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jellycats

231d

hi, ive struggled with severe chronic constipation my entire life. so far all of my doctors have not been able to help. i recently learned that EDS has constipation as a symptom and i was wondering if that was even worth looking into? i do have hyperextending joints that ache alot but so far ive been able to deal with it myself and im nervous to bring it up to a dr incase they think its just cause of my weight (im slightly overweight). i also have been trying to pursue a hirschsprungs diagnosis since that seems like the most likely condition, but its been very difficult to get doctors to run any tests and most just want to write it off as anxiety or ibs which if it is its so so severe and ive never heard of ibs being from birth. one of my drs even said i probably have ibs since birth because my birth was inherently traumatic (i was a micro preemie) which just sounds like bs to me. if anyone has any tips or advice or anything id love to listen!

Top reply
    • Samm1997

      22d

      @Beetlejuul me too 😂 finally found out it's hirschsprung's

    • Samm1997

      22d

      Push for a test! Go to the emergency room and make up an excuse. I had to do that and it worked! I actually do have hirschsprung's disease though. I have an ileostomy now for 3 months then I get my hirschsprung's solved

    • Beetlejuul

      103d

      I never really thought of it as constipation as a child but I would regularly take 20-30 min in the bathroom cuz everything would move so slow and that was with pushing really hard too. It became running joke in my family that often embarrassed me

      • Samm1997

        22d

        @Beetlejuul me too 😂 finally found out it's hirschsprung's

    • 55isMe

      164d

      I dont know about the rest. But more and more docs are prescribing Miralax for chronic constipation. I have a 'redundent' colon which contributes to my chronic constipation. So, now that i have issues from my constipation (diverticulitis), my doc asked me to try Miralax daily. Because i can be very sensitive to meds, i started with a tiny dose. It took almost half a year to get to a really good balance (just a full teaspoon). Its been helping and no side effects.

      • jellycats

        149d

        @55isMe yeah. i took merilax for the first 17 years of my life and at the end of that i had to take 8 capfuls a day and that still barely worked. i now have to take merilax (like 4-5 capfuls a day) ontop of taking all my daily laxatives too.

    • OodlesOfNoodles

      167d

      You have every right to question any doctors opinions. They act like they are always right, but medical malpractice is the leading cause of death in the US. So don't let them make you doubt your own instincts. A trick i heard for doctors refusing to run tests, just say "can you put it on the record that you won't do this test?" And suddenly they are on board cuz they don't want to look bad. If that doesn't work, be assertive. They are YOUR doctor, if you want a certain test, you can get it. Just because their opinion says otherwise, doesn't negate your free will for your own health choices. Also your weight might actually be a symptom of the real problem. Inflammation in the body can definitely make you gain weight and make you look puffy. Once you get the right diagnosis/treatment, you should lose that extra fluid. Definitely get those tests!!!!!

    • OodlesOfNoodles

      167d

      I'm so sorry you are going through all that😭 I really hope you find answers soon! I would find a rheumatologist. They can do special testing like ANA and Rheumatoid factor. That can at least give you some idea of what's going on, like inflation wise and stuff. I admit I've never had constipation that bad, and you might have already been told before, but magnesium and fiber really does wonders for me. Maybe you're just not getting enough? Don't just take small doses, do like 200mg magnesium glycinate and I like to have mini wheat cereal bc it's basically all fiber. Maybe if you keep up with those things it might give at least some relief?

      • jellycats

        167d

        @OodlesOfNoodles i already take the max amount of magnesium i can take & i cant take extra fiber it makes my constipation so so much worse

        • OodlesOfNoodles

          167d

          @jellycats yeah I was going to say you definitely have heard that advice before 😅 I wish they would figure out what's going on😭 the constipation is definitely a result of something else. It has to if those things aren't working. I hope you figure it out soon!

    • mintchipcraze

      167d

      hi jelly :) as you know i have chronic constipation as well and don't know the cause of it. i have talked to a person i met in class about these issues and she had chronic constipation as well but because of EDS, her symptoms weren't completely the same as mine and it seemed when she just took some merilax she was ok and didn't have chronic abdominal pain like i do, she has chronic pain from EDS but not specifically abdominal pain. we are twins so ik our stuff is pretty similar so if you want to look into it maybe it's that but if it is, i don't think it's JUST that, sadly.

☝ 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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One person shared that they were initially diagnosed with IBS and Chronic Migraine before receiving a hEDS (Hypermobile Ehlers-Danlos Syndrome) diagnosis from a geneticist. This process took about 8 years and numerous doctors. Another individual mentioned having colonic dysmotility in addition to gastroparesis, with symptoms including significant constipation, bloating, and abdominal pain. It's important to continue advocating for yourself and seeking medical advice if you believe your symptoms align with a specific condition.

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