my life with gastroparesis

being thankful...

2012-01-13T19:53:00.000-08:00

Growing up I remember continually remember fussing about having thick hair. Thankfully God gave me a head full of hair because it is coming out quite nicely due to my every other day clean outs. There's nothing quite like throwing away a palm sized amount of hair each day and knowing that it there is nothing I can do about it, I have to clean out. No I'm not going bald but losing this much hair every day adds up. I've decided to go get my hair cut to see if it would make my hair look some what thicker but you know how it is, once you cut it you wish that you wouldn't have.

I talked to my GI doctor's office this week and it was decided that I am going to continue cleaning out on the schedule that I am on until further notice or something changes - every other day. This is going to get old real quick. Today magnesium citrate bottle count was number twenty-seven. It's kind of funny, I have to go to Target to get my magnesium citrate. I have tried numerous types but it is the only type that tastes decent enough to keep down and have it stay down. When I go to Target, I clean out the shelves - I buy it all. The cashiers look at me like I am insane. I love it!

"Do you run some type of nursing home facility?"

"Oh what a cute little glass bottle! I've never saw this before." (I'm laughing to myself thinking yeah, what it does is real "cute" as well.)

"Oh my gosh that stuff is horrible! I've had to drink it before. The last sip is the worst!" (Cashier after my own heart.)

It's a really odd life and situation to be in; who does a bowel prep every other day? I do and I'm twenty-four but I've adjusted and accepted it. It's really weird but it's kind of comforting knowing that this is how it's going to go from here on out hopefully; I'm going to clean out. Last year was so up in the air, it was crazy both physically and emotionally. Am I having surgery, when is my surgery, will my surgery work?

This year will hopefully be different. This year I'm cleaning out. This year I'd like to live just a little. I am a home body. I love being at home. I have everything to keep me occupied and busy. I have never been the type to be bored at home. However this year I'm getting out. Last year I only made it to Philadelphia and having a gastric emptying scan or an anorectal manometry is no vacation. I am going to Indiana to spend some time with one of my close friends which I am extremely excited about. I am also going to New York City. It is going to be interesting to see how I am going to travel and get through or around my clean outs. I am determined to travel.

I am excited about the upcoming year. I am working on some personal changes, a more liquid diet and walking more to help with bloating and distension. Hopefully this year will be a much smoother, less health event but fun year.

a new year of possibilites...

2012-01-01T12:11:00.000-08:00

A new year means a hopeful year of better health. The past year was defiantly a year full of surprises. Who would have thought that when I left Temple University Hospital in December 2010 seeking a second opinion about a gastric pacemaker would be followed by physical therapy for my colon which ended up with the recommendation for having my colon removed. After seventeen months of cleaning out (140+ bottles of magnesium citrate), many, many tests and a biopsy to once again rule out Hirschsprung’s Disease, I had my colon removed. This has been my year in a nut shell. Hopefully this upcoming year will be a little less eventful.

The past month has been nothing but cleaning out every other day. I did get to talk to my GI doctor again and we discussed how nothing is really knocking my small intestines into some type of rhythm. It is just like déjà vu with my colon in a sense. I ask my GI doctor if my small intestines could slow down like my colon did and he did say yes. If I am slowing down, I’ll just have to keep cleaning out which just sucks but it is okay. The upside to having the surgery was that I had two months of no cleaning out and I got that painful, trouble making colon out! We’ll just have to wait and see what the next few weeks hold.

I did get a stomach virus this month. I have to say GP and stomach viruses do not go together. I needed to go and get an I.V. earlier this month but my doctor’s office in town could not give me one and I did not feel like driving almost an hour to the hospital where my GI doctor is to get an I.V. so I just toughed it out. I can tell that physically that I am cleaning out; the magnesium citrate is defiantly taking its toll. I am trying to eating the right foods and I need to work on my intake of fluids so I don’t dehydrate so quickly. You don’t realize how important your organs are and what vital role they play until they are gone.

changes...

2011-11-20T11:06:00.000-08:00

This is my favorite time of year, from Halloween to New Year’s Day I love everything about it. I love that the weather changes as well as the time, all of the festive decorations, the family togetherness, the music, the holiday scents and flavors that only come around once a year and even the holiday shows that come on TV. I love this time of year. Thanksgiving and Christmas are my two favorite holidays but those holidays evolve around food and lots of it! Last year getting through those holidays was a blur between clean outs, work and going to Temple University Hospital twice. My goal every holiday season is to stay out of the emergency room due to holiday eating. Last Thanksgiving I was very lenient with my diet; this year I have to be more careful.

The past few weeks have been very vague. I went to see my surgeon a couple of weeks ago and my incisions look wonderful. He said that I need to talk to my GI doctor about my regulation issues. We discussed my nausea levels and if they have seemed to improve since the surgery and I told him that I hadn’t noticed any difference. After discussing my overall post-op condition he mentioned the idea of an ileostomy and how it had helped a fellow GP patient. I told him that I was happy with how I am doing regardless to the regulation issues. I was very thankful for him helping me surgically and relieving me of all those clean outs. He said if I needed him to give him a call.

I decided to give it another week before I called my GI doctor about the regulation issue. Since I have come home from the hospital I have used milk of magnesia several times to clean out and just doubled the dose to make it stronger. Unfortunately it was never efficient enough. I noticed that I started gaining weight and was becoming distended. How can someone gain weight when they are hardly eating; things are backing up internally. I called my GI doctor and drank a bottle of magnesium citrate while I waited. I was beginning to experience pressure pain and it felt as if my sides were going to rupture at times. As many times as I have fussed about drinking that terrible stuff I have to say it is very efficient at doing its job. My GI doctor finally did return my call and asked what was going on. I explained the whole situation and his suggestion was to continue taking my two Dulcolax that I take in the morning, my regular GP diet and a half bottle of magnesium citrate every day or every other – my choice. I chose to do the magnesium citrate every other day. Hopefully this will create some regularity for my system. If not we’ll go from there.

During this time in the back of my head I’ve been thinking a couple of things;

The surgeon told me that I would slow down going to the bathroom and that it would just take time.
I’ve been down this road before with my colon. Is this a repeat with my small intestines? Are they slowing down like my colon did?

I have known for a long time the possibilities and I’m okay with that. I have also been working on managing my personal stress. One day it just went off like a light bulb that I have to manage my stress. Stress is like throwing gas on a fire for me. It has got to where my stomach and intestines become knotted up and hurt, my pulse shoots up and flare ups seem to happen a lot easier. I have to manage my stress and stay calm which is perfectly fine with me. Who doesn’t like being less stressed?

learning new things...

2011-10-26T15:12:00.000-07:00

I went to see my gastroenterologist last Wednesday. I don't believe I have ever had an appointment fall on such a better date or time. I had started experiencing some abdominal pain especially after I ate and it continued to intensify Tuesday throughout the night. By Wednesday morning I was only able to eat one piece of toast without the pain becoming comparable to some of the surgical pain I had recently experienced in the hospital. Something felt off, I should be moving forward with my diet not backwards.

My doctor did notice some distention of my stomach but there was no hardness and I was still able to go to the bathroom so no blockages! This was one of my main concerns. As he felt around he said that the distention was most likely my small intestines being pushed out. All along I've thought that I just had a bit of a stomach. I use to work out, run and do all of the types of crunches to get rid of this "pooch" that I had. I now know why it never left; it was an organ. (All of this working out was several months after my diagnosis. I was living in a different world and life style then.) I explained to him that after I ate, the pain intensified. He decided to call my surgeon and they both agreed on doing an x-ray abdominal series just to make sure everything was flowing correctly.

My next question for my doctor was about laying down at night and the sensation I experienced; what was that? Were my intestines really moving? He said that before my colon was in place and that kept my small intestines from moving along with everything else being impacted. Now with the colon being gone, there was room for things to move around along with the food that I consume throughout the day. One thing that was comforting and relieving to know was that I know longer have to deal with my IBS anymore because I no longer have a colon. No colon = no IBS! I got the same answer from both my GI and my surgeon; stay away from fruits and vegetables in order to avoid blockages. I am allowed to eat peanut butter, pasta and cheese though. As for the whole constipation issue, I was confused as a whole. If I had constipation before my colon stopped working and when my colon stopped working I had issues of colonic inertia (where the nerves and muscles of the colon do not work normally so nothing is able to be moved throughout the colon as it should). Since I no longer have a colon, am I constipated? That question was one of those "I don't know questions" because I have a delayed small intestine so we don't know how delayed my small intestine is/will become over time so we don't know if I'm constipated because I'm not regulated yet. Who knows?! All I know is I am so glad I am done with the colonic inertia thing for good. It makes constipation seem like a walk in the park.

I did talk about blockages and the NG tube with my doctor. We laughed about it because I honestly didn't know what I was signing up for when I agreed to have the tube inserted in my nose but I honestly didn't care at that point. He did say that if I ever had a surgery that made my organs become like they were in the hospital whether because of anesthesia or surgery (that was my understanding; anesthesia puts our bodies to sleep) I could get another blockage and get to experience all of that lovely experience again. Oh what FUN! I'm really not worried after all, I'll beg to have that NG tube inserted while I'm still out of it so the worst would be over ;) . After all, I've got bigger things to worry with. I was thinking one day, I will never have another NG tube in my life and then I realized I said that about the anorectal manometry; I had another performed manometry within several months of saying the very same thing. GP has some uncomfortable procedures but I suppose they just make you stronger as a person.

I had my x-ray series the following morning and it was a little deja vuish (if that even counts as a word). I walked right past the bay where they hold the inpatient beds who are waiting for x-rays and then if I didn't walk right into the same room and have the same x-rays when I was in the hospital. Oh my gosh!! Number one; there is no way I could have done those x-rays that day; I'm sure of it now. Number two; seeing all of those people who were patients (in house) made me remember how sick I was and made me thankful for my recovery but feel bad because I know what it is like to lay there and feel like you're going to die because you feel so bad. Crazy feeling to experience. Anyway, I got my results and there were no blockages and the pain that I had been experiencing was from surgical air. Another one of those GP/delayed motility perks i suppose.

So along with all of the informative information I've learned as well as bodily adjustments I've been experiencing I went to the dentist yesterday. I dread the dentist; between the noise, scraping of teeth, flossing and gagging, I'd rather get a pap smear or several Heparin shots and I just had around 36 of them. I do NOT like it and I take care of my teeth. I'm a frequent brusher, between five to seven times a day and I do the rinses as well. So I go to the dentist and I cringe my way through the scraping and flossing (I hate flossing; give me gore and blood any day just not flossing) and we get to the mouth trays with the foam stuff and that suction thing. This gets me every time. I start to gag and I am telling myself to suck it up; the NG tube was much worse, it's just for one minute. Finally the dentist comes in and I ask him to check my teeth for any damage the magnesium citrate could have caused. Yes of course it has, I should have known! One hundred and forty plus bottles have caused my teeth to become cloudy and I always brushed immediately after. He asked why I was drinking that and at that quantity and went on to ask about my diet. I found out that liquid diets and the mouth (teeth, gums, jaws) don't mix well over time. Since my diet is more liquids than solids I will not be chewing as much so there poses the issue. My mouth (teeth, gums, jaws) will not be used as much so the body will stop sending nutrients to it (like I have much to contribute) and over time things will start to go down hill. As for the liquids, liquids don't require chewing so cavities become a problem because chewing helps this process. I need to start chewing sugarless gum, rinse away the liquids when I am out in public away from my toothbrush and personally I am going to try and watch how many sugary drinks I take in. I came out with one cavity.... stubborn GP. I would have never in my wildest dreams though GP would effect my oral care but obviously it does.

I have learned so much within the past week and that's not including what's going on with me at home with my GP. It is a constant thing trying to keep up right now. For instance, I ate a few Cheez-Its yesterday and it turned my stomach upside down. Those have always been a safe food. It is all about trail and error again and learning what works and what doesn't work. I feel like I have been newly diagnosed again. I am still happy with my decision though about the surgery. I think about it all the time because my body is constantly reminding me and I wouldn't go back to the old mag citrate way of life for nothing!

learning a new normal...

2011-10-18T09:51:00.000-07:00

It has been one month today since I had my surgery. Where has the time gone? It is been such an overwhelming and yet odd experience. I was talking to Jacob one night and I told him that I had experienced so many changes to my body that I didn't feel comfortable with it. I know that sounds extremely strange but I went into this surgery expecting to feel this way when it was all said and done. For example I had the whole magnesium citrate routine down pat; I know what to expect and when to expect it. I could go to bed and rest easy knowing that nothing unexpected would happen. However with the surgery, everything is new and it has thrown my body all out of sorts.

At night when I lay down, I feel my whole abdominal area shift and everything moves which makes me nauseous. I like to sleep on my side and it took me several weeks to be able to do that because of my incisions pulling. When I would lay flat they would pull but not nearly as much as they did when I laid on my side. When I go to bed at night I love to listen to my ipod. Music makes my world go round. Until two nights ago, I just wasn't comfortable enough to do that. It sounds crazy but I just wasn't ready. I have finally been able to make it through the night several times without waking up which has been WONDERFUL!! I'm usually up several times during the night which gets old and just makes for a long night.

My diet is generally the same; mashed potatoes and bread. I have branched out and added a few things for variety and flavor, I was getting desperate. I've started eating chips which my surgeon approved as well as baked tator tots and sugar cookies. I have attempted to eat french fries and they seemed to be okay but I am proceeding with caution because of the grease. Friday I started craving Dr. Pepper. I had been doing so well but I gave in; what could a small half glass hurt? I slowly drank it and it didn't bother me until around 1:30am. Oh my goodness the intestinal pain! I have decided to give up Dr. Pepper, I am officially finished. It was not worth that pain.

Yesterday I started having abdominal pain followed by some nausea. It lasted throughout the yesterday and into today. I'm not sure if I have been eating too much or what. I decided to go to a more liquid diet to give my stomach some relief. I ate some potatoes for lunch today and sure enough the pain and discomfort intensified. Luckily I go to see my GI doctor tomorrow.

I am becoming much more comfortable with myself. I have learned to take it easy and slow down. I am having to learn what works and what doesn't work with my GI tract. This is going to be a long process that will just take time.

nine nights, ten days...

2011-10-08T15:19:00.000-07:00

After many months of waiting September 20^th, the day that I was to have my colon removed had finally arrived. My surgery was scheduled for 11:30 that morning and we were to be at the hospital that morning at 9:30 to begin the admitting process. I woke up feeling no feelings of anxiety or worry. I had had months to prepare for this. After all, this whole process had been seventeen months in the making so my body was tired and I had had plenty of time to work through the emotions.

We arrived at the hospital, Jacob and I being the first to arrive and checked in. Whenever we have any type of surgical procedure, if I can have any type of control of where we sit, I pick the very back corner of the waiting room where we sat when my dad had his colon cancer surgery. It may be strange but it just feels comfortable and I always know where everyone is at. I figured that I would be waiting half the day before I was called back due to surgical delays since I had a later appointment but I truly didn’t wait that long. Within an hour and a half I was in the surgical bay in my gown and being hooked up to an I.V. I had expressed my concerns to my GI doctor, surgeon and anesthesiologist that I did not want an I.V. in my foot or neck like the last time. This time I was very lucky; my nurse was experienced enough to know by my skin type, hair and freckles that I would be a hard stick so she knew where to go. It took one stick and my I.V. was good to go! My family was allowed to come back and spend some time with me. Personally it is always easier to be the patient than to watch your loved ones being the one on the gurney. Before I knew it, my surgeon came by and ran over a few last details as well as the anesthesiologist. We said our goodbyes and my family left. They ask me a few last questions, administered some medication and rolled me away to the operating room. I was wide awake when I got there. They let me move myself onto the operating table. I even talked to them for a bit. They started hooking me up to some of the machines. Me, being a curious person medically was checking everything out. There was so much to take in. They placed the mask over my face and told me to start taking deep breaths and that is the last thing I remember.

My surgery lasted for around four and a half hours and I was in recovery for around two and a half hours. When I woke up in my room, the pain was horrible. I remember to the best of my knowledge moving onto my bed and realizing “oh my gosh, I just had surgery and no one told me it would hurt this bad.” I told the nurses how bad it hurt in a not so nice way. They had me on a PCP morphine pump which allowed me to push it every six minutes which was nice at the beginning to curb the pain.

By Thursday, I had started to come around and began to feel better. I had ate some jello, showered and even walked a few laps around the floor. Everything was looking up. Thursday night I started feeling bad. I started to experience some diarrhea and well as some increased nausea. My parents were getting ready to leave and Jacob was going to stay the night with me. I ask my mom to stay just a little while longer until I got to feeling better but that never happen. Not long after that I started vomiting every time I moved until two or three the next morning. It was horrible. Every time I would vomit, my abdomen would feel as someone was twisting it and sticking a knife in it; horrible, horrible pain. During this time, I did something I feel so terrible about, I sent Jacob home for no apparent reason. Jacob has always been by my side through thick and thin. He stayed every night but this night. Morphine is not a good drug for me; it makes me feel strung out and clouds my thinking. No more morphine for me please.

Friday morning a doctor from the GI department came up and ask what was going on. By this point my mom had been rotating bathing basins instead of those little curved basins. My mom told him what was going on and he asked what color my vomit was. My mom said that it was the same color as my diarrhea (sorry if that is TMI but it is relevant). This had already crossed my mind earlier in the night when I saw it come out as I was throwing up, lovely – I’m throwing up poop in so many words but I was too sick to care. My mom looked at me and told the doctor to hold on a minute and he could see for himself and sure enough he did. The GI doctor was very sympathetic and I ask if my GI doctor was in. Within a short time, my GI doctor was in the room telling me that there was nothing they could do for me except put in an NG tube down my nose. The vomiting was coming from where my system had shut down during surgery and everything had backed up and there was nowhere for it to go except up. The NG tube would suction it out. I agreed to it because I was exhausted and couldn’t take much more.

They sent two nurses in with the NG tube shortly after to place the tube. They placed a good amount of KY Jelly on the end of the tube and had me drink cold water as they stuck the tube up my nose and down my throat. It didn’t work very well. I started projectile vomiting. This happened for an hour. After several attempts, they got the tube down. It was one of the hardest things I have ever experienced. I have a horrible gag reflex so that didn’t help at all. I kept the tube in until Tuesday I believe.

From Friday afternoon until Monday afternoon, I really have no memory of anything. I have bits and pieces. I had a foley catheter and that posed a whole big issue with my bladder. The nurses wanted it out and wanted to do in and out catheters and I told them I would do it myself since I know how. I didn’t want them touching me (lol, the morphine talking). Later in the afternoon, I told them to leave the foley in because I was too weak. This kept on going until my surgeon stepped in and told them to leave the foley in (thank you!).

Another issue was where my organs had stopped and there was the possibility of an ileus (an abdominal blockage). They needed to do an x-ray to confirm this. I didn’t want to go (again, the morphine talking). They brought x-ray to me but it wasn’t clear enough so I had to go. At first they brought a wheelchair. Yeah, I could barely sit up; there was no way I could ride from the eleventh floor down to one of the bottom floors to have a series of x-rays – forget it. They came back with a gurney. I agreed to go and I thought I’d die as they transferred me from the bed to the gurney. It was the longest ride. They said I’d be gone ten minutes, it took over an hour. When we got down there I had to wait for a few minutes and I got to thinking, I was the youngest person waiting and in the worse shape from appearance. I felt as if I was going to die. The x-ray technician was really nice. He asked what I had done and had the look of “oh my gosh!” He ask if I could stand for three x-rays each taking one minute each. Three minutes, he would have to help me up and he agreed. I sat up on the gurney and I was done; there was no way I could stand up for three minutes. We had to do the x-rays lying down. It was all I could do to roll over to get the films under me and he had to help me roll over, it was really bad.

Monday a friend from work came but I had no memory of it. Monday afternoon I remember because I remember things started turning around. Jacob and my dad told me over the weekend I would sleep with my eyes open. They would look over and I’d be there but I wouldn’t be, I’d just check out. Several people visited but I have no memory of it. My mom said I didn’t talk, I just answered in moans and groans. I defiantly don’t want to relive that weekend.

Monday when I started feeling better, I realized that I had the tube and it became really annoying. I couldn’t look at the liquids that it was pumping out. It was too nauseating. Since I hadn’t vomited recently, they took the tube out on Tuesday. Every morning at 6:25, anywhere from five to seven doctors would come in and examine me. They ask me if I’d like to have the tube removed; YES! It was super quick. All I had to do was breathe out and it was out. That day I started on liquids. The next day my surgeon wanted me to move up a step on the gastroparesis diet; mashed potatoes, rolls and toast. Everything stayed down believe it or not. The deal was if I threw up, the tube would come back into play. I did throw up one morning when they gave me medication. They gave me everything in pill form except my Protonix and Colace. It was NASTY! I only threw up the medication so it didn’t count luckily.

My surgeon couldn’t believe how everything had turned around. One day I went to the bathroom thirty-five times but since then it has slowed down. I ate five meals in the hospital and each went without a hitch. I spent nine nights and ten days in the hospital. He released me under the condition that if anything went wrong, vomiting, abnormal pain, not going to the bathroom right I have to come back. I was sooo happy to be released.

The almost hour long ride home wiped me out. I didn’t realize how weak I was until I got home. Since then, I’ve over done it several times but I am getting some of my strength back. I realized that this would be a hard surgery but I never realized just how hard of a surgery it was. I went into the hospital weighing one hundred four pounds and came out weighing ninety pounds. My diet now consists of mashed potatoes, bread and a few chips for flavor. I have sneaked some sugar cookies in there, I couldn’t resist. I am still very scared of food. I do not want to have deal with the possibility of having another ileus. The whole bathroom issue is slowing down which is nice. The whole process will just take time to adjust to learning what works with my stomach and it will take time for the bathroom issue to slow down.

counting down...

2011-09-16T19:24:00.000-07:00

Today I started my second round of my surgical prep. I was so excited; this was my last bottle of magnesium citrate. There is the exception that I may have to clean out again if the surgery isn't successful but I'll deal with that when I have to. Anyway, it was my LAST bottle of magnesium citrate (YAY!). I paced myself and got through the bottle seemly quicker than usually. I suppose the motivation came from knowing I was "ultimately" finished with the nasty stuff. I got it all down and darn it I gagged and up it came! ARE YOU KIDDING ME!?!?! I am finished with this stuff and now I am going to have to drink the amount that I just threw up. Wonderful... no, not really. Instead, I went for a walk with my grandmother to get what I had consumed down and moving in my GI system. I learned a long time ago that if I walk after I drink, it gets things moving much quicker and efficiently. When I got back home I carefully drank the amount I needed and prayed that I wouldn't throw up more. Who in this world would want to more? It never fails, whenever I need to throw up something, I can't. However when I don't need to, like in this instance, I do. Ultimately, the goal was accomplished. I am finished with magnesium citrate!

With Tuesday approaching and my clean outs taking their toll on me, I am getting weaker. Wednesday clean out left me feeling like I usually do - tired and weak. It kept me up until three Thursday morning. I woke up later that morning and as soon as I got up, I blacked out. It left me wondering how the day would go considering how the morning started but I mostly felt weak. My legs would just tremble as I stood or I would have that constant jello feeling. It was either one or the other but it was a good day.

I started my second clean out today and I was told to rest by my parents. I had to switch from a liquid diet to a clear liquid diet, you know the "clear liquid diet like you're having a colonoscopy diet." This diet will be my undoing before it is over with. I always struggle with this diet. I get so cold, hungry - probably because I know I can't have anything and just weak from this diet. Since Wednesday, I have consumed a box of those Edy's Frozen Fruit Bars (I love them!). Today I had to switch over to plain jane popsicles. There is no comparison between a coconut frozen fruit bar and a banana flavored popsicle... nothing! I'm just stating the facts. I have to live on this diet for who knows how long so I'll get to try all the flavors I'm sure. One of the healthy things I'd like to do after surgery is give up soft drinks with the exceptions of regular Coke when I'm really nauseous. You know how everybody has their drink? Well I'm a Dr. Pepper drinker, day or drink. I could drink Dr. Pepper twenty-four hours a day, seven days a week and never get tired of it but DO NOT get me a two liter, I only like cans or twenty ounce or below size bottles. The drink loses its kick if it's in a two liter bottle.

Sunday I start the finale; Golytely, a gallon of salt water basically. My plan, (ha, ha - the key words being "my plan") is to have everything somewhat ready by Sunday morning so I can just focus on the clean out. I am a very organized person, I'm all about the details. If I can get everything somewhat ready, I will be able to relax and not over do it Sunday or Monday and be able to rest. Knowing how weak feeling I am now and how weak I will be by Monday, I'm not going to be up to my usual speed.

I've been thinking how it has been such a long process; emergency room visits, missed work days, doctor appointments, tests, surgeon appointments, phone calls with doctors, a biopsy and it will all be over with soon. I am so excited and happy. Life can eventually move on. I will still have gastroparesis no doubt and I can move forward. It all makes me happy.

looking back...

2011-09-14T17:11:00.000-07:00

This time next week, I will have had my surgery and be in a room enjoying some nice pain medication I'm sure and on my way to recovery. It is hard to believe that it is less than an week away. I was thinking today, seventeen months with an average of two bottles per week, at the beginning for two months I did one bottle per week and earlier this year I was doing three bottles per week, I have consumed a ballpark average of around 143 bottles of magnesium citrate!!! No wonder I get cold chills when I look at the stuff and have to gag it down. I have consumed WAY too much of that stuff. It wasn't made to drink on a bi-weekly basis.

Today I started my surgical prep. It will take me six days to prep for the surgery; two bottles of magnesium citrate and one gallon of Golytely. I will of course be on a liquid diet from here on out. I will be completely wiped out by the time Tuesday rolls around but I would rather be clean than have any surgical complications from not being clean. The only issue that poses from cleaning out this much is where are they going to find a vein at? I have expressed my concerns and they claim that everything will be fine so we will see. As long as no I.V.s go into my feet or neck, everything will be fine with me.

Thursday morning I woke up and my stomach started bothering me after breakfast; that intensified nausea and acid feeling. I attributed it to breakfast and my more relaxed diet over the past few weeks. My GI doctor had told me at my last appointment to eat which makes since because after surgery, it's going to take a while to get back to some normalcy. My body will have to learn how to function without a colon and that will take time. Who knows what my GP will be like after surgery. I have been enjoying my food but it has caught up with me. I should have known that Thursday morning was the beginning of a flare up. My parents went out of town Friday night and I had went swimming with Jacob. We went out for dinner (bad idea) and I came home and my stomach started distending. It was not pretty. I was so nauseous, miserable and full. Why did I eat?!? I finally gave up round eleven thirty, took my Tylenol PM and went to bed hoping that it would help get me through the night. I called Jacob and told him to keep his phone on in case I needed him. I prayed that my stomach would settle, who wants to go to the emergency room in the middle of the night especially on a Friday night.

I woke up the next morning and I thought I was free and clear of my flare up but no. I of course was out of Zofran and questioned going to the emergency room if my refill wasn't refilled by my doctor at the pharmacy. I was getting desperate. I was trying to drink my magnesium citrate and it was a downhill battle. After an hour of attempts, I finally got my magnesium citrate down and my parents arrived with some Zofran - RELIEF!!

It's Wednesday and I'm still dealing with this flare up. I had to stop eating so I could start my surgical prep but I realized that this would be my last time that I would be able to eat for a while so I just dealt with the nausea and distention. I had hoped that this weekend's clean out would help end my flare up but it seemed to make my stomach and intestines feel more inflamed.

If my flare up last until my surgery that is fine. At this point I really don't care anymore. I got to eat and that was what mattered to me at that point. I have made a list of things to do and slowly everything is getting done. All that matters is getting to Tuesday. I am so close!

a change in plans...

2011-09-03T22:00:00.000-07:00

The past few weeks have been relatively normal. I am no longer working. My employers and I decided that it was best for me to stay at home and gain as much strength as possible before my upcoming surgery. The last few weeks of work had become really difficult for me. Between the blacking out, the dehydration, the headaches, the chest heaviness and feel weak, it was all becoming too much.

I met with my anesthesiologist and surgeon on August 25th for pre-op. We covered everything from the blacking out and high pulse rates to my dehydration and issues with finding veins on the day of surgery. We talked about the whole "cleaning out" process. Before he had mentioned drinking two gallons of Golytely but luckily he changed his mind. We talked about it and I told him that I'd try it but I just didn't think that I could physically fit all of that liquid into my stomach since you drink it in fifteen to twenty minute increments per gallon. When I did a gallon of Golytely for my colonoscopy, I could not do the entire gallon because it literally would not fix into my stomach due to the slow emptying of my stomach. Tests later showed that I had trouble with liquids.

He came to the conclusion that I would do a round of magnesium citrate then switch over to the Golytely. Just knowing that I don't have two gallons to drink makes me feel so much better. I asked about my diet after surgery; when would I be starting liquids and solids? He told me that he was leaving everything up to me (THANK YOU!).

This brought me to my next question; a feeding tube. We have talked about having a J-tube which is a feeding tube that is put in your small intestines put in. He said the only issue with having a J-tube is that I will be sick.... every darn day. If I start my feedings at 10pm, by 2am I will be up sick. I have spent enough time in the bathroom, I'd like to take a break. I told my doctor I didn't want that. He said that it would be a continual thing and that I'd never get any rest. He would contact my GI doctor to discuss other options being either a G-tube or TPN.

We were finishing up the appointment and my doctor said there was one last thing, there was a conflict with the surgical date. He needed to reschedule. WHAT?!?! I automatically started thinking about dates. This is a surgeon's office at a hospital who is very, very busy. I. AM. IN. BIG. TROUBLE!! Luckily he came back in the room with date, September 20th... thirteen days away from the previous surgical date. He apologized, it was out of his control. When we got out of the office I looked at Jacob - SEPTEMBER 20!! I've been cleaning out for fifteen months and waiting on surgery since March. Yes, it's just thirteen more days but I was ready then.

Needless to say, I got over the anger and frustration. There was nothing I could do about it. It gave me thirteen more days of being pain free. Who wants post-op pain right? The time is going by quicker than I thought it would. I can't wait for September 20th to get here, I'm ready to have it behind me. Everything right now revolves around this date. I'm just ready to start the recovery process and begin to feel better even though it will be a struggle at first.

an unsure forecast...

2011-08-24T16:42:00.000-07:00

I only have two weeks until surgery!! If someone would have told me in April or May that I would have to wait until September to have surgery, I would have pulled my hair out. There were days, honestly I didn’t think the biopsy day would get here and here we are two weeks out from September 7^th…. wow! I have mixed feelings about the surgery. I wouldn’t cancel this surgery for NOTHING! You know how they say you can’t be sick and have surgery. Call if you have a cold or cough…… This girl here, you’d never hear from her.

I am darn well determined to have this surgery. My family has been sheltering me from people who are sick. Whenever my GP got worse, I had just started studying to take an EMT class and my doctor told me that working in situations like that would not be good since I believe 70% of the immune system is in the intestines. My intestines are affected by the GP. I stopped studying for the class but if someone I was around was sick, I didn’t really heed the warning. I am now. Just get me to the OR and everything will be okay.

Up until yesterday, I was good with everything until I realized just how soon my surgical date was approaching. It would be wonderful if we lived in a perfect world, like the old Walgreen’s commercials, and we knew that everything would be okay. I don’t have all the answers, will my surgery be successful, will my pelvic floor muscles hold up or will I one day have to have an ileostomy? I am determined to not have the latter but ultimately I know that God’s not going to give me more than I can deal with so that is where I find my comfort. No one said life was going to be easy or comfortable. All I know is that I have two weeks left and two bottles of magnesium citrate!!

a good GP day...

2011-08-10T14:34:00.000-07:00

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?

2011-08-03T11:45:00.000-07:00

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...

2011-07-17T07:36:00.000-07:00

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.

running on empty...

2011-07-12T13:39:00.000-07:00

Have you ever had a stomach bug or the stomach flu and felt completely drained? That is what it feels like to have gastroparesis. It is a never ending cycle of stomach flus that never get better or go away with time. Our energy is never completely replenished.

I have felt this way for who knows how long. My GI doctor told me that I would continue to go downhill and feel drained and exhausted due to my colon pulling everything down. I’ve been blacking out more, feeling weaker, having more headaches and dealing with more dehydration. I’ve even started this routine of throwing up some of my magnesium citrate after I drink it which isn’t good. I REALLY, REALLY struggle getting one and a half bottles down; I don’t need to be losing any of that stuff. However I see my surgeon this Thursday and I will have my surgical date!! I will get to walk in Target and know how many bottles of magnesium citrate to buy. No more guess work. I am so excited!

my GI appointment...

2011-06-27T15:54:00.000-07:00

I had an appointment Wednesday with my gastroenterologist to discuss the recent physical changes I have been experiencing. He said that the reason I feel so wiped out and exhausted is because my colon is so slow and damaged (lack of a better word) that it is pulling down my other organs with it. Whenever I clean out, it just makes the whole situation worse and me more exhausted and weak; that’s where the blacking out is coming from. Unfortunately it will not get any better until my colon is out, I’m only getting weaker. Since I’ve had some trouble with the magnesium citrate working as effectively the past few times, he recommended that I increase the amount that I take to a bottle and a half at a time. He recommended that I start drinking several different type drinks in addition to what I already drink to help keep me going and hopefully replace what I lose and help me more hydrated when I clean out.

The next thing we discussed was my veins. Whenever I dehydrate or have to do blood work, it’s an ordeal. Having to be pricked seven times and then resorting to my foot or having an I.V. in my neck is not “comfortable” but hey, nobody said life was suppose to be comfortable did they? No, they did not. I was hoping he could offer me something, a port or a PICC line but he said that was not his area and I needed to talk to my surgeon. It was bad to be poked and prodded numerous times but they would figure something out.

As for my nutrition, it has been horrible. Rice, potatoes, bread, pasta and protein shakes don't cut it. He said that he wanted to have my surgeon put in a jejunostomy tube (J-tube) which is a feeding that would go into my smaller intestines. It would supply me with up to two thousand calories per day. The plan is to leave the feeding tube in for up to six months, if I need it in longer we will leave it in, if not, it will come out. When I heard how many calories I would be receiving, I automatically thought of gaining weight in all the wrong places (how pathetic, I know). My doctor looked at me and said no, this was not going to put weight on me, this was to help maintain the weight I am at now. He said this surgery is going to be extremely hard, like running a hundred meter race one hundred times in a day hard. He told me as of now, I could beat up my colon and eat (within GP moderation of course)!

Overall the appointment was very beneficial. I knew something was up, I just didn't know this is what it feels like when your organ starts pulling down your other organs... it's not a good feeling. I am trying my best to work but it is all I can do some days to make it until lunch. As for the feeding tube, I am not worried about it. I had to confront this possibility a little over a year ago so I knew that it would one day catch up with me. Honestly, I welcome the idea of feeling better even if it gets worse before it gets better, think about it; no magnesium citrate, the possibility of not losing as much hair and nails, more energy and more nutrients! My life is going to drastically change no doubt but that is okay. It is going to be a hard six months but I can deal with it, I'm excited!

feeling like jello...

2011-06-20T18:13:00.000-07:00

Something is up and I’m not sure what. It all started last Tuesday when I began my first weekly cleanout. I had woke up Tuesday with a horrible headache so I went back to bed to sleep it off. I went in late to work and at lunch started drinking my magnesium citrate. I was up throughout the night cleaning out. Since my GI tract is so slow, I am not like the normal person, a bottle of magnesium citrate takes a while; anywhere between 24 to 36 hours. I woke up Thursday morning expecting to go to work but I was drained and very weak feeling. I figured I could go in at lunch but that never happened. I rotated from my bed to the couch all day. I drank protein drinks throughout the day hoping to gain some strength so I could go to work the next day.

Friday morning came and I still had that jello-ish feeling in my legs, like they were going to collapse under me but I went to work anyway. We have devotions every morning at work. I park below the building. In a perfect world, I would get to work in time and park at the building where I work and walk up to devotions but physically I just don’t have the strength to do that anymore in the mornings; getting ready for work drains me alone. Friday morning the walk from the parking lot to the building where we devotions was about more than I was capable of doing. One day, I’m going to collapse in the parking lot, whether it be walking to devotions or lunch it’s going to happen and it’s going to kill me (not literally) because a twenty-four year old should not have this issue.

As for work Friday, I tried to keep up and I made myself a goal; work until lunch. I made my goal and then I left. I spent the afternoon on the couch hoping to shake my weakness.

I slept well Friday night so I figured I could handle a trip to Wal-Mart Saturday morning. I didn’t have much to get but as I was picking up my last few items, I realized that I was weaker than I thought and maybe it was time to have someone start going with me to town. I still had to get through the store, check out and drive home. I like to be independent, who likes admitting that they’re twenty-four years old and Wal-Mart is a struggle… not me. I came home and started my Saturday clean out as usual. It went well, no complaints. I knew that I would run into trouble because I was already weak and cleaning out would only make it worse.

Sunday was the very same; weak and drained (Have we distinguished a pattern yet?). I planned on working Monday, I need to work. I had been asleep for a while Sunday night and I woke up and knew it was going to be bad. My stomach and colon were going into spasms and the magnesium citrate obviously wasn’t out of me yet. I stayed up for a while dealing with that, I can’t sleep when I’m hurting like that.

With few hours of sleep last night, I had the same game plan, go in late this morning. I felt extremely weak and jello-ish but whenever I went to get ready for work, my head would repeatedly started spinning and my vision started going black. I decided that it wasn’t a good idea to drive to work needless to say I was probably too weak to work if I was beginning to black out.

Something however isn’t right. I go see my GI doctor Wednesday. I don’t know if my body is exhausted from the numerous clean outs or if something else is going on. I can’t keep going on like this, it’s wearing me out. Hopefully Wednesday’s appointment will be insightful. I want to be able to go on about life as normal as possible; who wants to spend all day on the couch?

friday: biopsy day

2011-06-15T11:49:00.000-07:00

I do not have Hirschsprung’s Disease!! I am so excited. I can finally move on towards having my having my colon removed. This whole process began around the first of March and here it is the middle of June and I’m still here with a colon! I’m soooo close.

I went Friday for my biopsy at the hospital. I had to go to the OR for this biopsy which was perfectly fine with me; I didn’t want to be awake for this procedure anyway. The anorectal manometry was enough for me to endure while beginning awake.

My surgeon had me prep/clean out before the procedure and I was NPO (nothing by mouth) after midnight so I was leaning on the dehydrated side. My veins are horrible to find when I am hydrated so I knew before I got there that they were in for it when it came time for my I.V.s. The lady who was doing my I.V. couldn’t find anything good in my arms and hands except for this one vein in my arm. She tried and the of course the vein blew. She asked where they last got the vein at and I’m thinking you’re not touching my feet, I’m sorry! Well she did. This is no joke, I laid there and prayed that there would be no veins in my feet because my feet are so ticklish and frankly I.V.s in my feet hurt really, really bad. She couldn’t find any veins in my feet!

About that time my surgeon and anaesthesiologist came in and decided that they could do the procedure with me awake. No way was that going to happen!! I told the anaesthesiologist that I needed to be put under; who wants to be awake during that? I didn’t. During this the nurse had been looking at a vein on my neck so they decided that they would use laughing gas to put me under and the gas would dilate my veins as well. They would use the vein on my neck for my I.V.s then they would switch over to general anesthesia. It sounded great to me, I was going to be put under, I was happy.

I did get to see the OR. I’ve always wanted to see that hospital’s OR. In my previous surgeries, I’ve got to see the ORs and even move myself onto the operating table believe it or not. I loved that part of the surgery, getting to see all the medical side of it. I’ve got to see my appendix and I have a slide of my gallbladder. I remember the OR and everything that was going on until I got the laughing gas, on the third inhalation I was out. I woke up in recovery and spent some time there receiving Zofran, Phenergan and some type of pain medication. The patch that gave me for nausea didn’t help like it has in the past when coming out of surgery.

We live around an hour from that hospital. Whenever my dad had his colon surgery, he said that was the longest ride home. Friday I understood that statement. The ride home after surgery may be one of things I dread the most.

The past few weeks my GP has had its ups and downs. I’ve been getting full relatively quick I’ve noticed. At lunch when drinking my Special K Protein Shakes, after finishing one, I feel almost too full and miserable at times. I’ve been dealing with headaches from not eating enough… imagine that. At work in the afternoons, I try to snack on something whether I’m hungry or not just to get the calories in. The magnesium citrate last night whipped me. I kept waking up during the night and I felt like it was coming up (GAG!), I was cold and hot all at the same time - it was just wrong! This morning when I woke up I felt like jello -that’s not a good way to start to your day. You should feel like you’ve slept. Cleaning out is exhausting.

I go see my gastroenterologist next Wednesday and we’re talking about some type of port or something where I don’t have to be poked all throughout my surgery. I’ve got all of my things on my “To Do Before Surgery List” accomplish so I’m content. I’ve got a Netflix subscription so lately with the heat, I’ve been inside in the recliner watching movies and reading magazines. I LOVE the heat, the hotter the better. However I’ve noticed the hotter it gets, the more uncomfortable my GI tract gets.

back to the philadelphia...

2011-05-29T19:06:00.000-07:00

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.

the surgeon's appointment...

2011-05-22T14:46:00.000-07:00

I met with my surgeon on May 13^th 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 10^th 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!