Living with Gastroparesis

I haven’t updated much here because not much has changed. I’m still recovering, slowly, from the surgery I had. I still have the tube they put in during surgery, the one held in place by stitches. I am not a fan of this tube. It has no clamp, it is very flimsy, it didn’t have a port until I put one in, and of course, it is very unattractive! It has recently gotten infected and I am back on antibiotics.

At least my incision scar is healing up nicely as well as my old tube site. As you can see, the surgically placed tube is much higher up on my abdomen however where it is actually placed in my intestine is lower. So low, in fact, that it isn’t accessible via endoscopy. Any changes to my tube will require surgery or interventional radiology. My tube size also changed to what I think is 18FR even though some of the records say it is 16FR. I hope it is 18FR otherwise getting a button fitted will be more of a challenge.

My doctors are still planning a button change at the end of this month. I’m quite excited for it. I haven’t met anyone who regrets getting a button over having a long tube. So much more convenient and when not hooked up – attractive!

After a long week of waiting, and a painful weekend – they finally were able to identify the strain of Staph and prescribe antibiotics. Hopefully it clears up soon and I’ll be able to stop needing liquid oxycodone just to make it through the night. I’m just thankful it isn’t MRSA and that antibiotics will take care of my infection.

My previous PCP had me on birth control pills to regulate my estrogen levels. I was unable to maintain a healthy level of estrogen and when that happens – you are likely to enter an early phase of osteoporosis. Not something you want to deal with at the age of 26. So I agreed to take them even though I had horrible experiences with them previously. I was put on them the year before for the same reason, shortly after my abdominal myomectomy, so I knew sort of what to expect. I suffer horrible nightsweats while on BC pills and this of course happened again on my new pill. I dealt with it. But a few months in, I began to experience other troubling and uncomfortable symptoms. I looked up the medication online and searched through forums to see if others were experiencing the same thing.

Now I understand that forums are not always the place to go for medical advice, but after years of being ignored by doctors – you get to the point of trying anything. When many of the women expressed the same symptoms as the ones I began developing, I decided to see what happens when I went off the pill. A week and many migraines later, I am actually starting to feel like myself again. I might even try running this week, or at least taking a nice long walk (if it isn’t raining of course, which might be too much to ask of Seattle).