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AmyK

804d

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.

    • FartPartyCentral

      771d

      I, too, was born with HD. I attended a HD summit in 2015 with specialists running the seminar. (They were mainly from Massachusetts Medical & Cleveland Clinic.) Drs said HD kids can live “normal” lives for the most part. However, since we’re 1st Generation survivors, they’re finding out that once we get older “something changes”. It’s different for everyone. MY “something” happened in 2008 & life has never been the same. I wish you strength to persevere & the good fortune to find answers to help each one of us find a happy medium to reach a NEW NORMAL, enough at least to return to the living. You’ll all be in my thoughts. Reach out with any questions. I’ll answer to the best of my ability. I can say two things that have helped me: My heart rate escalated to a scary level. Turns out that I’ve developed an autoimmune condition affecting my thyroid (Hashimoto’s). I recommend seeing an Endocrinologist. They definitely help!! Also, the supplement “Colostrum” absolutely helps with diarrhea!!!!! Soft foods, MILD fiber, and hydrate (and as much as you can…) to keep things moving along. One more thing: Reach out to those specialists. Maybe they can offer professional services. I hope these suggestions help. 🙏

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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