Hi Duck,
I say keep looking for help. I say this because I had severe localized abdominal pain, repeated partial small bowel obstructions, and utter misery. I went to see the surgeon who was following me, and he didn’t even bother to examine me—he told me to ‘live with it’. I wasted eight months suffering after that, depressed and in absolute misery, and finally decided to see someone else. New GI doc diagnosed me with pouchitis and said he could fix me in a month. 6 months of abx later, no dice, and he wanted to start biologics. I said no—history of infection after Jpouch surgery, and I thought I might have an abscess or something. Had to beg for an MRI and got told off for ‘directing my own care’. But he had to eat his words, and I didn’t die from his stupidity because I protected myself—MRI showed chronic infection.
At laparoscopy, I was found to have a massive adhesion from a leaking j-pouch (leaked from the upper staple line 4.5 years after index surgery, probably due to allergy) and had to have a portion of bowel resected. My surgeon (a different one—the fourth one I consulted) said it was like concrete.
It was a hard recovery, but I no longer get bowel obstructions or abdominal pain. I can eat fiber, soluble or insoluble, and I no longer have to suffer severe pain for twelve hours while my body is trying to decide which way to send the stuck food.
Keep looking. If you can have a consultation in the US, try Dr. Remzi at NYU. He doesn’t look at the imaging, which in my case was a limitation, but in your case, if nothing is showing up, he might still offer you an exploratory laparoscopy. I mean, really, compared to your symptoms, having a laparoscopic surgery to see what’s going on is not bad. I cannot understand why your surgeons won’t consider trying that; it could really help your quality of life, and it doesn’t cause significant adhesions compared to a laparotomy (open surgery). A skilled surgeon can at least look around with a scope, and it’s a ton more useful than imaging, especially when the imaging isn’t sensitive enough to pick up the site of your problem.
If you can get a referral to a major academic hospital in your province (assuming that’s not where you go already), you can possibly get someone to do this. I’ve learned not to go to local docs/smaller hospitals for complex stuff—they don’t know how to handle it, and they hide their ignorance by telling you nothing can be done, instead of saying ‘I don’t know what this is, but it might be worth seeing so-and-so (regional expert) to make sure there isn’t something going on...’ Egos are so fragile sometimes, especially in surgeons, but I have found it to be mostly a disease of males. My women surgeons were remarkably forthcoming about the limits of their own experience and were happy to refer me to the expert.
I would be very careful about the capsule—it is not a sensible thing to do when you have intermittent obstructions. It’s frankly a huge risk for a disaster. I hope the doctors there would be sensible enough not to try that. A laparoscopy, though more invasive, is the most direct way to assess the problem when imaging fails.
Or else blend all your food and/or avoid insoluble fiber. Soluble fiber is easier to pass even with a stricture or adhesion. Eat soft, tender meat and chew it well; eat only baby greens (no stems) and non-seedy fruits and well cooked vegetables, all chewed completely; drink enough water; try blending smoothies if you want to eat anything that doesn’t fit this.
Of course, none of this is easy when you have an infant to look after, but it doesn’t help the baby when you’re incapacitated, either... I don’t miss that year and a half of abject misery and having to chew each bite 100 times. That didn’t fit my busy life. So, I restricted my diet to limit the number of episodes, and that helped, but it was a temporizing measure until I could find someone smart and brave enough to investigate properly and treat me.
I wish you the best of luck.
