Thursday, May 9, 2013
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 http://james-miller.deviantart.com/art/Balloons-203543694
Wednesday, May 1, 2013
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.