Sunday, May 29, 2011

back to the philadelphia...

I went to meet with my gastroenterologist at Temple University Hospital this past week in Philadelphia. We had numerous things to discuss; previous test results and of course the possibility of my coming total colectomy – the surgery where my colon where will be removed.

This time we stayed at a different hotel; after three previous trips of not sleeping well I was ready to try a different hotel with different beds. I’m the kind of girl that can sleep anywhere - I can go back to sleep within a few hours of waking up. Sleeping isn’t hard for me. The past three trips to Philadelphia, I’ve not been sleeping that well; tossing and turning and waking up multiple times in the night. I learned before my GP diagnosis that if I didn’t get a good night’s rest, I just didn’t feel tired the next day, my GI tract suffered as well. I’m not sure why but that’s just one of my odd GP quirks. Our hotel was nice and comfortable. I had no trouble sleeping – all night long! I woke up rested the next morning and ready for Temple.

We got to Temple and basically walked into the examination room. I met with my doctor and he asked how I was doing. My reply was “Good”. I went on telling him briefly how things were going. His reply was “Well you’re really not good then, are you?” in so many words. I told him that I just tried to keep a good attitude… (I thought that trying to keep a positive attitude was a good thing or was I mistaken?)

He discussed my four day gastric emptying test that I had back in December. My stomach only emptied fifty percent. As for my small intestine, it was delayed and the food only made it through half of my colon within those four days. Overall, I am SLOW!!!! I told him about having the Smart Pill Test and he agreed with the findings. As for the bacteria in my small intestines, there wasn’t any. The test came back fine.

I went on to tell him about the possibility of me having total colectomy. His opinion on the idea of the surgery was different from my surgeon and GI doctors’ opinions. He said that where I have four organs (stomach, small intestine, colon and bladder) involved the risk was too much. If I only had one organ that was delayed, I might have a better chance at a successful surgery but I just have too many organs involved. According to him, I have a 60% chance that the surgery will not work at all and a 40% that the surgery MAY work but I still may be cleaning out. To him, it was too much to risk. I should just CONTINUE CLEANING OUT FOR THE REST OF MY LIFE.

He prescribed three things, two medications and one tea. The tea is called Smooth Move Tea. I should know within a few days as to if it is going to work. He also prescribed Magnesium Oxide. If those two things do not work, I am to take this last drug; ­­­­­­­­­­­Cytotec. I am not sure about whether I am going to take this drug or not. This drug is to aid with the abortion process; it is similar to the morning after pill BUT it is also used for GI purposes as well. I have no reason to worry about the abortion possibility but if this drug can do that, do I really want to be taking a drug of that “strength” once to twice a day? I have to go talk to my pharmacist. I’m totally undecided.

He wanted me to go do a series of abdominal x-rays to see how much food and stuff my colon was retaining. I’ve already done and paid for this series of x-rays before and my GI doctor at home knows what goes on in my colon. I ended up waiting an hour and I called it a day and left.

As for the second opinion on my surgery, I sat there and listened. I have the highest respect for my doctors but they do not live my life. They are not with my when I drink that terrible magnesium citrate and they are not there in the middle of the night when it wakes me up. In ten years from now when I have some child event to go to, I want to go and not have magnesium citrate on my mind. Even if I still have to clean out and the surgery is not successful, at least I will know that I tried and I gave it my best. This is my chance.

Sunday, May 22, 2011

the surgeon's appointment...

I met with my surgeon on May 13th to discuss the possibility of removing my colon. I have to say I was pretty nervous the night before. I had been fine up until I realized that in the morning I would have my answer as to what the rest of my life could be; a life of continual clean outs or more of a “normal” life without magnesium citrate. I had thought of five, ten years down the road, what condition would my body be in after these continual clean outs. What type of life would Jacob and my family live? Luckily I relaxed and gave it back over to God. I couldn’t do anything about it so I might as well let it go.

I woke up Friday morning feeling pretty well. We got to the hospital and the surgeon was running forty-five minutes behind. I was impressed. Whenever my dad had his colon surgery, he waited four hours to meet with his surgeon. Jacob and my mom went with me so it was nice. My surgeon is wonderful! He was very thorough and had a wonderful bedside manner. He is aware of Gastroparesis and what the disease entails. He said that I was one of the worst patients he had ever saw/operated on (what a comforting thought… NOT!). He said before he could ever consider removing my colon he would want to take me to the OR and do a biopsy of my colon and rectum to make sure that I do not have Hirschsprung’s Disease. The test that I had performed at Temple University Hospital wasn’t as accurate as a biopsy and he wanted to be sure before he removed my colon. I could be in more trouble than I am now. He went on to talk about my diet and nutrition. He was concerned that I wasn’t receiving adequate nutrition since I mostly live on carbs and liquids. He mentioned the possibility of a feeding tube or TPN. I asked him about the possibility of a colostomy bag. He said that I would not have to have a colostomy bag unless the surgery failed and well as my pelvic muscles due to my pelvic floor dysfunction. As for the surgery failing, he said there was no way to tell. He once operated on a patient who had a slow small intestine and he was able to give her eighteen months without cleaning out. Her motility disorder progressed and the surgery failed in so many words and she had to go on TPN and was never able to eat again. He told me that there was no guarantee. My GP may progress tomorrow if I don’t have the surgery and it may not. If I have the surgery I may never have to clean out again and then again I may only have a little while. It’s like a gamble and I am willing to take that risk. He said that my small intestines being slow would not be an issue. First however we have to get that biopsy.

I go on June 10th for my biopsy. We both feel that I am negative for Hirschsprung’s disease. After that if everything is clear, we will proceed with surgery! I go this week to meet with Dr. Parkman at Temple University to discuss all of the numerous tests that have been performed as well as my overall treatment of my Gastroparesis. The next few weeks are extremely busy but I am hopeful and excited!

Sunday, May 8, 2011

the smart pill test...

The past few weeks have been interesting to saw the least. I got to experience the Smart Pill test. My GI doctor had warned me that it would be a hard test to endure and he was right, ten days without motility drugs – it was rough. I went the hospital on Tuesday to swallow the pill and I got to meet the inventor of the pill I was swallowing (or at least that was my impression, I was a bit preoccupied). My GI doctor was there along with the inventor and two nurses who were being trained. I am the second person to have had this test at Baptist. I had to eat a ‘bar’. When I think of a bar I’m thinking of a food bar that is about the size of a Special K Bar. This bar was the size of a sandwich almost, it was quiet large to me. They gave me a half of a small cup of water to wash the bar and the pill down with. I struggled to get the food bar down. I never eat breakfast because of nausea and I’d been without meds for several days so I knew the odds were already against me – my stomach would fill up quickly. I was cramming as quickly as possible. Luckily it tasted good, cranberry apple. They brought over the pill, oh my goodness it was huge! I have seen who knows how many pills from working in the pharmacy but I have never seen a pill that big. He told me to put the pill as far back as possible and swallow. I’m the girl who couldn’t swallow an Advil until I turned fourteen. However I got it down first try!!

I had to wear a wear a monitor that measured different things that the pill was recording; pH levels and temperatures. It had to be within five feet of me at all times. I kept a diary of whenever I ate, slept, went to bed, and had any pain or nausea. I was doing fairly well without my meds until Friday. I started feeling light headed and nauseated. I was working Friday and I felt a wave of heat come over me and I thought this is not good. By Friday evening whenever I drank or ate something I experienced pain followed by nausea. This persisted all weekend. I could not wait for Monday. I could clean out on Monday and have my meds back.

Monday morning Jacob took me back to Winston to return the monitor. I was dragging. I came home and started drinking my magnesium citrate. It took me an hour to drink that nasty stuff! It didn’t take long for me to feel the effects of the magnesium citrate. I was miserable was nausea. I had been through five Zofran by 3:00 and they weren’t cutting it.

I still felt really bad on Wednesday so I decided to call my general physician instead of going to the emergency room in Winston. They decided to give me an IV to help with the dehydration. After six veins and no luck they decided that I was the worst they had ever seen. They ask if I was open to having an IV in my foot – sure why not? It worked but oh did it hurt. The IV did help rehydrate me, it just took forever.

I got my test results on Friday. The whole goal of the test was to see how much motility I had in my small intestines.

Stomach 5 hrs. 5 hrs. 15 minutes

Small Intestines 6 hrs. 9 hrs.

Colon 58 hrs. 126 hrs.

(Normal Person) (Me)

The upside with my stomach was that I hadn’t had anything in my stomach the day before and I spent the day of the test walking around. Walking I’ve found helps me. If I feel full or if I need to get the magnesium citrate working I walk. The delay with the small intestines isn’t good. My GI doctor said I could have complications with my colon surgery. The option of having surgery is up to my surgeon. He would review my test results. As for my colon, I never even lost the pill and that was the goal – to see how long it took to get through your GI tract. It never left my colon. We knew my colon was damaged and extremely slow. My doctor believes that a majority of my issues are coming from my colon. They could be lessened with surgery but I still have a whole bunch of issues to deal with. I told him that I want this surgery – I am young, I can deal with the complications. I don’t want to drink magnesium the rest of my life. He was very understanding and said that it is what it is, talk to your surgeon and explain how you feel.

This past Monday was not a good day emotionally. I was talking to Jacob about the possibility of no surgery and I had a pity party. I felt bad about the idea of being in the bathroom for the rest of my life. I felt like the idea of drinking magnesium citrate three times a week was a huge mountain that I could not climb. Between Jacob and my mom they made me feel better. My mom said something to me that I never even though of – change products if you don’t get to have surgery. It may seem minor to some people but the whole magnesium citrate thing is huge to me.

Since then I have been better. I still want the surgery but I am more open to the idea of not getting it and staying how I am now. It will be extremely hard to except some days when everyone else is out having fun living life normally but I haven’t lived a “normal life” in quite some time. I just have to get through today, tomorrow is not my concern. God knows what is in store for me and He is in control. I once told a friend who also has GP that if we knew the future, I don’t think we could take it.

My heart may fail and my spirit grow weak, but God remains the strength of my heart; He is mine forever. Psalm 73:26