It's a big decision

[So Blessed]

I love my RNY. Most days.

A friend of mine and her husband both had RNY right around the same time I did. Unfortunately, she was one of those patients for whom the surgery just did not work. Some people in our old support group accused her of being noncompliant, but she was sick all the time. She subsequently revised to a DS. Although all of her symptoms didn’t disappear, she is much better able to manage them.

I hadn’t seen her since last year and didn’t recognize her at first when we met at the coffee shop the other day. She’s lost her excess weight, but is now having issues with getting in enough food. She looked so frail. She takes her supplements but some days she really struggles to eat without it coming back up. Still, she says she would do it over again in a heartbeat.

While we were catching up she told me that a lot of the people from the old group have had significant regain. One guy we knew has regained all of his weight plus some. Her own husband has put back on about 80 pounds and they’re trying to figure out what will be the best way to get him back to where he was before.

She had recently been for a checkup with her bariatric surgeon. After seeing the doctor, she had a chat with the nurse to get some feedback about her husband’s situation. The nurse told her that most of their RNY patients did OK with maintaining. A little bounce back weight was considered normal. BUT they were starting to see a pattern emerging with people who got the sleeve. They would do fine for the first 4 or 5 years and then they would start regaining and would want to be revised to the DS. Problem was, the insurance companies wouldn’t pay for a second surgery and then they’d be stuck with something that didn’t work for them. They are doing everything they can to educate people about the DS, but even with that there are no guarantees if the patient isn't compliant. In her opinion, lap bands were least effective and a temporary fix at best.

Just goes to show that there’s no one right answer for everybody, but I’m satisfied with my choice.

I hope you are too.

[SuzeW.A.]

I really wish I had done more research on the band before I had it in. It worked fine for about 6 months and then no matter how little was in it, I would constantly throw up healthy food and be stuck living off high caloric junk that slides thru my band. But then again, I know a few people who have kept it off for 5 years or more with the band. I totally agree that everyone is different, personally I can't wait to have my DS.

[Deleted]

My eyes are definitely open to the realities, both positive and negative with my choice. Thanks for posting this, we all hopefully walk into the OR educated and comfortable with the choices we make.. and this place really is a fantastic one for those that have not yet hopped up on the table.

[honeybadger11]

Many people around me see how well im doing and are very excited. I have a few people interested in the DS but i always make sure to encourage self education and really understanding the surgery they have chosen. Being from an area that the closest DS surgeon is 9hrs away its not only a huge commitment to the surgery but also travel and more out of pocket money so I also talk to them about the RNY or the sleeve which is done 45 mins away.

I knew neither of these surgeries would be enough for me the 2nd time around as i was revised from the dreadful lapband. Thats the only surgery i talk down about. And i obviously talk highly of the DS but i think the RNY and sleeve can be good surgeries for some people, the DS just gives you more room for error:)

[kat44]

Mar 15, 2012 15:16:12 GMT -5 SuzeW.A. said:

I really wish I had done more research on the band before I had it in. It worked fine for about 6 months and then no matter how little was in it, I would constantly throw up healthy food and be stuck living off high caloric junk that slides thru my band. But then again, I know a few people who have kept it off for 5 years or more with the band. I totally agree that everyone is different, personally I can't wait to have my DS.

Yep this is sooo true. It is sooo much easier to eat junk food with the band. It's how I got hooked on ice cream and high calorie coffees/drinks! I found that if I ate ice cream before a meal, it would open up my band so I could eat more. It was the strangest thing. The band is CRAZY! I know it worked for many people but I think that thing is evil!

[kat44]

Mar 15, 2012 18:36:29 GMT -5 honeybadger11 said:

Many people around me see how well im doing and are very excited. I have a few people interested in the DS but i always make sure to encourage self education and really understanding the surgery they have chosen. Being from an area that the closest DS surgeon is 9hrs away its not only a huge commitment to the surgery but also travel and more out of pocket money so I also talk to them about the RNY or the sleeve which is done 45 mins away.

I knew neither of these surgeries would be enough for me the 2nd time around as i was revised from the dreadful lapband. Thats the only surgery i talk down about. And i obviously talk highly of the DS but i think the RNY and sleeve can be good surgeries for some people, the DS just gives you more room for error:)

Yep I keep going back and forth in my head between the DS and RNY but like you said, the DS leaves more room for error...I believe I need that!

[poodles]

I worked at a bariatric clinic one summer, I had the band (before I knew about the DS, and revised to the DS. My recommendation is always Sleeve for restrictive only, DS for the whole shibang. I hated my lapband life, I love my DS life.

Even with my issues here lately with Kidney stones, post op nausea, and weight loss, I would do it again. My surgery is not making it easy to recover from my recent issues, but it is not the cause of the issues either. I love my DS!

[Ladytaz]

Given my status as kind of a hybrid freak it's hard to say I am happy or unhappy with my surgery. I was extremely happy with my first surgery for the first 2 to 3 years then I started regaining and stopped going to support groups because I was ashamed, was poorly educated and had an untreated carb addiction that was out of control. At times I almost felt like I was deliberately trying to fail. I also had a huge sleeve that offered no restriction and I was hungry all the time. I had chronic bacterial overgrowth with terrible gas and diarrhea with frequent accidents. I was also very sick due to noncompliance and lack of education. I was a mess and a poster child for what not to do after WLS. Due to my deficiencies my thinking was very messed up and not very rational at times. I had enough sense to realize that I was not able to handle the responsibilities of malabsorption. I wanted to have my surgery reversed. I had all of the negatives of WLS and no benefits.
I was told that I couldn't be reversed, only revised to reduce the malabsorption. Actually, I told I would have virtually no malabsorption. That was what I wanted.
The surgeon told me that he could give me a RNY pouch but that I probably wouldn't lose any weight. All I could think was that I had managed to regain 100 lbs with malabsorption, I could only imagine the damage I could do without it. Out of fear I agreed. I knew absolutely nothing about having a pouch other then that I could dump if I ate sugar. I was given no pre op education, just like I wasn't given any in 2002 with my first WLS. Eight days later I was on the table. The only research I did was to talk with my sister, who had a RNY at the same time I had my first WLS. She had some regain but was losing again with HCG drops and almost at goal.
I never questioned whether or not to have the revision. I had no quality of life. I felt I had no choice. I had a terrible time after the surgery. It was a very rough recovery but that was because I went into it so sick. But as soon as I had the surgery I noticed a difference. I had no desire to eat. I wasn't nauseas, just not hungry. I had no problem following the post op diet and I decided at that time to avoid all sugar and refined carbs. After major surgery, a tough recovery and lots of pain meds I detoxed from carbs. To this day, 20 months later, I am still not hungry and still have avoided refined carbs and sugar. I am now gluten free with no issues. I did have some sugar by mistake and discovered that I do dump. Definitely not a good experience but since I planned on staying away from sugar anyway it wasn't a tragedy. I have also dumped when I didn't eat sugar but that has gotten much better.
Today, most of the time I don't feel different. About the only thing different is that I can eat a lot less then I ever did before and be satisfied and I can go a long time without eating and not get hungry. In spite of all the horror stories I have heard about having a pouch I feel very fortunate that it isn't as bad as it could have been. I do worry about reactive hypoglycemia but so far I have dodged that bullet. Honestly, if I knew about the likelihood of developing RH I would not have gotten the pouch. It may be that because I eat frequently that I have warded it off but that scares me to death, the thought of dealing with that.
I believe my surgeon was wrong about not having any malabsorption because in spite of eating at least 2000 calories a day my weight has stayed too low. I got down under 100 lbs and that scared me. Now I seem to stay around 102-103 and I would like to regain at least 10 or 15 lbs but I am determined to do so without eating refined carbs. I have seen too many people get too low and try to remedy it with stuffing themselves with lots of carbs and it bites them in the butt. I fear awakening the addiction and not being able to stop again. I figure that even if I only gain a pound a month by next year I will be up over 10 lbs.
In hindsight I think I would have been well served with a lot more restriction and a longer common channel. Mine is 200 cc now, from 100 cc, and I have no issues at all with gas or diarrhea. In fact I take Miralax daily for constipation. This is after nearly 8 years without ever having a solid stool. The terrible odor is gone, too, unless I overdo the sugar alcohols. I think the chronic bacterial overgrowth was because of the way my surgery was done. The surgeon had not done many DS's at that time and really didn't like the surgery so I think he intentionally gave me a large sleeve to compensate for the malabsorption. I now understand why it's so important to have a very skilled and experienced surgeon to a DS. In 2002 there were no vetted DS surgeons. In fact there wasn't even a dsfacts.com. I had no clue that my surgeon was not a good DS surgeon.
If I was doing things today of course I would have made different choices but what's done is done and I just make the best of what I have. I consider myself very lucky. It could be a lot worse. The scary thing to me is that there is no going back for me. Six months after my surgery I learned that my remnant stomach was removed, along with my pyloric valve. I have no memory of being informed that this would happen and I don't recall signing a release but, as I said, I was in bad shape at the time. I really believe that if I knew that I would lose most of my stomach I would not have gone through with it but at that time I was so sick and so desperate to feel better that I don't know what I would have done.
I still feel the DS is the superior surgery and would advise anyone to look into it. But I also warn them to make sure that they get the best surgeon they can. It really does make a difference. Maybe it doesn't make a difference when you have your tonsils taken out but to have your guts rearranged in the complicated way that you need to with a DS you want no one but the best. It's not time to choose a surgeon who had only done a few of the surgeries because, after all, everyone has to start somewhere. This is not a surgery you want to have done by someone who needs to build up their skill. My surgeon didn't even do my surgery. I had my surgery at a university hospital and I was operated on by a resident under the surgeon's supervision. Nice. Not only did I have an incompetent surgeon but an even less competent resident rearranging my insides. No wonder my results were less then stellar.

[So Blessed]

Mar 15, 2012 15:16:12 GMT -5 SuzeW.A. said:

I really wish I had done more research on the band before I had it in. It worked fine for about 6 months and then no matter how little was in it, I would constantly throw up healthy food and be stuck living off high caloric junk that slides thru my band. But then again, I know a few people who have kept it off for 5 years or more with the band. I totally agree that everyone is different, personally I can't wait to have my DS.

Do you have a surgery date yet?

[So Blessed]

Ladytaz, I don't let residents touch me. I'm funny like that. I understand the need for them to learn, but they can practice on some other poor sucker. I have no objection to them observing a procedure, but I make my expectations clear to the attending physician up front. If that's a problem, I can find somebody else.

[Ladytaz]

Mar 16, 2012 13:22:35 GMT -5 So Blessed said:

Ladytaz, I don't let residents touch me. I'm funny like that. I understand the need for them to learn, but they can practice on some other poor sucker. I have no objection to them observing a procedure, but I make my expectations clear to the attending physician up front. If that's a problem, I can find somebody else.

Yeah, I learned that. A lot of things I wish I had known before. In 2002 it wasn't emphasized about how complex the DS was and how much skill it took to do it. I thought anyone with a scalpel was qualified to perform it. I wish I had a wayback machine to go back in time

[elenamurray1]

So much more information out now and that makes it so much better! I wish I would have known even half of what I know now!

[Ladytaz]

Mar 16, 2012 16:51:22 GMT -5 elenamurray1 said:

So much more information out now and that makes it so much better! I wish I would have known even half of what I know now!

I see you had a gastroectomy, too. Why did you have it?

[elenamurray1]

I was in pain for so long and my former PCP would just send me for blood transfusions when my levels were bad. I should have been seeking out other opinions all along. I had several bleeding ulcers that meds werent helping. The surgeon who I see now knew something was going on in my remnant stomach because of the blood lose. When he oponed me up, he said it looked like swiss cheese, and had to remove my stomach.

[Ladytaz]

Mar 16, 2012 22:55:59 GMT -5 elenamurray1 said:

I was in pain for so long and my former PCP would just send me for blood transfusions when my levels were bad. I should have been seeking out other opinions all along. I had several bleeding ulcers that meds werent helping. The surgeon who I see now knew something was going on in my remnant stomach because of the blood lose. When he oponed me up, he said it looked like swiss cheese, and had to remove my stomach.

I'm sorry to hear that. Did it take care of your problems?
Do you have any stomach left? My surgeon left a pouch and removed the rest.

[Brandilynn]

It is a big decision, and my heart hurts for folks who really do think forever 2 bites is enough and never hungry forever is the norm, and no supplementation is okay and that shit does not happen just because you only have a smaller stomach.

Or who really think "nothing tastes as good as thin feels" is really going to get them through the bad times.

[elenamurray1]

Agree 100% Brandilynn.
Ladytaz, I have about 10% left. If he had to remove it all, he was going to try & create me one. So far, doing pretty good. I have had to go back now for three dialations to open my esophogaus up, but not too bad. I feel so much better than I did a few months ago, though some days still kinda suck. I def take protonix and carafate eveyday. Have had the iv therapy just once to reduce a new one. My quality of life is getting better everyday, and my new dr and surgeon really take good care of me.

[Brandilynn]

*squeeze* Elena. I am glad you do feel better and quality of life is on the rise.

[Ladytaz]

Mar 17, 2012 13:13:26 GMT -5 elenamurray1 said:

Agree 100% Brandilynn.
Ladytaz, I have about 10% left. If he had to remove it all, he was going to try & create me one. So far, doing pretty good. I have had to go back now for three dialations to open my esophogaus up, but not too bad. I feel so much better than I did a few months ago, though some days still kinda suck. I def take protonix and carafate eveyday. Have had the iv therapy just once to reduce a new one. My quality of life is getting better everyday, and my new dr and surgeon really take good care of me.

Glad to hear that. I probably have about 10% left, too. Thankfully I have no issues. No clue why he took my remnant stomach unless it is just standard operating procedure in these cases. I never pushed it because it was already done and nothing could be done about it and I would probably just get angry. I was so sick at the time I just needed all my energy to get better.
I am doing much better and I am thankful I have had no ill effects. I am totally off all PPI's, no ulcers (just had an EGD) not really any problems eating, haven't gotten sick since the first few months out of surgery. Pretty much the same as before surgery at this point. I do get full much quicker then before but that is all I have noticed. And I don't need to eat as much to feel satisfied. I just hope it doesn't come back to bite me since there is no stomach left to fall back on.

[elenamurray1]

Oh thanks for the squeeze Brandilynn!
Ladytaz, it sounds like youre doing great! I'm glad!

[So Blessed]

Ladytaz and Elena, I'm glad you're both doing better.

[elenamurray1]

Thank you! I love reading your posts!