Crohns, UC, Ustekinumab, Proctitis, Operation

[Wfdstar]

Hi, I’m new to this group but am an undetermined IBD sufferer of 26 years. My last colonoscopy in May suggested a 60/40 chance that I have Crohn’s disease over Ulcerative Colitis. For the last 15 years I have managed my symptoms well with Pentasa. Prior to this I was on Azathoprine but had to stop taking it due to been diagnosed with a malignant melanoma which had spread to my lymph nodes in 2007. I’ve had one major flare up in 2013 which was treated with prednisone IV, oral and enemas .

It has been suggested by my consultant that I step up my treatment due to my colonoscopy showing active Proctitis but I feel this is jumping the gun quickly when I have only had one major flare in 15 years. I blame this recent result mainly on the worry of the colonoscopy, the prep and procedure. I was aware I had narrowing at the rectum (which was my reason for going ahead with the colonoscopy) and my consultant advised this will only get worse over time. I’ve not been totally symptom free over the last 15 years but I’ve had a good quality of life and issues have resolved themselves with the use of Salofalk or Predfoam enemas. I’m currently on 12.5mg of prednisoline which I’m reducing week on week after my colonoscopy results. I’m reluctant to step up to biological such as Ustekinumab when I’ve had a skin cancer but do not want to cause my problems to worsen to a point where I have to have operations (which so far I’ve avoided)

Firstly I wondered if anyone has had an operation due to rectal inflammation and narrowing, what did this involve and was a permanent colostomy required.?

Secondly , What are peoples experiences of Ustekinumab? And has anyone experienced of taking this with IBD and cancer history?

Thirdly, anyone any further experience in bringing proctitis into remission? I’m suffering some mucous, sometimes blood stained but more often not, having 1-4 bowel motions a day and suffering wind more on a night.

Thanks in advance to anyone with any similar experiences or offer of advise or info

[bresbo]

I'm really sorry to hear about your health issues, and also your quandary about the right course of action to take. I'm a bit unsure about replying to your question, because my experience is limited just to proctitis, and I'd hate to say something that might not be appropriate to your condition and health history.

So, regarding proctitis and remission: I am currently in remission after a year long struggle to find the right medication for a flare. You mentioned that you're currently on 12.5mg of - I presume oral - prednisolone and tapering. Are you just taking oral steroids? With active proctitis the NICE first line recommendation (after mesalazine) is for topical (rectal) steroids to bring the inflammation under control. You mentioned predfoam, but it's not clear if you're currently using it. I had very good results with Budenofalk (budesonide steroid foam) combined with Cortiment (budesonide oral pills that dissolve in the bowel). The advantage of budesonide over prednisolone is that there is no need to taper.

[Wfdstar in reply to bresbo]

Thank you for your reply is very helpful and I totally understand your hesitations. I am on oral steriods - Tapering by 2.5 per week. I’ve requested foam enemas (predfoam or colifoam) as they worked back in 2013 but I didn’t know if they were still available and when I asked I was told that they didn’t think they would work but they didn’t give a reason why - I would really like to give them a chance.

[bresbo in reply to Wfdstar]

I think prednisolone foam is sometimes hard to get. It's worth phoning your pharmacy to see if it's available. I have no idea why they told you they didn't think rectal steroids wouldn't work. I know it's not my place to say so, but if you have just proctitis or a little bit of sigmoiditis, then I think they are wrong. A consultant colonoscopist told me the same thing as your people, and he was dead wrong. Also, why aren't they following the NICE guidelines, see here:-

nice.org.uk/guidance/ng130/...

which for proctitis always suggest rectal medication before oral?

I believe one reason is that many patients don't like, or don't continue with, rectal treatments. So consultants and IBD nurses tend not to emphasize them. But the NICE recommendations are clear.

If I might suggest, I would insist on your getting a rectal steroid. The standard treatment today is Budenofalk which I mentioned last time. If they bleat on about systemic steroid side effects etc, you can point out that budesonide has far less systemic uptake than prednisolone, and doesn't even require a tapering schedule. Also, you've proven that rectal steroids worked for you in the past. Why do they think they won't work again?

The NHS is sometimes a stubborn creature, that often doesn't explain its actions. I know it's hard if you're not feeling well, but you have to stand firm against them, especially if they're not being helpful.

I wish you luck!

[Wfdstar in reply to bresbo]

Thank you so much, I’m having a good day today so have emailed my IBD nurses requesting 😊🤞

[bresbo in reply to Wfdstar]

Good for you!

By the way, which IBD unit do you use? I'm asking because I've noticed both from my own experience and talking/messaging to other people, that the IBD nurses generally won't respond with a request for a suggestion for a new medication, but do respond to a request for a specific one. It might be something to do with NHS restrictions on nurses making medical decisions. So generally now, I do my homework and say "I'd like to try xxx" rather than "What do you think".

[Wfdstar in reply to bresbo]

Hi, I’m in West Yorkshire and have requested that they approve the use of foam enemas so my GP can prescribe - I’ve spoken to my GP and she’s reluctant to prescribe anything without their consent 😞. Unfortunately the response times from the IBD nurses is not quick, I’ve had to wait at the most 2 weeks over the last month! I really don’t know what the issue is and do wonder if it’s a cost saving/availability reason for not prescribing.

[bresbo]

I don't think it's cost saving or availability. Budenofalk foam is easily available. I think it's more likely that it's simply the NHS. Could you try contacting your consultant via her/his secretary. You could complain that you've got symptoms, and you're not getting a response from the IBD nurses; that you've used steroid foams with success in the past; and that you'd like to try them again immediately if possible if she/he could send a note to your GP to prescribe. I mean 15 years of mostly remission is a real success story.

I don't understand why they're mentioning expensive monoclonal antibody treatments (Ustekinumab) when you haven't exhausted tried and tested (and cheap) topical steroids. I must say I had a similar experience where they were directing me towards antibody and other treatments before they'd offered me steroids. But I managed to get the steroids and they worked a treat, as I said earlier. When I later asked my consultant why I hadn't been automatically prescribed them as a first line treatment, there was some mumbling and apology about a communication mix-up thinking that steroids didn't work for me.

In my coloured opinion, I think that Big Pharma plays a role in these matters. They want more data on the effectiveness of their latest and greatest products. So they're probably encouraging (aka bribing) doctors to prescribe them.

If you communicate by email, and they repeat their resistance against steroid foam, then you'll have a record of that if you need to complain and request a formal justification of their actions.