Ehlers Danlos Syndrome

[Su2ie]

I Have EDS and keep asking myself if I'm being really stupid going for wls!! Generally speaking any kind if surgery should be avoided if possible and I'm a bit scared!

Just wondering if there is anyone here with EDS and if anyone with it is post op?

I've spoken to someone briefly who had a band and had no trouble at all but would live to hear from others, particularly bypass peeps.

Not that I would wish it on anyone but hoping to find a few fellow bendies

 

[melarnz]

I'm sorry, I don't know what EDS is. But I'm sure if your surgeons are happy to go ahead then all should be fine.

Good luck xx

 

[Becky85]

I have EDS 3 and PoTs. I had gastric bypass surgery on the 6th may. If I can help just shout. Xox
Ps I've heard the sleeve is best as we need all the vitamins we can get also need to be careful of potassium levels being too low.
I have to have regular blood tests and will be closely monitored.
I have a lot of weight to loose which is why I decided to have the bypass.

 

[Su2ie]

I have EDS 3 and PoTs. I had gastric bypass surgery on the 6th may. If I can help just shout. Xox Ps I've heard the sleeve is best as we need all the vitamins we can get also need to be careful of potassium levels being too low. I have to have regular blood tests and will be closely monitored. I have a lot of weight to loose which is why I decided to have the bypass.

Wow! So nice to find someone who knows about EDS and has experience of this kind of surgery.
Where about are you? I'm at Sunderland Royal. Got my first appointment with the surgeon on 16th June and planning to have a good discussion about it!!
I also have type 3 but thankfully don't have too many gastro issues other than reflux, but because of this they said a bypass would be the best option.
Have you healed ok after the surgery??
Good luck with your weight loss x

 

[Su2ie]

I'm sorry, I don't know what EDS is. But I'm sure if your surgeons are happy to go ahead then all should be fine. Good luck xx

I'm seeing the surgeon on the 16th June so will have a good discussion. As long as I'm confident they know how to deal with it and understand the implications I'll be happy
It is quite unusual and often dismissed by doctors so fingers crossed !

 

[Becky85]

Oh I totally forgot to say bypass is better for reflux. I'm based in Surrey I had my op at st. George's in tooting. I was quite a novelty as non of the staff knew anything about EDS I had so many staff visiting me lol.
My pain is still as bad as it was before surgery but hopefully it'll improve.

 

[Becky85]

Wow! So nice to find someone who knows about EDS and has experience of this kind of surgery. Where about are you? I'm at Sunderland Royal. Got my first appointment with the surgeon on 16th June and planning to have a good discussion about it!! I also have type 3 but thankfully don't have too many gastro issues other than reflux, but because of this they said a bypass would be the best option. Have you healed ok after the surgery?? Good luck with your weight loss x

I have healed quite well, no infections which is a rare thing.
Thank you. Good luck to you to. Cc

 

[Su2ie]

Hi Becky,

Just wondering if your surgeon did anything differently when having the op?

I saw my surgeon last week and mentioned I was a little nervous about the eds to which his answer was don't do it if I'm worried because it's not necessary surgery!! He said he wouldn't do anything differently but i'd be monitored for bleeding and malabsorption etc. I haemorrhaged badly after having my tonsils out but I didn't know about the eds then, does make me nervous though!!

I keep arguing with myself over whether this is a good idea!!!

 

[marcusbm]

I also have type III (hypermobile) EDS/JHMS. I have wondered if internal organs are stretchy in the same way skin is. Surely that would affect how the stomach and intestines respond to RNY. Also there's a risk of healing being complicated and there's a possibility that internal healing might different.

 

[Su2ie]

I also have type III (hypermobile) EDS/JHMS. I have wondered if internal organs are stretchy in the same way skin is. Surely that would affect how the stomach and intestines respond to RNY. Also there's a risk of healing being complicated and there's a possibility that internal healing might different.

Yep as far as I understand it many internal organs are made up of/contain some collagen and are therefore also affected by eds. Many eds sufferers have various gastro symptoms but I don't thankfully do hoping it shouldn't impact on the wls too much.

So what stage are you at Marcus?

 

[marcusbm]

Yep as far as I understand it many internal organs are made up of/contain some collagen and are therefore also affected by eds. Many eds sufferers have various gastro symptoms but I don't thankfully do hoping it shouldn't impact on the wls too much.

So what stage are you at Marcus?

I will start my three week pre-op diet on Wednesday and the operation is on 16 July.

Thankfully I don't have any gastro problems and haven't since I was a kid (when I had problems all the time). The last gastro problems was related to a bad reaction to a NSAID - so I've avoided them since then. They're banned post surgery anyway.

 

[Su2ie]

Oooh exciting, so close!!! Hope all goes well, let us know how you get on....

 

[Su2ie]

I will start my three week pre-op diet on Wednesday and the operation is on 16 July. Thankfully I don't have any gastro problems and haven't since I was a kid (when I had problems all the time). The last gastro problems was related to a bad reaction to a NSAID - so I've avoided them since then. They're banned post surgery anyway.

Hope all goes well for you today - let us know how you get on x

 

[marcusbm]

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.

 

[Su2ie]

Bloody hell! So sorry to hear that but glad you're ok. Sounds like you've been lucky!

 

[Innertemple1]

EDS

Hi I am Emma.

I have EDS and also post op - 5 weeks. I had a bypass with a gastric ring, hiatus hernia (which caused terrible GERD) now repaired and, so far, cured.

My surgery went well, no complications so far and I am losing weight ...slowly. My BMI was 35 and I needed the bypass for my awful GERD, and to lose weight to manage my mobility and pain and of course for my long term health.

I would love to hear from other EDS'ers. How their journey is going.

 

[Su2ie]

I'm now almost 15 months post surgery. Healed well and now down to a healthy normal bmi and off all meds except the vitamins, iron and lansoprazole. Was only meant to take the lansoprazole for 6 months but struggling to come off it though not too concerned by this.
My pain levels and joint problems are so much better and I can honestly say at this point I'm thrilled as my quality of life has improved massively.
The long term does worry me for potential issues but so far so good
Wishing you a positive outcome too x

 

[Mich81]

I've just posted about eds and then came across this, I'm worried i will be told surgery will not be possible- now feeling more positive after reading. I had my gallbladder out without any issues so hopefully it will be fine X

 

[Su2ie]

I've just posted about eds and then came across this, I'm worried i will be told surgery will not be possible- now feeling more positive after reading. I had my gallbladder out without any issues so hopefully it will be fine X

Hi Mich,

I was worried too but the surgeon basically said that if I was worried then I shouldn't have it because it is elective surgery, not essential. I discussed all the pros and cons and although was nervous about it decided to go for it. I got through the surgery and recovery with no problems.
I'm now 21 months out and am having some issues with stomach pain and nausea but have yet to find out what's happening so have no idea of its eds related or just a complication of the surgery
Hope it all works out for you, feel free to message me if you have any questions.
Suzie
X

 

[marcusbm]

EDS can affect healing. There's currently research in progress (I don't know where but it was mentioned by one of the surgeons I spoke to) that gastric bands may be contraindicated to hypermobile patients due to increased risk of complications. However gastric sleeve/bypass is still an option unless classical EDS or high classical crossover.

Those who have had a band need to be aware of the symptoms of erosion - excessive coughing, stomach pains, gastric ulcers and increased appetite (or no restriction).