Wow. I haven't logged in here in years. But here I am again, a month out from a small bowel resection, looking at phase 2 protein packs once again...

I was formally diagnosed with hypermobile ehlers danlos last year. I just had my first orthopedic surgery on the 5th because of a hip labral tear. I dislocate joints. I am in chronic pain. This has gone on since childhood. But didn't know the real cause of it back in 2018 when I had gastric bypass. I always thought it was from rheumatoid and osteoarthritis.

A brief history...

I had RNY bypass in Nov of 2018

I had my gallbladder removed and an internal hernia repair January of 2019

In March 2021, I suffered from a full midgut volvulus resulting in open surgery - I was left 11 hrs in the ER with no care and surgery was performed by a general surgeon. Bariatric was not contacted despite my begging.

In May 2021, I had an open operation to repair a Petersen's Defect hernia. Present, but missed, during the March surgery.

In June 2021, I was hospitalized for a week due to malnutrition from chronic diarrhea.

Since 2021, I have had chronic diarrhea and abdominal pain. It's largely gone untreated until...

September 2025, I go to the ER and the CT shows that my intestines have flipped from my left side to right. By the time my bariatric surgeon goes in, it has self-corrected.

I meet him post-op, and he tells me I have ZERO scar tissue. Which is insane given the number of abdominal surgeries I've had (including a tummy tuck w muscle repair and c-section). My mesentery is extremely floppy. We initially thought that it was that was in 2021 because I had lost 140lbs in 10 months with the initial operation. We now know it's because my body hates collagen.

My anastomosis, due to no fault of my own, has stretched to 40mm. It should be 10-12mm. Since September, I have had almost uncontrollable diarrhea daily. Every time my intestines flip, these symptoms get worse. The surgeon suspects they are flipping and self-correcting more often than I realize. He could easily move them, which you shouldn't be able to do. I have tried a number of rx medications for things like IBS, but it is now going to take a resection of the dilated anastomosis and a creation of two separate juncture points to "correct".

My surgeon says it may help. It may not. It may create two points that will dilate again in a few years, instead of just the one I have. We don't know. But I have to do something. Because every time this happens, I can very well die. I now have a two-year old as a single mother by choice. That is not an option.

There are new staple lines used than there were back in 2018. There are reinforcements that can be used now that we know I have EDS. But I implore anyone that has EDS to have very serious conversations about postoperative complications with their surgeon. Standard RNY procedure is NOT enough. Your risks for leaks, dilation, and dumping are astronomically higher. Decide for yourself if it's worth it.

Was I a perfect patient? Absolutely not. Did I eventually drink water with meals? Yes. Did I occasionally have carbonation? Yes. Maybe I took a few too many large bites. But the ramifications in the average patient would be weight regain. Not herniation. Not death.

I only have that I can go back and say that it was worth it after March 2nd... when this nightmare comes to an end... or at least gives me a few more good years.

Starting weight in 2018 - 276

Lowest weight in 2020 - 111

Current weight in 2026 post-baby - 170

Edited January 15Jan 15 by mousecat88

Sorry you have endured so much pain and suffering. I do not have EDS, but I had a midgut volvulus and it was the worst thing I have ever been through. Although we all sign a release saying that the risks of surgery have been explained, it seems hypothetical until it actually happens. It's important for people to be aware of the potential for complications even years down the road. I was 4+ years out from gastric bypass when I had the volvulus. I hope your upcoming surgery successfully resolves your problems.

On 1/16/2026 at 9:27 PM, BigSue said:

Sorry you have endured so much pain and suffering. I do not have EDS, but I had a midgut volvulus and it was the worst thing I have ever been through. Although we all sign a release saying that the risks of surgery have been explained, it seems hypothetical until it actually happens. It's important for people to be aware of the potential for complications even years down the road. I was 4+ years out from gastric bypass when I had the volvulus. I hope your upcoming surgery successfully resolves your problems.

Definitely. We do sign a release but I don't think it was adequately impressed upon me that someone could have MANY internal hernias. And I never heard the term volvulus before it happened. I feel like at the time, I wasn't really well-informed as to all of the possible complications - at least the rare ones. They only really talk about the rare chance of death during or immediately after surgery. Not the rare complications that can occur years later.

I suspect I may have EDS due to some symptoms I was following up. So you've certainly given me much to think about. Sadly, I'm not in a circumstance where I can opt out of the surgery, but I'll have another talk with the surgeons as a just in case.

Thanks. X