Frequency of colonoscopies

I was first diagnosed with UC in 2016. I had a colonoscopy which revealed moderate pancolitis. I had a couple of flares in 2016 but taking a few steroids soon cured them. At the start of 2017 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

Many thanks for your reply.

1.) I'm not currently on any medications at all although my consultant wants me to try a different type of medication to the Azathioprine which I was unable to tolerate.

2.) Daily bowel movements vary but usually between 2 and 4 times. I occasionally pass a small amount of blood and there is rarely any urgency.

It sounds as though the stool tests or the sigmodioscopies could be a better idea for me but I always find it difficult discussing options with my consultant as there always seems to be so much pressure on following and complying with everything he says. It is does seem to be a case of them trying to get their own way all the time. I almost got pressured into having a colostomy bag but I see this as an absolute last resort.

Many thanks again for your help, I'll definitely ask the reasons why another colonoscopy is needed - if reasons were offered I'd be much happier about having it done but it always feels as though the consultant has the final say and his view is never questioned. But at the end of the day, at this point in time I don't personally feel as though I'll gain from another colonoscopy - I've no doubt there is some ulceration present but I don't feel as though a colonoscopy is going to reveal anything other than this.

No doctor-dictators allowed. Uc is for life, and you need to work well with your doctor and feel comfortable talking about anything, disagreeing at times, and suggesting alternative ideas. The best doctors are partners in our treatment. Try working together with yours, and you can always switch if he/she and you don't get a long!

Well that's the thing you know there's some mild inflammation lingering but overall you're doing fairly well from what you describe. A scope might show that but won't exactly be a surprise. Urgency can be a real killer for many of us when we're flaring, so lacking it is great.

Yes, you should be on a maintenance medication of some kind. Others are available if you had a bad reaction to that one.

Many thanks for all the replies, I really appreciate you all taking the time to help. It's the first time I've joined a forum since being diagnosed with UC. I have to say I find dealing with 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. As I was saying, 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.

It would be great if I could suggest alternatives and discuss the issues with the gastro consultant but it is always a one way conversation as far as they are concerned!

I've already switched to a different consultant as the first one wasn't the easiest to deal with - a couple of choice quotes from him include "I always get my way" when I really didn't want to have any more infliximab as it was making me feel absolutely terrible and not really improving my colitis and "Your colon has probably stopped working!" when I didn't use the loo for a day! To give you an idea of how negative he was, he even booked me in for a fairly long appointment with a stoma nurse after my 2nd flare up! If I wasn't stubborn, I'd have been fitted with a bag! I'd only ever consider that as a last resort and I think it's fair to say a bag would only be necessary in a very severe case. I'm in the UK and dealing with the NHS and I do wonder if these consultants get some sort of financial incentive to carry out colonoscopies and to refer for stomas.

But although I've changed consultants, they all seem to sing from the same hymn sheet!

I am very thankful that I very rarely suffer from any real urgency and bizarrely, when I'm out and about I can go for hours without needing the loo and never have any problems. If I'm indoors, I do go more often than normal but there's no real urgency and in a nutshell, I can live with the symptoms. The consultants seem to have that angle that because I was ill with a flare up last year it is bound to get a lot worse - of course it may get worse but it may get better! I personally think a positive attitude helps.

I find it impossible to discuss anything such as diets with the consultants too. It's blatantly obvious that if I overindulge I have worse symptoms but as I say, the consultants all claim that diet has nothing to do with UC! So that represents a major obstacle to having a discussion with them.

Also, when I've had bad side effects from infliximab and azathioprine the consultant always tries to suggest it's something else causing the side effect. When I had a rash for the first time in my life after infliximab, the first consultant tried to suggest it was the colitis causing the rash! The amount of stress the consultants have caused is incredible.

I'm really sorry to hear that Connor77 suffered 3 scopes in 3 weeks. I'm very glad to hear you gained compensation, some consultants do need to be questioned and action taken against them. When I was in hospital I had a scope with no sedation which let me in a right state. A week later, I had another one! All the nurses and the guys who prepare you for the scope couldn't understand why I needed another one so soon, especially after the state I was in after the first! I diplomatically said that I expect it's to see if I'm better and the first gastro consultant I switched from typically negatively said "No, I don't expect you'll be better!" I should have said well what are you doing it for then! But I was unable to access the net in hospital so couldn't do much research until I came out.

Thanks again

I think there's nothing wrong with a healthy-skepticism at a gasteroenteroligist appointment, and to ask why when something strikes you as odd/unexpected. I always listen first, ask a lot of questions, and at times disagree and suggest alternative approaches. We'll discuss, weigh the pros and cons of all options available together, and come up with a decision that's agreeable. We have a choice in doctors, and they can simply tell us to go elsewhere should we never listen and are only argumentative.

Few gastereoenteroligist, in my experience, know much about alternative treatments. There's some liability behind it, but doctors treat based on approved treatments for UC that have sufficient evidence behind them. So, diets and supplements are often not brought up due to the lack of clinical-evidence and official approval for use in treating UC patients. There's some small-scale, open label studies looking into various alternatives that show some promise (those are at times a bit optimistic). However, they have not been studied sufficiently (placebo-controlled, peer-duplicated results, large studies, etc.). Doesn't mean those alternatives don't work, just means it isn't known with enough certainty to broadly recommend them to all UC patients across the board.

Certainly, you can try whatever you want, and some have found benefit in using alternatives exclusively or in tandem with traditional UC treatments. UC is for life, you have plenty of time to experiment and refine your treatment to eliminate UC symptoms and that's a noble pursuit (as symptoms suck!). It's a lot of trial-and-error, with no guarantees of result. You can make a list of things that hold promise and have some research behind them and try them and see if they help. Some of us do.

However, I would not write off humble mesalamine (asacol, mezavant/lialda, etc.) and would definitely give it a try. The vast majority of us do require an ongoing maintenance medication. Mesalamine also helps reduce our colorectal cancer odds, which is normally elevated for us.

there was presumably reasons you tried the different meds you failed.

if you are on no meds no, one questions is there is inflammation, just not so bad symptoms. cancer follows the inflammation - not te symptoms. SO, one reason for checking could be to monitor for pre-cancer.

Also some IBD patients get IBS or IBS-like symptoms even when inflammation is gone. Knowing if they need to treat IDB or IBS could be another reason to get a scope.

But ask the reason.