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
bullion
cereal (if it’s a small portion of around 1/2 cup)
soup
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)
vegetable-heavy dishes
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!
In this episode I’m showing you my CT Scan I had at Pinnacle Imaging in June 2019 (so that’s two months before I’m making this video). I don’t know much about what’s in those images, but I’ll try my best to talk you through the interface and what those grey blobs (might) mean. Bottom line is: I’m healthy – that’s all that counts 🙂
I’ve recorded the above video in November 2017, shortly after I was discharged from my penultimate surgery, and just after I got the “all clear”. It’s probably a little long as a promotional and snappy opener, but it tells my whole story in some detail.
July 2015
Started exhibiting symptoms of painful urination and frequent diarrhoea. Ultrasound revealed a “mass” in my abdomen.
AÂ CT Scan revealed an inflammation in the area that required treatment with strong antibiotics, administered via PICC line (Zosyn, Merrem and Invanz)
January 2016
Colonoscopy revealed a blockage at 15cm, mostly likely cancerous
February 2016
At Baptist Hospital, open surgery revealed a 20cm tumour, prompting a complete sigmoid colon resection and partial resection of several peripheral parts. Diagnosis was stage 3 colon cancer. Fistulas to bladder, appendix and caecum were also removed.
Chemotherapy was scheduled for April. I was given a temporary colostomy.
One week after discharge, a tennis ball sized tumour was discovered in my bladder and resected during a cystoscopy. As a result, chemotherapy was postponed by one month.
April 2016
Genetic Testing revealed that my cancer was caused by Lynch Syndrome. In addition, it was found to be K-RAZ positive and MSH-2 high. Bummer!
May 2016
FOLFOX chemotherapy was administered, but didn’t work.
After 8 infusions, the tumour had regrown to another 12cm monster while I was on Oxaliplatin and 5FU. The tumour was resected again on the inside of the bladder, however it was still present on the outside of the bladder.
The only recommended course of action was a radical cystectomy. But because Baptist Hospital could not perform this procedure at the time, we were refused further treatment and advised to go “elsewhere”.
We found Mount Sinai Hospital, who were happy to try an alternative approach, deeming a cystectomy as too radical.
July 2016
At Mount Sinai, radiation therapy in conjunction with FOLFIRI chemotherapy shrank the tumour from 12cm to 6cm.
August 2016
A fistula developed between my disconnected rectum and my bladder. As a result, I was now urinating from my rectum. Because of the fistula, we stopped the radiation therapy, but kept the chemotherapy going.
After a total of 8 FOLFIRI treatments, the tumour didn’t shrink any further despite increasing side effects.
December 2016
Stopped FOLFIRI in preparation for possible surgery
January 2017
The tumour started growing again instantly and a second fistula developed from my small intestine to the bladder, leading to a heavy abdominal infection.
To avoid sepsis, I was put on a cyclic TPN. At the time, surgery was deemed impossible.
My life was now a painful nightmare: I couldn’t walk anymore without the help of a stick and/or a wheelchair, had to urinate under extreme pain every 10-30 minutes and couldn’t sleep as a result. A full pelvic exenteration was on the cards, but due to my severely weakened condition couldn’t be performed.
Hence, my oncologist chose to give me a somewhat experimental treatment called immunotherapy.
February 2017
Started treatment with KEYTRUDA. No detectable side effects.
March 2017
Started feeling slightly better every day: less pain walking and less pain during urination. Started sleeping again. Felt fit enough to walk again.
April 2017
Felt fit enough to start cycling again, including rides to and from our home to Mount Sinai Hospital (about 8 miles in total).
July 2017
Spontaneous weight gain of 2-3lb per week, even though I was still on TPN and therefore controlled amount of calories. Suspected side effect was inflamed and probably fried thyroid. Otherwise I felt better than ever.
October 2017
Surgery was scheduled to reverse my colostomy and remove any residual tumour tissue, including a possible cystectomy depending on what an open procedure would reveal. Previous cystectomy in January showed plenty of necrotic bladder tissue, so the surgery required both a colon surgeon and a skilled urologist
The procedure was performed at Baptist Hospital and – to everyone’s huge surprise – revealed NO RESIDUAL TUMOUR TISSUE.
Fistulas were removed with minimal bladder resection. My colostomy was closed and a temporary ileostomy was placed. The TPN was stopped, and after 8 months I started eating again.
December 2017
In a second surgery, the remaining ileostomy was closed. Plumbing was now fully restored.
