How often are colonoscopies truly needed when you suffer from ulcerative colitis?

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I was first diagnosed with UC in 2017. I had a colonoscopy which revealed moderate pancolitis. I had a couple of flares but taking a few steroids soon cured them. Last Spring though, I suffered a long lasting flare which the steroids couldn't cure. I was hospitalised and had 2 colonoscopies within a week (one without any sedation which was exceedingly painful and caused a great deal of irritation, I'd urge anyone to refuse a colonoscopy without sedation). 

I couldn't get on with Azathioprine at all as it completely zapped all my energy and I felt terrible after two Infliximab infusions. I've cut out red meat, coffee, chocolate and alcohol. I find that cabbage smoothies help a fair bit and although I'm not 100% fine, I'm fairly well now and able to live a normal life. I'm slightly anaemic and sometimes go to the loo more often than before but it's not really affecting my work or lifestyle.

My gastro consultant now wants to carry out another colonoscopy but no reason has been offered why this is necessary. I understand that if you have UC for 8 years, the chance of colon cancer is increased so I can see why frequent colonoscopies could be necessary after 8 years. But I really don't want to have another colonoscopy as I cannot see the advantage of having one at all. The prep makes me extremely weak and the colonoscopy itself could irritate my colon to the point of having another flare. I was hoping that a stool test could be a painless way of assessing my colon but I've just found out that my last stool test result was lost! 

Anyway, I just wondered if anyone could advise me if they think that another colonoscopy is necessary at this stage and how often someone in my position should have a colonoscopy?

Many thanks in advance

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  • Posted

    I was told by my original doctor every 18 months, but I didn't buy into it. I read a study that was on IBD weekly that said from the onset or first discovery of IBD you shouldn't wait more than 10 years for your next one. It said it takes that long for cancer to develope. Now I went in late. I waited 11 years and they found three large growths in my they turned out to be non cancerous. This is what I read, so you have to do what is right for you. Maybe you want to go in 5 years to be safe. As for a colonoscopy without sedation, I would never allow it under any circumstances. I can't believe they put you through that with bowel disease. That is a rotten thing to do. If you get bad again you could try Entyvio. I am on it now and I do get sick after infusion, but it lasts for a day or so and then I am fine.

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  • Posted

    Hi Mike,

    Firstly I am so sorry to hear that you're having to live with such a all-pervasive form of this truly wretched and horrid disease. 

    For what it's worth, my own situation is that I was diagnosed with moderately severe distal ulcerative colitis in November 2011 and have experienced a few minor flare-ups since then, all of which have been calmed by increasing my daily intake of mesalazine.

    At my annual appointment last October, my gastroenterologist suggested that he'd probably be looking at performing another colonoscopy in 2020/21, so about 9 to 10 years after my initial diagnosis. Of course I am very aware that to date I have extremely fortunate that the UC has been relatively inactive. Had it been otherwise, I would have expected to have had one or more further examinations before now.

    Were I in your position I think I'd be pressing the consultant for a proper explanation as to why he/she feels yet another internal examination is needed - and if it is, to ensure you are provided with the proper sedation. I don't know of any justification to put you through that distressingly painful experience a second time.

    Good luck and all good wishes,

    Peter A   

           

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  • Posted

    Many thanks for your replies, I really appreciate you taking the time to help. I have to say I find dealing with the gastro consultants the hardest part of having UC as they all seem extremely negative and if I try to put my views across they look at me as if I must be mad! Their arrogant and superior attitude really leaves a lot to be desired.

    I feel much better now about saying "no" to the colonoscopy. I know the consultant and IBD nurse will try to pressurise me into having one but I'll definitely say no. I totally agree that I should push the consultant for an explanation as to why another colonoscopy is needed. It's frustrating that I haven't been given a reason why I need one. I always like to explain and offer reasons for my decisions as I will when I decline the colonoscopy.

    I would never normally have had a colonoscopy without sedation but I was in hospital and was told that I needed to have one. I was literally given 5 minutes notice so I had breakfast just before, hence sedation wasn't available! As you can imagine, having this colonoscopy during my first ever severe flare up left me in a terrible state afterwards. To say, the consultant wasn't very caring would be an understatement! The more I think about, I probably should complain about the way I was treated. It just all seemed so sadistic - the nurses even used to wake me up at 3am to carry out blood pressure checks and there was literally never any problem with my blood pressure! In a nutshell, I'd never go into hospital again for UC! I was even told I'd probably need a stoma but it was obviously far too early for them to say that.

    Anyway, thanks again and I'll definitely decline this next colonoscopy. I've had 3 now in less than 2 years, 2 of which within a week, so I think I've had enough of them for at least a few more years!

    Thanks again

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  • Posted

    That reminds me. The first thing my doctor said after they found the disease. I recommend having your colon removed. I told him he was crazy. I said I will not and I will treat it and try to hold onto it as long as I can. There is no need unless one doesn't respond to medication or develops cancer. I don't understand the rush to do a colonoscopy on you, when you had just eaten. They should have done it right. Had you go through the prep over night and then do it in the morning after a clean out and then you could be sedated. I woke up during mine and I was screaming in pain. I wouldn't let them continue until they put me out again. Like you my entire colon was diseased and bleeding, so the last thing you want is someone feeding a scope through it irritating things more. Yea it is going to be painful and the doctor should know better. Very unprofessional in my opinion. I would be cautious about the exams though, don't wait as long as I did. I knew something was wrong because there was a change in my bathroom habits, so I knew I had a growth of some type. Take Care.

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  • Posted

    Hi Mike, as a result of 3 major flares over the past year I have had 4 colonoscopies and 4 Flexi-siegmoidoscopies so that my Doctors can keep an eye on everything and make sure things aren’t getting worse. 

    When I was in remission and getting along nicely I had colonoscopies every 2 years.  I suppose it will depend on whether your doctors feel you need close observation at this time, but ultimately the choice is yours as to whether you have the colonoscopy or not. 

    The stool test is a good way to check and also a blood test to check your CRP (inflammation) levels. 

    I hope you get things sorted out and don’t have any more horrible experiences as you have in the past. 

    Ruth

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  • Posted

    Many thanks again for the replies, I'm really sorry to hear of your experiences too. It does seem as though some consultants are pretty sadistic. Sorry for the delay in getting back to you, I started on mercaptopurine and soon had a lot of terrible side effects, very high temperature, complete exhaustion and burning eyes so there's no way I'm taking that again! 

    Given the bad experiences I've suffered I'm definitely going to cancel the imminent colonoscopy now and suggest a stool test instead - hopefully they won't lose the test results or sample as they did last time!

    Many thanks again as I feel even better now about cancelling the colonoscopy and standing up to the medics.

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  • Posted

    I almost forgot. After my initial colonoscopy they wanted to do a Sigmoidoscopy on me three weeks after the other. He said it isn't a big deal, just a couple of enema's and there is no need for sedation. I looked at him with utter confusion. I said I just had the full scope and now you want to do another one three weeks later? I asked what on earth for? He said well I might have missed something. WHAT!!? I was angry at this point. It was a terrible experience with sedation and now he wants me to go through one without. So I said No. He kept pushing it and I said again absolutely not. I will not subject myself to that pain again for no good reason. To this day I still don't understand it. Maybe they wanted to make more money. I don't like to think it was the case, but I couldn't come up with any reason to warrant another scope this soon. Not to mention the pain I was in at the time. So you have to decide for yourself what is warranted or not and get the doctors input for sure, but if the reason seems weak then do what you think is right. Don't get me wrong I listen to my doctor, but they don't always have all the answers and we have to weigh the pro's and con's of the test. So if you put it off because you just can't justify it, then make sure that you ask how often in the future should you come in to be safe. We all want to make sure we don't get cancer, but how often is enough. I was told the last time every two years and I can live with that. So that is what I am doing, you have to decide for yourself what will work for your piece of mind. 

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  • Posted

    I'm really sorry to hear you went through that Craig - I really do begin to think that these doctors maybe carrying out unneccesary scopes for the money. I'm sure they'd have a much different idea about how frequently they were needed if they were the patients! Thanks again

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