Dr. Frech Visit and New Plan

I had my follow up with Dr. Frech. Oh boy. It was a bit overwhelming and I still feel like I am in the same boat.

I am just going to copy the office note from Dr. Frech so I don’t have to re-write the information from an hour long visit!

(I took out most personal information)

Noel understandably is frustrated about her up/down course as we previously shared optimism at her last clinic visit that her condition was seemingly improving following her most recent exploratory laparoscopy with adhesionlysis. Unfortunately, her symptoms have slowly worsened since her feeding tube was removed following her last clinic visit and she had become more reliant on oral nutrition. She has, in fact, lost 7 pounds since I last saw her and only consuming 900-1000kcal daily as she has pain with eating.

 I am perplexed by Noel's persistent symptoms and share in her frustration with seemingly worsening symptoms since last seen. Her symptoms seemed to improve significantly with her most recent adhesionolysis surgery suggesting at least component of adhesions contributing to her symptoms. She really hasn't ever become accustomed to reduced size of gastric remnant following initial surgery and hasn't been able to eat normally for over a year now. I think a component of her poor tolerance to eating is due to reduced gastric compliance from not eating normally for so long…

I have recommended the following:

1. Continue linaclotide 290mcg daily. Consider adding Miralax 1-4 capfuls daily if persistent constipation.

2. Noel previously did not tolerate metoclopramide and unable to obtain domperidone. I am concerned about starting erythromycin as prokinetic, which may be a potential therapeutic option for her though already on multiple other drugs that prolong QT. She is going to see her cardiologist within next week. She has underlying Wolf Parkinson White and I'm really not sure about adding erythromycin as another potential QT prolonging agent. Will hold on doing this for now given already taking Zofran… and tramadol. My hope would be that by slowly increasing her diet and thereby increasing her gastric compliance, she will then be able to tolerate higher volumes of food though she hasn't not been able to push herself to do thus far due to postprandial pain and nausea…

3. Begin bedtime promethazine to help control nocturnal nausea. Continue…zofran during daytime with hopes this allow her to better tolerate increased PO and improve gastric remnant compliance.

4. Begin monthly B12 injections given fatigue and "low normal" B12 levels. Hold on adding iron though iron slowly dropping likely related to bypass anatomy and poor diet.

5. Continue Ensure or Boost at least 3 times daily. She is adamant about not having nasoenteric feeding tube replaced thus will have to try best to optimize oral nutrition.

I asked her to contact my office in the interim if she continues to lose weight and I asked her to have her cardiologist send repeat ECG results (prior QTc 12/2014 ECG 432ms).

It was a long visit and a lot of information. But I am so grateful that Dr. Frech always takes his time to go over everything with me and works so hard to figure out some solution. I think at this point, things are going to just be trial and error until we can resolve some symptoms. I really am not super concerned about my weight anymore. I just need to still step up my eating and push myself and hopefully if I can eat semi-normal meals than the other symptoms will resolve themselves. The pain issue is a whole other issue and I guess we will cross that bridge when it becomes unbearable again.

These gave me a good laugh!

One Year and an Update

Another year has come and gone since my April surgery. Last year at this time, I had my feeding jejunostomy tube placed. I also developed a small bowel obstruction and had emergency surgery 4 days later. I look back on this experience and can’t believe everything that happened. This was by far one of the most awful, painful, and scary things I have gone through. I always catch myself glancing at my Frankenstein looking belly and all of its scars and how each one tells a different story of the past two years. I really can't believe that it has been two years since we finally got aggressive and started down this surgery road!

Update:

So things are moving progressively backwards again. I thought I was doing really well and even at my follow up appointment last week, I said everything was OK. I am developing pain in my upper right and left quadrants again. The thing that makes me nervous is the pain is definitely different this time. It is more intense, comes and goes, and takes my breath away. I am still exhausted if I have to do anything and feel like I have to hold my sides while doing it. My stomach has a constant burning sensation and pain radiates into my shoulder blades. I am still slowly losing weight and each day, I eat less and less. I am back to taking narcotics at night and I feel like I eat Tylenol like candy during the day. I worry if this is a new problem or the same problem from scar tissue. I worry if there will be anything that can be done to fix it or I will have to live like this for an extended period of time. I wouldn’t say that things are worse than they were a year ago, but they are rapidly moving in that direction. I may have jinxed all my healing progression.

(Here is me trying to stay positive this week!)

I have an appointment with Dr. Frech in 2 weeks. We will see what these next 2 weeks have in store and then what the game plan will be from here on. 

Feeding Tube Follow Up and Support Group

Holy cow...I can’t believe that it has been 4 weeks since I have had my feeding tube out! I have truly loved every minute of it and pray that I never ever have to have one again!!

I have my month check up with Dr. Rasmussen. I had lost the 8 pounds originally but have been able to bring that up to only 2 pounds of total weight lost. He is happy with that number and so am I. Things overall seem to be going very well. I can eat pretty well but still am having issues with reflux and the gastroparesis. However, I think this will be my life long battle. I don’t know if there is anything that can be done at this point to correct the problem.

I watched a documentary about juicing recently and have decided to start incorporating this into my diet. I don’t have any pain or discomfort when I drink my calories (Ensure). So I thought that juicing would be a good way for me to get more nutrients in (since I don't take my vitamins and supplements religiously). I have a really hard time eating raw vegetables or fruits with skin, so why not drink them in liquid form? I just need to make sure to add protein to the drinks so I don’t start losing any weight. My main motivation for wanting to do this is to see if I can increase my energy in any way. I am so physically exhausted by the time I get home from work. If I sit in one position for too long or lay down, I fall asleep. It’s bad. I have never been a person to even take naps so this is driving me crazy!! There are days when I can’t even make it up the 14 steps in our house. I usually have to stop midway and take a breather and then climb the rest. For those who know me, this amount of energy is not OK! So I have started juicing here and there. I am trying to at least do one juice a day right now and will gradually increase that.

I have also graduated to 2-month follow ups! I haven’t had this for 2 years so I am excited. This is a step in the right direction. Keeping all my fingers and toes crossed! I will see Dr. Rasmussen in June again.

I also had the chance to go to support group last night! I love going to this support group. I didn't always enjoy it because I felt like my situation was so different. It is very different but in the end its also the same. These people are amazing and to just listen to them is inspiring. I love the energy that they have and how they have the daily strength to keep going. It always gives me the motivation that I feel I sometimes lack. I also get to share things that work for me and create new ideas of things to try. Even if its just talking about protein!!

Here are some quotes that keep me going every day!! I know that someday I will look back on all of this and find peace in my experiences. One thing I have gained from all of this is knowledge. I have learned so much through all of this and if I can share my knowledge with just one person it will all have been worth it! 

Happy National Doctors Day!!

Today is National Doctors Day. In honor of this, I wanted to give an update of how things are going as well as a shout out to my Doctors.

Things are going just OK. Not as well as I would like them to be going but it is what it is. I have had the feeding tube out for 2 weeks and have lost 8 pounds. I however have not passed out once since the feeding tube was taken out, so that’s a bonus! I am also having a harder time eating again. My stomach feels like it is shrinking and I am eating less and less. I try to eat at least once an hour so I can get most of my calories in, but this is hard since I feel full all the time. Everything just sits in my stomach and I am so nauseated all day long. I have grown such a hatred for food! The eating aspect of all of this is unfortunately moving backwards, not forwards. I feel weaker and weaker each day and am so exhausted. If I sit somewhere in the same position for too long, I fall asleep. All of my vitamin numbers look OK so I don’t know where this level of exhaustion is coming from. The Linzess that Dr. Frech has me on seems to be doing the job but it is not helping the pain in my colon on my left side. The pain in my right side seems to be creeping back but seems different this time and is centered more in my back and radiates into in between my shoulder blades. I think the only positive thing that has happened in the last 2 weeks is the tube is gone and I haven’t passed out! I see Dr. Rasmussen in 2 more weeks and Dr. Frech in May. If things don’t start taking a turn, we may have to change the game plan.

Since it is National Doctors Day, I had to give a shout out to both of my amazing Doctors! Wow. Where do I begin and how do I explain it in words? I have never met two Doctors that show their patients as much compassion as mine have given to me (and I have seen a Dr. or two in my day). Dr. Rasmussen and Dr. Frech are 2 of the most kind and caring individuals I have had the pleasure of coming into contact with. To them, I am not a number. I am a human being with a real complicated problem. I can’t even begin to count how many times I have had a breakdown in front of these guys and they sit and so patiently listen to me and offer whatever comfort they can. So many times, we forget the simple power that can be found in human touch. Whether that is a tissue box, a shoulder to lean on, or a simple hug they willingly offer it. I am sure that I would be dead at this point if it weren't for the 2 of them. Not only did both of them take on my rare extreme case, but both of them believed that I was truly sick. They listen to me and are also honest with me, which is rare to find in a Doctor. I owe both of them so much and don’t even know how I can begin to repay them! So here is to the best 2 Doctors that I think exist in the state of Utah, Dr. Richard Rasmussen and Dr. Edward Frech!

So for now, I have stopped trying to find or see a reason to why this has happened or why I have had to suffer through this. I just have to believe that there is a reason and hopefully find comfort in that. I continue to lean on those that lend their strength to me because mine is running low. I just have to remember that each day is a new day. 

Feeding Tube Decision Day...Dr. Rasmusssen

I had my 2 week follow up with Dr. Rasmussen today. My weight was down 3 pounds. He asks how things are going and I tell him. Probably not the whole truth but this tube has got to come out. It has been 12 weeks of Hell and I don't want to participate in this game anymore. He asks if I think I can maintain my weight or if the tube needs to be in longer. I tell him that I want the tube out and he has to give me a shot at this. So...he agrees to take out the tube!! Yippee!

That was quite the experience. It was just as painful taking it out as putting it in. I felt it slither all the way from my throat to my intestines. I gagged more with it coming out then I did when it was put in. My intestines squirmed and made all sorts of lovely noises. I forgot they made noise! That tube was definitely nasty! Nothing like funky colored slime.

Dr. Rasmussen wants to see me again in a month to see how things are progressing. If I can't maintain a weight then I am sure I will be in trouble again! For now I just need to focus on eating and not losing much weight before then. Oh happy day!!

Dr. Frech 3 Month Follow-Up

I had my 3 month follow up with Dr. Frech this past week. I haven't seen him since December and a lot has happened since then. I was in the ER with peri-portal edema. I met with Dr. Smith in SLC for a second opinion. I have had a ton of blood work and a liver ultrasound. I had a feeding tube placed. I gained 20 pounds and finally had surgery.

Once I catch him up to speed on everything that has happened we go over each issue one by one. He was relieved to know that Dr. Rasmussen found a few issues during surgery that he was able to fix things and I am mostly pain free at the moment. He says he was very concerned at how things were going last time I saw him.

We go over all my labs and agrees to the Vitamin D. He also wants me to go off my iron supplement because my numbers were a little high and he thinks that the iron may be contributing to my constipation issue. He also wants me to go back on the Linzess and stop taking the Senokot and MiraLax. He also renews my pain medication that I take at night.

We go over the more pressing issue of me passing out in the mornings. He thinks it may be related to the WPW syndrome and not a nutritional issue. My blood sugar has been normal each time. He wants me to take my BP and heart rate the next time I have an episode to see what it is. He thinks it may be a good idea to go and see my Cardiologist. We'll see.

He wants to see me in 6 weeks. He also wants me to have the vitamin labs repeated every 2 months until things become a little more stable. He thinks that the feeding tube should be taken out to see if I can maintain my weight.

One Month Post-Op Surgery Round #5...Dr. Rasmussen

I have my one month follow up with Dr. Rasmussen. Things seem to be going well so far. I seem to finally be at a stable weight. I am having a few issues right now that are a little worrisome.

1. I have absolutely no energy. I fall asleep if I sit still for more than 15 minutes. I have to keep myself moving constantly to avoid this. I have never been a nap person before and I feel like I need a nap every day to survive
2. I am having what I like to call pass-out episodes. It is happening more frequently and always in the morning. I had these start happening when I had the original surgery and it was because of low potassium. Dr. Rasmussen had my potassium checked a week ago and it was normal.
3. I have this pain that stretches across my whole upper abdomen. It feels more like a tearing/stretching sensation, not necessarily “bad” pain. I can’t lay completely flat because of this sensation. This also has made sleeping interesting.

Dr. Rasmussen has a few solutions/options to these problems. They are as follows:

1. We are going to repeat all the bariatric post-op labs that were done 6 months ago. I should be on a yearly schedule of these labs but haven’t quite hit that point. I will have these done later this week.
2. Passing out could be related to a number of things. Since it happens first thing in the morning, Dr. Rasmussen thinks it may be related to my blood sugar. He wants me to test my blood sugar when I have another one of these episodes. He also said that hypoglycemia may happen after this type of surgery. He said it could also be related to low protein intake. I should be at 60g of daily protein intake. However, on a good day, I can get anywhere from 20-30g of protein in. He wants me to swap more of my veggies and fruits for more protein rich foods and try and hit this target.
3. Dr. Rasmussen thinks the pain/sensations of tearing are related to having the surgery. Pain like this normally resolves about a month after surgery and I am right at that point. So we are going to just watch it for a few more weeks to make sure that it goes away.

Now, about this lovely feeding tube... The feeding tube has been in for 9 weeks now.9 whole weeks. Which in the grand scheme of things, seems like nothing! But, it is the 4^th one and I am tired of it and tired of the routine of having it. However, both of us feel it may be premature in pulling it. I am maintaining my weight but that’s with 1200 calories of tube feed. He is worried about what will happen when we rapidly take away the 1200 calories. So we are going to decrease the tube feeds to only 800 calories. What worries me is the passing out issue. If I am getting all this nutrition throughout the night, and still feel awful in the mornings, I am scared to see what will happen if that is taken away prematurely. I don’t want the tube anymore but I also don’t want another one placed in a couple of months. So for now, I will suck it up for a few more weeks and deal with it.

Game plan for now: I will see him again in 2 ½ weeks and we will see where things are at. If things look OK and are progressing in a more positive direction, he will pull it. If not, he wants to leave it in for 2 more weeks after that.