Colonoscopy: Could anyone share their... - Endometriosis UK

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Colonoscopy

Mollie99 profile image
15 Replies

Could anyone share their experience of having a colonoscopy?

I have endometriosis on the bowel and and having a colonoscopy in 3 weeks

Thanks

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Mollie99
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15 Replies
Trooper77 profile image
Trooper77

Hi. I found the actual colonoscopy procedure easier than the preparation. I was given 3 sachets of Klean-prep. It tasted vile, so I mixed it with lemon barely. The first pint was ok but the 2nd pint and onwards was a struggle. It made me feel full and slightly sick. I didn't drink it as quickly as tecommended but it still worked.

Following my first pint, it took about 1 hour to work. I ended up going to the loo 21 times within 11 hours. Needless to say I had an extremely sore bottom to the point of bleeding and passing water only from my bottom. I didn't feel hungry at all after not eating for over 24 hours.

On the day, I opted for sedation which took the edge of any discomfort and the procedure was over in a matter of minutes, they took the camera right to the top of my colon. I then went on a side ward and after 10-15 minutes was offered a cup of tea and biscuit. I was awake through the whole process.

However, remember to get someone to accompany you home and be with you for a few hours afterwards. My hubby did for me and once home I laid on the bed and slept for 3 hours! Do not drive.

To sum it up, its not too bad and I'd have it again if needed.

AllthatGlitters profile image
AllthatGlitters

Hi Mollie I have had several colonoscopies and I can say it really is nothing to worry about.

Firstly they send you some bowel prep for the day before, you must be in your own house and near a bathroom. The bowel prep itself if it’s picolax or kleen prep which tells you to mix it with a litre of water and keep drinking. I don’t do this as it’s vile. I put it all in one glass, fill it with 2 inches of water and mix some diluting orange juice then leave it in fridge for a bit. It tastes better when cooler. I then gulp it all down in one go then continue to drink lots of water on it’s own. It does the same job, it’s much more tolerable doing it this way and I usually have a very urgent need to go to the toilet suddenly after a few hours. Your stomach makes some weird noises but that’s because it’s working it’s way through your bowels. TMI but it’s like watery diarrhoea coming out of your system when you go, you will go lots of times but it will eventually stop later on that night. You may have a couple of bathroom visits on the next day but that’s normal. At times your toilet can be painful but that’s normal as think of the amount of poo it’s working it’s way through.

You are sedated at hospital and although you are awake, you don’t feel a thing. It’s all over very quickly. You have a nurse right beside you holding your hand. Even when the doctor comes to see you after, you don’t remember a thing! I remember shouting out when I got mine done saying I really needed an alcoholic drink and I hardly drink. It makes you say funny things.

They told me there and then what they thought I had, so take someone with you as they will remember what the doctor says. You will also be given a report showing what they found on your bowel.

You will feel weak for a couple of days but it actually makes you feel good in the stomach area, it’s like a cheap colonic irrigation!

Please PM if you have any more questions, hope it goes well and I am sure you will be fine x

Mguilfo profile image
Mguilfo

Hi Mollie,

I had one in September and the procedure itself was fine. I was sedated and slept through the whole thing. The worst part is the Kleen prep which I had 4 sachets to take 3 the day before and 1 early on the morning of the procedure. I made it all up 2 hours before I was due to start it in glass bottles and mixed it with elderflower cordial and chilled it in the fridge. It’s horrible if it’s not chilled. After a couple of hours it’s like turning on a tap. I didn’t get sore at all but I put sudocream on the area before I started!

Best of luck with it!

Anri profile image
Anri

Hi! Sorry to be the one with bad news.....

I had one a few months prior to my lap. I have been through a lot and have tattoo sleeves etc, so i can tolerate quite a bit of pain. However the colonoscopy was pure TORTURE. It hurt so much i literally screamed my head off and cried hysterically. The nurse held me down with two hands and the doctor wanted to stop, but i told him to finish what he started or it was all for nothing.

I was not sedated or didn’t take any meds prior. It was my second colonoscopy, and the one 4 years earlier, although painful, not imbearable. This was like cutting with a knife through my stomach. The reason was realized in my lap - i had endo attaching to my bowels.

Next time they will need to sedate me reeeal good. I would suggest the same.

Magsiemoomoo profile image
Magsiemoomoo in reply to Anri

I had a similar experience to you, after a salpingo ooperecromy in Jan this year I had a colonoscopy prob Jul, OMG the pain was unbearable, they did find I have diverticular disease but that in no way explained the intense pain. I like you was white knuckled gripping the side of the bed and screaming in pain. I have a feeling that while I asked for sedation prior they did not give it to me, they acted like they were giving me something so I am not sure why? I was totally wide awake during and afterwards and it was the worst pain I have ever experienced. I have a very high pain tolerance also had tattoo etc so I know I wasn't being a baby.

I think only a minority of people have these issues and I am also wondering if it is due to endo on my bowel as they found endo during my surgery. My bowel is up and down function wise but I am going back to see my surgeon next week as the endo pain is back and now. I seem to have full on menopause symptoms to boot x

Anri profile image
Anri in reply to Magsiemoomoo

It’s ”nice” to hear i am not the only one with these kinds of experiences! 😅

Magsiemoomoo profile image
Magsiemoomoo in reply to Anri

I know what you mean, I thought I was the only one too 😂

applebird profile image
applebird in reply to Anri

This definitely underlines why you need to take pain relief and insist upon sedation!! My hubby decided to go for an endoscopy without it, threw up, passed out and they couldn't finish it.... sedation is def needed, hate that they try to avoid giving it just to save NHS costs in aftercare.

Audrie profile image
Audrie

Hi,

I just had my first colonoscopy last week and honestly it wasnt as bad as I thought it was going to be. If you're prone to hemorriods buy some vaseline and apply it to your butt hole, it helps because you're going to the bathroom so much. It's really just like pooping water....really weird. The worst part was not eating, and drinking the prep. I had to drink 4 liters in total. 2 the night before and then wake up 5 hours before the procedure and drink the rest. It took me about an hour and a half to drink 2 liters. About 8- 10 ounces every 10 mins. I tried to drink it as fat as I could because I wanted to get some sleep before I had to wake up at 3 in the morning to drink the second half. Youll probably be on the toilet for a couple hours. You pretty much go to the bathroom within the hour. Or at least I did. I would mix the prep like 5 hours or so before you have to drink it because it taste way better when it's really cold. Also see if they can give you or you can get a lemon packet and add it to the mix so it tastes.....better....lol make sure to drink a lot of fluids, I liked white grape juice and chicken broth. Also you can have coffee with sugar or splenda just no cream. They also say 7 days before to avoid certain foods, like nuts and seeds. The colonoscopy itself is pretty fast and you'll be asleep most of it. I did wake up in the end and kind of remember looking up at the screen and seeing part of the procedure(was kind of cool to me) but i was still pretty out of it. I remember feeling a lil bit of pain but the meds they give you you wont really care. The next couple days after my procedure i had no pain, my stomach was just making some really loud weird noises.

I hope some of those tips help! And hope your procedure goes well!

Hi, mine was also painless. Others have described the prep well and that is pretty much what happened to me except I was given 4 senokot tablets and two sachets of picolax. I was required to not eat anything the day before the procedure, and the day before that just a limited diet.

The actual procedure was fine. I was sedated (not through choice; the bowel surgeon who treated me said they do that routinely now). Having the camera inside was painless but they found no endometriosis penetrating my bowel wall, which was a relief. They did, however, fine internal haemorrhoids which they banded at the time. Now that hurt like hell and I ended up with a week off work. I was on painkillers for days and could barely walk but they did heal/drop off and now things are much better.

It really won't be as bad as you might imagine. :-)

Summer25 profile image
Summer25

I’m in Australia so we have a light general anaesthetic, we are out to it for a colonoscopy😴

Mine literally took 15 minutes, so quick and drama free. The hardest part of all is the bowel prep 🙈

Angellouise profile image
Angellouise

Hi

The prep is worse then the procedure . I had one done years ago and was recently in the room with my 17 year old daughter during her colonoscopy and she was talking and laughing. The meds they gave her helped so she didn’t even know what was going on or remember anything. Good luck. I’m sure you will be fine. I know it’s hard not to worry, but try not to.

Ceri1973 profile image
Ceri1973

Hi Mollie,

I am endoscopy nurse I also have endometriosis. Colonoscopy can be more painful for women who have endo or who have had abdominal surgery because of adhesions and scar tissue. The experience varies from patient to patient for a number of reasons. Some are very sensitive to the air which causes wind type pain and some people have very bendy bowels which can cause more discomfort and a challenge to the endoscopist. As others have mentioned you are given a sedative and painkiller. I would discuss the level of sedation with your nurse during the assessment process before the procedure and ask to speak with the doctor as you may require more than the standard dose, they should be able to give you entonox (gas and air). If you find the procedure to painful ask them to stop you may need a breather and then they can continue. If you it is to much pain and you want to abandon the procedure tell them this. Once you have withdrawn consent they have stop and bring the camera out. I hope it all goes well for you. Xx

NicolaMc profile image
NicolaMc

I regularly have colonoscopys due to a family history. I would say that the preparation is worst than the actual procedure. I always opt for general anaesthetic as the procedure can be very uncomfortable.

Following the examination you can be tender for a few days, so you will need to take it easy.

Good luck 😉

applebird profile image
applebird

Hi, I've had a few. Bowel prep for me was grand (movicol). You'll feel nervous in the lead up, they may give you a choice re. sedation and pain relief - insist upon it - the procedure isn't painful, not in the way endo is or anything - but can be worse if you have bowel endo or as Ceri said a twisty bowel. They will be as gentle with you as possible, but it feels quite strange understandably. What helped me was being sedated and concentrating on the screen as you can see everything going on, asking questions etc. and listening to them talking when I was semi-conscious.

After you'll feel quite sleepy with sedation and a bit rough, but should be fine within 24 hours. No biggie and they will gain useful info from the procedure.

I had an endoscopy and colonoscopy back to back when I went private first time; I wouldn't recommend it!! Otherwise a-ok. Make sure you have someone with you as you won't be able to drive after. Good luck.

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