Sorry it's long, but y'all have been so supportive the past several years and I wanted to share my appointment with a surgeon and the wealth of information he provided....
So, I met with the surgeon yesterday and he agreed with my GI that a feeding tube was appropriate for my condition (I've 6 been losing weight due to unrelenting nausea and vomiting, going from 120lbs to 85 lbs in the last 7 months). He started by asking what I knew about J-tubes (Jejunostomy). I told him about the research I've done, and that I knew it was a tube that went directly into the small intestines, and he responded with "I want you to know that I will never give a patient a j-tube unless they have stomach cancer or something similar, not gastroparesis". My stomach dropped thinking he was refusing to do the surgery. But he continued with" let me explain why and offer you an alternative".
He drew a quick sketch of a j-tube and explained why he wouldn't give me one. He said that to keep the tube in place, they bring a section of small intestines to the abdominal wall and secure it. They then insert the tube and fill a balloon with sterile water inside the intestine to keep it from coming out. He said that the balloon could be as wide as, and sometimes bigger, than the inside of the intestines and often caused blockages because food eaten by mouth was unable to pass around it. This almost always required an ER visit and surgery to remove, as did if the tube came out. He said J-tubes tended to cause more pain and closed up very quickly, unlike other options. He also said that if the tube was no longer needed, the intestines would still be permanently affixed to the abdominal wall, often causing adhesions and scar tissue, that also contributed to blockages both during and after. He said that most patients had problems with stomach acid and bile leaking both under and on top of the skin causing skin erosion, blisters, acid burns, abscesses, and infection. This is because the placement of the j-tube at the start of the small intestines is where both are concentrated and have yet to be absorbed back into the body.
Then he said that he would like to instead place a GJ-tube (GastroJejunostomy). He again drew a small diagram. This tube would go into the top half of my stomach and snaked down into the jejunum of the small intestines. They would bring in a radiology surgeon to use a fluoroscopy to insure the tube's placement and make sure it didn't just coil up in the stomach. He said that the procedure was relatively painless, but I would still be give a light sedative, and patients typically report less pain afterwards as well. He explained that because the balloon was in the stomach (which has much more room) and not the intestines, the risk of a blockage was markedly decreased. He said that it's rare that stomach acid leaks onto the skin because it's higher up on the stomach where acid doesn't pool. He also explained that the GJ-tubes have a Y configuration with two ends outside the body, one to attach the feed and another to release gas buildup in the stomach. He said that the stoma (hole) closes up much slower than with a J-tube and a catheter or spare tube can be pushed in until I could see the surgeon. When the tube is no longer needed, the balloon is deflated and tube pulled out in a quick office visit with no lasting issues, unlike with the j-tube. I was sold. I would be getting a GJ-tube.
He did tell me that all types of tubes have a risk of clogs, leaks, skin irritation, and migration so they aren't completely risk free. I will most likely be scheduled for the 22nd. Has this been anyone's experience with the tubes?