It is with disappointing news that I have to say my second celiac plexus ablation did not work. I was so bummed. The pain returned and I have not been able to eat much food. Mostly because of pain but also because I have completely lost my appetite. I am no longer eating bad foods and doing gluten free again which helps some of my pain so food doesn't taste as good anymore. I have lost my appetite so many times that now I know I have to eat and I am drinking two to three protein shakes a day for nutrition. I have been cheating this week since I did not eat much and had two quesadillas, not gluten friendly. I was so hungry and that is what I wanted. I also have been eating a lot of gluten free pizza from papa johns. They are expensive and tiny but every weekend I have my small pizza to get some food in so my stomach does not completely stop working.
I have started the process to get approved for surgery. The doctor has ordered a colonoscopy, endoscopy, ercp, a breath test, gastroparesis testing and something else I am blanking on. Once all this testing is complete, we have more diagnosis or we do not, I will then go back to a surgeon in California to see if I can qualify for MALS surgery. As mentioned in previous blogs it is a horrendous surgery and the recovery time is long and tedious but I can not live like this. The pain is awful and even getting worse when I sit up too long. It has been a mess.
We have repeated the celiac plexus blocks and those are holding off the bad pain so I am able to tolerate protein shakes and some food. Most days I barely eat but it depends on how much marijuana I use. I have been back to work so I am not able to use marijuana like I was so that also does not help my case because I am sitting up longer each day and then I am not hungry but I am eating cobb salads at work with no dressing and no cheese! That gets food in me plus my protein shakes. The pain is there when I eat and worse when I eat my salads but I have to eat. Last time I starved my hair fell out, I looked sick and I was so thin. I do not ever want to go there again.
I have a block scheduled for Monday so we will see how that goes. They can not repeat the ablation for up to six months so I have to live this way until we can try another ablation and see if it works. At this point I am at over 50 blocks in three years. Its getting really scary. If these blocks did not work I would not be here writing this blog. I keep fighting though. I refuse to give up.
I wish all the best for my fellow MALS fighters. What a horrific disease to have. Pain when you eat food, not just pain but feeling like you are dying pain because you do what people take for granted every day.. eating.