Let Go of What You Can't Change

I had my follow up with Dr. Frech about 2 weeks ago and needed to do an update on our visit. Things are still going good. I think at this point things won’t get any better than what they are now. I know that I will never be at 100% again and now it’s learning to live with life and re-learning to love the body that I have. I am trying to embrace it and move forward every day. Each day has its new challenges but this is my battle to fight and fight it I will!! Some days are bad, but there are more good days than bad.  I have been able to maintain my weight and I am at least grateful for that!

I am still having pain when I eat and am having major reflux problems only when I eat something. It is still taking a long time to digest anything I eat. Dr. Frech doesn’t think that the surgical connection has narrowed but he thinks that it could be the hiatal hernia again. I have had this hernia in the past. It was fixed with my initial surgery but the repair had come undone. The only problem now is that I don’t have enough stomach left to do a proper repair. He has put me on Dexilant, which basically is an antacid. He wants to see if the medication will help the relieve some of the symptoms that a hiatal hernia would cause. If we can at least manage the symptoms, we won’t have to surgically try and repair it. However, if the medication hasn’t helped within a month’s time frame, he wants to do a scope to make sure there is nothing worse or different going on.

The other issue I am having is this new sharp pain in my lower abdomen right around all my lower big incisions. I have thought for a while that it was related to all the new gym training I have been doing. I have tried to do a lot of stretching/strengthening of the area but it hasn’t relieved any of the pain. I mentioned the pain to Dr. Frech and he doesn’t think it is muscle related. It may be the start of another hernia forming where the feeding tube was placed last year. He wants to closely watch it. If the pain gets worse, I am supposed to see him right away.

So for right now the plan is to keep doing what I am doing. Maintain my weight and focus on my calorie consumption. I am to take the new medicine for a month and if it works, I will continue taking it. If it doesn’t work, I am supposed to go in for another scope. If I don’t have to have the scope, I don’t have to see Dr. Frech for 3 months. Hopefully this medication will work and the hernias wont cause any problems!! 

Long Over Due Update

So I haven’t done an update to the blog in a long time. I spoke in church this past week and someone had pointed out that they haven’t seen an update in a while so I thought it was about time to update everyone!

I saw Dr. Rasmussen for a follow up in July. I have officially graduated from the monthly visits! Yippee! I will just see him on a needs basis. This is a huge mile marker for me!

Things aren’t much different in the sense of how I am feeling. I have basically accepted the fact that this is the way my life is going to be from now on and am just learning to live with it. I know for certain if I stay on top of taking my Zofran that my day will be manageable.  Each day has its challenges but I deal with them and always try to have a positive attitude. All I can do is smile and sometimes fake it until I make it. But I know that I will always make it!

There have been a lot of personal changes that have taken place in my life in the past couple of weeks as well. For those who follow my life closely, I have started dating again! I know, crazy right??!!  I haven’t been on a date since before I was diagnosed and that’s been over 3 years!  It’s hard getting back into it and things have changed so much, it really is crazy! Someone also recently reminded me of why dating sucks and I why avoided it for so long., I hate being a vulnerable person and dating tends to do that to you!  But I figured things are as good as they are ever going to be so it’s time to start that again. It is however hard to let someone in and know this side of my life but I figure in the end it will hopefully all be worth it. However, this is also a huge part of my life and it will take someone who is caring and compassionate with this illness to catch my eye!

I have started hiking again as well and am loving every minute of it! I try to do at least one hike a week.  It feels good to get out and in the mountains and be surrounded by beauty and feel the peace that’s only found in the mountains. You do however forget certain muscle groups that are required to hike when you haven’t been allowed to use them for 2 years! It does feel good though to be using those muscle groups again. Nothing that a hot shower can’t cure, right?!

I also recently signed up with a personal trainer at the gym and have slowly started to get back into it. I want to do some toning but I have to be careful to not lose any weight. When I first started at the gym however, I felt awful charlie-horse like pains in my upper abdomen. I saw Dr. Rasmussen and he thought that I was overdoing it and that I strained some muscles in my abdominal area. I was instructed to not do any abdominal toning for a week or running. He also gave me some abdominal strengthening/stretching exercises to do to try and engage those muscles again without overdoing anything. I have been doing the stretches slowly and the pain seems to be easing up in regards to the upper abdominal pain. It sucks that I can't take any ibuprofen, I am sure that would help!

I am mostly maintaining my weight. It fluctuates all over the place depending on the activities I am doing. I can lose 5 pounds if I spend too much time at the water park and then I spend the whole next day trying to recover. My body will always handle things differently from how it used to, which is something I have to remind myself of.  I have started incorporating more nuts into my diet and that seems to help make up for the loss of calories when I am not eating enough.

I am continuing to do the monthly vitamin B-12 injections and have finally started noticing a difference in doing that. My energy levels are increased for about 3 weeks and then I will feel a drop in those levels around the end of the month. I look forward to that shot each month!! 

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I will see Dr. Frech in the middle of August for another check-up. Hopefully my weight will stabilize and things will still be going OK. I do think that my iron levels are still low so we may have to do a re-check on those. I am sure this will always be a balancing act.

Thanks to all those who continue to offer their unwavering love and support. I finally feel like I am in a good place and am finally doing the things that make me happy again! This will be a lifelong battle and I hope that I can continue to be a beacon of hope for those out there who are struggling with those invisible illnesses. 

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.