Gastric bypass, please be gone…

By Tatjana van der Krabben

I’ve been holding off on writing this blog for a few years. I’m biased. I’m biased because I’ve watched a close friend – as well as others – being reduced to shadows of their former selves after gastric bypass surgery. So, at this point, having watched them going through hell, knowing there is NO way back, because it’s irreversible, there frankly are not enough successful cases in the world to make me change my mind.

Lately I’ve noticed quite a few lipedema patients are being referred for gastric surgery. Also having serious, objective points of consideration on the subject, I feel I need to come forward. So please excuse my lack of nuance this time around.

1.       Referral is usually because of suspected obesity

Lipedema is not obesity. It’s not caused by overeating. The whole motivation behind the referral stems from a false mindset. When bringing up their concerns and questions regarding weight loss specific to lipedema limbs doctors a. turn out to be oblivious about lipedema, b. don’t respond to patients who indicate they eat little as it is. Eerily, when presented with this additional information, the recommendation usually still stands. I’ve never heard of a doctor taking it back.
As for results: reduced leg size is reported, but it doesn’t take the lipedema away. That’s because calorie restriction doesn’t fix lipedema.

2.       Gastric bypass surgery equals malnutrition

With the stomach reduced to an unnaturally small size and the small intestine being shortened, you will be unable to digest enough food to sustain yourself. I’m talking nutrients here, not fuel to prevent you from burning fat. You will need to supplement. That’s a given. Especially B12, calcium and iron are a problem.

3.       But you already needed to supplement?

You have lipedema. B12 quite possibly already was a problem. And some. Even when supplementing it can be challenging to keep symptoms of vitamin and mineral deficiency at bay. Gastric bypass surgery will add to that challenge.

4.       Do you need it?

Lipedema can coincide with eating disorders and/or obesity. Fair enough. But the whole procedure is created around the assumption you are overeating and unable to restrict yourself to the point you can bring your weight down. But many of us actually eat very little if not too little as it is. Suffer from undiagnosed thyroid problems. As already indicated, lipedema is not caused by overeating. If you don’t overeat, what is the point?

5.       Surgery damages the lymphatic system

Every surgery impacts the lymphatic system. Gastric bypass surgery is rather invasive. In lipedema management damage to the lymphatic system is not exactly welcomed. There’s no research on this issue. Most likely the surgeon involved doesn’t know about lipedema. Then who will advise you properly on this particular aspect?

6.       Gastric surgery doesn’t fix everything

Gastric surgery ensures reduced portions food-wise. It doesn’t cure inflammation. Only the type of food you eat can help in that department. It doesn’t prevent you from making poor diet choices; you could still eat pudding all day long.  It doesn’t fix an urge to soothe yourself with food; whatever underlying issue has triggered that need, won’t go away.

7.       Is it ethical?

Is gastric bypass surgery ethical? I wonder. Presumed healthy tissue from the small intestine is removed. Now I’m this nature freak, true, but isn’t it odd to remove parts of a healthy organ? Also, the stomach is being reduced to such a ridiculous small size, you can’t digest enough food to provide yourself with enough nutrients. Especially with the reduced intestine, which you need to absorb vitamins and minerals. You essentially get rewired for malnutrition. And it’s irreversible. Frankly, I can’t wrap my head around this package deal.

I’m not getting into risk of complications and the mortality rate. Like I said: I’m biased. Every surgery has its risks and statistics vary per conducted study and clinic.

There are other options. If you are willing to consider bariatric surgery, it doesn’t have to be a gastric bypass. Gastric banding is far less invasive, less connected to vitamin and mineral deficiency and reversible if need be.

Love and Relationship with Lipedema

by Scott Routon as told to Christina Routon

I met Christina in third grade. She'd moved to my small town in Georgia after her father separated from the military. I was fascinated first by her hazel eyes and by the fact that she was wearing a skirt when most other girls in school wore jeans every day.

We became best friends, and on Valentine's Day in third grade Christina asked me to marry her, and I said yes.

We had some growing up to do, of course, and as time went by and I switched schools we saw less of each other. Then one day this beautiful young woman stopped her car and asked if I needed a ride. We spent the afternoon together and ended up dating for the next two years before getting married in 1990. I was 19, Christina was 18.

There was a sexy librarian-sharpness about her that intrigued me. She's one of the smartest people I know. There was something I found fascinating about her, I can't put it in words. We did have our differences and our issues, though, and while I was in the military and away from home I sent her a break-up letter. I had second thoughts, though, and called her. I couldn't imagine being without her, and I didn't want her to be with someone else, and this time I asked her to marry me.

When I saw Christina on our wedding day, she took my breath away. She was beautiful. When we did the garter toss, I did notice she'd only put the garter up to just under her knee. I didn't know why. I knew Christina had been complaining about her weight and her legs, but I didn't see anything wrong with her. I love curvy women, and I liked seeing her in dresses, skirts, shiny hose and heels. I didn't see anything wrong with her legs. They were just part of her.

Over time, I did notice Christina was gaining weight and some of the clothes she wore didn't seem to fit as well as they used to. We didn't know anything about lipedema at that time. When Christina gained weight when pregnant with our son, that's when I noticed a change in her legs. I was concerned, and I still thought she was beautiful, but we both figured that after the baby was born she would lose the weight and she'd look the way she did before. She's always had a pear-shaped, hourglass figure that I love, and I did want her to get that back.

When we moved to Alabama and Christina joined the gym, I'd never known anyone to work harder. She was going to the gym almost every day, running on the treadmill, lifting in the weight room. She and those other ladies kicked my butt in the spin class! I couldn't keep up, and that blew my masculinity to pieces. But we were both concerned when she continued working out and cutting out junk food and yet only lost thirty pounds during those two years. That was when we started to suspect something else was going on.

I'll never forget when the jerk online said something about her legs. She'd been posting on a well-known bodybuilding forum and had asked for advice about her program. Christina was discouraged because her legs weren't changing no matter what she was doing. This jerk came on the board and replied to her post, basically calling her a liar about her workout and diet and saying horrible things about a picture she'd posted on her profile page. This was one of those times I wanted to hunt someone down and hurt them they way they'd hurt my wife. She cried for a long time and came very close to giving up everything she'd worked so hard for.

This was also the event that made her want to seek out more information. She'd struggled for so many years with her weight and her legs. The way her legs looked was so tied to her self-image that it did affect our relationship and our intimacy. I've always believed she was beautiful and shapely. It didn't matter that I told her she was beautiful and I loved her shape and yes, even her legs. I hated that she didn't wear skirts or dresses anymore and wanted to hide her body from me. When she talked about seeing an endocrinologist to find out what else may be going on I supported her decision.

When Christina started taking medication and she finally started losing weight, we both had hope. I wanted her to wear dresses again. I wanted to get her a pair of boots to wear with a skirt and tights. But when her legs didn't change that much, the doctor said lymphadema. Christina, ever the researcher, began to search for answers and that led us to lipedema.

Everything she found said no cure, no treatment. I was furious, I was upset. It was unfair. It's hard to explain how crushed I was. I felt I'd never get the Christina I'd known back. I still loved her very much, but it was hard. And she'd been working so hard to lose weight and I wanted her to look the way she felt.

For Christina, it had a name and that was a relief. But I need an enemy I can fight. This was something I couldn't conquer. It was hard to accept, and I needed hope. I needed to hear something, anything, besides to accept it and get through it with God's grace. I needed to hear God can and will heal, that's there's medical treatment, something.

When Christina started the wrapping therapy, it was hard for me to see Christina go through it day in and day out, but it made me feel proactive. I felt like we were doing something and that felt good, it gave me hope, and I could let some of this anger out.

I'm still angry that there's no medical treatment or a lot of research in the United States for this. I also hate that a lot of plastic surgeons don't know about this or if they do, many won't touch it because of possible physical complications. I hate that many doctors don't know about this and continue to hurt and discriminate against women who have this disorder.

I completely support liposuction as a treatment for this, and if Christina and I have to go to Germany to have it done then that's what we'll do. Until then, we'll continue to learn as much as we can, continue to experiment with diet and exercise, and even if I have to have a pair of boots custom made, I will see Christina in a skirt and boots one day.

Liposuction as a medical treatment

By Tatjana van der Krabben

Liposuction can be applied as a medical treatment. I’m not referring to treatment of psychological issues, but liposuction as a surgery to help improve a physical condition called lipedema. I speak from experience: I’ve had four treatments. Why four? What has been treated extends well beyond the usual bikini issues treated with liposuction. I was treated section by section. The aim of these treatments is to have fat removed that will not budge when on a diet. In fact, I’m done with diets as such. My adapted food regime is a lifestyle. Like with diabetes, lipedema requires a permanently adapted food regime to keep the condition in check. The excess fat on the legs and quite often also the arms causes pain and discomfort. As we grow in size, the pain increases and mobility decreases. Removing fat takes away from the pain and discomfort and enhances mobility.

This sounds very straightforward, but there’s a catch: liposuction is not a cure, it doesn’t tackle any causes. Afterwards you could still gain. Also, it’s usually not reimbursed by insurance companies and doctors are mostly unfamiliar with this option and won’t refer. Lipedema is therefore in relatively few cases treated with liposuction. The option is more available in Europe, mostly Germany, where quite a few plastic surgeons and dermatologists perform liposuction on lipedema patients.

There’s one more catch: generally you get your treatment in the private sector at your own initiative. It’s easy to get caught up in glossy websites and luring advertisements that promise ‘easy, little invasive liposculpture’ or something. Wrong: It’s not easy, it’s invasive and it’s surgery. The lack of knowledge regarding this option, both with respect to its existence and what it entices, has prompted me to approach the media. The Dutch magazine Libelle (issue 46, 2012) has featured a  story regarding my experiences after my first liposuction. Below you find a translation of the article.

Note: since the article doesn’t feature pictures or any other images no scan of the original article was added. Also, I came well prepared for this surgery and expected pain, the secretion from the cuts and swelling. The surgeon send me home with stronger pain medication just in case, yet actually experiencing it was something else. For informative purposes the article contains more question marks than I actually had in the moment.


The day after….I had liposuction
Tatjana (39): “It’s 9.15 when the surgeon’s phone call wakes me up. He wants to know how I feel after the liposuction treatment I underwent yesterday. I feel horrible, did not anticipate to be in this much pain. I tell him and explain the compression pantyhose I’m wearing is soaked with blood and fluid. Fourteen small cuts were made in my legs and they are still secreting fluid. He recommends painkillers he gave me. He explains the oozing is normal, but I can shower, provided I don’t take off the pantyhose. My husband assists me when showering and is feels great to rinse my body. Afterwards I blow dry the pantyhose: a hint the surgeon gave me. Next I get back into bed. My legs are stiff and sore and I have trouble bending my knees. I kill time reading and chatting on my laptop. I also call my mother, who’s taking care of my children today. I don’t want them to see me this way. My mother offers to take them one more night and I’m grateful for the offer. I look at my upper legs. I know it will take weeks before the worst of the swelling is gone and before I’ll be able to tell if the surgery was a success, but I can’t resist looking at my legs. I want the surgery to be a success so bad, to regain mobility and be rid of that continuous pain in my legs. It scares me that my legs now look worse than ever before and cause me more pain than ever before. Stories of failed surgeries I read about online shoot through my head. But something had to be done.

During my first pregnancy I gained 23 kilograms. The last trimester I could barely walk because of the pain in my legs. I thought it would be over after the pregnancy, but after giving birth I lost weight everywhere but on my legs. Lipedema, my physiotherapist concluded, a hereditary condition that aggravates under the influence of hormonal changes. After my second pregnancy it became even worse. My upper body was two sizes smaller than my lower body. I could only walk short stretches and it was hard for to me to take care of my children. That was my biggest motivation to see this surgery through: I just wanted to be there for my kids. It’s 16.00 already. I hardly ate anything. My husband asks if I feel like having sushi, he knows how much I love that. ‘Yes please’, I say. I check my legs again and notice the oozing has thankfully stopped. I find it hard to accept it will take weeks to learn more about the result, but I will just have to accept that. By 9 p.m. I go back to sleep, I’m exhausted. I can only hope for a good outcome. In the end I will need two more surgeries to  get my legs in better shape. But my life will get better. In a year I will be able to do my own housework again, take on activities with the kids and exercising becomes easier. My legs will be much thinner and my new shape makes it much easier to shop for clothes.”