I’ve had a very nice meeting with Dr. Cusnir this week and told him about my weird abdominal pains. Turns out the symptoms I was describing point to a very common side effect of abdominal surgery called Abdominal Adhesions. These are very fine strands of tissue that stick together where usually it wouldn’t, a bit like if you put chewing gum between two pages of a book. Try to separate them and you can imagine what adhesions look like.
They often form in between the free flowing part of the small intestine, which then tends to get mildly (or severely) obstructed, which would tally up with my experiences of light sweat, nausea and severe pain. Sadly I’ve had this one too many times to ignore, and I have reason to believe that I’ll need further surgery to get rid of these adhesions.
However, therein lies the problem: surgery is really the only option to cut these buggers up and remove the problem, but it also then creates an “opportunity” for future adhesions. Hence doctors don’t recommend surgery as the first and only option. Dr. Cusnir said that if I can manage it somehow, it might be wise to avoid surgery. I’ve been doing just that over the last few weeks: I’ve reduced my portion sizes to go super easy on my digestive tract, I’ve eaten a lot less, and it resulted in me being several pounds lighter (195lb was the lowest I’ve weighed, which is a good 5-8lb lighter than my usual weight). While weight loss sounds great, it’s not a sustainable solution to my problem.
This evening after a bit of cereal and a slice of bread, I’ve had a severe episode as a result and thought I’ll make a note of what foods seem to be working for me at the moment:
soft stuff like mashed potatoes and fish
cereal (if it’s a small portion of around 1/2 cup)
Dave’s Killer Bagels (half)
honey, chocolate spread and butter
scrambled egg, fries
What doesn’t work so well:
anything with large amounts of fibre (like sprouted bread)
cheese and yoghurt (I guess its bacteria may cause gas that gets trapped)
I’ve also had nasty experiences with my beloved Vega protein shakes with coconut milk, but only once when I had it with a yoghurt. I’ll give it another shot tomorrow and see if it might work for me. My immediate problem is that I can’t continue to east as little as I do forever.
The Action Plan
On the 6th of March, I have a CT scan scheduled. It probably won’t show any signs of the adhesions due to their thin size, but it may give an indication of potential obstructions. I’m due a colonoscopy and will make an appointment with my favourite colon surgeon Dr. Szomstein to discuss after the scan. It’ll be great to see him again, and I’m sure he has some advice on how to deal with this.
Until then, I’ll stick to my “small portions” and “mainly fluids” diet with the intention of avoiding further pain. Something else that’s worked wonders are the Queasy Drops by Three Lollies. We found out about them during the chemo years, and they are fantastic to combat any feelings of nausea. Well remembered, Miss Julia!
While I hadn’t quite expected it, there may be some follow up surgery on the cards for me this year. I’ll keep you posted!
I keep forgetting to put this down, probably because I’m always glad when an episode is over, but for the last few months, I’ve been suffering from bouts of abdominal pains. They don’t often seem related to food intake, even though my digestive system is somehow involved.
The earliest episode I can remember dates back to when I was kept in Baptist hospital under observation, around December 2016. My whole system was screwed up back then, and I wasn’t eating solid food, but one evening it came out of nowhere and didn’t want to end. It was so strong only a dose of morphine stopped the pain. I was extremely grateful that it did, and I haven’t had anything like it until perhaps a year ago.
I didn’t make a note of the date, but I remember it was during the night. We had eaten may hours before, and sometime around 3am I woke up and had this dull pain that stretched from the waist up to just above my belly button. It doesn’t quite extend to the sides and seems to be focused in the centre. It’s that type of pain that has kept coming back more frequently, and not just at night.
Today is a great example, which is why I thought I’ll make some more detailed notes. I woke up and had a protein shake with coconut milk at around 9am, like I often do, and have never had any issues afterwards. Around noon, the episode started and got gradually worse over the next 20 minutes. We had a walk to see if it would help, but moving around only aggravates whatever this is. Around an hour and a bit later the pain began to fade and took another hour to dissipate completely. I had no other digestive issues, like heart burn or erratic bowel movements, quote the opposite.
Around 8pm we had dinner, which consisted of a tomato salad with tuna and a bowl of chips (i.e. oven fries), something I’ve had countless times before without issues. Like clockwork, an hour or so later the same abdominal pain started happening, not quite as strong as in the morning, but definitely enough to make me think of having some ibuprofen (which I didn’t take in the end).
It feels like I have some food trapped somewhere and it can’t get through, much like it felt before my sigmoid colon tumour was removed. That was much lower down than this, and I could literally feel the place of congestion, unlike here, where I can’t locate anything like an obstruction. While today it appears to be directly related to food intake, it hasn’t seem like that on many previous and especially nightly occasions. Those episodes appear many hours after we’ve eaten, so this thing can come at any time and can be kicked off pretty much unannounced.
The last episode before today was last week, and as a result I abstained from any food the next day until the evening. It worked well and didn’t come back, until today. I’ll start making posts if and when it happens again to keep an eye on the frequency, which has definitely increased over the last year. As a guess, these things seem to happen about once a month, and have now increased to once every two weeks, perhaps more.
Sometimes, like today on both occasions, the phenomenon is accompanied by mild sweat on my forehead.
The week before my 50th birthday I had some weird tooth issues I thought I’d make a note about. It’s great having a place to do this on actually, as it build a timeline of how things are going with my body. It started after I ate some of those small carrots as a snack in the evening while binge watching Line of Duty with Julia (great series that).
The day after I’ve noticed severe soreness on my bottom right molar, as if something had got stuck between tooth and gum, but different. I made sure to clean all gaps as I usually do and didn’t find any evidence of festering carrot pieces. A day later the pain got worse, enough for me to consider Aleve to get through the day. What made it worse was that the top right molar was also hurting a bit, something that can’t be explained with the carrot piece theory.
I now know that something underneath my bottom molar must have happened that seems to have pushed the tooth up slightly, perhaps as much as 1mm although it was probably less than that. Julia tells me that I have a tendency to grind my teeth overnight, something I wasn’t aware of until now, but it would explain why the elevated molar from the bottom would have affected the one above it.
This has been going on for almost a week, and finally the bottom molar has come down again into its previous position, or at least almost. I can bite down again without the top molar complaining (well almost at least), and there’s no more sensitivity around the bottom gums.
However, I’ve now noticed that the outside of the bottom molar doesn’t seem to be covered in gums anymore: it looks severely receded, much further than on the other side of my mouth. As a result, the exposed bit of the molar is now extremely sensitive to temperature change. Cold tap water is agonizing, as is a draft of air if I inhale the wrong way through my mouth.
I’m hoping that this will just go away over time, it’s only been a week (again which is why it’s so important to make these notes and have time stamps of incidents). Right now I’m using Colgate toothpaste for sensitive teeth and will keep an eye on the situation. Julia suggested rinsing with warm salt water. I’ll report back should the situation not improve.
I really need to book in that colonoscopy and an appointment with Dr. Cusnir afterwards. Dang! The year is nearly half over, where does the time go?
On a positive note, I’m really busy with projects and determined to finish those up this week. I’m very aware of my limited time on this planet, and I’m trying my best to put as much as I can out there while I can, while also making sure that I fare well as I do it. Things take much longer than I’d like them to. But I’m trying hard to fit them all in.
I forgot to mention some weird abdominal pain I’ve had last week, I’ve had this before so it felt vaguely familiar. It must have been last week, perhaps Wednesday or so.
I started to feel a numb pain from below my rib cage to about just under my belly button. I couldn’t quite make sense of it as it didn’t seem to be related to what I’ve eaten, nor did it feel like there was something stuck in my gut somewhere. I may have been nothing, or perhaps I just hadn’t drank enough. All I can tell you is that it felt seriously uncomfortable.
I’m bringing this up because I’ve had the same pain a few months ago and didn’t make a note, yet it felt very familiar to the pain I had once in hospital: same area of my body, but back then it was so severe that only a shot of morphine could stop it. It’s not been back since, just these two times.
Like last time, this pain took a while to shift and didn’t react to Aspirin. It started during the afternoon and became stronger towards the evening, stayed with me throughout the night and into the next day. It was slightly better in the morning and eventually went away. I did find that some positions while lying in bed were slightly more tolerable than others.
The next day I had a headache, which may or may not have been related to caffeine withdrawal. Two aspirin made it slightly better. I don’t recall anything else about the abdominal issues, just wanted to make a note here in case in happens again, and at what intervals.
Here’s a little presentation I have at the 3rd Annual Oncology Symposium. It’s been postponed a few times and finally happened on the 2nd of October at Margaritaville in Hollywood. It was fun to be back and talk about my case, and see so many familiar faces again. The event was much bigger than in previous years, with 45 exhibitors and over 100 attendees. Success!
The feedback I got from the audience as well as YouTube comments was wonderful and heartwarming, and I can’t quite believe it has been 4 years almost to the day that I’ve been declared officially cancer free. I love being able to commemorate the occasion in style.
Julia and I helped out with the AV tech on the day, making sure the presenters had access to their slides and all other materials we needed for the day. Like last year, I brought along my streaming PC and transmitted the event live on YouTube. We had a viewer from France who was into T-Cell research and he enjoyed the many topics that were discussed. You can watch the whole stream here, it includes time-codes for all speaker segments. I’ve also split out all presentations and uploaded them to our dedicated Oncology Symposium channel, alongside last year’s presentations.