Dr. Frech 6 Week Erythromycin Check

I have my 6-week follow up appointment with Dr. Frech. Things seem to be going OK. I have gained a pound according to his scale so he is very happy about this. We decide to go off the erythromycin for the gastric stimulation. It is not helping as much as it should be so he says it’s not worth staying on it for a long period of time unless it was without a doubt working. The promethazine is helping with the morning nausea. I will continue to take that at bedtime. I also have started waking up with a taste of blood/metal in my mouth. He is hoping that this is related to taking the erythromycin and not some sort of bleed somewhere. I am supposed to watch this and see if it goes away after being off the meds. We do some adjustments to pain meds and hopefully I won’t become so dependent/tolerant of everything I am taking. He thinks my biggest problem in relation to pain is that I don’t have regular or frequent enough bowel movements (sorry if that’s too much information for you). He is hoping that if we can make these more regular that it will help alleviate some of the colon pain and nausea. He adds medications to help do this as well.  He also thinks that some of my pain is related to surgical adhesions/scar tissue. A good majority of pain is centered over where the J-tube was surgically inserted on my left side. The only way to alleviate that pain is surgery which in turn also creates more scar tissue.

Right now the plan is to make the medication changes and see if that helps anything. I am to continue the vitamin B-12 injections for increased energy. I will see him again in 2 months. If nothing has changed we will consider doing something more than making medication changes. I will see Dr. Rasmussen again in 2 weeks and hopefully he will have some more ideas to throw into the pot.

I also attended a meeting last night on medical cannabis. It may be something that I will have to do further down the road. But for right now, I still have options and I don’t think things are spinning out of control. I live in pain every day but I can still function with that pain. I am able to eat/drink the needed calories. So hopefully the new medication changes will help something. 

Erythromycin Treatment

So it’s been a while since I have done a blog update. I finally got the approval to go ahead and start the new treatment.

I have been on it for about 3 ½ weeks now. I go to the hospital once a week to have my potassium and magnesium levels checked. I did my EKG 3 days after starting treatment; my QT interval is still prolonged but not any higher than it normally runs. My potassium and magnesium levels are continuing to rise. I am at least grateful for this, doing an IV potassium infusion is the worst! It feels like your veins are being burned out of your body!  (I have had 4 potassium infusions)

I wouldn’t say that I have noticed a tremendous difference of being on the medication. But I do struggle to eat way more if I forgot to take the medicine, if that makes any sense! It still is very painful to eat and my weight continues to drop. I try to drink more protein drinks and eat protein bars. My pouch seems to tolerate these. The pain in my left side is quite significant. There are some days where I can’t even take a deep breath for fear of shooting pain.  I have to take narcotics at night in order to function the following day. I take the newly prescribed promethazine at night and that has significantly helped reduce the waking up nauseous feeling. I haven’t dry heaved in the mornings for a couple weeks now!

I have also done 2 monthly injections of the vitamin B-12. I am still exhausted and fall asleep all over the place. I feel like I could sleep 18 hours a day and that still wouldn’t be enough. I am so exhausted by the end of the day it is kind of pathetic.

I have a follow up with Dr. Frech in a week and Dr. Rasmussen in July. 

Cardiologist Approval for Treatment

I went to see my Cardiologist last week to get an EKG done and the approval to start new treatment for my gastroparesis.  They did the EKG and he said the QT interval is a little more prolonged than he would like to see it. He wants Dr. Frech to go ahead and start the treatment but put some strict guidelines in place. He wants a repeat EKG done 3 days after I start taking the medicine. If the QT interval is more prolonged he wants the treatment stopped. The other thing he wants monitored is my potassium and magnesium levels. He wants weekly lab work done to check these levels for the entire duration of treatment. He also said if I feel any worse or notice my heart acting irregular, than I will need to stop treatment.

I also started my B-12 injections last week. Haven’t noticed a difference yet but I am sure that it will take a while to build up in my system.

Just waiting to hear from Dr. Frech’s office to get everything ordered so I can start this new treatment.

Yippee!!

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.