long and overdue...

Growing up, we had this family joke that my bladder was the size of Texas. I would go to school or summer camp and not go to the bathroom all day. Who on earth could hold it all day long? Me. Well many years later, the tables have been reversed and I’m unable to go when I need to go. Funny how things work, isn’t it? Anyway, two years ago I thought I was just really bloated but after a week, an ER visit and a GI visit, I learned that it wasn’t my GI tract, it was my bladder. My bladder had grown and my muscles had become relaxed to the point that I wasn’t able to tell when I needed to go and I would just retain and retain and retain until I had an insane amount of urine in me and I looked really, really bloated. I had to shrink my bladder back down to normal size by self catheterizing and teaching my muscles how to relax so I could eventually go on my own again. It was a long process. I had to mentally remind myself to go to the bathroom or I’d go all day without going.

Anyway, I noticed a pattern starting in January. I was unable to go to the bathroom before ten each morning. My muscles would not relax. After three or four weeks I decided to give my urologist a call just in case something was up. My appointment was scheduled for 8:00am, perfect timing. I was asked to give a urine sample… ummm? I explain to the nurse that that was not going to happen because that is the reason why I was here, I can’t go. As soon as my urologist comes in, he asks about my surgery, recent medical history and of course clean outs; he informs me that I am retaining to the point that I will have to start catheterizing in the mornings.

I have been doing fairly well with my GP diet. I have tried to follow the rules and behave. My weight did drop down to ninety-two pounds but it has come back up a few pounds. I have always been a candy and junk food eater. Having my colon removed did stop almost all of my candy eating. I did get a hold of several bite sized Snickers with peanut butter last week (like four or five) and they were heavenly and so not GP friendly!! I cleaned out Thursday and Friday afternoon around 5:00pm I started having this pain on my left side between my abdominal and pelvic area. I just ignored it thinking it was just a freak thing and that it would go away. I ate dinner and since the pain was only intensifying I decided to soak in bathtub (like that helped…). By 9:30 I couldn’t deal with the pain anymore and decided to go to bed and hopefully sleep the pain off. I didn’t sleep well and at 12:45 the pain woke me up. I got up to walk to the bathroom and I could not stand up straight I was in so much pain. I decided to go back to bed because it was storming and I was so miserable, maybe the pain would be better in the morning. I woke up Saturday morning still in pain so I called the on call GI and asked him if it could be a possible blockage (those heavenly Snickers that weren’t feeling so heavenly now). He told me to come in to the ER to be checked out.

Normally one waits for a while in the waiting room at the ER. When Jacob and I got there, I registered and we were taken back immediately. By the time I came out of the bathroom, the doctor was in the room waiting on me. He examined me and brought in the head doctor of the ER. They both agreed that I was a complex case based on my medical history but the pain was GI related not pelvic. After several tests, Zofran for nausea and Dilaudid for pain, they sent me to holding where I would wait for my CT and receive an IV. Luckily my CT and labs came back clear, no blockages or obstructions. They suspected that it could have possibly been a really bad GP flare up that had caused the pain. I was just thankful that it wasn’t a blockage. No blockage, no NG tube.

I see my gastroenterologist next week. I am hoping to discuss my clean out routine. Today was magnesium citrate bottle number fifty-three. I would like to see how delayed my small intestines are. My throat has got to where it burns a lot and is just generally sore. I’m not sure if it is allergies or if it is the magnesium citrate. The magnesium citrate burns me up internally when I drink it.

being thankful...

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...

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.