Written by Jacob Wittorff and Stefanie Wagner

How did you lose weight? OIFE Magazine has asked this question to four people with OI who have struggled with overweight and successfully managed to lose weight. One of them is Lena Engan. She is 45 years old, from Norway, has OI type 1, and lost weight through a gastric bypass.

Tell us about your situation before the weight loss and what kind of problems you had.

Before the gastric sleeve, it felt like all I could do was to stay alive. I had a lot of pain in my body, especially my back, considering I have had quite a few vertebrae fractures. It was especially bad 10 to 12 years ago, when I had broken the five lowest vertebrae at the same time. I had to use crutches for a couple of years and take strong painkillers.

Before I lost weight, I was not very mobile. I could walk, but not far, maybe one kilometer at most. I did not have much stamina either. I got tired, warm, and short of breath very fast. I was using strong painkillers every day and felt in a way trapped in my own body.

What did you do to lose weight?

I contacted the hospital’s clinic for overweight people. Together we decided that a gastric sleeve operation could work for me. In that kind of surgery, they remove about 80% of the stomach, which means you live with a mini stomach. This means you can eat very little food before you are full.

How did it work?

The first few days after the surgery were pretty bad. I was very nauseous, tired, and unwell. After having a gastric sleeve surgery, you are not supposed to eat solid food right away. The first couple of weeks you should have only liquid food; after that you can eat food that is mashed. On Christmas Eve 2020, I managed to eat a tiny portion of mashed Christmas dinner.

The new everyday life consisted of many small meals, five to six every day. My walks became longer and longer. I even managed to stop using any painkillers. The kilos vanished, and my body naturally felt much lighter and filled with energy.

I could suddenly go for walks several kilometres long, and the summer after, even climb small mountain tops. I ended up with a normal BMI, and my total weight loss was 35 kilos. That is quite a bit considering I am only 1.59 m tall.

If I am to find anything negative to say about the surgery in my case, it is that I am not very good at drinking enough fluids throughout the day. I find it hard to drink enough water, since I eat often and that makes my stomach full and leaves no room for water. I also struggle with acid reflux and take antacid medication every day.

Do you have any advice to others with OI who are struggling with weight?

I feel it is hard to give advice to other people with OI when it comes to losing weight. It is very individual what you need, can manage, and wish for. In my case, I needed a tool that involved having surgery to reach my goals. Such a surgery is not a quick fix! You have to be careful to follow routines regarding food and activities the rest of your life.

There is always the possibility that you end up in old habits and expand your stomach again unless you are careful. I have never regretted my choice. It gave me a better life and less pain.