Living with Gastroparesis

I post pictures here only so those who think they may have one, have some sort of idea of what one might look like. In any case, my stoma has now become infected, once again. It happens so frequently that I don’t even need to go in for an appointment anymore. I just call my doctor or surgeon and they call in a prescription. It doesn’t bother me so much anymore other than the fact I’m rather drained of energy. I’m OK in the morning and early afternoon but come 4 or 5pm, I sort of hit a wall and start feeling ill and tired (and grumpy). So I try to get everything done before the early afternoon and it all seems to work out OK. The button is still wonderful and all the work that my doctors and I put in to get one for me, is still completely worth it. I LOVE it and recommend anyone with a tube to get one, if possible.

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!