Living with Hirschsprung's Disease: Seeking Advice

Hey there...this is a shot in the dark.. I was born with HD but went undiagnosed until I was 2 years old, at which point I underwent an emergency resection with colostomy. (The colostomy was subsequently reversed some time later.) I'm just curious if any other HD survivors have experienced gut issues all their life as I have. My bowel movements have never been "normal", and I go through boughts of constipation, and then the next week I may be running to the bathroom 10 times a day. At the age of 17, I was diagnosed with megacolon (of unknown origin), and was given an ileostomy in order to allow my large colon to rest and perhaps heal iself (so said the colorectal surgeon). After a little more than a year with the ileostomy and much testing, it was determined that my colon was functional so the ostomy was reversed. I went symptom-free for about 5 years, but I now continue to have gut issues almost daily. I'm now 36 years old and my symptoms are very similar to IBS, however, no one has ever formally diagnosed me with that. Everything I've read about HD says that once treated, patients can go on to live normal lives, but that has not been my experience. I just wonder if any of you out there have had similar issues.