Life Update

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I know it's been a while since I have written, but I wanted to take a quick moment to give a little life update. First of all, it's been almost 9 months since my surgery, and I have continued to make progress every day since. It's been sort of surreal. 9 months ago I was barely able to keep down 50 calories a day, and here I am now at nearly 1700! I am so proud of the progress that I have made.

I currently still have my feeding tube, but for the past couple of weeks, with doctor approval, I have not been using it. I've been working tirelessly to try and prove to my doctors that I can get enough calories orally (without the tube feeds) so that way I can get my feeding tube out. But sadly, my weight has been consistently declining, and my doctors are worried that if it continues it could lead to nutrients loss & other issues.

Most people might say "well just eat more!" It's easier said than done.

I had a study a few months ago that revealed that my duodenum is still recovering from the damage that my SMAS had done. Since my duodenum is not yet back to normal, it has been limiting the amount of food I can eat and the frequency of meals. I have to eat very small portions, and I have to wait 3 or 4 hours later to eat again. I can't simply just "eat more." If I increase the volume of food that I consume, it makes me feel nauseous and can cause me to throw up. My duodenum is still healing, and it cannot take amounts greater than about a cup. The next solution to calorie increase is adding foods that are high in calories. The go-to is usually healthy fats like peanut butter or avocados. But my diet is limited to small amounts of fat due to the fact that 1) I no longer have a gallbladder and 2) fats take a long time to empty. I'm allergic to dairy and chocolate and I have celiac disease, so those are a few other limitations.

BUT for the past few months I have been working very hard with my nutritionist to find ways around each of these limitations - I am now at 1700! That's pretty darn amazing. I started the year bending over in pain after drinking a sip of water. I've come a long way since then.

I am taking the suggestions my nutritionist has given me, and I am continuing to push myself to get enough calories each day, but it's been difficult to make additional substantial progress. I see my nutritionist again this week, and I am praying that my weight has stayed the same, because I really do not want to have to use my tube again. I've been working so hard, and it would just be so defeating to have to take that step backwards.

While I still have struggles to overcome, one thing that helps me push through is knowing that I am able to help other girls going through what I went through. SMAS is more intense than most people would think. It's painful and frustrating and it's so easily misdiagnosed. I know the frustrations of misdiagnosis and the neglect that some doctors give, and I would do anything to help another girl avoid it.

-LewLew

I suffered from Superior Mesenteric Artery Syndrome and the effects of it.
If you want to read more about my story click here: https://livinlikelewlew.blogspot.com/2019/01/my-story_24.html
If you want to read more about SMAS click here: https://livinlikelewlew.blogspot.com/2019/08/what-is-smas_4.html

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