Thursday, April 23, 2015

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. 

Thursday, April 16, 2015

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!