years later that will need an operation...don't worry go for it and you be glad you did.

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  • Posted

    ask about prepopik its not as much fluid to drink and easier .Two doses (one packet per dose) of Prepopik are required for a complete preparation for colonoscopy

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  • Posted

    PICOLAX is better too than moviprep. With Picolax you disolve the sachets in a small cup of water...drink it then drink your own clear water to flush your system . Unlike Moviprep which you have to disolve in 2 litres of water and drink the whole lot.

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  • Posted

    Hi everyone

    Thank you for taking your time to reply with your experiences.

    I am still confused as to why the doctor wants me to have this because in usual scenarios I believe if a stool test comes back fine they don't worry about a colonoscopy? It all seems very drastic to me and I am still so so scared 😦

    I just wish I was stronger, I'm driving my family crazy because I keep crying and panicking about it. I think the most I'm concerned about is the Moviprep and having the diarrhoea beforehand. I have been told to start drinking it at 5pm (appointment is at 9.45 the next day). How long did the diarrhoea last because I'm worried about still having it when I arrive for my appointment. Would they still go ahead with the procedure? I am worried about incontinence as well, ugh so many things to worry about 😦 2 litres seems like an awful lot to drink in a short space of time.

    Thanks again

    Charlotte

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  • Posted

    Mine have been no problem. I was mildly sedated but remember everything and watched it on the screen. It was fascinating! I was very chatty throughout and I think they were pleased it was over. I was given the results immediately. I too have health anxiety but all was fine.

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  • Posted

    I have had one colonoscopy last month. I am 31 years old and was scared in the same way like you are scared. My fear was more because I never had sedation.

    Procedure was too easy also I didnt find Bowl preparation as bad as it was explained on google reviews.

    My bad patch started with severe and consistent abdominal pain 2 days later colonoscopy. It lasted for almost 3 weeks during which I rushed to ER 2 times. Had to go through several CT scans , X rays and at last MRI overall this colonoscopy costed me around $8000 + horrible health anxiety levels though most of the things will be covered via insurance but its not really what I was expecting.

    My Intention is not to scare you.Outcome of procedure is really helpful to save your life and you would be tension free for next 10-20 years. I would suggest to ask your doctors to go easy with your stomach during procedure.

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  • Posted

    and yes I was scared to such level that I rescheduled my procedure 2 times but honestly its not really that bad as you are thinking of..

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  • Posted

    Hi Charlotte

    So sorry to hear the problems you have been experiencing with your health. Its definitely a good idea to go get it investigated to be on the safe side. If you are really anxious about the procedure I would see if you can speak to the doctors about getting put to sleep for the procedure or making sure they give you a really strong dose of sedation. I think its best to try and organise this ahead if you can. Apparently if I had wanted to be put to sleep this would have to be referred form my GP explaining I was anxious about the procedure. I have had a Flexible Sigmoidoscopy done before and that was absoloutely fine. Bit of wind and feeling uncomfortable but not painful or traumatic. They were really good with administrating pain relief for this procedure.

    I had a colonoscopy today also and unfortunately it had to be aborted 25% of the way round because the sedation didn't even touch the sides for me. I was asking for more or pain relief as soon as they went in with the camera and I started feeling the pain but they wouldnt give me anymore. I swear I could count backwards from 20 in Spanish, French or German I was that alert and aware of what was going on. I think maybe I was one of the unlucky ones I have heard alot of people who tell me they were fine or so out of it they didnt feel pain or remember the test. Had I have received adequate pain relief and sedation I think it would have been fine.

    As for the prep the diet wasnt that bad at all. The moviprep made me feel so sick i didnt want to eat anything. I would also definitely say if you suffer from slow bowel movements or constipation flag this with the doctor before starting the prep. I had to take an additional 8 movicol sachets as the moviprep wasnt enough to shift the hard stools stuck in my bowel. Luckily it did the trick I was cleared out just in time for the procedure. Maybe if I had menitoned this they could have had me take dulcelax before the moviprep to help things along the way.

    On the plus side I am back home now eating a bar of galaxy chocolate with pretty much no bad after effects, pain or symptoms.

    Best of luck x

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