[jillybean]

I did it--I've started taking steps toward having weight loss surgery to hopefully send my diabetes into remission. I've contacted my insurance company to find out the requirements for pre-certification, thoroughly reviewed the different types of surgery available, researched surgeons who specialize in the surgery I want, talked to my doctor, and registered for an information session with the bariatrics unit at Johns Hopkins. Work has been slow, so I've basically become consumed with researching; I've compiled a binder of information as to why I want this specific procedure, copies of clinical studies supporting (and used to determine) my decision, insurance requirements, surgeon information, pre- and post-op requirements, and my health history. You can get a lot accomplished when you have 10+ hours a day and the internet

I am hoping to have a biliopancreatic diversion with duodenal switch (BPD-DS, often refferred to as just duodenal switch, or DS). Studies have shown a greater than 90% rate of success in "curing" type 2 diabetes with this procedure (I hesitate to use the word "cure" without quotes since studies have only been conducted for up to 15 years after surgery, so longer-term results are not yet available). This is a higher rate of success than any of the other weight loss surgery procedures available. This procedure also has higher success rates for excess weight loss and maintenance of weight lost than either the bands or the typical gastric bypass (the Roux-en-Y, or RNY).

Life will never be the same after surgery, but it instantly changed for me with the diagnosis of diabetes as well.

[fgummett]

Wow... a big step, and I imagine you have mixed emotions. It sounds like you are doing all the right things. Will John Hopkins be able to put you in touch with some of their previous patients or is that a confidentiality issue? I hope your insurance has no problems.
I'm excited for you and more than a little envious too, I must admit. Good luck Jill! and please keep us posted as it unfolds.

[jillybean]

Originally Posted by fgummett

Will John Hopkins be able to put you in touch with some of their previous patients or is that a confidentiality issue?

I've actually been able to read about other patient's experiences on another forum website. I have read comments/reviews, blogs, and forum posts by other patients who used the same surgeon, plus I am actually meeting with a group next weekend for lunch who all had the surgery, including some who used the surgeon I am hoping for. I will also be able to attend support groups with post-op patients before I go in for my surgery.

[adiantum]

It's sounding great Jill. heaps of good wishes from me

[fgummett]

Originally Posted by jillybean

I've actually been able to read about other patient's experiences on another forum website. I have read comments/reviews, blogs, and forum posts by other patients who used the same surgeon, plus I am actually meeting with a group next weekend for lunch who all had the surgery, including some who used the surgeon I am hoping for. I will also be able to attend support groups with post-op patients before I go in for my surgery.

Excellent... you can read as much as you want on the internet (believe me I have.. even watched some surgery videos!) but there is nothing like first hand experience. I sincerely wish you all the very best

[Samantha]

Wishing you the best of luck .

I am new to this D or i'd comment more .

I've never heard of pancrease surgery for D , could you be more specific ? Sounds promising .

[Scrabblechick]

Good luck with your surgery, jillybean! I've thought about it myself, but I just don't know...

Anyway, prayers going up for you as you go through this process!

[jillybean]

Originally Posted by Samantha

Wishing you the best of luck .

I am new to this D or i'd comment more .

I've never heard of pancrease surgery for D , could you be more specific ? Sounds promising .

It's not pancreas surgery--it is actually weight loss surgery. Sudies have shown that obese patients who have type 2 diabetes and who have the surgery I am hoping to have (DS) have a greater than 90% chance of sending their diabetes into full remission.

And it is not due to the weight loss--it happens when they re-route the intestines so food does not travel through the duodenum, which is the first part of the small intestines.

Because it has been so successful in treating the morbidly obese type 2s, they have started performing this surgery on normal weight type 2s in other countries (and in clinical trials here in the U.S.) without alterring the stomach so they don't lose too much weight, and it works to "cure" their diabetes as well.

In a longer-term study, patients who had weight loss surgery and type 2 diabetes prior to surgery have an average a1c of 5.0 still 15 years after surgery.

[jillybean]

Originally Posted by Scrabblechick

Good luck with your surgery, jillybean! I've thought about it myself, but I just don't know...

Anyway, prayers going up for you as you go through this process!

Thanks for the support! I never would have done it if I were just overweight, but having the diabetes and elevated blood pressure and triglycerides makes for too many medications for me. Having already lost some weight (about 20 pounds since actual diagnosis, 32 pounds down from my highest weight), it hasn't improved my glucose readings at all, and even when I stay on my low GI diet for the diabetes, I keep stalling at certain weights for weeks or months at a time. I've lost big chunks of weight before only to gain it all back and then some, so I think it's time I admitted I need some help!

[Jan B]

Jill,

I'm really concerned for you over this. I'm glad that you have done a lot of research, but when I started reading about it I got a little scared.

You said you have a problem with taking so many meds. After this surgery, you will be taking even more meds to prevent malnutrition, anemia and osteoporosis.

I copied the following from Surgicallyslim.com:

Living with the BPD-DS
It is necessary to take a number of nutritional supplements after the operation than after gastric bypass. These include:

Multivitamins (usually twice per day)
Iron supplements (usually twice per day)
Calcium (usually twice per day)
ADEKs (fat-soluble vitamins) usually 3 times per day

Additionally, there are some very significant side effects that accompany this procedure, including:

Frequent soft bowel movements (up to 4-6 per day)
Frequent passing of foul-smelling gas
Change in body odor
Gas pains and bloating
Hair loss
Intolerance of certain foods (varies from person to person)

Granted, I'm not overweight, but my dad is. He has a BMI of about 40, and he has T2 diabetes. I would be scared to death if he were to do something like this.

[Jan B]

It also seems your life is going to change much more dramatically with this surgery than w/T2 diabetes. It's irreversable and there are no long term studies . . . and you are so young!

I spent over an hour reading different sites, and I hope you can see both sides, not just the side with the good points. What would you think if your closest friend, or sister was going into this?

Sending you the best,

[jillybean]

Jan B, I appreciate your concern. The difference between taking medications for the rest of my life versus taking nutritional supplements is that the supplements are not as difficult for thebody to process since they are needed anyway. Years of processing medications is hard on the kidneys and liver.

Additionally, studies have shown pregnancies to go MUCH better after weight loss surgery than if the mother were to still be obese and diabetic. I plan on having 2 children, and I have been reading a lot on a forum specifically for mothers having children after WLS--some having twins, some having as many as 5 pregnancies after the surgery, and all are going well. It requires more nutritional supplementation than a normal pregnancy, but most of them don't even develop gestational diabetes even if they had type 2 prior to surgery, and as long as the mothers keep taking their supplements, all babies are healthy and fine. I even already have an obgyn who specializes in high-risk pregnancies, and I'm not planning on getting pregnant for another 3-4 years!

The hair loss typically happens for a few months during the peak of the wieght loss. Rapid weight loss can happen for up to 2 years after the surgery (usually more like 12-18 months). Many have been able to slow or even stop the hair loss with additional zinc supplementation, and I've not read of anyone who has lost all hair, just had hair thin out post-surgery, but it grew back later.

As for the gas and bowel movements, that is very highly individual. Some post-op patients have found that taking probiotics helps this problem tremendously. I can say that right now, on the Metformin, if I eat something I shouldn't, I certainly have, umm, loose stools and gas issues! For many post-op patients, it is only certain foods that cause a lot of these gastrointenstinal issues, and they are easily avoided.

To me, it is worth the risks and trade-offs. This is why I am doing it now rather than waiting until after I have children. I am not married, no kids--I can take the time to care of ME or, god forbid, should anything go awry in the operating room, I don't have little people who depend on me.

I DO know people close to me who have had these types of surgeries. I know how important it is to understand the risks and lifetime changes, not just the possible positive outcomes. I know how important it is to research, research, and then do some more research, and I personally think it is VERY important to not just rely on clinical studies and medical journals, but to also talk extensively with other patients who have had this exact surgery to know how it has changed their lives.

I can take nutritional supplements forever, or I can take medications (metformin, insulin, etc.) forever. I can eat low-carb forever since that's what works for my glucose control, or I can avoid the specific foods that upset my stomach. I can worry about malnutrition, or I can worry about losing a foot, my eyesight, a kidney, or any other number of things. I can continue to eat low carb and count my calories to lose this excess 150 pounds on my body and STILL end up having the type 2 when I'm at a healthy weight. Either way, I will need regular medical follow-up for the rest of my life.

For me, this is the right choice. I never said it was right for everyone. There is the potential of lifetime complications either way. Being as young as I am, I have a greater chance of diabetes-related complications even if I do work hard to keep my hba1c below 7.0. Eventually, my beta cells will burn out, and I'll have to keep taking more and more medications. I can't even control my diabetes with just diet and exercise now at 25--there's nothing to make me think it will improve as I get older.

Plus, yeah, I have about 150 pounds to lose to get down to a healthy BMI. Despite trying many different plans, I've never been able to even get down to 250 pounds as an adult. I've been overweight since I was maybe 4 years old and over 200 pounds before I hit high school. I've donw low-carb and calorie controlled plans before and couldn't get below 260. I have weighed as much as 322, and every time I lose weight, I end up gaining back all of it and then some, which is actually worse for the body to keep going up and down than it is to just stay overweight. I need help with the weight control and the diabetes, blood pressure, and triglycerides.

Anyway, that's how I feel, and that's what my research has shown me. I have been searching, but I have been hard-pressed to find people who have had this procedure and regret it, even if they have had post-op complications. Most say their only regret is not having had the surgery sooner.

[Jan B]

Jill,

The really bad thing I see then is . . . . you not telling us all how it went and how you are doing after the surgery! I know, you don't know when it's happening yet, but do keep us informed!

It's also obvious you have your head screwed on straight. You are a smart girl (woman) and I wish you the absolute best outcome. It will be fun to hear about your progress too. Your maturity will definitely help you. You sound like a very smart planner -- when you are ready for marriage and children, all your energy won't be spent on yourself, but more on them. Plus, you should have more energy to give. It's also obvious to see that you don't think this is an easy way out of your predicament. It's another battle, but one with potentially much better results.

I'll remain concerned, but I also feel happy for you. Just make sure you don't leave DF! I look forward to your inspiring story in weeks and months to come.

[jillybean]

Thanks, Jan B! You know, it's great when people ask questions or express concern because it really gives me the chance to think things through again, too. The more thinking and researching, the better off I will be!

[fgummett]

Hey Jill, in your investigation of this surgery did you come across the Laparoscopic Sleeve Gastrectomy..? I ask because, that is all my local hospital currently offers.

There is no re-routing of the intestines, so they claim; fewer post-operative complications, plus no dumping or malabsorption issues. By removing the fundus of the stomach and reducing it to a banana sized and shaped tube, you not only feel fuller much quicker but there is also a reduction in the secretion of Ghrelin... a hormone which controls the desire to eat.

I could see this being a significant weight loss tool and longer-term (few months?) improvement in overall health including Type 2 D, but I'm not so sure it is the optimal for immediate Type 2 D remission. Still, if it my only surgical option... swings and roundabouts of a socialised health system I guess