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Ehlers Danlos Syndrome

Bahri

New Member
Copied from another thread:

Surgery was abandoned due to lap band erosion. I was advised that the band had eroded all the way through my stomach causing some leakage, peritonitis. They said I'm lucky to be alive.

The band had to be cut out of the stomach and I'll probably need at least one extra night in hospital.

The band has, obviously, been removed.
 

Bahri

New Member
I am in a lot of pain and struggle to walk from my EDS. Also, I have had four surgeries on my feet. I was fighting the fight and now that it is going to happen... I am getting very scared.
Logically, I feel weight loss is important for my mobility and quality of life. But after all the problems with the band and EDS connection... I am worried about the RNY. I am 44 years old, 5 ft tall and currently weigh 210lbs.
I wish there was some solid info on EDS and RNY outcomes.
If there is anyone with similar issues please contact me at sbahri517@ yahoo.com.
 

marcusbm

Well-Known Member
The general advice for EDS is to avoid elective surgery. Another advice is to keep your weight down and be as fit as possible. With WLS it's a contradiction of the two.

Just to clarify I was diagnosed with hypermobile type EDS after I had a gastric band.

From what I can make out any type of EDS and any type of implant is a problem waiting to happen. Now some may work fine, skin elasticity from classical type is also often there as an aspect of hypermobile and vascular types (for vascular EDS it's HIGHLY unlikely that weight loss is an issue). There are ways of checking - pull the skin on an extended elbow, also your neck and back of your hand. If you can pull it further than most people can then it's a sign of classical crossover. This can affect healing and how the body reacts to alien objects such as a band (but seemingly not stapling). Why this jump in logic? The skin is an organ - it often gets taken for granted but it's indicative of how other organs in your body may be different. Increased elasticity in the skin may (this is a theory that hasn't been properly researched, I can't find a paper on it but I'm aware of discussion in the medical community) I repeat **MAY** influence the elasticity of some internal organs. I'm sure there's a PhD candidate out there who could take this topic further, but it's all theory at the moment.

My own personal non-professional opinion is that the only WLS a bariatric EDS candidate should consider is RNY or MGB (possibly sleeve). Certainly not the gastric band due to increased risk of band migration. With the sleeve as it's purely restrictive and there's an unproven theory that EDS pouches are more likely to stretch, the long term benefits may be less. However with RNY there are increased risks of malnutrition and EDS patients often have absorption issues of vitamins before bariatric surgery so levels need to be very carefully monitored. MGB is a compromise but with the larger sleeve style stomach may have shorter term losses but with some of the malabsorption aspects it's questionable if there's a significant difference in risks to RNY, although generally it's considered a little bit safer. Ultimately the difference between RNY and MGB is largely down to preference and surgeon recommendation. While cost can be a factor, it's good to discuss the issue with your surgical team and consider their recommendations.
 

marcusbm

Well-Known Member
I had gastric bypass in 2005 and just found out I have Ehlers Danlos Syndrome hyper-mobility and Pots

Welcome to the club!

Remember the only difference with a diagnosis is that it can be better managed and your medical experts can help improve the quality of your life.
 

MarciM

New Member
I had rny gastric bypass in 2009. I too have EDS and POTS. I have had nothing but problems and would never recomend surgery to anyone expecaly if you know you have EDS. My surgeon would not have done surgery if I had been diagnosed at the time of surgery. Now I’m struggling with sever malabsorbsion and have regained most of the weight not for any other reason but that my body is no longer absorbing fat or protein and can not convert these things into amino acids so my body is in starvation mode and the whopping 700-900 calories I can manage to consume each day turns into fat on my body. Anyone have reversal to include the top of the small intestines back into the digestion process. Any other suggestions or things people have done and been successful with to improve absorbsion? I get IV nutrition weekly. Thanks
 

shortcake_chris

New Member
I had the Gastric Bypass (2005) before I got diagnosed with hEDS & Pots

Now they want to reverse my gastric bypass. They said Sleeve is much better. No vitamin issues or malnutrition/malabsorption.

I don’t know what to do now
 

Geno

New Member
I had my sleeve in April of 18. In August my eds kicked into high gear, I started having trouble walking and then my vocal cords became partially paralyzed. Finally in November I was diagnosed with an antibiotic resistant sepsis. I have been spiraling downhill ever since. I struggle to do much more than walk to the bathroom, or get something to drink. This last year I've had major gastrointestinal emptying issues, and the last couple of months now I'm struggling to eat at all. it's getting hard to get enough fluids to stay hydrated. Possibly facing a feeding tube.

Finally got the eds hypermobility diagnosed about 3 weeks ago.
My family is convinced that the bariatric sleeve was the root of my issues, I am not convinced.
 
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