Reassured by the diagnosis of diverticulitis. I modified my diet to control the symptoms and possibly avoid having major surgery. The symptoms then became more like Coeliac Disease
Continuing from where I left off in the last blog, By now I had now been on high-dose antibiotics for six weeks, the symptoms of diverticulitis had settled, and my appetite had returned to normal. Reassured by the results of the colonoscopy which had identified that the problem was only diverticulitis. Diverticulitis is traditionally thought to result from chronic constipation, but more recently this theory has been discounted. The condition is exaggerated by constipation and this tendency is relieved by having more fibre in the diet and a softer stool. I followed this through by consuming more fibre and taking Fybogel. Fybogel is a powdered fibre supplement that you drink by dissolving in water.
Did I have gluten intolerance?
By taking this approach to manage my symptoms, things settled down for six weeks, but then I began to get episodes again. Bread or pizza appeared to precipitate these episodes, which made me wonder if I had a degree of coeliac disease or gluten intolerance as well. Eating bread, pizza or pasta would cause my stomach to swell up and become distended. The natural treatment to control the symptoms is to cut out foods with gluten in them and control the symptoms. So I did that too. For a few months, this seemed to have helped. I now thought that I might have a gluten intolerance which was causing or exacerbating my symptoms. It seemed sensible to get this investigated before committing myself to major surgery.
My weight had dropped from perhaps 100 kg down to 95 kg which pleased me. By October 2017, I was able to undertake a week-long strenuous cycling holiday in Italy. This was in no way gentle cycling along a canal bank. Instead, it included a group of perhaps 10 or 12 other riders cycling 70 or 80 km a day up steep hills. Thinking back, I remember that my stomach had been unusually distended that week. People had thought that I was much fatter than I was and as I was slower than the others, they gave me extra consideration when climbing up hills.
In fact the distension probably resulted from the high-carbohydrate and high-gluten food I was eating and sub-acute obstruction. After a hard day’s cycling I remember eating pasta and other high-carbohydrate food. While it was tasty, it triggered my stomach overnight to become distended and uncomfortable. By the next morning, it had settled and I could cycle for the day – only for the symptoms to return the following night after eating.
I managed to complete the week’s cycling and went back to my low gluten diet when I returned home. Once again, this improved my stomach issues for several months.
A further episode of bowel obstruction
Skipping forward, it was now Christmas time. On Christmas Eve I was struck with the worst and most severe episode yet. Over a couple of days it developed causing me to lose my appetite, to feel distended, a little nauseous, and have some abdominal pain and constipation. It became worse when I started vomiting and retching as well. I went to bed, drank only water and started taking antibiotics. But it didn’t seem to help as I continued to vomit for 24 hours, and was only able to drink water for 48 hours. It was well over 3 days before I was able to get out of bed. As usual, I recovered very quickly after that. I even remember going out for an Indian curry with friends a couple of days later. But as it would happen, I ended up having another mild episode for a couple of days.
able to get out of bed. As usual, I recovered very quickly after that. I even remember going out for an Indian curry with friends a couple of days later. But as it would happen, I ended up having another mild episode for a couple of days.
All of this didn’t seem to fit with a normal episode of diverticulitis. I knew that it was now serious and again I needed to seek help. I was confused by what appeared to be a gluten intolerance and the lack of a temperature which would have suggested diverticulitis. The ongoing problems now make me tink that I needed the diseased part of my bowel removed in what would be a sigmoid colectomy. In expert hands, particularly for non-malignant disease, this can be undertaken through telescopic or laparoscopic surgery. Laparoscopic colectomy allowed a quicker recovery time but not all surgeons were able to undertake the procedure safely.
Just as the New Year began, I phoned and booked an appointment with SM, who is a gastroenterologist at St Mark’s Hospital. Within the profession, St Mark’s Hospital in London has the best reputation for bowel surgery. I saw him privately in central London and he told me that the most likely diagnosis was diverticulitis but agreed that there are some features which were not typical. He undertook a battery of tests which included a test for coeliac disease and a test of my pancreatic function just to make sure my pancreas was working normally.
The results came back a week later. Some, but not all of my coeliac tests were positive and my test for pancreatic function highly abnormal. Returning to Bristol, my GP ordered the same series of tests once again with similar results. As expected, the results of the test confused the situation further. My GP suggested taking a powder substitute for the pancreatic enzymes and staying on a low-gluten diet. I followed his directions religiously, which improved my symptoms over the next 4 to 6 weeks. Unfortunately, about eight weeks later I had another episode, albeit fairly mild. This was then followed by another one four weeks later.
A gastrocopy to look inside my stomach
When I returned to Bristol, I spoke again to MS who had done my colonoscopies. He then organised a gastroscopy to get a biopsy of the mucosa (lining) of my small intestine to test it under the microscope for coeliac disease. Gastroscopy involves a flexible telescopic tube, perhaps 10 to 12 mm in diameter, being pushed down your throat through the stomach and into the first part of the duodenum. This was the part of the upper bowel most affected by coeliac disease. Little samples of tissues could then be taken to be analysed under the microscope.
For this procedure I had the choice of sedation to knock me out or local anaesthetic – I chose local anaesthetic. The consultant during my procedure was a physician and not a surgeon. Although I’m sure she was experienced, she lacked confidence, some dexterity and finesse in her technique. At the critical moment when she was advancing the telescope through my throat, she needed to pause while I swallowed. Unfortunately, with my throat numb and anaesthetised by a spray, this proved difficult to initiate. Also, she did not hesitate or wait and advanced the tube through my epiglottis and into my oesophagus and stomach. Despite the anaesthetic, this was still quite uncomfortable.
I suspect that by doing this, she bruised my epiglottis. Consequently, I had a sore throat and discomfort when swallowing for the next week. Unless you’re very brave and stoic, I would suggest sedation rather than local anaesthetic for a gastroscopy examination.
The tests showed that it was not coeliac disease but pancreatic insufficiency!
A couple of weeks later, the biopsy results came back suggesting that I did not have coeliac disease. A series of rapid events followed the visit as MS organised a CT scan of my pancreas, which was entirely normal. MS then referred
to the liver physician in Bristol for analysis of my abnormal pancreas tests. Unfortunately, that particular physician appeared quite disorganised. Eventually, I got an appointment for consultation around 10 weeks later. During the consultation, the physician listened to my history and scratched his head. He couldn’t explain the abnormal pancreas tests.
On balance, using his experience, he suggested that despite the very abnormal tests, he did not think there was anything wrong with my pancreas. He thought that perhaps the test results were spurious. A spurious test is one off with abnormal test results for no particular reason. He suggested stopping the supplemental pancreatic enzyme powder. I did this and as he had suggested, I found it made no difference to my bowels. This further confused the picture, so I was then sent to see a gastroenterologist.
