Saturday, August 22, 2009

New bag trial

So, I am trying a new bag... Same company- Hollister, but it has a "vent"... well that is what they call it. It is supposed to vent the gas without any odor. I'm not sure I believe it.

I have been wearing this bag for a day now and it seems to only "vent" when I don't have any pants on. Ok, so it is summer in the south and, I'm not gonna lie, I sleep in my underwear. Hear me out, there are a couple reason. First, of course is the heat, second is my PJ's kinda creep in the night and push on my wafer, and three, in the middle of the night the fewer articles of clothing to deal with when I have to empty, the better.

Last night the bag seemed to not be so gassy; usually I am all air. So, I thought it worked. But they market it as "no more embarrassing bulge." It seems I bulge only when I am out in public, like, even more than with the bag without this so-called magic vent! What am I going to do with 20 vented bags that don't work?

I'm just glad insurance covers them...

Friday, August 21, 2009

My Bailout!

I have been trying since February to get a loan modification of our mortgage and it finally went through. They have reduced our payments by almost $400! We start our trial period in October and it will take us to the new year! What a relief.

Now we just have to work out a payment plan with the hospital bills! But at least I have a home! :)

Wednesday, August 19, 2009

Look at my garden grow!

Our garden took a hit while we were at the hospital because we couldn't water or harvest. But we are back in the mix and things, they are a growin'!

The pumpkins still have not flowered but they are growing like weeds. They should bloom late August and September and we'll harvest just in time for Halloween. :) Those are our beans... we only have three! On the bottom is our cantaloupe and cucumber! Holler!

I sprung a leak!

Surgery will have to wait. I got some tests back last week and a call from the doc. There is a tiny leak in my pouch. We'll do another test and probably get the surgery in late September.

I am not experiencing any problems because it is in the part of the pouch I am not yet using. But if we reconnected I would leak into the rest of my body... not good. I guess it is better to be safe than sorry.

At least I'll be able to hit the beach without freaking out about a bathroom.

Sunday, August 16, 2009

For Sale: My Pride

This weekend has been pretty busy. We decided to have a yard sale. A friend of ours is moving and getting rid of some good stuff for cheap so we figured we'd clean out our attic and maybe get some money for a haircut.

I made signs on Friday before we had a pricing party- we obviously don't do these sales very often. Saturday, after rocking out to two of Eli's shows (one at Piedmont Park and one at WonderRoot- both awesome!), around 11:30 pm we biked the neighborhood to post the signs. It felt great to bike around while there was no traffic, just me and Eli and a cool breeze... We listed it on the Internet; we had all the bases covered. Haircut here I come!

Today, I woke up all crusty-eyed, set up everything and drank almost a whole pot of coffee by my lonesome! We had about 5 customers the whole day. I made a diminutive $9! Broken down hourly, I made $1 an hour! That is like slave labor! I guess that haircut will have to wait; hopefully not another 6 months.

At least someone bought one of my home-made rings. If I can sell 375 more, I can pay the mortgage!

Two highlights from the sale: The girls! :)

Wednesday, August 12, 2009

So close, yet so far

Today I was supposed to start volunteering. I say supposed to because I never made it there. About a mile from my house I started to break down-emotionally. Everything started to rush to the front of my mind: I didn't take out the recyclables, I couldn't change my wafer, I should have done one thing and I did the other... I just did everything wrong.

I pulled over and started to cry.

Why can't I be normal? What is so difficult about driving across town for a 15 minute meeting?

I tell myself that I have done so well; I have come so far. But I still haven't heard it.

Tuesday, August 11, 2009

Pain-er for life

Does everyone else live their life in pain? As long as I can remember there has been a stabbing pain in my abdomen. If it's not colitis, is that time of the month, or eating too much or too little.

I went for my gastrografin yesterday... PAIN. Really, they think it's acceptable to have me laying on my back with a tube up my bum and put my legs straight? Not happening. If the end result was not getting rid of this bag, I don't know if I would have signed up for this!

Lets be honest, I'm all about modern medicine and exams to find out what is going on, but they haven't come up with a better way to check this little pouch of mine? Do they do this just for me? Just to cause me pain? Sometimes, it seems so.

Hopefully we set the date for surgery two tomorrow.... not soon enough!

Wednesday, August 5, 2009

Reconnection Reconsideration

Since before my surgery I wanted the J-pouch. When I finally got it everything was better than it was and I was happy with it; Happy enough because I knew it was temporary.

I saw my surgeon today to set an appointment for my take-down surgery (AKA Reconnection). He is always very thorough in my decisions about the surgery. He mentioned that I could keep the bag if I was getting used to it; As I tell my mother, I told my surgeon, "I am not getting used to the bag; just getting better at it." I want the surgery.

Eli and I have been talking about it and now I am on the fence. This is what the surgery was intended for. The end result has always been the J-pouch. Now, thinking about all the trips to the bathroom, the fear of not making it, the search for the bathroom in every building I go in, I'm just not sure.

I have an exam on Monday to make sure I am healing well. The next step will be the reconnection.

I suppose I can take the weekend to think about all this. Why would he ask me that and complicate everything?!

Saturday, August 1, 2009


If there is one thing I've learned form my diseased colon, it would be the ability to adapt- constantly.

When I check in with Mom, every time she asks, "So, are you getting used to it," meaning the bag. The answer is always the same: I don't think one gets "used" to having a bag of pooh hanging from their belly.

I am getting better at it...

I have adapted to life with a bag just as I adapted to life with a diseased colon. I knew the flares were eventually going to come and eventually go. I'd stop drinking when I flare, and I would eat like a high school boy when I was in remission. And more often than not, I would limit my food to low fiber or even to clear liquids.

I've started visiting an on-line support group when I often hear new-bees complain about the diet restrictions. I can tell they are new because they have not felt the pain of high fiber or solid food during a flare. They'll learn and hopefully find solace in the words of other UC patients on that support site.

Eventually we all adapt. The new-bees turn into the seasoned veterans who offer the advice, tell the new-kids-in-town what to expect, and usually how some amazing seed or diet or oil or pill they took reduced flares. Once I thought of myself as the sick girl, then, I really was sick! Now, I am the bag girl and in a month I will just be me...

Although I am anxious to get this bag off and my intestine inside my body where it belongs, I may even postpone the surgery so I can have a long weekend on the beach with my bag buddy. Then again, maybe not. :)