Colitis/Colonless Curse

For the last eight years, my weight has served as a significant indicator of my health. To file for disability one has to document substantial weight loss; 10% over a 60 day period. This is easy for those with an IBD- and now I know it's easy for those without a colon. When I hit 15 pounds lost, I know it is time for drastic measures. My "healthy weight" has a 5 pound window. I haven't held at that weight for over a year now.

Most people complain that their pants don't fit. Lunges in freshly dried jeans may help you; not me. I get comments all the time about my weight. Others, I would imagine, welcome skinny jokes. To me it is a constant reminder of my disability.

When did it become ok to comment on someone's weight? Does everyone feel they know me well enough to say how skinny I look? If I were over weight, would it be ok to say, "Gosh, you're looking fat!"? It's the same to say, "Gosh, you're looking skinny," to someone without a colon (or an IBD)!

I'd love it if a few cheese burgers would do the trick (I get that suggestion all the time). I wish my pants fit right. But as hard as it is for someone who over eats to be called fat, it is just as hard for someone who can't properly digest food to be called skinny.

You can't stop eating? Well, I can't stop my food from rushing through my gut.

Leave me alone and I'll leave you alone. Deal?

Unfortunately, the people who usually read this are close enough to make fun...
(XOXOX)

Third time's the charm?

March 1st was surgery. I really want to say it is the last surgery but if I've learned anything in the last nine months, there is no telling when this will all be over until it's over!

We are still riding the tax refund wave so I was able to pay our lowered co-pay for the hospital stay. While we were in the business office the morning of surgery, I read through the paper work the office lady gave me and it said "Liquid diet day prior to surgery"! I guess the celebratory burrito was a bad idea...

I told the nurse and really thought they were going to send me home. But before I knew it, I was flat on my back getting wheeled into surgery. I saw doctor Nic before I went under. The last thing I heard was the discussion of medication needed during the surgery. "Well, I'll be here if you need more..."

Dr Nic said it could be an hour or four, depending on how difficult it is to find the leak. Unfortunately for him, it was pretty difficult to find it! Four hours later he sent the "all-good" to Eli in the purgatory. I always feel so bad for Eli having to wait there while I'm getting the best sleep of my life!

When I woke up, all I could get out was a moan. They wheeled me to my room, raised the bed to the height of the stretcher and asked me to "skooch!" WORST FEELING EVER!

When they brought Eli in to the hospital room, my moans had increased with the pain did. The rest of that night was a blur after the nurse said, "Just keep pushing that button! It will kick in..."

The perfect shade of pink!

I can't tell you how many colonoscopies I've had in the last eight years. If there is such a thing as a good colonoscopy, it is when your colon is only an inch long.

I agreed to let the doc take one more look before I pulled out my tube and the quickest way was in the office without any medication. I laid on the table, pants around my ankles, TV screen in front of me. After messing with some equipment, the exam began! For not being sedated, it wasn't THAT bad.... Well, lets just say, I've had worse exams!

He asked if I could hold on while the nurse gets the other doctor. Apparently, this was too good to miss. The door flung open behind me; we waited; door still slightly open. "It is more entertaining when I have something to watch..." So, he continued with the exam and explained everything we could see.

I have seen my colon before- Nasty, red, white, ulcerated colon. Not this time. It was the perfect shade of pink. It looked fantastic. Until I saw the BLACK HOLE!! At the very top of my j pouch was a little black hole. Maybe the size of a pinto bean. Just pulsating and breathing. "That little guys is what is causing all our problems."

When the second doc finally came in they began to discuss... Unfortunately, they can't just clip it. If they did it in the office, the tool they use is the size of a fist! So, we decided to go back into surgery.

March 1st.

The time has come!

I called my doc on Thursday to leave a message. I don't recommend you leaving a message like this unless you have a good relationship with your doctor...

The nurse assistant answered the phone and I politely asked to leave a message for the doc. She recorded my name and phone number and asked, "What's the message?" Without hesitation I said, "Can you just tell him I am going to rip this tube out if he doesn't take it out soon." "Oh my! Are you in a lot of pain?... I am so sorry. I'll let him know."

Of course he called back and acted like he just got a message to call me until he said, "How about, before you rip it out, I take one more look inside and see what our options are?"

I love my doctor!

Comes and goes

I had a rough night. Sweats, rolling on the bag at night, soooo many trips to the bathroom... Today, I'm down. I don't get a lot of sleep last night these days, even when I want to. I can't wait to get this thing off me and get some rest!

It is so hard to stay motivated just to do daily things. I don't have a demanding life but it takes so much energy to just do the dishes, or take the car in, or get out of bed.

What happened to good olde fashion Milk?

This morning, as I was preparing my coffee, I opened my refrigerator and was ecstatic to find a brand new, unopened half gallon of 2%. Ahhhhh. The thought of plain milk and coffee percolated feelings of joy in belly! I was even willing to forgo the chocolate mix-in.

We have a roommate who prefers rice milk; Eli bought plain soy. Am I the only left who buys plain milk?

Its the little things...

Testing, one, two, three, four

I just had my fourth exam in this horrible room at the hospital. Three gastrgrafin enemas and a fistula gram. They are pretty much the same exam- they just inject the dye in different ways!

My last gastrografin brought me to tears. The doc promised they would not hurt me too much this time... I was not impressed when I had to walk into the same room as last time for the fistula gram. The fistula gram- indifferent about it. I did love that my surgeon and the technician were both in the room and were chatting it up about my intestine. "Do you think it's at the top? Are you worried if it's at the top?" And Nic knowing I'm listening to everything they say, responds, "Well, I'm not worried about it! I just wonder if it is..." I really didn't walk away with any more knowledge than when they aren't in the room, it was just unusual.

What have we learned from this exam? Not a thing... except that it is way better than the gastrofrafin. Still have the draining bag. No call from the doc yet.

With friends like these, who needs a colon?

Eli and I found out that some of our friends are playing music and raising money for my medical bills! I am brought to tears when I think too much about it. With everything that has happened the last couple years, I wouldn't trade it for my friends.

My life is pretty good!