Abdominal Pain

[sue7211]

Happy New Year everyone! My 17yo son has GPA. I've written about him before and have appreciated your kind and wise comments and support. Most of his maladies are under control for now but there is one that on one seems to be able to explain or diagnose. He gets internal stabbing pain/cramping in the area below his belly button. It lasts for several hours and is better sitting or lying down and worse by standing or walking. Sometimes it comes a day or a week later but often it is several weeks or months in between attacks. He had an upper and lower endoscopy a couple months ago that was negative except for a very slight amount of inflammation in his upper small intestine. The doctor followed up with blood tests for Celiac which were negative.

Thanks so much for your thought!

Sue

[Psyborg]

I honestly get some pain similar to this, but it's generally gas related. Kind of gross I know, but it's excruciating. I've never been able to determine what actually kicks it off, but i suspect its related to the medications we have that cause issues with our normal intestinal functions.

[Sangye]

Below the belly button makes me think bladder. Was he on ctx?

[Psyborg]

Good Point on the CTX...I didn't even think of that.

[drz]

I had horrible cramps and frequent pain in bladder and infections while on CTX. I think other meds I take can also cause some stomach discomfort. Have you had a pharmacist review his meds to see what drug might be causing it?

[sue7211]

Finally today a doctor was able to see him while he was having the pain and decided it was exactly where the appendix is. So he was sent to get an ultrasound and when that was negative (the couldn't find the appendix) then the did a CAT scan. It was also negative. The was a small amount of free fluid (not to worry!), the bladder was visualized but not focused on. Constipation was ruled out. So far still no explanation for this pain. I did tell the radiologist that he had been on cytoxan so that he would look at the bladder. Blood labs should be back tomorrow. Although this pain doesn't come on very often it does seem to last longer each time. It has lasted at least 24 hours now although it is not nearly as severe as it was yesterday. We'll see what tomorrow brings.

Thanks for your thoughts. Sue

[Sangye]

Sue, they should consider doing a cytoscopy (scope of the bladder). I've seen a number of people whose bladder inflammation or damage has only been found with scoping-- ie, not on CT.

[drz]

Sue, they should consider doing a cytoscopy (scope of the bladder). I've seen a number of people whose bladder inflammation or damage has only been found with scoping-- ie, not on CT.

Some times CTX can cause the inside of the bladder to look like raw hamburger which I think would be rather painful condition. My urologists told me I was lucky that the inside of my bladder looked OK despite 8 months of CTX. It is an easy and rather painless procedure that can help rule out another possible source of pain in abdomen area.

[sue7211]

Thanks for your thoughts about the abdominal pain. It is still there when he presses but otherwise it's gone. The did find a large amount of protein in his urine. Unfortunately the labs were not done at our regular place so we have to repeat them and wait for more results as the hospital where he had them done has had inconsistent results in the past. I appreciate the ideas about the bladder and cytoxan. He has been off of it for 15 months. Could his bladder still be irritated but only intermittently or with occasional "flare ups"?

Sue

[Sangye]

I have seen posts by others who have been off ctx for a long time and still had bladder problems. Ctx can do damage acutely or set us up for trouble down the road.