loving life...

I have been loving this summer! Yes my day to day schedule is ridiculous; start cleaning out on Monday and finish Tuesday by midday or afternoon and starting the whole process over again on Wednesday. It is a long and drawn out process so there is little time to do anything summer related but I just love summer. I went with Jacob and his family on vacation for a few days which was nice. It took some prep work, two back to back clean outs and an all liquid diet except for the last day minus a Luna Bar and a few of Jacob’s fries but it was well worth the effort. 

I switched primary care doctors back in June. She has a wonderful bedside manner. She is willing to help me on those rough days after cleaning out when I need an I.V. but am not able to make it all the way to Winston. The only issue would not being able to get I.V. access to my difficult and stubborn veins. We’ll just have to wait and see what happens when the time comes. When I went in for my physical, it was the day after cleaning out so I went in tired. She wasn’t happy with my weight or my low energy levels. 

I went to see my GI this a week ago Wednesday. For the past couple of weeks, my stomach has been indecisive, is it in a flare up or not? I woke up the day of my appointment and automatically my stomach started acting up. Perfect timing. 

My GI and I discussed my recent flare ups and how they are becoming more frequent, intense and longer. He had prescribed a new medication for me to take during a previous flare up to help with the nausea since my Zofran wasn’t cutting it. He said at the first sign of a flare up or anything different to take this new medication in hopes of preventing a new flare up. As for this flare up or whatever it is that I am in, I am to take the medication for a month straight. Along with my flare ups and cleaning out, I experience lower left intestinal pain. It will get to the point that I cannot stand up straight to walk. I however am so stubborn that I will just lay there in the bed and tough it out refusing to go to the ER. What can they do for me? When I am in that type of pain, I don’t feel like riding to Winston where my doctors are and I don’t feel like explaining my whole medical history to the ER here in town. He said that the pain is a combination of things. The area is located near the hook up site of my colectomy and during a clean out, stuff is continually flowing through there causing tenderness. 

Another thing we talked about was my diet. As mentioned before, when I go with Jacob and his family for several days, I go on a liquid diet and my GI tract seems functions better and I feel better (GI tract wise). I asked about the possibility of switching the majority of my diet over to liquids in an attempt to make my GI tract function better and feel better. He said that he had patients who lived on liquid diets. I would still eat solid foods occasionally because I crave crunch, flavor and just food in general. He wants to do some testing to see how my stomach is working. Since I have been having more trouble than usual and it has been two and a half years since testing, it was a good time to retest. I am having a gastric emptying test (a test that sees how long it takes the food to leave my stomach), an EGG which is an electrogastrogram (a test that measures the stomach’s muscles contractions), an EGD (a scope that looks at the esophagus and stomach) and a breath test to check for any intestinal bacteria. We talked about my weight and how I went from 88 pounds to 94 pounds. My goal is to reach 98 pounds. 

The final thing we discussed was how my surgery was not successful. The only thing it had relieved was the colon spasms.  Since the surgery, I have drunk 116 bottles of magnesium citrate. I asked if my small intestines could tolerate the every other day clean out treatments without doing any damage. Yes, the small intestines are very rugged. They may slow down with time because of the gastroparesis, as they are already slow but they can tolerate the treatments I put them through (1 bottle of magnesium citrate, 4TBSP of milk of magnesia and 5 tablets of dulcolax each treatment).

I am a very happy person. Yes, I have to compromise and change things around a bit but I am happy. I am very relieved to know that my small intestines can tolerate what I do to them every other day. I have always know that God would not give me more than I could handle but there is an extra bit of peace knowing that I’m not going to lose an organ because of what I am drinking (if that makes any sense).