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.