Irritable bowel syndrome (IBS) - Ronny Allan - Living with Neuroendocrine Cancer

10Mar 2023 by Ronny Allan No Comments

Fructose intolerance – the NET Effect

Background When I cast my mind back to my very first surgery, I remember all sorts of 'plumbing' issues but was told it would take a while for my adjusted plumbing to repair and do its work once more. It's not gone fully back to normal, but I accept minor side effects of getting rid of cancer (metastatic with small intestine NET primary). My diet is slightly different nowadays as I endeavour to return to that normality, and I have a good handle on what makes me move faster AND slower. Constipation is not good either, so I try to find a middle ground. I started taking pancreatic enzyme replacement therapy in 2018 and often use that to offset a meal containing more fat than other meals, similar reducing dosages for lower fat…

05Dec 2021 by Ronny Allan 5 Comments

Neuroendocrine Cancer Diarrhea- building the jigsaw: Bile Acid Malabsorption

Diet and Nutrition, Patient Advocacy, Treatment

With Neuroendocrine Cancer patients, the mention of "diarrhea" is a topical subject. There's the usual claim that it's caused by carcinoid syndrome and for some that will be true, particularly people who have tumours associated with that syndrome, that is, those who have mostly a midgut primary; and that is, those who mostly have elevated levels of serotonin (via 5HIAA testing). When you look at epidemiology data, it becomes clear the numbers associated with carcinoid syndrome are much lower than what might be perceived when analysing many comments in any patient group - most epidemiological data suggests around 10% of the total number of NET cases. There are a number of reasons for this confusion including the belief that any type of Neuroendocrine Cancer can get carcinoid syndrome when in fact…

23Apr 2019 by Ronny Allan 2 Comments

Clinical Trial: Treatment of IBS with diarrhoea – titrated ondansetron (TRITON)

Clinical Trials

I was never diagnosed with Irritable Bowel Syndrome (IBS) but sometimes I feel like I now have it. I know many others feel the same way. But when I look at the alternatives, I can't help thinking it's a small price to pay given that one of them might be a slow degrading quality of life until shuffling off this mortal coil. If I had the choice again, I would still take the surgery. Before the article continues, let me be clear - I'm not suggesting this is a potential treatment for NET patients with post abdominal surgery side effects or side effects of any other treatment, nor am I suggesting it's a potential treatment for those with carcinoid syndrome diarrhea. I publish it because there is a connection to…

18Oct 2016 by Ronny Allan 20 Comments

Did you hear the one about the constipated NET patient?

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Treatment

In my neck of the woods, "did you hear the one about the ........." is normally a precursor to a witty comment, or a joke. However, constipation for NET patients is not actually funny - read on.Certain types of Neuroendocrine Cancer are very heavily associated with diarrhea, either as a symptom of one of the NET Syndromes (yes there is more than one .....); or as a result of surgery or certain other treatments. Occasionally, these symptoms and side effects can all combine to make it quite a nasty and worrying side effect.I must admit to being surprised to find myself with feelings of constipation from around 4-5 years after my treatment and I set about trying to find out why that might be. To understand why I got to this…

11Oct 2016 by Ronny Allan 9 Comments

Neuroendocrine Cancer – were you irritated by your misdiagnosis?

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Look on any site about Neuroendocrine Tumours (NETs) and you'll find the term IBS (irritable bowel syndrome) frequently mentioned. That's because it's a common misdiagnosis for many before being formally diagnosed with NETs.But what exactly is IBS, why is it such a common misdiagnosis for many NET patients and how can these misdiagnoses be prevented or reduced in future? I just spent a few hours doing an online training course on IBS and I want to pass on some stuff I found to be very useful. I have never been diagnosed with IBS but having researched the issue through some training, I can understand why it might be in the thoughts of a general practitioner for many scenarios. Much of my research was focussed on the British Society of Gastroenterology (BSG) who sponsored the online course I completed which also used…