Sign in to follow this  
Followers 0
JustME

Gastric Bypass with CREST anyone?

10 posts in this topic

I was wondering if anyone here has had gastric bypass surgery? I have started the process of getting the surgery and was wondering if anyone has developed worsening of their sclero symptoms or has it helped? I'm still in the undecided stage of getting the surgery and I am going to start the counseling and nutrition program next month but I would like to hear from you all. I have CREST, pulmonary hypertension, sleep apnea, Sjogren's, Esophagitis, etc, etc so I think I am making the right decision by doing the surgery because the lung involvement has just started and I think I would fare better with this disease if I was at a healthier place. Any advice?

 

Thanks,

 

Kim

Share this post


Link to post
Share on other sites

Hi Kim,

 

I'm afraid I can't advise you from my own experience as although I have Limited Sclero, I've not had gastric bypass surgery. It's difficult to say whether it would improve your Sclero symptoms but perhaps the subsequent weight loss would improve your sleep apnea. Certainly the healthier you are generally will help with all aspects of Scleroderma. I don't know whether the surgery would worsen your Sclero symptoms; :emoticon-dont-know: perhaps you could have a word with your rheumatologist? (Providing he/she's fully knowledgable about the disease! ;) )

 

I do have a friend's daughter (not a Sclero sufferer) who had a gastric band fitted to help her lose weight; she has lost a bit but unfortunately lacks the motivation to really make a success of the procedure.

 

I've included some information about Gastric Bypass Surgery which I hope you'll find helpful. There may also be some others of our members who've actually had the surgery and may be able to advise you from a more personal view.

 

Do post again and let us know if you do decide to go ahead with the gastric bypass and how it goes.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Kim,

 

Some of the bariatric (weight loss) surgeries are essentially the same as a fundoplication. I think what I would do is consult with a good gastrointestinal doctor first to ensure that you have sufficient motility in your esophagus and no signs of the stomach being affected by the scleroderma. The doctor who would do the surgery should also know about your scleroderma so the best choice of surgery could be made.

 

There are so many studies that show that obesity adversely affects our hearts, lungs (less room for expansion), and certainly sleep apnea. Even discounting the scleroderma entirely, losing weight would definitely benefit you. You are going the smart route by starting counseling and nutrition programs first, though. Will you also be able to have a tailored exercise program set up too? As SusieQ says, even increasing your activity a small amount helps with the weight loss (and everything else).

 

Good luck and keep posting about your progress and decisions, OK?


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

Share this post


Link to post
Share on other sites

Hi Kim,

 

I have not had a bypass but I had a gastric band fitted in 2008. I was diagnosed with Limited Sclero in 2010.I lost 7.5 stone but have put 1.5 stone back on after steroids turned me into an eating machine while I was taking them! I know the surgeon whom I see for band fills and maintenance of my band said that he would not operate on me if I had approached him with Sclero in 2008. Up to now the band has not caused me any problems with Sclero. I do not regret having the band fitted though. I'm sure my joints would have been a lot worse if I hadn't lost this weight.

 

Take care,

 

Caz.

Share this post


Link to post
Share on other sites

Losing weight is a hard battle, one I've had all my life. I've lost and gained, yo yo'd forever. This time I have to lose and keep it off!! So far, by changing my diet and exercising I've lost -25. It hasn't been easy at all...I hurt all the time, and my lungs are bad, and I'm on oxygen 24/7 but I'm doing it anyway!! Have to!! I decided to do it the old fashioned way...exercise and watch what I eat. Although I have been considering the band surgery because the lung doctor in Seattle suggested it. I've read up on it, and It's almost like starving for the first 2 months of having it done, no wonder people lose a lot of weight on it. I like food, maybe too much. But I'd rather eat salads and fruit and veggies, than eat liquid food all the time, or only bites of food here and there. But If it comes down to doing the surgery I'd rather do the band than actual bypass, because the band can be removed. Hope this helps some? HUGS!!!

 

:emoticons-group-hug:

 

Susieq40

Share this post


Link to post
Share on other sites

Hi Kim,

 

Yes, it is so important for all involved with this know about your health history. Of course, they will/do.

 

I also know several who have had gastric bypass done and have done very well. However, as Jo mentioned in her post, I know of no one who has Scleroderma or pulmonary hypertension who has ever had this procedure done. Therefore, I hope all is carefully considered prior any final decision to proceed.

 

My very best to you and I will have you in my thoughts :emoticon-hug:


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Kim,

 

That's an excellent question!

 

This is definitely something to consult your scleroderma expert about, before going any further. There can be fatal gastrointestinal involvement with CREST (Limited Systemic Scleroderma) and you would want to be very sure that this would be safe for you, long term. There can also be significant problems with malabsorption in scleroderma, disruptions in peristalsis, and a proclivity to develop severe stomach and bowel problems.

 

If I were you, I would completely table the issue and make sure that your advice is from a real scleroderma expert (not just a usual rheumatologist; you need someone who specializes in scleroderma to help you truly "weigh" the best course of action here.)

 

Any stress could worsen your scleroderma or other symptoms, and severe dieting (which is what the surgery imposes afterwards) could potentially make your illness kick into high gear. The usual recommendation is that scleroderma patients should not diet or eliminate any major food groups without consulting their scleroderma expert first. We are not good candidates for any extreme dieting. Scleroderma patients are likely to have Hashimoto's Thyroiditis (hypothyroidism) as well so be sure you have been tested for that, and treated, if necessary.

 

If you are hypothyroid, in addition to treatment, it is common for hypothyroid patients to find that they cannot lose weight unless they eat at least 1600 calories a day. So while you are waiting for more input from your medical team (this is NOT a do-it-yourself decision for scleroderma patients!), you can try eating 4 meals a day of 400 calories each and make them wholesome and well-balanced and never go too long between meals. If you start to lose more than 1-2 pounds a week, add another meal to slow the loss down (so that your body doesn't perceive this as stressful and so you don't shut down your metabolism.)

 

BEING at a lighter weight might be helpful for you in many ways. However, HOW and HOW FAST you get there, could seriously impact your overall health. You can probably make some small progress safely by the above, and not starve or suffer hunger pangs, while waiting for a full medical review. Keep in mind of course that I am not a doctor, not a nutritionist, not a weight loss expert, in fact, I don't even set a good example on any of it.

 

This is not to say that your scleroderma expert won't approve of the surgery! It is not to say that this won't be a wonderful solution to many issues for you! It is not to rain on your parade!

 

It is just to say that you have some extremely serious medical conditions which need to be fully considered before attempting ANY elective surgery or ANY severe diet program. And if it entails losing any more than 1-2 pounds a week with a well-rounded diet, it IS a severe diet (and the surgery will cause a much greater loss than that.) This might be dandy for otherwise healthy people, but it is not dandy for those of us with serious illnesses to decide on our own (or with our "regular" medical team). This requires the experts to consider our entire medical history and susceptibilities.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

Well said Shelley. I guess I won't even bother thinking about that this month. Cutting back on food. snacks, and losing weight slowly and progressively may be the safest bet for some of us. If I had one of those gastric things done the acid contents in my stomach would have a faster route up my esophagus. Ah! no thanks.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Thanks for all the advice I really appreciate it. I am at my wits end and this is my last resort. I have done all the diets, exercising, counseling, even went to a famous weight loss resort for 3 weeks. I do have a great team of experts. My gastro doctor worked for years at the Scleroderma clinic at UCLA in California and my rheumatologist is a world renowned specialist in Scleroderma. I have esophagus involvement and my gastric doctor told me about a small study that was done on scleroderma patients and the Roux-n-Y Gastric Bypass improved the esophagus [function]. I will be seeing a counselor, nutritionist and personal trainer for awhile before surgery so my hope is that they can help me get to the bottom of this problem and maybe avoid having surgery but I am keeping it open as an option.

Thanks,

Kim

Share this post


Link to post
Share on other sites

We have a link on our site to the study Kim's doctor mentioned:

Comparison of surgical approaches to recalcitrant gastroesophageal reflux disease in the patient with scleroderma. This finding suggests that laparoscopic Roux-en-Y gastric bypass (RYGBP) may be an option for the primary management of scleroderma-associated gastroesophageal reflux. PubMed. Ann Thorac Surg. 2007 Nov;84(5):1710-5.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
Sign in to follow this  
Followers 0