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Ronny Allan
When planning to walk Hadrian’s Wall in the north of England in 2014, I carried out a number of risk assessments (as all good Project Managers do!). In true ‘Donald Rumsfeld style’, I considered all the ‘known unknowns’ and the ‘unknown unknowns’. Anybody who doesn’t is either reckless or supremely confident (the latter can sometimes be the same as the former……).
This major undertaking was within 4 years of my diagnosis and within two years of 3 surgeries and I was borderline stable. I wanted to get it done while I was able!
As a Cancer patient, there were some issues I had to consider which might not have made the list for most walkers covering this sort of distance and this type of terrain. One of the issues I occasionally experience is stomach cramps, not that frequent but problematic and quite painful when they occur. If you’ve had abdominal surgery, you might be having to deal with issue. Many Neuroendocrine Tumour (NET) patients also suffer these cramps, a side effect of the cancer or simply as a side effect of treatment.
For me, the main pre-diagnosis symptoms were flushing and occasional diarrhea, the former was helpful in working out my diagnosis. However, in hindsight some other issues might have been masked by routine/’run of the mill’ illnesses a couple of years prior to being diagnosed with Cancer.
I’m not particularly ‘syndromic’ following surgery and somatostatin analogues, however, I do occasionally have to deal with ‘stomach cramps’ (a term which tends to mean the whole abdominal area). Fortunately, they are not that frequent. I might not have a stomach cramp for weeks and then suffer a couple of times in a single week. Consequently, after each attack, I study my activities, my medicine and my diet trying to figure out if there is anything I can avoid preventing this happening. I now maintain a daily diary to assist. Footnote from 2023, I don’t seem to have them anywhere as regular as I used to, but still painful when they turn up unannounced. I guess your body heals slowly, you adjust all the time including what you eat.
I think most people will have experienced stomach cramps at some point in their lives and those who have will agree it’s not nice. I’ve had some really painful episodes in the past; and as is usually the case, it’s helped by visiting the toilet/bathroom. Getting there can be painful as I sometimes find any movement exacerbates the pain with the worst attacks. It’s worth noting there can be many reasons for “stomach cramps” many unrelated to NETs. Read here
You can now see why I listed this as a key risk in walking the 84 miles of Hadrian’s Wall! I ‘googled’ to check the availability of toilets along Hadrian’s Wall to find they are few and far between. You might be excused for thinking there shouldn’t be a problem with all that countryside available? Add the openness of the area; add the constant stream of walkers in both directions and the sum = not that much privacy! As both an ex-soldier and a male, I’m used to using ‘outdoor’ toilets or at best temporary structures. I use these skills to seek out private places to fill the need. I guess it’s more awkward for a female and I sympathise.
I do have a special card which I keep in my wallet but it’s not much use out in the hills! I’ve actually never had to use this card ‘in anger’ but I came very close to using it on Day 5 of this 6 day walk. I was suffering quite a lot of pain for a good mile or so on the outskirts of Carlisle which was semi-urban. I walked past a dozen houses but my pride would not let me use the card – silly boy! There was no way I was going to do a ‘Paula Radcliffe’ (caught short during a marathon). Things were coming to a head as we approached a bridge with a small copse over a tributary of the River Eden. At last, some cover!
Since then, I occasionally waltz into the nearest cafe or hotel on the odd occasion when this happens, no-one has ever challenged me, and I have my special card ready just in case!
Read a short summary of abdominal pain and how to describe it to your doctor when you’re worried about something.
Abdominal Pain general
A lot of people and organisations use the term “stomach” when they mean abdomen”, e.g. stomach pain, e.g. stomach cramp” etc. Clearly in anatomical terms, the abdomen covers a much wider area than the stomach, which is one of the organs within the abdomen, mostly in the upper section. However, some doctors sometimes substitute “stomach” or “belly” for the abdomen.
It’s always difficult to know when to seek help from a healthcare professional
One useful way to described pain is to the use healthcare professional terms as this can sometimes give them clues about the source/cause.
Right Upper Quadrant (RUQ)
Left Upper Quadrant (LUQ)
Right Lower Quadrant (RLQ)
Left Lower Quadrant (RLQ)
Additionally, this description of the type of pain might also help:
- Generalized pain – This means that you feel it in more than half of your belly. This type of pain is more typical for a stomach virus, indigestion, or gas. If the pain becomes more severe, it may be caused by a blockage of the intestines.
- Localized pain – This is pain found in only one area of your belly. It is more likely to be a sign of a problem in an organ, such as the appendix, gallbladder, or stomach.
- Cramp-like pain – This type of pain is not serious most of the time. It is likely to be due to gas and bloating and is often followed by diarrhea. More worrisome signs include pain that occurs more often, lasts more than 24 hours, or occurs with a fever.
- Colicky pain – This type of pain comes in waves. It very often starts and ends suddenly and is often severe. Kidney stones and gallstones are common causes of this type of pain.
This summary from Mount Sinai might be useful for some – click here. This one from NHS may be more or less useful for some – click here.
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Ronny, I’m curious if you agree that stomach cramps seem to lessened with Creon regimen. I had my surgery (liver resection for mets and bowel resection @ terminal illeum for primary tumor) 14 years ago and had been suffering increasingly for the past few years from cramps and such, mostly around my Lantreotide treatments. I started Creon earlier this summer and so far seem to be generally doing much better. I’m hoping that Creon continues to improve quality of life. Thoughts on your experience?
It probably helps
Ronny,
Since my PNET, splenectomy, and liver de-bulking surgery in Nov 2020 I’ve had 3 episodes of small bowel obstruction. Luckily all resolved without surgery but the abdominal pain was intense and accompanied by nausea. Each episode meant a trip to the emergency room for diagnosis and care. Care included scans, nasogastric tube insertion, and stomach vac, observation and waiting. One such episode occurred during our family’s trip to Alaska hiking and fishing. Great experience at the hospital in Soldotna, AK.
I have become pretty good at differentiating cramping discomfort associated with lower bowel (dis-)function from the pain higher up in the abdomen I experienced with blockages.
However, I’ve been advised to error on the side of caution and seek care rather than waiting too long for things to pass. Blockages can quickly go badly and get complicated.
Keith