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Ronny Allan
OK – we’ve gone through diagnosis; we’ve gone through treatment and now we need to live with the consequences of cancer and its treatment. Not a day goes by when I don’t feel some twinge or some minor pain, and I think ‘what was that?‘. Fortunately, many things can just be day-to-day niggles or in my case, the perils of getting older!
The natural tendency is to think your cancer is causing these things…. easy to say, but very often not easy to prove. However, for Neuroendocrine Tumour (NET) patients who have had surgery, anything that seems like a bowel obstruction is quite a scary thought (I suspect this is also an issue for other cancer types). In fact, even before diagnosis, a bowel obstruction can be how the condition is diagnosed in the first place, i.e. pain leads to more pain, and that can sometimes result in a visit to the ER/A&E which can very often lead to a scan and an incidental diagnosis of NETs (and I suspect some other cancers).
I guess this isn’t just a threat for those who’ve had intestinal NETs but others in the vicinity of the intestines could also have this issue – the abdominal cavity is full of organs all very closely packed together! Both the small intestine and the large intestine can become blocked and if they can’t be unblocked by non-surgical means, it can become a bit of a drama for the patient. Blockages can be full or partial so it can often be a tough call for the medical team due to the effects of the patient’s existing surgery including but not limited to previous surgical scarring (adhesions), mesentery, or retroperitoneal fibrosis complications (yes retroperitoneal fibrosis is a thing – read about that by clicking here). Clearing the blockage by non-surgical means is the optimum solution. The presentational symptoms and scans can give immediate clues. Although there are slightly different symptoms for large and small intestine (bowel) obstructions, the key symptoms of a blockage would appear to be:
Feeling bloated and full
Severe abdominal pain
Feeling sick
Vomiting large amounts
Constipation and inability to pass gas
Looking at some authoritative sites, the logical (and fairly obvious) decision steps seem to be:
Is there an obstruction or is the problem something else?
If an obstruction, where exactly is it?
What is causing the obstruction?
Are there any complications such as adhesions, twisted loops or hernias
Optimum treatment
Quantity vs Quality
Adjustments to try to find the magic spot between stool frequency and bulk is a challenge and it’s not really an exact science. I call it the battle between quantity and quality! It’s a constant battle.
In 2016, I had 3 bouts of constipation and I confess that a potential blockage did cross my mind on all 3 occasions. However, I was comforted by the fact that I had no nausea and/or vomiting which I suspect is one of the key symptoms indicating a blockage rather than just a sluggish system. Fortunately, on all 3 occasions, the matter settled following a few days of right-sided pain (RLQ). One occasion required lactulose but all three required patience sprinkled with a pinch of endurance! I have to say the lactulose experience was not a good one – fatigue, brain fog and general malaise …..but much better than surgery.
I remain very conscious that I need to keep a balance between eating foods that are easy to digest and may transit quicker than I would like and getting the goodness in other foods which I know are not the easiest to digest and cause a slower transit, but they provide other benefits. This is a case of trial and error over time. It’s one of the reasons I keep a simple diary. Currently, my average BM per day is 1.4 (i.e. around 42-44 per month). In the last few years, I average around 6 days per year when I have zero BMs which is always a worry and something which would have been unusual even before my diagnosis. Fortunately, none of them have been consecutive days but some have been close together.
Over the period since 2016, I do see a further reduction in the number of my overall bowel movements (BM) but it’s accurate to say that is mostly due to my adjustments and settling down and stability of my disease. That said, when I look at my diary going back to 2013, I can see that the 2+ BMs column was always the bigger number, I can now see in 2021/22 that the bigger column number is now 1 single BM. Cleary what I eat on a particular day plays some part. I also know that my surgery and perhaps other factors has left me with a feeling of ‘incomplete emptying’ and I now remain in the bathroom for longer periods to counter this, perhaps this has led to fewer BMs on average? This sort of regime has some positive spin-offs as I have a lot of freedom to get on with a normal life. Perhaps my quantity vs quality strategy is working to some extent? (I do manage the risks carefully though).
Worst case
In the event of a trip to ER/A&E feeling like nothing is getting through, no home remedies are working, and the pain is becoming unbearable, then I would insist they check my latest CT scan on their system in order to at least see my adjusted plumbing. I suspect in many cases; a fresh CT might be ordered. I would also insist they call my NET team in order that they are made aware of my clinical background and risks. Several clinical trials have shown that nonoperative management resolves most uncomplicated small bowel obstructions. Personally, the very last thing I would want is another bowel surgery, which can come with considerable morbidity in someone with existing surgery in that area. I would hope that a non-operative solution could be found. But I would want my NET team involved in any non-oral solutions.
If you are at risk for bowel obstructions, it’s best to seek professional advice from a NET specialist and/or specialist oncology dietitian on preventative measures, e.g. diet
Disclaimer
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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If you have ever had your colon resected blockages can occur in diets rich in insoluble fiber. https://www.health.qld.gov.au/__data/assets/pdf_file/0022/152473/gastro_obstruct.pdf
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I was one of those who experienced an SBO caused by a small intestine NET. I do wish it hadn’t taken a year for the doctors to figure that out 🙁 but the fact is that without that SBO, I strongly suspect I would have been referred to a psychiatrist instead of a general surgeon after a year of imaging and tests showed absolutely nothing wrong…So I am grateful for that SBO today. They are extremely unpleasant experiences. Yes, Ronny, you are correct when you write “I was comforted by the fact that I had no nausea and/or vomiting which I suspect is one of the key symptoms indicating a blockage rather than just a sluggish system.” It is possible for a patient to have bowel movements (American for “motion”) and still have a partial SBO; if stool remains in the large intestine lower than the site of the blockage, it will behave as usual. The key is frequent, relentless vomiting. Difficult to ignore, frankly!
So sorry you had to go through that. However, as you say, it was the trigger you needed for a diagnosis. I often think back to what might have happened had I not been sent for a routine blood test which triggered mine. Good luck Catherine!
Just had surgery to remove complications from scar tissue/adhesions. Became very malnourished after multiple blockages and fasting over a few months. Could not have surgery initially because of healing concerns. Be sure to keep an eye on your albumin and prealbumin levels. Had to have intravenous TPN feeding for about a month to get these levels up before they could do surgery. Now I’m doing well, hoping the adhesions don’t return. Taking a capful of generic Miralax daily to keep things moving along and it works great!
Just had a copy of my surgeons letter following meeting about possible obstruction, the messenteric mass is a concern. Funny how seeing it written down in black and white makes it less grey, if you know what I mean. I am very glad they are proceeding with caution.
Hope you get some answers for you too, my mother-in-law suffers with diverticulitis off and on. It is not pleasant. Mind you none of this is.