Thursday, January 16, 2014

a really important ostomy lesson...

I learned a really important lesson Tuesday, fingers do not belong inside your stoma. The whole thing started on Sunday. I had had massive clean out on Friday that left me extremely weak so I actually skipped my Linzess Saturday morning. I didn't want to further dehydrate myself and just add to my weakness so I just skipped it. When I woke up Sunday morning, I realized that it probably wasn't a good idea to have missed a day because today I'd be making up for it in the long run. Sunday mornings are pretty rough for me. This Sunday, I knew church wasn't going to be a possibility. I took my Linzess and it didn't take long before things started moving. I ended up having to change my ostomy bag and wafer three times on Sunday. It was horrible. My skin was so irritate. While I was trying to change it, I couldn't get the area around my stoma clean due to my clean out that was taking place. With a stoma, you have no control of your output. I eventually got tired of dealing with it and just put my finger in my stoma like my surgeon had done before. I was hoping to temporarily stop my output long enough to clean the area around my stoma so I could prep the skin to apply my wafer and bag. Believe it or not, it actually worked. (I'm not a doctor and I'm not recommending this.)

Late Tuesday afternoon, I was mid clean out. I had just went to empty my ostomy bag and I looked down and my bag was empty but I still had a stream of output flowing into the toilet. I was quite furious. I had tip toed around since Sunday afternoon babying my ostomy in an attempt to not irritate my skin further and goodness knows not break the seal of that wafer. I got all of my ostomy supplies out that I needed in order to change my bag and wafer and called Jacob. I would definitely need his help. My plan was to do the same thing as Sunday, use my finger to temporarily stop my output and clean the area around my stoma as quickly as possible. Jacob ask me not to do that but didn't listen. On my second attempt at trying to get the area clean, when I went to pull my finger out of my stoma, my stoma never came out. I had accidentally pushed my stoma in. To better explain this, it was kind of like when you have a shirt sleeve inside out. It felt so awkward. I was concern of what type of damage I might had caused and would the output back up internally causing a blockage. Of course by then it was after hours, so I called my GI doctor and spoke with the on call doctor who transferred me to general surgery. Luckily I did no harm to myself. In time my stoma would push itself back out. I just needed to watch for any color change.

I learned a really important lesson. If possible, I need to attempt to keep my fingers out of my stoma. For those of you who are wondering, yes, I am constantly washing my hands and practicing good, clean sterile techniques.

Thursday, January 9, 2014

the effects of GP and a cold....

In December I went to have another endoscopy where my GI doctor stretched my pylorus, the part where my stomach and small intestines meet. While he was in there, he administered some Botox injections to help stop the spasms that I had been experiencing for quite some time. Before the procedure, I got a chance to talk to him about my clean outs. Over the past few months, my clean outs have just become more difficult and less effective than when I first started back cleaning out after my ileostomy surgery. We had discussed the week before over the phone my concerns regarding this. I am currently half way maxed out on my cleaning out routine (medication wise) and it has only been since April since I had my surgery. It isn't looking good considering how quickly I've had to increase my dosages. Originally when I started cleaning out, I "planned" on stretching the increase in dosages way out, however this hasn't been the case. At the rate I am going, I am going to be maxed out before too long. I explained my concerns to my GI and asked him why this was happening and what in the world was I going to do even though I know that it is unrealistic to ask that because that is something that we will deal with when we get there. We just deal with today and take it a day at a time.

We came up with a plan of increasing my Linzess on the days I clean out. On those clean out days, in the mid-afternoon, I will take an additional Linzess and use it as a "push". This will help give me a better clean out and buy me some time without having to increase my clean out medications. The downfall is that I am already on a higher dose of that medication and it is expensive. My insurance doesn't want to pay for the additional medication. If we can't come to some type of middle ground, there are several similar medications that we can try. Overall, I do feel like I have a little bit of room to experiment with those medications and buy myself some time. That gives me some comfort and relief. However the whole reason I am dealing with this is because my small intestines are doing the same time my colon did. I am losing the function of them. A few years ago when I found out my colon was losing its function, I had a test done. I found out that my small intestines were fifty percent slower than the average person. I just assumed that since they were already slow, they'd eventually get slower and that's what I am dealing with today. It is kind of weird, it bothered me at first because I've already been through this with my colon. I really didn't want to go through it again. But then, the more I have really thought about it, I'm fine with it. God isn't going to give me more than I can deal with. I have been through this before. I can do this again. I do hate it for my husband and family. It isn't fair for them. I have learned something though from working with my previous job and I will never forget this. Regardless of my medical situation, I live in a place where I have access to medical care. I don't have to travel for days on foot or wait for a doctor to come. I have clean water and clean supplies to take care of my ostomy. I am extremely blessed.

As I have stated before, I am stubborn and I think I can do whatever I want whenever I please. My GI has tried to explain to me as well as my family that I am not normal. My immune system is not strong. I believe around seventy percent of your immune system is in your intestines. This makes me more susceptible to illnesses as you can imagine.

It was the weekend before Christmas. I had been feeling really well and went out to run a few errands. That night I started feeling funny. I just assumed it was a GP flare up since those can range in feelings with me. I was wrong. It turned out to be a cold and I can't stand having a cold. I made a horrible mistake and tried to clean out the following day. It only made me feel worse because it wasn't an effective clean out and it left me feeling miserable and weaker. I didn't hardly leave the couch that weekend. On Monday, I felt somewhat better so I assumed that I was getting better. Wrong. Tuesday, that being Christmas Eve, I was determined to feel good. I was trying to do things around the house and of course for the holidays but I could not breathe. It was as if I couldn't get enough air because I didn't have enough energy and of course I'm trying to do stuff. I should have been resting but of course, I wouldn't listen. We were suppose to leave Thursday morning to go on vacation so I needed to clean out Christmas day. I had no idea how I would be able to physically do it. I had this fear that I wouldn't be able to move Thursday morning from my clean out due to being so weak.

I woke up Christmas morning feeling pretty rough. I got the majority of my clean out medicine down without losing it. I promised Jacob that I'd never clean out again on Christmas. I knew that day would be horrible. We went to both of our parents' houses for Christmas. I wasn't missing the festivities. My nausea was through the roof. I know I took more than the recommended dose that day. It was kind of like a catch twenty-two. It had to keep myself hydrated to avoid a migraine but the liquids made me so nauseous. What do you do? That night at my parents, I was so nauseous and out of breath, I could bearly move. I still hadn't packed for vacation. When we got home, Jacob said that he'd do it for me but I'm all about control (one of my downfalls). I don't know how but I got myself packed and ready to go. I did a lot of praying that day.

The next morning when I woke up, I was so weak I couldn't shower. I shower every day regardless. I was in the bathroom and nearly passed out. At that point, Jacob insisted that we go to urgent care. Normally, I would bulk him and insist that we wait a while and see if things get better. However I listened and made my way to the car. I was so weak and unable to breathe, I wondered if I'd make to the car. We got to urgent care and waited for hours. I have never felt so bad in my life except for the day of my ileostomy surgery. I felt the very same minus the vomiting. The PA that saw me told me that if she would have saw me in the ER, she would have been doing a work up for sepsis. I felt real good about then (just kidding). She referred me to the local ER. There was no way I was riding to the hospital I normally go to. She believed that it was just a cold but I needed to have fluids, lab work and x-rays. When we got to the ER, they took me back within minutes. The ER doctor wanted to check to make sure I didn't have blood clot in my lungs. My labs and x-rays came back normal. It turned out to just be a cold. He explained to me that with my immune system combined with my GP, it was just more than my system could handle. I was really shocked. If a cold did this to me, what would the flu do? Needless to say, I'm pretty scared of a cold. I got on the scales a few days later to weigh and my weight had dropped to 84lbs. Since then, I have been really careful.