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So I have been seeing GI after GI for some time now. With overwhelming nausea, severe bloating, and discomfort using the bathroom. FINALLY today after talking with my dr about the ulcers in my mouth, as well as fissures in my large intestine, he asked if anyone had ever linked my HSP to GI issues. And that was something I'd never heard of! Ive always worried about my kidneys, because that was always my pediatricians biggest concern when the disease was "active" and for the years after. I've sort of always thought about my HSP as being "gone", as I haven't had the welts or arthritis in 14 years. But in the last 14 years many studies have been done, and have shown up to 75% of HSP patients have GI involvement. Anyone else had a similar experience??
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brittany08747 rosieposie94
Posted
Hi! Sorry you're going through this. My fiver year old daughter was diagnosed with hsp in early March. Nearly every part of her body swelled, including her head and spine. About two weeks after her diagnosis she started vomiting blood. We rushed her in to our children's hospital and found she had intususseption, which they say was caused by her HSP. She had 28 cm of her small intestine removed. Not even 48 hours after that she had a second emergency surgery for a bowel obstruction. It was a total nightmare! So, to make a long story short, the doctors told us that HSP can cause intestinal problems. I'll pray yours goes away soon! How long did you have to have your urine tested to rule out kidney problems? Right now we have to go every week for 6 months.
rosieposie94 brittany08747
Posted
Brittany,
So so sorry to hear about your daughter. I know it was hell for my mom to have to go through HSP with me, especially since I was in a wheelchair due to all the arthritis. The adjustment of the intestinal surgery would be difficult for anyone, let alone a 5 year old. I'll be thinking of you and her.
My original disease was horrific with the bloody urine. It was basically 95% blood and protein; 5% urine (first 4 months). They were convinced my kidneys would shut down and I'd need dialysis. After about 7 months total the "main" infection lessened. I had to be checked every 3 months until 10, and then every 6 months till 11, every year until 13. And now they don't screen me for it anymore unless they suspect a UTI. They estimate I lost about 30% of function. They don't know if it's all in one kidney, 15/15 between the 2 or some other fraction. Im very glad at that because I know it could have been much worse.
It will probably be the same sort of regimen for her. But on the bright side, there's been 14 years of science and studies done on HSP since I had my bout, so they are better read on what to do, and how best to treat her.
Like I said, they never mentioned GI involvement to me (granted I was 8) or my mom. We've always watched my kidneys, and I drink so much water I could be an advert for the ocean. But for my DR to say that to me a lightbulb went off and said "duh". Every symptom I have all traces back to a vascular origin.
Again, I am so sorry for how HSP affected your daughter. I hope she feels better soon, and I hope you can get some peace of mind.
brittany08747 rosieposie94
Posted