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Peggy

Gastric Bypass - Surgeon Wants to Do For Reflux/no Stomach Motility

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I have Systemic Sclero and 7 other autoimmune diseases. The last 6-9 months have been horrible. The issue now is I have just a very minute amount of motility in my esophagus and none in my stomach. I have reflux attacks 24/7 and aspirating into my lungs. These attacks are like being burned alive and I use a GI cocktail to try and numb my esophagus and throat. This is a mixture of lidocaine and aluminum/magnesium. After 3 of these and it doesn't work then it is off to the ER for IV's of protonix (pantoprazole), something for the pain, and something for the nausea. What is happening is my stomach isn't working so it fills with bile and this then is like a boiling pot and backs up into the esophagus. My stomach tells my brain it's full so I'm never hungry.

 

The surgeon is considering doing a partial fundoplication where he would wrap part of my stomach around my esophagus. The concern he has with this is my ability to swallow after and also the possibility of a lot of nausea. The other consideration is gastric bypass surgery where they would just bypass my stomach completely. We meet (my family and I) with him the end of this month to discuss the pros and cons and the dangers. One thing my daughter, who is a pharmacist, is how do I take the mountain of prescriptions that I take; and also how does my body absorb nutrients.

 

Has anyone heard of this or had this? Any input would be greatly appreciated.

 

Warm hugs.

 

Peggy

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Hello Peggy,

My sinere sympathy to you, I am just coming out (I hope) of almost a month in and out of hospital with a similar problem. I know how nasty it is.

 

In my case I had a small bowel obstruction as a result of adhesions from previous surgeries. I have had bowel difficulties for 30 years, in the early days the repairs I had done made life tolerable, but now they are starting to come back and bite me.

 

There were days I feared my stomach had stopped for good, but now it seems to be OK again. You don't really want to hear about my woes, but I thought I would at least comiserate with you because I do know what you are putting up with.

 

For quite a number of days I had a naso/gastric tube draining the bile and that was bliss in comparison, the main trouble is that it irritates your throat and it can get quite sore. As well, taking pills can be tricky particularly if they are big.

 

I am fairly sure that others on this forum have had similar problems and hopefully somebody will respond to you with something more useful than sympathy.

 

Warm Hugs and best wishes

JudyT

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Peggy,

I just want to let you know I am thinking about you. You too Judy.

 

miocean


ISN Artist

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Hi Peggy,

 

Thankfully, I don't suffer with gut involvement, but it sounds dreadful and I'm so sorry that you're having to cope with so many horrible problems.

 

I've found a couple of links for you to Comparison of surgical approaches to recalcitrant gastroesophageal reflux disease in the patient with scleroderma which has information about the Roux-en-Y Gastric Bypass(RYGBP) and also a general link about a Gastric Bypass which I do hope will give you some more information.

 

I do hope that whichever procedure you opt for will give you some relief and a better quality of life.

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Peggy

 

I am sorry you're having this problem having just come to a sort of status quo with your pain issue. I know of people who have had a fundoplication for reflux and not had any afterwards so for some it is successful, very successful but I don't know what the implications are for stomach motility issues.

 

Discussing it with your family and specialists is such a good idea just remember that you have to do what gives you the best quality of life, in my opinion.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi,

Yes, I had the same problems as you. I had gastric bypass in July 2011.

 

It has helped me but I have a little more insight to this. I don't really think it is the surgery that helps you but the way you have to eat following the surgery. You have to learn to chew your food really good and only have 1 cup of food 3 times per day with the surgery. A doctor had diagnosed me with esophagitis long before the surgery and said if I could eat 6 small meals per day and chew my food up good it would help. I couldn't do it but I would try that first before having surgery. I don't regret having the surgery but I do wish I could have done it on my own.

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Hi Peggy I'm sorry you have to make such a difficult choice and I wish you the very best outcome what ever you decide.

 

Scleroderma has affected my digestive system also and I have now been diagnosed with gastroparesis , I too have dreadful heartburn, reflux and constant bile and mucous build up that is very hard to clear as like yourself I suffer the effects of dysphagia.

 

My gastro doctor has me on a GI cocktail and has added sucralfate to the mix; this has helped me with the heartburn somewhat but I still have a very limited diet and the list of can't eat that is growing longer than the can eat!

 

Can't really advise you on your surgery options but there is a support group on line you could check out , it's especially about gastrointestinal disorders such as yours and some of the members have scleroderma and a lot of the people have had surgery you are asking about. Maybe you could get some advice on there; you can pm me for details if you like.

 

Good luck Peggy wishing you all the best and take care Andy ko

 

Judy t

Thinking of you also hope you are feeling better now best wishes andyko

I would love to have the support group that I could talk to about this and get some insight. Unfortunately my attacks are all of the time and the last really bad one on Saturday I aspirated so terribly. Even after the attack subsided and the GI cocktail helped the burning I had a new development where my chest hurt so bad it felt like a heart attack. I couldn't or didn't dare to cough as it just coughed up the horrific acid and I was so afraid to have it start all over again. All I could do is sit there upright on the couch at 6am (yes - 6am is when this hit!) and all I could do is just sit there and cry. So I desperately need an answer to this. I am on sucralfate and every other drug there is for this. The poor doctors have tried all of them and it seems as though the disease is just running wild after me. Thank you so much for your input and information!!!!

 

Hugs,

Peggy

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Hi,

Yes, I had the same problems as you. I had gastric bypass in July 2011.

 

It has helped me but I have a little more insight to this. I don't really think it is the surgery that helps you but the way you have to eat following the surgery. You have to learn to chew your food really good and only have 1 cup of food 3 times per day with the surgery. A doctor had diagnosed me with esophagitis long before the surgery and said if I could eat 6 small meals per day and chew my food up good it would help. I couldn't do it but I would try that first before having surgery. I don't regret having the surgery but I do wish I could have done it on my own.

I think I am leaning in my mind towards the bypass than I am the partial fundoplication. I got the idea from the nurse that the surgeon is leaning this way also due to the fact that he is concerned about my inability to swallow and really bad nausea if I do the fundoplicaiton. If you could would you please run through for me how this was done? How long were you in the hospital? Time to recover? How do you get your nutrients? How do you take your meds? My stomach will be completely bypassed being it isn't working so I guess I am at a loss on how this will all work. I know about 10 years ago I came across a lady who had this surgery due to her being very obese. Well she lost weight but then it got to the point where she couldn't stop losing the weight and she looked almost skeletel. How are you doing since the surgery? Any information you could provide would be so appreciated.

 

Thank you and hugs to you:)

 

Peggy

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Hi Peggy,

 

Thankfully, I don't suffer with gut involvement, but it sounds dreadful and I'm so sorry that you're having to cope with so many horrible problems.

 

I've found a couple of links for you to Comparison of surgical approaches to recalcitrant gastroesophageal reflux disease in the patient with scleroderma which has information about the Roux-en-Y Gastric Bypass(RYGBP) and also a general link about a Gastric Bypass which I do hope will give you some more information.

 

I do hope that whichever procedure you opt for will give you some relief and a better quality of life.

 

Best wishes,

I wanted to thank you for this information. My husband has been searching for as much information as possible on all of this. I know my family is very concerned but they are even more concerned if I don't do something. My attacks are hitting all of the time and they are so very painful and bad. My aspirating is extremely concerning.

 

Thank you again!!

 

Peggy

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Hi Peggy,

So sorry to hear that you are feeling so poorly. I have been waiting to hear an update from you because I know how distressing this thing is, but I was hoping to hear something less traumatic than this.

 

Since I last wrote I have had one bad attack of what I call gastritis that kept me up all night so I am off to the Gastroenterologist later today. Keep posting on how you are doing, there are lots of us out here who want and need to know what is going on, and what is available to help.

 

Warm hugs :emoticon-hug:

to try to make you feel better.

 

JudyT

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Hi Peggy...

I am so SO sorry you are having such pain and concerning symptoms :crying: . To have this continue has got to be difficult for your family to see you going through, to say nothing of the fact it's a completely helpless feeling for them as well.

 

Bless all your hearts and I am sending all of you endless :emoticon-hug: s and hopefully , you don't have to endure this much longer! Keeping you in my thoughts.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Peggy

 

I too have terrible reflux and NO motility. I was put on 120 mg of Dexilant which is a newish PPI, really time released Prevacid, and it has worked very well for me after trying high doses of every PPI including Prevacid.

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Well my surgeon said the partial Fundoplication isn't a possibility as it won't work in my case. He has consulted with surgeons out of the country and their advice is the gastric bypass. So the surgery is scheduled for April 26th. I would be fibbing if I didn't have worries about this whole thing. I have done alot of research on it and there is definately good and bad about it. Every time I put something in my mouth I keep thinking it may be the last time I can eat like this or even eat that particular food. I just want the being burned alive to end; the taste of acid in my mouth; the fear of when an attack is going to hit and when one starts running to try and avoid doing the whole GI cocktail as it is such hard stuff to take. I am hoping I can find the chat line on this particular issue that one of you talked about before this surgery to get further insight. If someone knows the link please let me know. Thank you!! Hugs to all!

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