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
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
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Ronny
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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.