Tests, Tests, and Decisions

It has truly been an overwhelming week filled with too many hospital trips and Dr. visits. By the end of the week, I am totally exhausted both physically and mentally. I can’t believe how much these simple tests are beginning to take their toll on my body.

To start the week off, I had an EGD at IMC with Dr. Frech. The EGD went well. I am so used to having this procedure done that I just through the motions. I check into the hospital and luckily I am Dr. Frech’s first case so I won’t have to wait long. My sisters accompanied me this time. I get ready and am sedated and 15 minutes later I am awake. Dr. Frech didn't find anything to explain any of my symptoms. The anastomosis is wide open and doesn't reveal any form of stricture. He suggests going along with Dr. Rasmussen’s plan of the barium swallow. He would like a copy of the test and wants to know what Dr. R’s next plan is.

EGD Prep at IMC

Normal EGD and tiny tummy!

On Wednesday, I am scheduled to have the barium swallow done at UVRMC. My Mom accompanies me to this test (I had a meltdown the night before so my parents are very concerned). This is the test I dread having done, nothing like fasting and then getting to drink some barium chalk first thing in the morning. Luckily, I had an amazing Radiologist who took the time to go over my history and ask some questions about the symptoms I am having before doing the test. He decides to do it a little differently. I only have to swallow 2 gulps of barium chalk before he identifies the problem. He takes x-rays for the next five minutes and then says he has all the pictures he needs and I am done. He explains the test results to me and my Mom. The first problem is that I am having some mild delayed emptying of the stomach, which is a functional issue. The second and major problem is the reflux. I had spontaneous reflux throughout the whole procedure. He seemed surprised given my surgical history that the problem was this severe. He said he didn't want to give me any more barium because there was a good chance that I would have aspirated it into my lungs.

Luckily, I don’t have to wait long to see the Dr. for the results. I see Dr. Rasmussen the following day and we go over the results of all the tests. At this point, he is not sure of what to do. He says that he could definitely put a scope in and clean up all the scar tissue and adhesions and release the intestine and stitch it up, but is reluctant to do so at this point due to the risk of the surgery. The functional issue of the stomach is more complicated. I have already taken medicine to stimulate my stomach to move but that hasn't helped my symptoms. He said the next step would be to take the remaining portion of the stomach out and connect esophagus straight to intestine. The next issue of the reflux is where things get really complicated. I should not have reflux at all. In severe cases, the surgery that is performed for reflux is the nissen fundoplication (which has already been done and come undone) or to have gastric bypass, which is basically what I have had done. I have already taken the preventative steps to avoid reflux. He says there is an experimental procedure that involves putting a magnet on top of the stomach to control the reflux. The only problem with this procedure is that it is experimental and no insurance company will cover it.

Dr. Rasmussen wants to research this a little bit more before we decide what the next step will be. He decides that he will email me within the week before we decide anything at this point. I don’t really know which direction to even lean towards at this point. Having the rest of my stomach removed doesn't remotely scare me. I have read a lot about the procedure and I have basically lived this way in regards to eating and lifestyle changes anyways. I would like to remotely feel well and be able to eat without wanting to die. And I am willing to do anything to get this point.

So now we wait.

Tests, tests, and more tests!

Things are still going the same as far as pain and eating. My pain is continuing to increase daily and my level of eating/appetite is gradually decreasing.

I am still continuing to lose weight despite my massive efforts at maintaining my weight (yes, I have resorted to chocolate!!)

We go over everything from the last visit. We do a review of symptoms and pain. After hearing all this and about my follow up with Dr. Frech, Dr. Rasmussen wants an upper GI series (barium swallow) done. I tell him that Dr. Frech and I decided not to do this test and went with the EGD instead because of the false positive the barium swallow seems to give. He insists on having one done because he will be looking at the test from a different perspective than Dr. Frech would be. He wants to look at the anatomy of everything versus the function of the stomach and why all the reflux. He said this test will give him an idea if the anatomy is the source of some pain or problem.

Dr. R says that if the hiatal hernia is causing all of the problems that it will be very hard to fix. I don’t have enough stomach left to properly do a wrap (nissen fundoplication) so he would have to come up with some way to fix the hernia by not doing a wrap. He says that he can also go in and release the intestine that is attached to the abdominal wall but I run a very high chance of that intestine having a hole in it from the feeding tube placement/removal. If there is a hole in the intestine it will have to be repaired so it won’t leak. As far as removing scar tissue/adhesions, he said he can clean up what’s there but seems reluctant to go this route. He wants to wait on the tests before he decides what to do. I don’t want anyone jumping in to doing unnecessary surgery.

So the plan for now is to have the EGD done on Monday with Dr. Frech, have the barium swallow done after EGD day at UVRMC and then see him again on Thursday to review all the tests and make a decision about future surgery.