comments:
You can get sounding kits. That start at 3mm and gradually increases in size https://a.co/d/07bq0953
I, too, have stricturing, though I guess you can say I'm lucky(?) in that all of mine is colorectal and therefore "accessible" in a sense. Things that have helped me: - Dilators. Definitely the most unpleasant things on the planet, and I dread every time I actually need to use them, but if things are bad enough I will use dilators to open things up. When things were really bad it was a weekly or even daily thing. These days, maybe once every 6 months. Again, this only works because mine is colorectal. I know strictures can occur anywhere along the digestive tract, so YMMV. - Diet. I know how it sounds, and I've gotten more than my fair share of dietary advice from friends and family that went ignored across my whole 20's. I've also heard mixed things on here about specific foods, so I doubt there's a one size fits all solution for you, but for me my stricturing actually went down (or, at least, hasn't felt as obstructive) since I switched to a diet higher in fiber. For me this means fruit/vegetable smoothies every morning (2 celery sticks in each one), an apple at least once a day, and snacking on carrots or broccoli in the evening. I also started to really notice my trigger foods - in particular, I've noticed that potato chips are HORRIBLE for my Crohn's, though don't know if this is because of the ingredients in them, or if this is because eating them makes me less hungry for the actual high-fiber foods and I'm more likely to skip real meals. I was in a similar position to you. I was told that surgery would be inevitable, and because my stricturing is colorectal there is no possibility of resection - it would just be a permanent ostomy bag from that point on. My GI would remind me of this at every 6 month appointment over the span of about 4 years, after each annual colonoscopy would reveal the stricturing hasn't improved. However, once I added these things to my diet about two years ago I saw some pretty significant improvement, and during the last colonoscopy my GI has finally told me that I've experienced some recession of my stricturing and we can shelve the ostomy talk - not permanently, necessarily, but for now. I DO want to add that surgery isn't a death sentence. Back when it really seemed unavoidable I made a point to engage with a lot of ostomy materials online, including Instagram accounts, Reddit posts, and Youtube videos. I saw hikers, climbers and joggers who have navigated life with a bag. Fashionable people, or people who liked to swim or go to the beach or play sports. It really normalized something for me that, only months prior, felt like an enormous stigma. When my Crohn's was at its worst, having the surgery started to actually feel like a form of freedom for me, because all of the things that I feared from the surgery - embarrassment, low self-esteem, inability to do certain physical activities - were already things I was experiencing in the current state of my disease. If I didn't go into a remission that cleared most of my pain symptoms I was ready to embrace the bag.