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.

changes...

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?