Saturday, November 30, 2013

holiday meals and gp'ers...

This is my favorite time of year. I have been doing a lot of reading from fellow GP'ers about their struggle with the holiday season and the food that comes along with it. When I was first going through the process of learning that I could have this food but I could not have that food unless I wanted to drastically pay for it, holidays were especially hard. It was hard to go to events and see tons and tons of food that I couldn't have and yet my body was still going through the process of craving those foods. It took a long time for me to learn and accept that I could no longer have those foods. It was a lot of one step forward, two steps back with me. My eating was all over the place. I just dealt with the repercussions of eating because regardless to what I ate, I lost it along with nausea and pain. I lost over thirty pounds dealing with my GP during that time. Since then, my diet has drastically changed within the GP diet and I've added in my ileostomy diet as well. My body doesn't crave things like it use to. Holiday meals like Thanksgiving don't bother me anymore. Whenever I come off of a clean out or a liquid diet, I crave things like pickles, olives or boiled eggs. Things like that aren't good for my ostomy because I don't digest them but it's what I crave. I sat down the other day with some pickles and olives and just told Jacob to look away. 
Over the past two years since my cleaning out increased to every other day, I fell into a habit of binge eating. I don't binge eat three "normal" sized adult meals or anything but I'll eat my GP sized meal and go back later for a snack. It isn't too long before the distention, nausea and pain accompanied by guilt are factored in. The only positive thing I have learned and do is my liquid intake during a meal. The more liquids, the better. The other night at dinner, I drank five glasses of liquid. I start before my meal and continue after. Since my ileostomy surgery, I have found that if I keep things hydrated, it helps keep my tract moving better (ostomies are a whole different ball game and I need all the hydration I can get). I talked to my GI about my binge eating and he said that it was perfectly normal for someone like myself with GP who cleans out often and deals with malnourishment issues to binge eat. It is just something that I personally don't like to do and struggle with.

The month of November has been a little rocky. I mean if someone comes up and ask me how I'm doing, I am going to say good because honestly, I don't want to bore you and I'd much rather know what is going on with you. It's just how I am. I had a hydrogen breath test earlier in the month that luckily came back negative. I really wasn't looking forward to paying hundreds of dollars for antibiotics that may work for a little while. It is always a toss up. I however hated the prep. I had to go fourteen days without cleaning out or taking any of my Linzess which is for constipation but I don't have but eight inches of colon that isn't connected or functional so I don't deal with constipation. We just use the medication to help get my tract going in the morning basically. I take 290mcg and get about four hours out of get. If I don't take it however, it is as if someone flipped a light switch and nothing works. I start to panic if I don't have it. Hello possible bowel obstruction. 

After the hydrogen breath test, my weight dropped about eight pounds leaving me very weak after clean outs. Me being a stubborn person one Sunday morning thought that I could make it to the eleven o'clock Sunday worship service. My Linzess medication always starts working about ten o'clock. I can't make it through service without having to empty my ostomy. It drives me insane because I am interrupting people and it's inconvenient but it is way better than a busted ostomy bag - been there, done that. Whenever I finally made it to back to my seat from emptying it having just got to church, I knew it was going to be a rough service. During the praise and worship time, I got that jello/weak feeling along with being hot. I knew I was in trouble. I lost my hearing that morning as we were singing. It is always the last thing before I pass out. I was so stubborn and stupid for going that morning. Thankfully I was able to pull it together after that. I don't know how but I did. Jacob and I talked about it later. I am learning about letting go of some of my stubbornness as well as my ignorant ways - if you only knew them. I learned a lesson that day. I honestly would have died of embarrassment had something happened that day. Since then, I have been much more careful on my outings.

I have been talking back and forth with my surgeon over the past month or so regarding a type of colon spasm that I have been having. Whenever I first started having them, I didn't know what to think. It was so odd to experience pain in an organ that I no longer use. I knew the type of pain for I had had it before when my colon had the colon spasms before it was removed. The spasms were horrible. Whenever food or even liquids would hit my colon, my colon would begin to spasm causing me to experience increased pain and nausea. Now the pain is totally random. 

For the month that I didn't have to clean out after my ileostomy surgery, I didn't have any headaches which was wonderful. During and after a clean out, I will dehydrate regardless to how much liquids I consume often leaving me with a headache sometimes a migraine. I had one earlier this week that was terrible. I went to bed cleaning out with a headache and woke up the following morning with a migraine. I was barely able to leave the couch that day. I am the type that will lay and debate whether or not if I need to go to the hospital regardless of the issue. I told Jacob later that night if I have another migraine like this that was completely drug resistant, nothing I took worked, to make me go to the hospital for a shot. It would have been so much better than laying there all day in pain, dehydrated and nauseous. 

We are settled into our apartment which is nice. I love being married. I struggle using up all of my "spoons" too early in the day so that is one of my goals in the upcoming month. I try to tackle too much in a day causing myself to over do it creating more trouble with fellow GP'ers know and understand. 


Wednesday, October 23, 2013

a busy but exciting summer...

This past summer has been anything but boring. In May I was hospitalized for my small intestines becoming enlarged and inflamed. I had been experiencing some intestinal pain during a clean out but I didn't think anything about it. Clean outs are crazy and unpredictable. I may be bloated, fatigued, experience flu like symptoms, deal with nausea and vomiting as well as break out in a rash. It just varies per clean out. Abdominal pain is just part of my gastroparesis as well as my cleaning outs. I woke up the morning after a clean out experiencing a lot of abdominal pain as well as nausea. After several hours of not being able to physically get off the couch due to the intense pain and my nausea medications not working, I knew something was wrong. My clean out had literally stopped and that wasn't suppose to happen. I went to the emergency room thinking that I had an intestinal blockage. Compared to all of the surgeries that I have had in the past and their pain, this hurt the worst. As I was registering and making sure my insurance was correct, I just about collapsed. It was a horrible feeling. Luckily they had assessed my case while checking in and I would be one of the first patients called back as soon as a bed opened up. After the CT scan was read, a surgeon came by and confirmed that it was a blockage. I would need to be admitted and have an NG tube placed in my nose to possibly clear the blockage. If not, surgery would be the next option. I of course was so sick and miserable, I did not connect the dots. I didn't realize that if the blockage did not clear, I would have to deal with another intestinal surgery and the recovery process. I was only concerned about having that NG tube placed. The next morning my surgeon who performed my colectomy and ileostomy came by. He explained to me that to someone who didn't know my medical case, it would appear that I had an intestinal blockage but however I didn't. My gastroparesis had made my intestines become enlarged and inflamed. This was just another thing that I would have to learn to deal with. He explained to me what symptoms to look for so I would know when my intestines started to become inflamed again. Lucky for me that he was at the hospital when this happened. If not, I would have been having surgery for an intestinal blockage. I stayed in the hospital for five days and came home weighing eighty-one pounds. All the weight that I had gained since my ileostomy surgery was gone.

I came home pretty shaken up. How in the world was I suppose to plan or do anything with the possibility of something like this happening again? I didn't want to live in the hospital because you can't physically live outside of the hospital in that kind of condition. It wasn't possible. I was just getting comfortable with my ileostomy and the inflammation sent all of that out the window. My stoma size changed so it was like starting all over again.

In late May, Jacob kept asking me when we were going to go hiking. Before my GP diagnosis and advancement, Jacob and I use to hike a lot and do a lot of outdoor things. For the longest time, we had been talking about taking a hike. It was kind of a goal and reward to get me through the ileostomy surgery. My personal goal was to be able to be strong enough to hike for a little while. I didn't care about the distance or location, I just wanted to be able to be back out in nature for a little while. I was just wanting to be able to hike once. Since I knew deep down that the ileostomy surgery was just a break from cleaning out, I knew that I had limited time. It wasn't until after surgery that I realized how bad of shape that I truly was in from the magnesium citrate clean outs, malnourishment and gastroparesis. I wanted to hike just once. Can you tell I was determined? We finally went hiking one day on one my favorite trails. It was wonderful! We took our time and took a break at the top. We just sat there for a while talking and just enjoying the view. Jacob asked me if I wanted a gift. Our anniversary was coming up so I just attributed it to an early gift. It was concert tickets to The Piano Guys, one of our favorite musical groups. I was so excited! I had been asking to see them in concert. He asked me if I wanted another gift and told me to close my eyes just as before. When I opened my eyes, he held in his hand a ring asking me to marry him. It was perfect, a complete surprise. I never saw it coming. 

We decided to have a quick engagement and get married in August. I wanted to go on a honeymoon and not have to clean out multiple times, maybe not even have to clean out at all if I was careful. Whenever I started cleaning out years ago, I realized that our wedding would not be "normal". My GP and cleaning out would effect our plans. Our rehearsal dinner would most likely fall on day two of me doing a back to back clean out. I would most likely be exhausted from that forget all of the additional wedding stresses. When it came to our wedding, I wouldn't be able to enjoy the cake. I know that is vain and childish but cake is one of my favorite foods and I have had to learn to give that up. For as long as I can remember I have been "planning" what type cake I wanted at my wedding. I am a girl after all who likes to plan. Finally, there was the honeymoon aspect. I knew about a month after my ileostomy surgery that the surgery wasn't successful when I had to start cleaning out again. I knew I was on borrowed time before I would have to start cleaning out with larger amounts of laxatives and combinations of colonoscopy preps such as magnesium citrate. I didn't want to go on a honeymoon with my husband where I had to clean out several times that week and feel miserable and weak from it. It wasn't fair to him. He had been there through thick and thin with me and he deserved as much of a "normal" honeymoon as possible.
 As we began planning our wedding, I noticed that my clean outs were not being as effective sometimes barely working. At the rate, I would be drinking the magnesium citrate before the wedding. I needed help. I didn't want to completely max myself out again on the milk of magnesia and dulcolax. I met with my GI and discussed my options. He agreeded that something needed to be done to slow things down and buy time. He prescribed a new medication that I would take daily to help with the clean outs. He also scheduled another EGG and gastric emptying scan to see how my gastroparesis has effected my stomach. I showed him this 'dent' or hole that had formed since my ileostomy surgery. He referred me to my surgeon thinking that it might be where my abdominal wall muscles have separated. I met with my surgeon later that month showing him the hole. It is right above my belly button. It is four fingers tips long and three finger tips across. He accessed the site and claimed that it was just abnormal surgical scarring. I have had four surgeries at that one site which have caused some abnormal scar tissue. There was nothing he could do, it wasn't harmful just odd looking.
I knew with the wedding approaching fast and my clean outs not working like they should that for me to physically pull of the wedding as the bride, it was going to be a miracle. I honestly had no clue as to how I was going to do it. I did a trial run of two back to back clean outs to see how it would work and how I would feel after it on the weekend of one of our wedding showers at Jacob's church. It wasn't good timing but I was running out of time. I woke up on the last day, the day of the shower hardly able move from being so weak. I felt like I did before my ileostomy. My parents were trying to motivate me to drink something but I was so nauseous. I knew if I wasn't careful, it wasn't going to stay down. At one point, I honestly didn't think I was physically going to be able to go to the shower. However my mom was great and helped me get ready and got me there. I really didn't want to leave Jacob there by himself but he would have been fine. He knew what was going on. At the shower, I felt so rude not hardly talking to anyone but I was doing all I could to just sit in the chair. I did get up once and walked across the room to speak to someone and I felt it coming. I started sweating, my hearing started going as well as my vision. I knew I was going to pass out if I didn't sit down. That was all I needed - "Bride passes out at her shower!" When we left and went home, it wasn't long before I was vomiting. My parents were convinced that I needed to go to the emergency room. I however as usual had to be stubborn and refuse. If this was how two back to back clean outs went for me with an ostomy, is this how my wedding was going to go?
Jacob and I had went back on forth on whether to elope or not. We had thought about eloping somewhere and having our parents go with us so they could be at the ceremony. However we both wanted our siblings to be there so we decided to have a small intimate ceremony at his parents' home. It worked out just right. Our siblings (along with my god sisters who are basically my sisters) and my best friend Melissa were in the wedding. The wedding was on August 10th. Melissa flew in a couple of days before and helped keep me grounded. I honestly don't know what I would have done without her. She gets and understands GP. At one point during the rehearsal, we were going over the order of the ceremony. At that point, I did not care anymore about details, order or anything that had to do with the wedding. My clean outs had caught up with me. It was all I could do to not vomit all over the walk way during the ceremony. I felt so bad, I forgot how many grandparents I had. Isn't that horrible?! However Melissa just stepped right in whenever and just filled in. I just love her for that. She will never know how much I appreciate her for that.
The wedding was beautiful yet quick. We didn't have a long ceremony. It was short and simple. Our rehearsal was the same. Things like that don't matter in the long run, it is the marriage not the wedding and the reception. We did however have cheesecake and I took a couple of bites. We went to North Myrtle Beach for our honeymoon, somewhere close. We didn't want to waste a day of me not having to clean out flying or traveling. We enjoyed our time in North Myrtle. It was the first time that I had been in water with an ostomy. Jacob's parents' have a pool but I hadn't had a chance to swim. It wasn't bad wearing my ostomy, it was just awkward. I made sure I wore my swim wrap under my bathing suit to keep it close to my body. I was in the pool once and almost got kicked in my stoma by accident. It almost made me sick just at the thought of what could have happened. It wasn't their fault and they didn't know. It just made me more aware while being in the water.
It wasn't long after coming back home that I started cleaning out with a combination of magnesium citrate, dulcolax and milk of magnesia. Jacob and I have discussed the pros and cons of cleaning out this way. The dulcolax and milk of magnesia alone are simply not enough anymore. I had even double the prescription that my GI doctor gave me and take it daily along with these laxatives and preps. My GI tract's motility is simply slowing down and I am okay with that. I realize that eventually I may end up maxing myself out with these medications before my ileostomy surgery but I will cross that bridge when I get there. I am currently talking back and forth with my GI about several other tests that need to be done so it is one thing at a time. I am content and happy with my life. I never thought that I would find that by cleaning out twice a week again after my ileostomy surgery but God gives me what I need to get through the day to day stuff.


Thursday, May 9, 2013

bloated like a balloon...

You know how a balloon feels and looks? It feels like the latex has been stretched to its limit and it is hard to the touch. It looks as if it could literally pop and often it does. That has been my issue lately, bloating like a balloon (thankfully not to that size).
When making the decision of whether to have the ileostomy surgery or not, I never really considered bloating. I thought about bloating as in the sense of pain but nothing else. Whenever I bloat, it usually is accompanied with some abdominal pain. I had considered this in relation to my stoma. Would it hurt and how bad would it hurt? However I never really thought about prolonged bloating from being "backed up". It has been three years since I have dealt with constipation without having to clean out.

I have been extremely cautious with my diet since coming home from the hospital. The idea of having a blockage/obstruction just isn't a pleasant thought I want to entertain especially the NG tube. Who wants to be held down again by nurses because they're fighting the tube and trying to pull it out? Not me but I did have my reasons at the time for being such a difficult patient. Anyway before surgery I would bend my GP diet rules to my liking within reasons. I did however never touch meats, raw fruits or raw vegetables. If I ate something that was a bit much for my system, I just flushed it out the next day with my clean out routine. I felt fairly comfortable. Now however that is not the case.

Over the past few weeks my output as slowed way down. My GI doctor and I discussed the idea of me going on a mostly liquid diet and eating one solid thing a day like mashed potatoes or Special K chips (I love those!). Since then, I have found that I am okay if I stay on the liquid diet for the most part but I need substance. I need flavor and something to crunch on! Whenever I introduced a solid food back into my diet after being on liquids for a few days, the same thing happened that I had been experiencing before we changed my diet to mostly liquids. Whenever I eat a solid food, my GI tract just slows way down and my output drops significantly. This is just with air chips or mashed potatoes; can you imagine what a regular meal would do to me?

Last week I started feeling bloated and full inside. I waited to see if the bloating would go down but it never did. I had that "backed up" feeling. I finally just decided that I needed to clean out. This was my only solution to get things out of me and moving in the right direction in the event that I was possibly getting a blockage. I had already discussed with my surgeon on how to clean out with an ileostomy. Could it be harmful or cause any damage to my stoma? I had several questions but he explained to me that there was no difference between me cleaning out into my ileostomy bag or my cleaning out into the toilet. However if I was having to clean out again, it would mean that I was in total GI tract failure and I would need to go see a transplant doctor. (As of right now, I haven't told my surgeon or my GI doctor about cleaning out. I don't feel that I'm there yet. My family had mixed emotions about me cleaning out which I can totally understand. I wasn't even four weeks post-op at the time when I started cleaning out. Today I am on my second clean out. If it was my loved one, I would feel the same.) I couldn't figure out which laxatives to take and how much to take or should I just take the same amount as last time? I knew I didn't want to gag down another bottle of magnesium citrate so I decided to start small and go from there, what could it hurt? I took four Dulcolax tablets and four tablespoons of Milk of Magnesia. (This was such a tiny dose compared to what I use to take.) Several hours went by and nothing was really happening. I was beginning to feel edgy because the dosage obviously wasn't enough. I don't drink anything with carbonation anymore so I didn't have that additional push that I use to have. Finally after what seemed like forever, things started working and they worked well. I went to bed and during the night I woke up really nauseous. After going to the bathroom, I went and took my strongest nausea medication. I needed to take care of the nausea. I woke up around five and attempted to go to the bathroom but I went back to bed. Before I have nearly passed out trying to make it back to my bed. I was trying to be a step ahead this time. Since this was my first clean out in a while, I didn't really know how my body would react. I sat in bed for a few minutes feeling extremely nauseous and sure enough, I got sick. I am not sure if I threw up because of a possible small blockage (it bought back hospital ileus memories) or simply because my body wasn't use to cleaning out. Who knows?

Luckily cleaning out helped. I was no longer bloated and feeling full inside. I have talked it over and over with Jacob and my parents. Have I really gained anything from this surgery? Yes, I now can take way less over the counter laxatives to clean out but I can't really eat anything. I don't struggle as much to use the bathroom compared to what I use too. My energy has kind of bottomed out because I live mostly on liquids. Before I took an insane amount of laxatives to the point I had maxed myself out but I could eat more. Maybe my small intestines were this bad and I just didn't know it because I was cleaning out every other day. I didn't have any energy from doing so many clean outs. I am perfectly fine with the surgery. It is going to be what it is going to be. There is nothing that I can do to change the organ damage. It is just a question that I have wondered about many times.

"Balloons" by

Wednesday, May 1, 2013

my ileostomy surgery...

It has been three weeks since my ileostomy surgery. Of all the procedures, surgeries and tests that I have had, this surgery affected me the most. It took a lot to get me ready for this surgery mentally. It really bothered me that I let something like this affect me in the way that it did. I knew going into this surgery that it was the same as my colectomy. There was a fifty percent chance of the surgery working and there was a fifty percent chance of the surgery not working. Believe it or not, that part didn't concern me because I have no control over the paralysis of my gastroparesis and how my GI tract works. The only things that truly concerned me were getting cleaned out before surgery and things that were vain such as my appearance, stoma sizes and ileostomy bag styles. It doesn't bother me that people know that I have an ileostomy. It would bother me if I have this big bulge in my shirt from my ileostomy bag. Things like that bothered me. Now being three weeks post-op, I now know how to function somewhat with my ileostomy so I am becoming more comfortable with it and I don't have those vain worries that I had before.

My surgeon and another doctor had gone back and forth on how to get me cleaned out for surgery. I can't hold a gallon of GoLytely anymore as a surgical prep. They finally settled on my normal clean out routine as well as a clear liquid diet. I did a mini clean out on Friday just to get things going. On Saturday and Sunday I did my normal clean out routine as well as my clear liquid diet. I like to be organized so I made a list a couple of weeks before surgery of everything that had to be done. My goal was too able to rest on Saturday and Sunday and just focus on cleaning out on those days. Did this happen? No. I woke up Sunday morning and I knew that I was in bad shape. It took me until 11:00am to get off the couch because I was so weak from the past two clean outs and clear liquid diet. As I started moving around doing things, I started to feel better. Due to my procrastination, I hadn't finished my laundry or even attempted to pack. Jacob had spent the afternoon with me. He left about 8:00pm. When I walked him out I had to sit down to tell him goodbye. He asked what was wrong and I explained that I was just weak. I came back inside and asked my mom if she would finish helping me pack. I just couldn't do it. I laid on the couch for a bit resting (in my mind I was going to go finish everything myself because I am so stubborn). I got a phone call from a good friend and went to my room. While talking on the phone I started feeling funny. I had just walked to my room and obviously my body wasn't up for it but I couldn't put my finger on what else was going on. As soon as we ended the call, I realized I was nauseous and about to throw up. I got my brother's attention. I knew if I got up, I was likely to pass out. I could not understand why I was throwing up stomach acid. It just made no sense to me. As the night continued, it got to where every time I moved, I threw up. I couldn't keep any liquids down as well as my Zofran for nausea. Around 11:30pm, I had had enough. Every time I threw up, my hands would go numb and I would not be able to move them. It was as if they almost locked. I knew I needed an IV, I was at that point. Normally I will put off having an IV and just tough it out but I was miserable. I had asked my parents if we could just go on to the hospital and let the ER give me an IV. We got to thinking about how busy the ER can be. What happens if we sit half the night and I don't get out in time or worse, what if they cancel my surgery? My mom called the surgical questions number and spoke with the nurse. They were completely useless. The only thing they offered was to cancel the surgery. NO!! Forget that I have mentally prepared and accepted this surgery; I am actually excited about having it. If I cancelled my surgery, I would have to go through this horrible three day clean out schedule again. I don't think so. I stayed at home that night and just toughed it out. I was still cleaning out so every time I went to the bathroom, I threw up. It was really rough. I was walking a fine line of not trying to pass out.

Our goal was to leave our house at 6:45am. I physically wasn't able to get out of bed until somewhere around 6:30am. I was still cleaning out. I even tried to clean up a little bit because a shower wasn't going to happen. I was too weak. My hands were getting really bad and staying numb for a good while and my feet had started to go numb as well. We were trying to get all of my last minute things packed. It was crazy and rushed. We left my house around 7:30am and I had to be at the hospital at 8:30am to check in.

When we got to the hospital, we had my godmother meet us with a wheelchair. I was too weak to walk now. I hadn't got sick in the car on the way down so I knew that as soon as I got out of the car, I would get sick. I got in the wheelchair with my cold washcloth on my forehead and this huge yellow mixing bowl (don't worry, it is what we use this bowl for) in my lap. I felt it coming and I told Jacob to go check me in and I immediately started throwing up again. It took me a bit to get everything under control and feel safe enough to leave to bathroom. I had found the silver lining in all of this. If I was going to have to sit in the waiting room for up to two hours, I was going to get to people watch. People didn't know that I had gastroparesis and that I had been cleaning out for three days. I wasn't contagious but they didn't know that. It would have been fun to watch them casually get up and find a different seat far away from me.

When I went to check in I could hardly hear. I am not sure why but when I throw up continually I have trouble hearing. I had my mom talk to the receptionist for me but the receptionist had to talk to me, the patient. I could barely sit up at this point. Luckily they saw what shape I was in and they took me straight back. No waiting room for me.

Once I got back into the pre-op bays, I got into bed and they started looking for veins. After several attempts, they did find a vein but once I got back into the OR, they would find a better vein. I had been concerned about my pulse rate being high and that becoming an issue but it never was. My surgeon came in and explained that he was going to do the surgery differently than we had discussed. He was going to do it completely laparoscopically. He would not be opening up my colectomy incision unless there was too much scar tissue and adhesions. I would just have my ileostomy and then two little incisions. The surgery would take about an hour and a half.

Everything went well with the surgery. My surgeon was able to disconnect my small intestines from my colon and stapled my colon shut. He did remove a part of my rectum that would have later caused an infection. He pulled my small intestines up and made my ileostomy. I woke up in recovery to a nice amount of pain. I drifted in and out until I got up to my room. The first two things I can remember asking them were; can I see my ileostomy and can you turn the air condition on? I had anticipated that when I saw my ileostomy for the first time, I would have a feeling of shock and questioning. What did I just do to myself? However when I saw it, I realized that I had blown this surgery way out of portion. It didn't look anything like I had pictured it to. Why had I been so upset?

The day after surgery, a person like a physical therapist (I'm not really sure what she was) came by and we took a walk around the floor a couple of times. I was even able to shower twenty-four hours after my surgery. My ostomy nurse came by and showed me how to care for my stoma and change my ileostomy bag. I felt like I had accomplished a lot that day.

In the back of my head I kept thinking that there was still that possibility of getting an ileus. When I had my colectomy, I had my surgery on Tuesday but I didn't get sick from the ileus until Thursday night. Tuesday evening my surgeon came by to see how I was doing. He said that if I kept doing well and if I felt comfortable, I could go home Wednesday after one more session with my ostomy nurse. Since I was unable to void on my own yet, I could just do my own catheterization at home. I didn't believe him at first because things had never gone this smoothly for me.

They discharged me on Wednesday. I told one of my friends that this would never happen again. I would never be able to pull off a surgical hospital stay in three days/two nights. Whenever I came home from the hospital, my output was 1100cc per day. The ideal output is for someone with an ileostomy 1000cc per day; anything above 1000cc, you begin to dehydrate. The first week, I had really good output numbers. The second week I called my surgeon because my output got down into the 500's. He said considering my motility and my diet (I do not eat as much as the normal person), this amount of output should be fine. As the week went on, my numbers kept dropping. I eventually called my surgeon and my GI doctor and told them that my output was in the 300's. I explained to my GI that if I ate, my GI tract basically slowed down. My diet only consists of my protein shakes, mashed potatoes, Greek yogurt, goldfish crackers, Baked Layes and the occasional cup of pudding. I haven’t even had a real meal yet. We came to the conclusion that I needed to switch over to a liquid diet to keep things moving. I played around with the diet for a few days and it did help my output by a 100cc some days. I will occasionally eat something solid. It all depends on how the day is going.

Last week while changing ileostomy bags, I had just removed the wafer (the part that sticks to my skin and attaches to the bag) and noticed a lot of irritation, redness and swelling. Around my stoma, I had little ulcer looking spots. After talking with my surgeon's office, I needed to come in to be checked out. I have sensitive skin so it was just a combination of things that had irritated my skin. My surgeon asked about my diet and how things were moving in regards to my output. It turns out that my output was too low. It should be between 600 – 1000cc per day. I explained my situation to him, if I eat things slow down. When I eventually try and eat a meal, if things do not go through like they are suppose to, I will just clean out and push them through. The negative side to having this ileostomy with my motility issues is that I have already become distended and felt backed up inside from food. I don't clean out like I use to so I don't have as good of protection from blockages and obstructions. My surgeon released me explaining that there was nothing else that he could do for me. If I had anymore skin issues, I was to call back.

Sunday, March 17, 2013


The past week has probably been one of the hardest weeks for me since my diagnosis. Emotionally I was everywhere. One day I was okay with the idea of having an ileostomy and the next day I was consumed by doubt, frustration and tears. It hasn't been the easiest week at my house.

Whenever I had my colectomy, I had a peace about it. This past week however, not so much. I understand the medical concepts that I had been told and I completely trust my surgeon; the surgical process does not bother me. The idea of having an ileostomy and having to accept where I am in my disease really bothered me. It had crossed my mind numerous times to just put the surgery off and keep cleaning out until I am comfortable with the idea of an ileostomy. (It would most likely never happen. I would never be perfectly comfortable. I am the type when it comes to a band-aid, just rip it off.)

I met with my surgeon Thursday to simply talk about having an ileostomy. I had had a week to think about it and I had a ton of questions. Thankfully as I started asking my questions, I started feeling more comfortable about the idea of having an ileostomy. Don't get me wrong, I am not excited to be wearing a bag on my side but I am learning to except the changes and take it one day at a time.

My surgeon explained that my ileostomy would be reversible. In six months to a year if I wanted it to be reversed due to cleaning out or simply because I did not like it, he would reverse it. He did explain that if I was cleaning out again within that time frame, it would only prove that I would be in GI tract failure. He would refer me to a transplant doctor. I have talked to my GI doctor about this possibility. It is a enormous medical feat, something that requires vast amounts of drug therapy. Thankfully today I am not there and I do not have to make those decisions. As for the ileostomy surgery, it would be somewhat comparable to my colectomy since I have GP. He wasn't able to say for sure that I would get an ileus after surgery because everyone is different. I ask him about nutrition and my history of weight loss after surgery. Normally when an ileostomy is placed, you do not lose weight. Unless my bloodwork comes back with low protein levels, I will not have to have TPN (thank goodness)!

Sometimes when an ileostomy is placed and when the small intestine is cut, some of the the lower small intestine is disconnected and left attached to the colon. The patient will lose some of their ability to absorb the normal amount of nutrition that you would if you had a fully connected small intestine. Case in point, my small intestine is connected to my eight inches of remaining colon. My surgeon is going to make an incision like my colectomy incision and go into my pelvis and disconnect my hookup. He will staple my colon shut and bring my small intestine up and create an ostomy. I am already lacking in nutrition due to my GP. I need all the help that I can get.

Like with my colectomy, we aren't sure if this surgery will work. Most people who get ileostomies, can't stop going to the bathroom. I on the other hand can't start going. They aren't sure how my motility will play into this. I will have to learn how long it takes for food and liquids to travel my tract and go into the bag. The slower I empty, the smaller a bag I can have.

I met with a nurse who only deals only with ostomies. She was extremely nice and informative. She showed me different types of ileostomy bags. I honestly didn't know there were so many different styles and types. She gave me some really good resources. She went ahead and marked me for surgery. (The redness in the picture is from the rash I get when I clean out. This was the morning after the rash went away. The rash will leave an imprint.) The best part is that during my hospitalization,she will be there to help me as I learn how to do this myself. It is one thing to see it, it is another thing to actually do it.

My surgery is April 8th. I was told that I should be in the hospital five to seven days but with my GP maybe more. They are going to give me a different type of pain medication besides morphine. I do not do well with morphine. After talking to both my surgeon and the ostomy nurse, I felt much better about having an ileostomy. I am not excited about having to wear a bag but it is what I need to do and I am going to make the best of it. I just need to take it one day at a time and remember that it is not permanent.

Friday, March 8, 2013

Time For A Detour...

I remember the day that I got my tests results back saying that I had gastroparesis. The nurse was extremely nice and informative. I was just happy to have a diagnosis, an explanation as to why I had been so sick. She explained to me that there was no cure for gastroparesis but with medication, the symptoms could be manageable. It was just a game of trial and error trying to find out what works best for you. At the time I was working as a licensed pharmacy technician. I knew that medication didn't always work for everyone. People are unique individuals, what might make one person have better control of their symptoms might make another person feel miserable with allergic reactions. I asked her what happened when you had went through the list of medications and none of them had helped. She told me that patients with severe cases of GP when medication had failed could/would receive a gastric pacemaker. It seemed so foreign and unreal, a pacemaker for your stomach. There was a long list of medication, I was only allergic to one, I would never need a gastric pacemaker.

It is a good thing that as people, we do not know the future. If you would have told me that within the next five years I would go through having my stomach, small intestines, colon and bladder effected by my gastroparesis. I would have to go through numerous medical testing, some being less pleasant than others. I would consume what seemed to be boatloads of laxatives and hundreds of bottles of magnesium citrate. I would have to learn how to catheterize myself and eventually have a colectomy. If someone would have told me this, I would have laughed and questioned their sanity. At the time of my diagnosis, I wasn't a strong, determined person. I have grown and learned so much from having gastroparesis that I am not sure that I would change it if I could. I wouldn't be the person that I am today. My disease has taught me to strengthen my faith. It has taught me to be a stronger, independent person, someone who doesn't give up when things get hard. I have learned to have more compassion towards others. I am still working on coming out of my shell and holding my own when the circumstance calls for it but we are all a work in progress, continually growing and learning.

In February I went for my second endoscopy to have my pylorus stretched and receive additional Botox injections. I had been talking to Jacob for a while about the idea of having the remaining part of my colon removed. Jacob like always, was supportive of my decision to talk to my GI. Jacob will never know how thankful I am to him in my life and how much I love him. He has been through all of it with me. He is the ultimate trooper if there is such a thing. From when I needed a Coke from the refrigerator to help deal with nausea, to the numerous doctor appointments and testing, and finally when I have been so sick in the hospital that every time I moved, I vomited. Jacob has been there through thick and thin. He has always been there supporting me.

I talked to my GI and asked him if it would be crazy to even entertain the idea of having my colon removed. He talked to me and told me no. This was the next step. He explained the possible surgical options I may have. He sent the referral to my surgeon, the one who did my colectomy and I met with him yesterday.

I was talking to one of the doctors yesterday explaining the past fifteen months. When I got to my clean out regime, he was shocked at how much I take and how often I take it. He said a bottle of magnesium citrate to the small intestines was like taking an elephant gun to a mouse. I am doing that with the additional twenty tablespoons of milk of magnesia and twenty Dulcolax pills every other day. We also talked about the twenty pounds that I had lost since I last saw them.

My surgeon talked about removing my colon. He explained that if he removed my colon and put in a pouch, I could be headed towards some major complications. The pouch could become attached to the surrounding organs and veins. It would not be good and he did not recommend the surgery. His next option was doing an ileostomy. I explained to him that I did not want an ileostomy. What happened if my small intestines slowed down like my colon? Could I even clean out with a bag on my side? He told me that it was rare to see a patient with small bowel motility issues. Here I am with my stomach, small bowel/intestines and colon (for whatever is left of my colon) effected by motility issues and that doesn't include the pelvic floor issues. I am rare and in uncharted waters. There is no guarantee that the surgery will work or that I won't have to clean out again. The ileostomy would be reversible which gave me some comfort. I could go back to how I am now if I needed too. He set up an appointment with the nurses who teach ileostomy care. He felt it would help get me more comfortable to see how things work. I was currently suffering from a case of being close minded, stubborn and simply ignorant. He told me that I didn't have to make my decision today.

I had to ask what would happen if I stayed just like I am today, a girl taking a boatload of laxatives and magnesium citrate. He explained to me that I could stay just like I am cleaning out. I voiced my concern about how long the medication would last since I am already maxed out and can't go up in my dosages. Eventually I will have to increase it or the medicine will stop working. Physically, I can't handle much more when it comes to laxatives and cleaning out. This high of dosage is beating me. I look and feel horrible. My surgeon explained that if I continue to clean out, my medication will eventually stop working. I will start having obstructions/blockages in my small intestines which will make me vomit. I won't be able to clear the blockages because my clean out routine will no longer work. I will become more malnourished and eventually my organs will begin to shut down. I am coming to the end of a cliff and I need to take a detour. The last option was looking into the possibility of a small bowel transplant. He didn't know the criteria but it was something to look into. By this point in the appointment, my head was spinning. How did I get here this quickly? I knew that I have felt weaker and looked worse than I had in the past but I was not expecting this. I just wanted my colon removed. No bag. No transplant talk.

I was pretty taken by the appointment yesterday. I have done a lot of thinking about my future over the past couple of years. I knew that one day I would have to make those crucial life changing decisions. I just didn't think it would be now. I am currently in the process of talking to my GI about the possibility of a transplant. I don't even know if I would meet the criteria. I have decided to go ahead with the ileostomy surgery. I need a break from cleaning out. It doesn't have to be permanent. I just have to take it one day at a time. God has been with me through everything and He will be with me through this.

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

Friday, February 8, 2013

Keeping up...

I am by far the worst blogger. I use to be so good at keeping up with my blog but that is not the case any more. My blog is messy and full of grammar errors but it helps me keep track of what of is going on with my GP.

I went to see my GI in December. He believed that the upper abdominal pain that I had been having since October (the type where it hurts to bend over, breathe, eat and sometimes get comfortable enough to sleep at night) was coming from a nerve. I have dealt with this before. It is kind of hard to eat and maintain when you are dealing with two abdominal issues. He sent me back to the doctor who had administered my shots previously. This time the doctor explained to me that the pain could be coming from a nerve, scar tissue or surgical adhesions, you name it. I was thinking that this was great, I have been cut on at ten different places on my abdomen. A small laparoscopic incision is causing this much pain. What happens if that nicely sized colectomy incision decides to act up; how bad will that hurt? I go back the first of March for a recheck and possibly another shot.

In December, I had an upper endoscopy where my pylorus was stretched and Botox was administered to help control the stomach spasms that I had been experiencing. During the month of January it was a constant struggle to keep my energy and weight up. My clean outs were becoming more difficult so I was requiring more medication to make my clean outs work. My clean out regime was up to a bottle of magnesium citrate, twenty tablespoons of Milk of Magnesia and twenty Dulcolax pills every other day. It took all of this medication just to make a clean out work. One night while cleaning out I nearly passed out on the way to bed. At other times, the mornings after my clean out my pulse would be in the 140s. There were mornings where I had to shower sitting down because I was too weak to stand. Some days after showering, I couldn't get off the couch from being so run down and weak.

I finally gave in and talked with my PA and GI. I told them that I was exhausted from cleaning out. After three hundred and fifty plus bottles over the span of two and a half years, one tends to get tired. The magnesium citrate was burning me up internally when I drank it. I was open to any new options, a tube up my nose, anything. I expressed that I was fully capable of cleaning out the rest of my life, anything to avoid an ileostomy. I just needed a break for a few weeks. (The weekend before I have mixed a fourteen dose bottle of Miralax into a medium bottle of Gatorade. Needless to say it didn't work like it was suppose to but I was getting desperate.) They ask me to come into the office. My GI came in and told me that I had pretty much done all that I could do with laxatives. (Who takes twenty Dulcolax? It is ridiculous!) He explained that over the past couple of years we have focused on cleaning out my tract from the top down. My remaining eight inches of colon seem to be what is hanging everything up even though my stomach and small intestines are delayed as well. For the next six months he wants to focus on my colon and cleaning it out from the bottom up. In time hopefully I will be able to cut back on my use of magnesium citrate. The last time I had to use enemas, I didn't have the muscle strength due to my pelvic floor issues. I have been working on this approach since my appointment and I am not gaining anything. It is just like a repeat of last time, I just don't have the muscle strength. Hopefully after six months if things aren't looking better, we will talk about removing the remaining eight inches of colon.

My GI did express that I needed to gain weight. I have to get above ninety pounds. The morning of my appointment I weighed eighty-two pounds. We talked about this rash that I get whenever I clean out. He had my dermatologist take a look at it and she had no clue as to what it could be. I am to come in for a biopsy and we will go from there. As for my continued stomach spasms, later this month I am having another upper endoscopy where a balloon will be placed into my pylorus and I will receive additional Botox injections.

I have always been the type to take care of my teeth. I brush anywhere from four to seven times a day and use all types of mouth rinses. This week I had to go to the dentist for a routine cleaning. I am all about oral care but I hate going to the dentist. I'd rather have a pap smear, a colonoscopy, an anorectal manometry, you name it. I don't like going. I have heard for several years that GP can effect your teeth. Let's not forget to mention that I chug laxatives every other day and who knows what that is doing to my teeth. After my cleaning, the dentist comes in and explains that I have four cavities and several other spots that need to be watched. (What?!) Where I consume more liquids than solids, I do not chew like a normal person does. Chewing keeps your teeth cleaner. I also have acid reflux. The combination of the acid reflux, the GP and possibly my cleaning out have just took a toll on my teeth. I am just thankful that my teeth were in good shape to begin with.