Colorectal surgeon recommendations

[Lausanjuk]

I've had Scleroderma for 14 years. This summer I started having extreme pain going to the loo. I'm dealing with it with laxatives and a diet change (no gluten and low FODMAP), which works to an extent, but comes with its own challenges! (Plus the pain is still there). A colonoscopy came back with nothing (no cancer, no fissures, etc).

My Rheumatologist says it's related to Scleroderma. He suggested I see a colorectal surgeon, and my GP did the referral to the local Trust. But I'm wondering if I should push to see somebody who definitely has expertise in Scleroderma. Can anyone recommend a Trust / surgeon in the South East?

Thanks

[Badflower]

Hi, I am on waiting list to see Charles Murray at the Royal Free Hospital. I’m told he is the expert for scleroderma issues. I don’t have an appointment until May so expect a wait. Worth looking up his credentials.

[Lausanjuk in reply to Badflower]

Thank you Badflower, I shall do that, and maybe try to get an appointment with him. I'm sorry you're having to wait so long, and I guess I'm resigned to doing the same. I'm actually under the care of the Royal Free myself now, so it's a bit frustrating that I wasn't referred directly by my Rheumatologist to see a specialist!

[Badflower in reply to Lausanjuk]

Hi Lausanjuk, the rheumatologist's at Royal Free never referred me either. It was the lovely pulmonary hypertension team that referred me. They have been great as they know my bowels really concern me.

[Lausanjuk in reply to Badflower]

That's a roundabout way to get a referral! I wonder why the Rheumatologists don't do it...? But I'm pleased that you had a good result in the end. Good luck with it; I hope he can help you.

[OldTed60]

Hi. If I were in your shoes re location of South East then I’d definitely seek both gastro and colorectal surgeon who are familiar with and understand Systemic Sclerosis. Sadly this hasn’t been an option for me in Scotland and as a consequence my bowel and upper GI problems have progressed to near GI failure.

I was lucky to at least be referred to the best colorectal surgeon in my area and finally put forward urgently for a colostomy, which I now have and am thankful for. It’s been a compromise though rather than a solution - and I do feel this could have been done sooner if my surgeon and gastro had any understanding of my systemic sclerosis and disease progression. I am still low fodmap due to gastroparesis and SIBO - but I don’t think there’s any going back now. I drink some Ensure Plus in decaf coffee daily and live on baby portions of bland soft food and rice cakes with vegan cheese and marmite for the extra salt.

I’m considering asking my rheumatologist to please refer me back to Royal Free, where I went privately for a one off consultation with the professor in 2023. He explained that people with my Fibrillarin SSc antibody often have the most severe GI involvement. It’s fairly stable for now though so hopefully yours will be too once you’ve seen a specialist.

[Lausanjuk in reply to OldTed60]

Thanks for your reply, OldTed60. I'm sorry you're having such a rubbish time with this disease. And how frustrating not to find expertise in your area! The system clearly let you down badly if you were allowed to suffer for longer due to lack of knowledge.

I've actually just had my first appointment with Prof Denton (I guess that's who you're referring to) and it was he who said I need to see a gastro OR a colorectal surgeon. He didn't make the referral himself, so I just asked my GP to refer to the latter since it's that area that's causing me pain. It's annoying not to be referred directly to a specialist because - as you point out - it's a progressive disease and this is obviously a progression for me, so why not address it swiftly and save the NHS the cost of me going back and forth trying to resolve it.

Anyway - good luck with your quest to get referred to the Royal Free. It sounds like that would be a good thing for you.

[AJOC4]

I was referred to a gastroenterologist that specialises in Scleroderma and I was prescribed Prucalopride which relaxes oesophagus because I have difficulty swallowing and it is used mainly for constipation in women.

[Lausanjuk in reply to AJOC4]

Thanks for your reply, AJOC4. That must be horrible for you - I hope the treatment helps. I don't actually have constipation - not according to the NHS definition anyway, because I can 'go' every day, it's just excruciatingly painful unless I take a laxative

Was your specialist in the South East, by any chance?