Virtual Second Opinions for Chronic Ileostomy Issues

Ahoy Ostomates!

Have you or your provider ever used a virtual second opinion consultation from Mayo Clinic or Cleveland Clinic? If yes, how did it go? Was it worth it? We are going into our 4th year with our adult son's ileostomy and are still having problems with frequent blockages (not food related) requiring hospitalizations and have tried motility drugs like Reglan, Mestinon, and Moterity that resulted in just having more pain, in addition to the blockages. His GI Surgeon and GI Medicine drs have been great, but we are not seeing any improvements so we are searching for second opinion consultations. Any feedback would be greatly appreciated. Thanks!

Have they checked for adhesions or scar tissue that would be sitting around the ostomy or anywhere in his body? If they haven't done so, I would ask for an MRI.

Hi, I've had my surgeries at Cleveland Clinic, and if you need to talk to a motility doctor there, I can recommend one.
My colorectal surgeon is more involved in a subspecialty now, but if you do choose to do a virtual second opinion with Cleveland Clinic, I know they will be thorough with your son's medical history.

Hi all, when I had my first surgery, it was a year and a half later, and adhesions/scar tissue caused me to have a total blockage and another surgery. Before that, I was having cramping and occasional vomiting depending on what I ate, but it would clear after drinking lots of fluids. In hindsight, I should have been sent to a gastroenterologist and maybe gotten scoped.

Thanks Beth22. Yes, he has been checked for adhesions & scarring. That doesn't seem to be the problem. He's had multiple CT & MRIs. Three surgeons, in the same hospital, have seen him. It was actually his main surgeon who suggested getting a second opinion.

My Ostomy Journey: Kimberly | Hollister

Thanks! If we request a virtual second opinion (because travel is very problematic), I don't know if we will have a choice of the doctor assigned to the case. That's why I am trying to find someone who has been through the virtual second opinion process. But, good to know you think they will be very thorough. Thanks again!

Have you checked with Duke? They are here in NC. We also have UNC, Atrium, Wake Forest Baptist in Winston Salem. I had my surgery at Duke in Durham.

Hmm. Have they ever done a transfer test? (Stomach motility test) One for his stomach to see how long it takes to travel from the stomach to the intestines, and how long it sits in the stomach. Or a transfer test to see how stuff moves through his intestines (a sitz marker test). May I ask what caused him to get an ileo?

He was seen at UNC Hospitals Duke, Wake Forest, etc all at a very young age. Currently being seen at UNC Hospitals for the past 3 yrs. They are all good but we are not making any progress, so I wanted to try the best rated GI hospitals in the US.

After years of chronic constipation, he eventually ended up with a mega colon and had to have his large intestine removed, hence the ielostomy. Extensive testing has not been done due his disabilities (i.e., nonverbal autism, severe swallowing difficulties, etc.)