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Posts (5)

Tue, Jan 7 9:47pm · Adhesions affecting digestion and causing pain in Digestive Health

Thanks for the info. I'm glad you are doing so much better! I do the belly massages at least twice daily and that really helps. I will definitely try the Boost Breeze and clear broths to see what that can do for me. What kind of surgeon removed your adhesions? I'm trying to figure out who to seek out since so far none of my current Mayo doctors seem to be experts on adhesions and none have had suggestions on who to see other than pelvic therapists and pain doctors; both of which couldn't help with that issue. Thanks!

Tue, Jan 7 2:35pm · Adhesions affecting digestion and causing pain in Digestive Health

Thank you! Yes- in a major way. I believe that the adhesions have caused my intestines to stick together as well as involving some nerves. Due to being unable to walk or stand much for such a long time, my psoas muscle has now tightened so it's more painful to stand and walk. Anytime I try to gently stretch the psoas with my yoga therapist I am in terrible pain that makes my other issues worse.

I am on a gastroparesis diet that my gastro dr. at Mayo had me try.(the low fodmap diet- and lots of other diets- that a local doctor suggested was too restrictive especially since I generally don't have a big appetite) He also suggested I take FD Gard and IB Gard (peppermint tea was too harsh for me) which has helped some. My local therapist taught me how to do a belly massage which I do a few times each day. I really has helped with breaking up the gas bubbles and moving things along. Otherwise things back up to a dangerous level. I had originally had weight loss and was too thin, but not a dangerous weight; the pain doctors at Mayo have had me on cymbalta for a year now and I am having steady weight gain. It was fine at first, but now it is continuing to the point where I'm considering searching for an alternative medication.

Mon, Jan 6 8:29pm · Adhesions affecting digestion and causing pain in Digestive Health

Has anyone had a laparoscopic procedure at Mayo (Rochester) to explore and see what the extent of their adhesions are? Anyone have success having them removed? If so, who did you see?
It makes me very nervous to think about surgery since that is likely what caused them, but my quality of life 4 years in has gotten to be poor as pain keeps me from basic activities. I'd love to talk to a doctor about it to see what they think.

Jul 12, 2017 · Diagnosed with sarcoma? Let's share in Cancer

We were up in April for a round of scans and the next time they will see him is in two years. His dr said that at this point my husband, Travis, would be more likely to find something to check out before they would. He said soon he won’t be scheduled for regular scans and they will see him as needed if we call.
Makes me happy and gives me anxiety all at once. He’s never been worried about a scan, but I’ve gotten so used to them for reassurance!

Jul 10, 2017 · Diagnosed with sarcoma? Let's share in Cancer

I hope it’s ok for me to post- my husband had a sarcoma and I was his caregiver. He was diagnosed at age 39 in 2009 with a stage 3 “Ewings-like” sarcoma on his left leg near his knee & luckily with no bony involvement.
It took longer than usual for diagnosis since it wasn’t exactly Ewings. I think they explained that it had slightly different DNA.
Finally they decided to say Ewings ‘like’ and treat it as such.
We lived in Dallas at the time and saw 3 Dr’s. We decided to go to Mayo (Rochester) for another opinion. We were most comfortable with the doctors and approaches there. The most important part was surgery to get clear margins. Several doctor friends gave advice that since this is such a rare cancer, he needs to find a top surgeon who has had many, many experiences with treating sarcomas.
His team made the plan for him to do several rounds of chemo (he was considered young in cancer years so he had a rigorous pediatric regimen), 5 weeks of radiation, surgery to remove the tumor, followed with several more rounds of chemo which was 10 months total treatment.
His oncologist was fantastic. He worked closely with our oncologist in Dallas so we could stay at home for treatment. We lived in Rochester for 5 weeks with our 2 daughters during radiation, followed by the surgery.
He finished with 6 rounds of chemo at home and finished in May 2010. We have always come back for check ups so his doctors could use their equipment, radiologists, and have their eyes on him. Not super practical to go back and forth, but cancer isn’t very practical! 😉 I hope that helps!