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. 

Dr. Frech Appointment

I have my follow up with Dr. Frech. Things at this appointment go pretty well and I don’t have a nervous breakdown again, hallelujah!!

The first thing we go over is weight. I weigh 124 lbs. at this appointment (thanks to bloat weightJ). Dr. Frech is satisfied with this number so I feel we are out of the woods with the weight issue and being threatened with placing a feeding tube again.

The next thing we discuss is the issue of having a hard time eating anything with substance. I am still having major issues with reflux and food coming back up. If any of you have seen the movie, Wreck it Ralph, the little girl explains that when you burp and vomit at the same time, it’s called a VERP. This is my life all the time. I do fine with liquids but anything like bread, chicken, or raw veggies and fruit comes back up. I can’t tolerate more than a couple of tablespoons of food in one sitting and I should be able to eat at least ½ cup in one sitting. I also can’t lay down flat at night. This makes me lean more towards the hiatal hernia being the cause of this problem. He is concerned that the anastomosis may have shrunk (although not likely) since the last EGD. He thinks that it may be the pouch is just not functioning anymore. He suggests doing another barium swallow test to which I refuse. I tell him that the last two we did had a false positive and that I don’t want to drink any more barium for the rest of my life. He laughs and agrees that it might not be the best route of testing. He suggests doing another EGD with the intention of doing another pouch stretch and to also possibly find a source for the pain near my liver. He is hoping that he can get the scope far enough through the intestinal tract to find something but he hasn't had a good success rate in doing this. We both settle on waiting several weeks to give my body more time to become adjusted and heal. I decide to repeat the EGD after Thanksgiving. He says if things get worse to call and we can do it any time before then, he will squeeze me into his schedule.

He also hinted that as much as no one wants to do a repeat surgery that might be the only option for reducing the pain that may be related to surgical adhesions. That is the only way to 100% know for sure that the pain issue is scar tissue. He said most people don’t have “pain” when there is scar tissue present, but it is not unheard of. And since I don’t fall into the “normal” category, it may be the case and surgery may be beneficial. 

Where to go Now? Dr. R Follow Up

I have contemplated for a while if I should even do this blog update. Things aren't looking so great and I am really starting to get down and depressed. I am really tired of fighting this and always being told “I don’t know”.

I had my follow up with Dr. Rasmussen yesterday. We have decided to stop physical therapy because it is obviously not helping. The pain in my sides is worse and every time we did a physical therapy session it aggravated the pain. The physical therapist thinks that the pain in my right side is related to a buildup of scar tissue while the pain in my left side is not consistent with scar tissue and he is not sure what that problem is. So physical therapy has been stopped.

Dr. R also wants me to start taking another medicine called amitriptyline. This medicine is in the antidepressant family of drugs. However, it has also been used to treat chronic pain related to nerves. He thinks that a trial of this medicine might be of some benefit to me. He also wants me to start weaning myself off of the Norco if I can. I am becoming dependent on it and this is worrisome to him and me. His hope is that the amitriptyline will work and I won’t have to take anymore Norco.

Dr. R also wants me to change my vitamins a bit. I am supposed to start taking a vitamin B complex. This will include most of the B-vitamins in one pill vs. a different pill for each B. My B-12 level came back at 345 and the low number is 345, so I am sitting right on the fence of this one. The hope is that this will increase my energy level and help me to not be so exhausted in the evenings. He also wants me to try taking some melatonin at night to help me sleep. I think if I could get a few hours of sleep in a night, I would feel 100 times better.

My weight came in at 123 lbs. This is down 6 pounds from tube removal weight.  Dr. R was OK with this number and so am I. I am doing pretty well with eating. On a good day I am averaging between 800-1000 calories. I know it is not what it should be yet but I am getting better.

I have a complete melt down at this appointment as well. I told Dr. R I don’t want to be the boss anymore, I want someone else to just take charge and say this is what we are going to do and do it. I am so tired of being this strong person who has it all figured out and is so brave. I try to put on a face for people but I am having a hard time doing this lately. I am mentally, emotionally, and physically exhausted and just don’t know how much more I can take or handle.

I don’t feel like I am asking for a whole lot either. I am willing to live with some pain but not this extreme. It hurts to sit, to move, to lie down, to breathe, or to basically do anything. There has to be something that will resolve this pain and I don’t know if I have it in me to wait and figure this out.

So the plan for now is to make all these medication switches. I am supposed to see Dr. R again in 4 weeks for a follow up. He doesn't think that surgery at this point would be beneficial but this is not out of the cards yet. There is also another procedure that can be done to the nerves in my left side that involves injecting some numbing medication to calm the nerve then they go in and surgically find the nerve and take care of it. But these aren't options for now. Hopefully the medicines will begin to work and soon. I see Dr. Frech for his follow up in 2 weeks. 

Physical Therapy

I started physical therapy at the suggestion of Dr. Rasmussen to rule out abdominal wall strain.

My therapists name is Trevor. He says that we should know in 2-3 visits if the physical therapy is going to help.

My therapy plan involves taking a metal object (looks like brass knuckles) coated in cocoa butter and rubbing it with pressure across my abdomen and over all scar areas. He says this increases the blood flow to the area and tissues and allows it to heal and become less painful. Seems weird but I am going with it right now. It has to be one of the most unpleasant feelings. It hurts and only seems to be aggravating my pain instead of relieving it. He also gives me some abdominal wall stretches to do to increase the strength back into my muscles.

I have 3 more visits scheduled. We should know after these 3 appointments whether the therapy is going to work or not. 

15 Month Reflection

I can’t believe how much my life has changed since June of 2013. When I look back on everything that has happened these past 15 months, I am overwhelmed. The first things that come to my mind aren't pleasant. I think of all the surgeries, hospital stays, tests, scans, needle pokes, feeding tubes, being put to sleep, how many people have seen me naked and exposed, and of course all the hundreds of Dr.’s visits to just name a few. This list doesn't begin to include everything required to get to making that decision 15 months ago.

Dr. Frech made a comment at my last office visit that prompted me to write this post. He said that where I am right now, he can’t truly say that we made the right decision all those months ago. He feels like at some point he may have let me down. But he also agrees that we didn't have any more options.

This is honestly how I feel about everything at this point and the decision that was made!

1.       I think that overall the right decision was made. I had no more options but to take out my stomach. If I decided to go against everything the Doctors were telling me at that point, I don’t know where I would be today.

2.       I feel like the weight loss is my reward for all the Hell I have been through. I lost a total of 105 lbs. Most of that happened in 6 months and the rest happened gradually over the remaining 9 months. I never in my life thought that I would have to worry about my weight. I was always on the heavier side. Now I also feel like I have an eating disorder. I am constantly obsessed with what I put in my mouth. If it’s something I shouldn't be eating I will spit it out. I count calories all day long. Food is not enjoyable to me anymore, it is a nuisance.

My favorite comparison of how I used look compared to now!

My daily fitness pal entries remind me I don't eat nearly enough!

3.       I am so thankful for my two Doctors. I am sure without them at this point I would probably be dead. They aren't your typical Docs. At least I feel like they really do care about what happens. They haven’t washed their hands of me yet.

4.       There are days where I do wonder why me. When I wake up and don’t feel good and can’t eat and the scale keeps going down and my pain is a little out of control I do wonder why I chose this route. But then I am quick to remember that it could always be worse and someone else’s shoes are heavier than mine. I may feel like my road is difficult at times, but I have my life and my family who supports me unconditionally.  

One of my favorite quotes through all of this!

5.       I do feel like the original problem was fixed. But fixing the original problem just created a new problem. I feel like my health is a domino effect. Never did anyone anticipate that I would have as many issues as I have had. They give you all the worst case scenarios and it never crossed my mind that I could fall into that category of people. I should have expected this given the statistics I was already starting with. I read somewhere that 2% of people who have their gallbladder removed will develop bile reflux and of that 2%, 99% of people respond to medication. Geeze I should have known!

So at this point, I can say mostly YES! The team made the right decision. Besides, there is no going back right!? 

Dr. Frech 3 Week Post-Tube Removal Follow-Up

I go to see Dr. Frech today for a three week follow up since the feeding j-tube has been removed. At this appointment I weigh 125.7 pounds. I am slowly losing weight since the tube was taken out but not at a drastic rate. We go over quite a few different things and he seems pleased with my progress.

The first issue we go over is the pain that is still in my left side. He still is not convinced that it is an abdominal wall strain like Dr. Rasmussen is. He thinks it still may be more related to adhesions caused by the previous surgeries. He said that at this point, surgery would not be a good idea and would probably cause more problems. He wants to wait and give my body more time to heal.

The second issue we go over is the colonoscopy results and the size of the pouch. He thinks that my intestines may just be altered differently since the last surgery but doesn't want to rule out anything with that. A repeat colonoscopy may need to take place further down the road. He also thinks that my “stomach” has not increased in size in 10 months because I haven’t used it too much in that time. I still cannot eat more than ¼ cup in one sitting without getting sick. Both Dr. Frech and Dr. Rasmussen say I should be up to ½ cup in one sitting. There is a possibility of doing some pouch stretching down the road if I can’t get the volume up. He also has instructed me to take Zofran 30 minutes before I eat to see if that will help the symptoms and be able to push food volume a little more.

(This next section may be too much information for some, just skip over it!)

The next issue we go over is trying to regulate my bowels. Let’s just say it is not normal for someone to go from diarrhea every day to not using the bathroom for a couple of weeks while taking daily doses of Miralax. So, I am to try a new medication called Linzess until I see Dr. Frech again. Hopefully that will make a difference.

Right now the plan is to just basically wait. I am to give my body more time to heal and to try and keep up on the nutrition and keep my weight stable. He said that if I start getting closer to 120 lbs. that I need to call him right away. He also wants me to try and double my ensure shakes to keep my weight stable.

Dr. Frech wants to see me again in 6 weeks to recheck weight, follow up on medicine, re-evaluate pain, and hopefully make some decisions. If anything else needs to be done this year, I want it done this year. I don’t want to pay nothing more than a copay in 2015. That’s my goal!!