At age 22 while living in Mongolia I developed a severe chronic pain condition that effects every aspect of my life. Continuing this blog reminds me that life's challenges are stepping stones meant to lift us, not roadblocks meant to defeat us.

Friday, December 17, 2010

SMA syndrome, and Gluten Free

Sorry its been so long. I had surgery at the end of September to take out my hyper active gallbladder and check for evidence of celiac disease, but the main reason for surgery was to correct something called SMA syndrome. Apparently it is very rare, and it is caused by rapid extreme weight loss. There are certain fat pads in the body that help hold things in place, and I lost the fat pad that held up my superior mesenteric artery. It blocked my intestines, pinching off the duodenum right outside my stomach. I cant remember how much space there was but it was something like less than 8 millimeters. That is why I was never hungry and why I couldn't eat very much at all, unless it is surgically corrected it is permanent and gets serious, as you literally can't eat and you starve. I think it is a miracle that the doctor thought to check for it, he was briefing me for the gallbladder surgery and as I was walking out the door he thought to check for this, on the very small chance that I had it. Tests then showed I had it pretty severely, and I am SOOOOOO grateful that I didn't need to have surgery twice ;)

The surgery was a success but because my nerves are hyper active the pain was difficult to control, I was in the ICU for a few days for pain control and ended up getting an epidural. I always expected surgery to be tough but there are all these things you don't anticipate that made it one of the roughest weeks of my life, I feel for all those out there who have had similar or worse experiences. I'm grateful I didn't know how bad recovery was going to be or I wouldn't have been nearly as excited about surgery haha. I had to withdraw from school last semester, and have been focusing on recovery ever since. The Celiac Disease was confirmed and blood tests showed that I have the type that attacks the nervous system. I have been on that strict diet since October, I've stopped loosing weight (still not gaining), and can eat more than I could before. Surgery fixed some of my bad right side pain, but I still have chronic pain pretty bad. This past week I could tell my energy and physical endurance was a little better, and that is exciting ;)

It has been over a year since I got sick, and it is interesting looking back over the whole year, and see that I didn't "do" much at all. And even though I wasn't able to take classes, I have learned so much. It might be months to years until I am back to normal, but I now do believe that I really will get better. I will rejoice and thank God every day that I wake up without pain for the rest of my life.

So, i'm learning a lot about Gluten free diets! Apparently it is way more common, and its symptoms way more broad than doctors anticipated. The typical blood test is inaccurate over 20% of the time, if you or a loved one is struggling with anything from IBS to fatigue that can't be explained, maybe ask a doctor to think about Celiac disease, and do more than just one blood test. I love suggestions for meals or anything, and I hope in the future to be able to help those diagnosed with this. Hope you all have a great week and enjoy the holidays!

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