Advice please

[Steve101]

I am 68 years old, I have had ulcerative colitis for 45 years. It has been largely under control for the last 5 years, I believe as a result of taking probiotics and changed diet.

5 years ago I had a colonoscopy as a check up, under the NHS. They found a polyp and removed it. I was told I would have a further colonoscopy in 5 years, that was due in July this year. I have now been informed that due to a change in NICE guidance I no longer require a colonoscopy.

I have read the NICE guidance and I believe I still require a colonoscopy. My sister died on bowel cancer 6 years ago at the age of 75. I believe under NICE guidance I am classified as an intermediate risk and should have a colonoscopy. The NICE guidance is open to interpretation. I am currently challenging the hospital on their decision not to offer me a colonoscopy

Advice required:

Does anyone have a view on what the NICE guidance is for my circumstances where my sister died as a result of colon cancer.

If my appeal to the NHS fails, I am considering paying for a colonoscopy myself. Any advice on likely cost and where is best place to have a private colonoscopy. I live in Ashby de la Zouch, Leicestershire.

Any help and advice would be much appreciated.

Thanks

Steve

[Gothbunny]

Hi Steve,

I paid for a private colonoscopy this year and it cost £3000 approx. I’m in the UK in Surrey. Hope you get sorted.

X

[Steve101 in reply to Gothbunny]

Thanks for getting back to me. 👍😃

[Knip in reply to Gothbunny]

That's a huge sum of money, but I guess that if needs must! Quite honestly it really shouldn't be necessary to go privately but today, it seems, it is sometimes the only option.

[watergazer]

Hi steve101. I had a phone check up in august and the IBD nurse said it will be 5 years since my last colonoscopy next summer soI’m being booked in for one. I have ulcerative colitis that showed it was in remission last colonoscopy x

[Steve101 in reply to watergazer]

I am frustrated that they have cancelled my colonoscopy. I have looked at the NICE guidance and for those people with UC that have had a close family member that has had colon cancer it makes the risk greater, and requires surveillance every three years. I have made the consultant aware of this and he has still cancelled my colonoscopy. I am challenging the decision.

[watergazer in reply to Steve101]

👍

[Shoeysmum]

I don't mind the colonoscopy so much and always opt for sedation. However, I don't react very well to the prep due to what I think is a slow metabolism. I invariably spend a lot of time cleaning up after me - even though my toilet isn't too far away from me. Last year my consultant suggested it was time for another colonoscopy and I told him I didn't want one if it could be avoided due to the prep issue. He went along with my request.

[jackdup]

If I was in your situation I would be pushing for a colonoscopy as well. The key to being able to treat most cancers is early detection and the best way to detect it as far as I understand is a colonoscopy. Perhaps if you had no other issues your sister’s cancer may not be enough to convince them a colonoscopy is required but the fact you have Colitis and had a polyp on your previous colonoscopy should be enough to warrant a colonoscopy in my opinion.

Good luck and hope you are successful getting the colonoscopy.

[Steve101 in reply to jackdup]

Many thanks, appreciate your response 👍😃

[Howlinwolf999]

Steve, I would strongly recommend you push very hard to get a colonoscopy on the NHS. Living in Leicestershire I was diagnosed with Ulcerative Colitis around 1975 aged 23. During my period with the condition, I was told that I would have to have regular colonoscopies to monitor the situation because anyone with long term Ulcerative Colitis has a significant increase in the chance of it developing into cancer. Over the years I have many colonoscopies in the latter stages probably every 2-3 years, the odd polyp was removed and analysed etc. Following a colonoscopy in late 2015 aged 63, I was advised that there was a greater than 50% chance of the condition developing into an aggressive form of cancer within the next 5 years. The solution was a no brainer and I had a pan-proctocolectomy with end ileostomy in early 2016. Colitis gone, no evidence of any cancer at that stage in the colon and the likelihood of colon cancer entirely removed. A bit drastic but as I said a no brainer. The early diagnosis is very important. You must push your GI specialist particularly with history of colon cancer in family. Preventive measures before cancer develops is in my view very important for the long-term sufferer of Ulcerative Colitis. The NICE guidance, is just that, guidance and your local NHS trust must have some discretion. I’m afraid in this day and age you cannot be passive and just accept their initial response, you have to push to get what you deserve. Good luck.

[Steve101 in reply to Howlinwolf999]

Thanks for your response - much appreciated.

The consultant is still refusing a colonoscopy but has suggested I approach my GP to make a referral to the IBD Nurses so they can consider a colonoscopy on the grounds of my sister having died from colon cancer, so the door is ajar, i am making an appointment to see my GP.

If all else fails I will pay privately for a colonoscopy and take the big dent in my savings.

Like you advise you cant be too careful!

On a separate issue I was speaking to a friend yesterday and he had been refused treatment under the NHS as her was over 75, i can see this increasing.

Thanks again for responding.

Steve

[Knip]

In other words send you back to the beginning to go through the system again! This kind of thing, and the frustration it casuses, makes me angry, and yet anger does not come easily to me. I'm usually very easy going.

[Malachy12]

it makes me very sad and angry that this is happening to you. The stress and worry does not help the condition. Keep asking for your colonoscopy. I am symptom free but have been told if I have problems they will give me another and I had mine 3 years ago with no family history. Good luck