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← Return to Life long constipation
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Oh my… it sounds like you are a warrior and have been so brave trying to get yourself well. The decision to have surgery must be so difficult given what’s happened to you after your previous surgery. I feel for you. I am close to your age and this is not how I planned to spend my retirement after working my whole life. There is a virtual support group once I attend here in MA but it’s open to anyone with a motility disorder. It’s small and couple of members also have gastroparesis. If you want information I can forward it to you. Thank you for sharing your story with me. I am hoping someone finds an answer for us. I am also in the Boston area.
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Hi, yes I would be interested,thank you. I just feel that my circumstances are very different and I wish I could find someone who had this trouble after long surgery.
Thank you
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Hi, I moved to Georgia about a year and a half ago. The Mayo thing sounds fine which my doctors will set up, not myself. I tried everything in Boston. I had 3 cages put in my cervical spine by a wonderful neurosurgeon. His team was fantastic. I had folks who I knew at Beth Israel and he was highly recommended. I even spoke to his patients. Surgery was long and I’ll never know but my bowels didn’t wake up.
I kept seeing him for months and he worked with Brighams Gastro dept as well.
I went through every test possible, tried everything in med even combinations and nothing. At the beginning I would actually go to get cleaned out at the hospital.
I’ve learned a lot in 5 years. My situation is very rare and things like diet don’t help much but I have a dietitian and a women who cooks one meal a day for me. I eat no sugar or dairy and I eat a very balanced diet. I also have hypothyroidism so I must have that in check all the time.
All the foods that get recommended never help. My fiber limit is not high every day because I can’t digest it.
The only veggie I can eat is carrots. I measure and weigh everything . It’s not as simple as many think. If it was due to anesthesia most have no idea how to help me. It’s so rare if that’s what did it.
My thinking is I’ve never been checked neurologically. Could it be nerve related. It’s been a long 5 years and I really thought it would wake up but nothing.
My Gastro said if Mayo can’t find anything other than remove it , it’s back to me deciding. This is Emory in Atlanta sending me to Mayo. I just know things are not working and I don’t want some emergency to happen where I’ll end up locally for this huge surgery. I wouldn’t make the hour drive to Atlanta I don’t think.