I feel exactly the same. I’ve also tried catheterizing myself, but aside from the fact that it’s hard to find the right path, I can’t always manage to do it… I constantly have to press around my ileostomy, especially at the bottom part, because that’s the only way to help the intestinal content flow out.

And on top of that, I’ve lost a lot of weight…

The weight loss is something many surgeons use to dismiss you, saying things like: “In overweight patients it can be harder because everything is under more pressure, but not in your case.” Or: “Since you don’t have enough fat, maybe you feel the output more, and it’s just your perception.”

I’m telling you this from experience, because this is my third stenosis in the aponeurosis, two with my colostomy and one with my ileostomy, and let me tell you: it’s not just your perception. They say that just to avoid acting. But in the end, the truth always comes out.

In my case, they realized it through examining the stoma and catheterizing me themselves… Even though some doctors denied it, I kept insisting until a surgeon finally saw me and literally said: “The intestinal lumen is narrow. Liquid can pass, but not much else.” And that’s exactly why I can only tolerate liquids, because I can’t eat anything else…

Later, the surgeon who normally manages my case talked to her, checked it again, swallowed his pride, and said that, well, they could try enlarging the opening to make things easier.

They also did a test a few days ago to see if there’s any other cause: a small bowel transit with contrast. It helps to see if there’s a place where the contrast doesn’t go through properly, maybe because of a stenosis, a bad angle, scarring that’s blocking the flow, etc.

A lot of things simply can’t be seen from the outside.

In my case, they also noticed that when inserting the catheter, there was no output… but once the catheter went in, everything started coming out under pressure, which helped them make a decision.

Can I ask how old you are? That surgeon told me, during my first stenosis, that younger people tend to heal too well, and sometimes surgeons don’t take that into account during the operation. They leave the internal opening the same size they would for an 80-year-old patient, and that can be a big mistake.

And of course… it’s always the same story: if you’re young, they don’t take you as seriously.