a good GP day...

A good friend once told me that whenever you have a good GP free day get out and enjoy it! Jacob and I use to be a very active and busy couple before my GP diagnosis and GP progression. I remember during one week, we might go to Hickory or Winston for dinner and a movie while hiking in the mountains all weekend not to mention what we did locally. We tried to go or do something every weekend.

Now looking back, I see how privileged we were to be able to get out and do things. I was talking to some friends this week about how our diets have changed and how some people complain about how hard it is for them to eat "healthy". I will never be able to eat the average person's "healthy" diet again and I would give anything to do that. Until you lose something, you don't realize what privileges you have. Honestly, who wouldn't love to eat fresh fruits and vegetables, especially a salad?

I have the most caring, giving, loving and understanding boyfriend a girl could ask for. He has been through more that he signed up for. He is a great gift giver. Every few months he surprises me with something. Back in the spring, he surprised me with tickets to the Trans-Siberian Orchestra concert which was wonderful! After the concert he informed me that I had another surprise in a few months. The only kink is that he gives NOTHING away except the date. I'm talking no location, time of day, town - NOTHING! I think and guess for months which drives me insane but luckily he is a good gift giver so I trust his judgement.

After several months of waiting, Saturday finally got here and I found out we were going to Charlotte which didn't narrow down the possibilities of who or what we were seeing (I promise not to do a Google search). We pull up to the coliseum and I'm almost sure we were seeing the music group Shinedown until I see these older people and that was thrown out the door. I don't believe someone in their 70's is going to be listening to a rock band like Shinedown.... just saying. We walk in and there is all of this basketball memorabilia. No way, I don't do basketball. Luckily when we got inside I saw the Cirque du Soleil signs and I was sooo excited and relieved. I would not know what to do at a basket ball game and I'd drive Jacob crazy asking questions.

I have wanted to see Cirque du Soleil since... FOREVER! We, I mean I had planned on seeing Cirque du Soleil whenever we go to Las Vegas. (I have this desire to go to Vegas if it kills me. I have to go.) The show was remarkable. The costumes, music, the acts - WONDERFUL! My absolute favorite act was the Russian Bar Act. I have attached a link so you can watch it.

http://youtu.be/Hi1Em1nPKOk

It was a wonderful day. My GP was manageable. It took two naps to get me through the day but if that's what it takes to be able to enjoy a good day out with Jacob, it is totally worth it.

www.cirquedusoleil.com

too much magnesium citrate?

Over the past month, I have really been able to tell a difference in how I feel. I've been getting weaker, my blacking out has become more frequent with the blacking out time becoming longer each time. I've even started having trouble sleeping so it makes me even more tired. I never expected this. I have never had trouble sleeping so this has really thrown me for a loop. I'm the girl who could sleep anywhere.

I went to work Monday feeling tired and weak. I was running a few minutes late due to having trouble getting ready. Now when I get ready for work in the morning it's a struggle. I am usually ready for a nap after I get ready in the mornings. I'm just so weak and tired, it wears me out. Whenever I got to work, I parked where I normally park and walked to the building where we have morning devotions. By the time I got in the building, it felt as if my chest was caving in and my heart was going to beat out. Of course I couldn't find a seat to sit down in so I decided to ride it out. If I collapsed in the floor, I collapsed in the floor. There was nothing I could do about it. I learned long ago to hide how I was feeling. It isn't always a good thing but it can come in handy.

After I left devotions, I felt very heavy physically and weak. I continued to feel like this all through out the morning. I called Jacob later in the morning and told him that I would be coming home around one that afternoon. I just felt to bad to work all day.

When I got home, I was still feeling the same. I was walking through the house and stepped down into our family room/office. As I did, my body completely gave out and down I went. Of course this couldn't happen and no one witness it. As I looked up, there was my brother Chase asking if I was alright. I said yes, that I was just weak.

My parents had been doing busy so when they were both home, I told them of the day's events. They told me that I needed to call my GI doctor. I honestly didn't think anything of what happened. I just thought I was weak as usual. I called the doctor's office and found out that I should have went to the ER that morning whenever I experienced the chest heaviness and palipations. They wanted me to come on to the ER then but I made deal with them. Since I had an appointment tomorrow in Winston, I'd just come to ER then to be checked out. They agreed that would be fine as long as nothing changed; no more black outs, dizziness, chest heaviness or weakness. It sounded fair to me.

I had an appointment with my neurologist the following morning. I love my neurologist but that whole story is for another time. He has always been in my corner. I told him about the events that took place the day before and he didn't believe that they were neurologically related but he wanted to make sure by running and EEG brain wave study. We discussed my migraines and headaches that have become more frequent due to my cleaning out and diet regime. Whenever I told him how many ibuprofen I take along with my migraine medication, he informed me that with my GI condition, I am going to make a hole in my stomach and vomit blood. (LOL... I do not want to experience that. I'll back off on the IBU.) He gave me a new prescription and sent me on my way.

We got to the ER as instructed and I stated my case. I usually have a no trouble, I get to see someone from GI. This time, the one time I needed to see one from GI, I was told that I wasn't seeing anyone from GI. Oh well. Even though my doctor was being difficult, he seemed knowlegable. After an I.V., bloodwork, an EKG and heart ultrasound the conclusion was that I clean out with magnesium citrate is depleating a lot from my body. In turn, this is causing the blacking out, chest heaviness and weakness. There was nothing they could do for me. If I experience this again, I am to go back to the ER. I experience this almost everyday! I have blacked out seven times in one day. I would live in the ER. I'm still not sure what I should do whenever I experience those feelings, especially the chest feelings - those are scary. I now do not drive whenever I have days when I am blacking out, it's just not worth risking it.

a big gamble...

I met with my surgeon on Thursday to discuss my upcoming colectomy surgery which will be taking place on September 7th. In laymen's terms basically I am having my colon or large intestine remove which is around five feet in length. My surgeon will attach my smaller intestines up to where my colon ended and everything will move on through hopefully as if nothing happened.

My appointment Thursday wasn't until 1:45pm but I didn't see my surgeon until somewhere around 4:30pm. He discussed the rectal biopsy findings and how everything was negative for Hirshsprung's Disease. He went on to say that medically I have failed all of my drug options. Surgery is my last option. He went over the possible complications and risks associated with having the surgery. My GI doctor in Philadelphia advised me not to have the surgery and to just continue cleaning out. My surgeon said that unfortunately because of my multiple organ damage due to the gastroparesis (stomach, small intestines and colon) he doesn't even know if the surgery will work. The normal person who has surgery on their colon, their small intestines usually wake up within three to seven days. Whenever my dad had his surgery for his colon cancer, his small intestines woke up within four days. However due to my small intestines being somewhat paralyzed because of the gastroparesis, they have no way of knowing. It could be seven plus days. The Smart Pill test showed that my small intestines moved fifty percent slower than the "normal" person.

If the surgery isn't a success, I will have to go back to cleaning out with magnesium citrate or another drug that is similar. The only trouble with that is those drugs were not made to be taken on a twice weekly basis. They do damage from long term use. I've consume somewhere between 70 and 90 bottles of magnesium citrate in a little over a year I suppose. That is WAY TOO MANY!!!!

Another factor that plays into the surgery being successful is my pelvic floor dysfunction. I'm not like most people who have pelvic floor. My issue is that I can't relax those muscles. Whenever my GP started effecting my bladder, I had to learn how to cath myself. (To all of those out there, if I can do it - you can do it. It's easy.) My GI doctor sent me to a urologist because I was retaining due to my GP and one of the medications I took. My bladder had literally grew and I couldn't relax those muscles. I had to learn how to cath in one appointment. Throughout many, many appointments my urologist would tell me "Jennifer you have to relax". Whenever I would relax those muscles, everything worked just right.

Anyway... if my pelvic floor muscles lose their function due to the GP and I can't maintain them, I'm in trouble. I will have to have an ileostomy bag. I am dead set on doing everything possible to avoid an ileostomy bag. I know that that they not that bad but I'm twenty-four. What twenty-four year old wants an ileostomy bag?

As for the feeding tube, we briefly touched the topic (we had discussed it at an earlier appointment). My GI doctor previously told me he wanted me to have one; preferably for six months. Whenever I mentioned it to my surgeon, he said that when the time came, I would either get it in the OR the day of surgery or I'd have another surgery and have it inserted. I think I'll be checking with my GI doctor to clarify. I really don't think I'll be up for two surgeries; I'd rather combine them and get them over with.

My surgeon wanted to make sure that I understood the risks and complications of this surgery... multiple times. This surgery is like a big gamble or playing in Vegas; you might win, you might lose. I told him yes and explained my reasoning. He understood and again told me that I didn't have any other options medically, shook my hand and told me to hang on. Waiting almost eight weeks for surgery seems like forever especially when you add around 32 bottles of magnesium citrate to it.