Colonoscopy tomorrow - very scared of test and result.

[Sammy2021]

I'm having a colonoscopy tomorrow due to issues which have been ongoing for around 4 years. I started to have a colonoscopy 3 years ago, but they decided to stop because I was in so much pain (they couldn't sedate me, so I only had gas and air). They then did a PillCam of small bowel (clear) but never looked at my colon,

I'm so scared about everything to do with tomorrow. I'm scared about the sedation, the test, and mostly the result. Because this has been ongoing for years, if it is cancer, it's almost certainly stage 4 (I have pain in my liver area too, so that would make sense). I'm on 32 but I have seen on here and on other forums, websites, etc, that it does happen.

I'm literally shaking and crying and I feel like I'm in a nightmare. But I suppose I'll feel much worse after they give me the result. Not sure why I'm posting - some encouragement perhaps? Any would be appreciated.

[bantam12]

The prep which you are presumably taking today is the worst part of !! Once tomorrow comes you are nearly done, just make sure you have IV sedation and plenty of pain relief and if you are still uncomfortable ask for more, it will soon be over and you should be told the result and given all the paperwork before you leave the department. Hopefully you have someone to take you home and stay with you. Good luck

[Sammy2021 in reply to bantam12]

Thank you for replying to me. Yes I'm taking the prep now - it's disgusting! It says to drink within 30 minutes which I'm struggling with. I'm mainly afraid of the results I'm convinced they're going to tell me it's cancer. No good worrying about it now, but I can't stop. It's awful.

[bantam12 in reply to Sammy2021]

Everyone gets nervous about results but try not to assume the worst, it usually isn't ! Let us know how you get on.

[Godismysaviour]

Hey ive gone through this and trust me the prep was the mossssst horrible part! Once you go through this and they tell your results are all normal you will look back at it and say f*** you colonoscopy ...!! Trust me you will be great! I advise you tho take some wet tissues or something as accidents may happen hahahaha (my experience) .. good luck and let us know how it went!

[Sammy2021 in reply to Godismysaviour]

Thank you. Glad to hear yours went well. I actually found it really painful when they tried the last time (3 years ago) so they had to stop, but I didn't have any sedation as they couldn't get it in my vein - hopefully I won't have the same problem this time! Thanks for the tip about the wet wipes - good idea!

[elwins]

As they say the prep is the worst part. Not a easy time for you, when I had mine colonoscopy I was lucky had a very good nurse who just sat and talked to me all the way though it, needed no pain relief, she was brilliant. You just have to get it done they found out with me it was colitis. I was lucky which I am sure you will be. Best of luck.

[Sammy2021 in reply to elwins]

Thank you. Glad to hear yours went so well. I'm really hoping for colitis because I'm scared it's something worse. Will keep you updated

[Pipinha in reply to Sammy2021]

Sammy you made blood tests? Inflamation in results of your blood test?whats your syntoms

[3112]

Please don't assume the worst. I had colonoscopy 4 weeks ago and all preliminary tests ( blood, faeces etc.) Pointed to the worst. In fact my GP told me he thought it was cancer. However the colonoscopy showed ulcerative colitis. I still have to wait for final diagnosis from pathology as to whether it's crohns or not. The prep is the worst bit and you're nearly there. The colonoscopy is not bad and then you'll be reassured and feel great once it's over. Good luck and just think it will all be over soon.xx

[Sammy2021 in reply to 3112]

Thank you. Glad to hear yours went well. Although you have colitis, you must be so relieved after what your GP told you! It's pretty bad that they said they thought you had cancer - the GP can't know that. I have mine in a couple of hours and have everything crossed! X

[3112 in reply to Sammy2021]

Good luck fingers crossed for you. Let me know how you get on xx

[Pipinha in reply to 3112]

And you made blood tests? And not find the inflamation?

[Pipinha in reply to 3112]

And wthat is your syntoms?

[Pipinha in reply to 3112]

made blood tests? Inflamation in results of your blood test?whats your syntoms?

[_hello2018]

What is your result? I had mine done today both endoscopy and colonoscopy. Was really worried too but was asleep throughout the whole procedures.

[Sammy2021 in reply to _hello2018]

I have it in a couple of hours - still super scared. Glad to hear yours went well (I'm guessing your result was good too?)

[_hello2018]

It will be okay. I was super scared too. But it was quick and you won’t remember anything.

I had the worst symptoms but thankfully it is not cancer. These are my diagnosis -

- intestinal parasites, proctocolitis, mixed hemorrhoids.

Was prescribed some antibiotics for treatment.

[Pipinha in reply to _hello2018]

Quais eram os seus sintomas?

[Sammy2021]

Another failed colonoscopy This time I had IV sedation and IV pain relief but it was super painful. I was trying my hardest to keep my mouth shut because I didn't want them to stop like last time. However at one point it became too much and I couldn't help but let them know I was in pain. He said he wanted to stop and asked him to keep going. We tried again and it hurt again. He said it wasn't safe to keep going because the pain was as he was trying to get round the bend of the sigmoid (same place they couldn't get past last time) and that they don't have a good view while doing that, so if he kept going while I was in that much pain there was a chance he could tear my bowel. So he looked at lower sigmoid and rectum, which both looked normal, and also took biopsies. I'm thinking I should have a CT colonoscopy, but that will be a while away because even the the colonoscopy was urgent, I apparently won't hear back from the consultant until he looks at the biopsies, which is another 4 - 6 weeks.

I'm absolutely gutted. All that prep, all the anxiety, all the pain. I just want an answer. I feel like this is my fault for not keeping my mouth shut about the pain, but it was honestly worse than (or at least up there with) childbirth, so it was extremely difficult to stay quiet. Still though, I'm mad at myself.

[bantam12 in reply to Sammy2021]

That's a shame but if it's to painful it's better to stop, you may have some extra loops which make it difficult to navigate.

[Sammy2021 in reply to bantam12]

I did wonder what the nurse meant when I asked why it was hard to get round the bend both times and she said "some people's bowels are loopier than others". Feel like my mind is loopier after all this... (I blame the sedation for that terrible joke).

[Viklou in reply to Sammy2021]

My last Colonoscopy was painful too and they had to stop. I was told I was hypersensitive. I've have had a Colonoscopy before in 2016, which was noted as difficult but didn't have as much pain as that. The hospital instructed us to take two senna for 5 days before the prep, which I did question if that was correct. Personally I think the senna made my bowels sensitive. I'm not soft by any means and thought my pain threshold when generally high but it obviously wasn't that day. However I also believe it's down to the skill of the endoscopist. I think the guy that did mine was a total t%@t, and immediately became defensive when I asked what the hell happened. That was October last year. Got really sick January from both ends which has resulted in a course of Budesonide for 8 weeks to bring the inflammation down. These are helping to be honest, so for now I'm doing much better than I was.

[Sammy2021 in reply to Viklou]

Sorry that you've had a similar experience. It's reassuraning to know though because I have a very low pain threshold and that made me blame myself more. I blamed my endoscopist for mine last time (and I agreed, it definitrly can be due to their skill!) but with it happening twice to me now, I think it's just me.

I have never heard of taking senna before the prep. Mine actually said have low fibre food the day before. I mainly get diarrhea though - maybe they advise people who tend to get constipation to do that? (Not sure if that was one of your issues). I feel it would definitely make my bowel more sensitive though.

Glad to hear you're doing better than you were

[Viklou in reply to Sammy2021]

Definitely didn't need the senna lol

[Howlinwolf999 in reply to Sammy2021]

Hi Sammy

I am so sorry to hear you are having such a rough time with your colonoscopy. Do not reproach yourself, you were absolutely right to let them know how much pain you were suffering, a perforated colon would have been the last thing you would have wanted.

I am a male (you see why I mention that later) living in Leicestershire and suffered with Ulcerative Colitis for nearly 40 years and the numerous gastroenterologist’s I have dealt with were really good. During the time of my treatment, I have probably had more than 15 colonoscopy examinations + a few Barium Enema’s. To my mind the prep was the worst part of the whole process, awful but boy does it do the job! I chose to have the examination without sedation on possibly 3 or 4 occasions relying on them pumping up the colon with air/gas. In my case, I considered it very doable but very, very, very uncomfortable to say the least and if I really had to, I could have done it again but it wouldn’t be my first choice, sedation is so much more comfortable. I had developed a stricture (narrowing) in my colon and for a few years they used a paediatric colonoscope so that they could get past the stricture. I don’t know how but over time the stricture disappeared and I was back to the adult colonoscope. Your bio indicates that you are female and ordinarily I wouldn’t have considered it relevant but a few years ago my niece was going for a colonoscopy and to reassure here I did tell her it was a straightforward and painless procedure as mine always had been. I was somewhat shocked to hear that she had a rough time, a very painful procedure which couldn’t be completed. I don’t remember the exact details but have vague recollections that it was something to do with having been through 3 pregnancies something had become fused making the examination more difficult than usual, not sure how that works or if it could be relevant in your case.

In your shoes I think I would like to speak with the consultant gastroenterologist a) to find out exactly what happened during your procedure and anything they found, (after sedation you rarely remember all you were told) b) would there be any merit in trying again with a paediatric colonoscope and c) what other options should be considered eg CT/MRI etc.

Best of luck

[Sammy2021 in reply to Howlinwolf999]

Hi. Thank you for reply to me Sorry to hear that you've got UC - at least you've had great doctors though. Hope your niece is doing OK.

I have only one child who was born 13 years ago, but funnily enough that's when my bowel issues first started - 2 weeks after she was born. I was 18 years old. Prior to that I had never had any issues (starting to forget what that was like!). I didn't experience any blood so they diagnosed me with IBS. However, now I wonder how long the inflammation has been present because the first calprotectin test they did (8 years after the IBS diagnosis) came back high, as has pretty much every one they have done since. So perhaps something did happen to my bowel!

I have my appointment with the gastroenterologist tomorrow, so I will definitely take those questions to him (you messaged at a good time!). The last time I saw him, he seemed surprised that I had been left without any further investigation for so long (my first high calprotectin reading was4 years ago) so I'm expecting him to want to investigate further.

Will post an update once I have one. Thanks again

[Sammy2021]

Hi, just posting an update. I just had my private appointment with the same gastroenterologist I saw a month or so ago. I explained what had happened during my colonoscopy and gave him my report. He said that we need to wait for the biopsy results (which will be back in 4 - 6 weeks) before deciding on what to do next. I explained that, regardless of what the results show, I feel that I need to have the whole bowel looked at to rule out cancer as even if it does show IBD, I could have cancer too - especially as IBD does put you more at risk. He just said "I don't think you have bowel cancer." The last time I saw him he said "I don't think you have it, but we can't say for certain until we look at the whole bowel". I'm not sure why he is now less concerned than the last time I saw him.

I asked if we could do a CT scan instead and he said he didn't want to do it because of my age (due to the radiation involved) and that he thinks the NHS doctors might say the same thing. I can't have an MRI (due to metal in my back) so I didn't bring it up. He suggested doing another colonoscopy under general anaesthetic once the results are back, but he has encouraged me to stick with the NHS, even though it will take months to be seen. He said going private would cost around £3000 (with general anaesthetic) and he doesn't seem to think it's urgent enough to warrant paying that much money. I said I'd think about it and get back to him. I just don't know what to think anymore.

[mondlee6248 in reply to Sammy2021]

Should still go for the colonoscopy