Monday, November 7, 2011

Dealing with a Chronic Illness

Thinking about having a chronic illness and how I cope made me think of this:

"Yes helmsman?"
"We need to abandon ship!"
"What's wrong?"
"The rust on the hull has caused a crack, the electrical system is frayed and worn, the engine is burning oil faster than we can replace it and..."
"And we are boxed in by icebergs in a mined corridor."
"How far are we from home?"
"A day... maybe two."
"Then all is not lost, is it? Full speed ahead!"

-what having a chronic illness feels like, the trick is to not panic.

It's Been a While

I'm sorry I have not posted in a few months but here is a recap.

I had my colon removed on July 27th at Ronald Reagan UCLA Medical Center, by the next day I had been told that it weighted about 10 pounds which pretty much means that there is no way it could have been saved, barring a major miracle. I'm cool with that. What happened a few days later I'm still not cool with. My surgeon came in and told me that pathology of the colon was in and that there were three tumors all malignant and none which had been detected in June when I had last been scoped. Not surprising considering that due to the amount of inflammation in the colon they could easily hide. Two were stage one and one was stage three, thankfully none penetrated the muscle wall and only one out of forty one lymph nodes came up as having cancer. What that means is that I am currently undergoing chemo and will be finished, barring any problems, in May or so of 2012. That also means that I won't be having anymore surgery until after the chemo is over. Which sets back the third and final surgery until the fall meaning that I will have a bag for a year or so. Not too bad. And hopefully there will be no problems or complications.

On a plus side I finally got a girlfriend, she's an old friend that I finally reconnected with and hopefully things will work out, only the future will tell.

Friday, July 22, 2011

Two Stage vs Three Stage Colectomy

I was researching the differences between a two stage and three stage colectomy and came up with this interesting abstract from:

Dis Colon Rectum. 1989 Apr;32(4):323-6.
Restorative proctocolectomy with ileal reservoir. Comparison of two-stage vs. three-stage procedures and analysis of factors that might affect outcome.
Nicholls RJ, Holt SD, Lubowski DZ.
St. Mark's Hospital, London, United Kingdom.

Restorative proctocolectomy and ileal reservoir, performed as a two-stage procedure, has the advantages of a shorter hospital stay, one less anesthetic, and a shorter time with a stoma when compared with the three-stage procedure. In a prospective, nonrandomized study of 152 consecutive patients undergoing restorative proctocolectomy (57 two-stage and 95 three-stage), the complication rates for the ileal reservoir phase and the functional results of the two- and three-stage operations were compared. The results suggest that there is no advantage to the three-stage procedure except in the following circumstances: when urgent surgery is required for the complications of ulcerative colitis, when malignancy or Crohn's disease cannot be ruled out, and when a patient with active colitis has a combination of a low hemoglobin value (male less than 13.5 g/dl, female less than 11.5 g/dl), a low serum albumin level (less than 40 g/l), and is taking oral steroids.

What that means in laymen's terms is that there is no significant difference in the two. That is unless you may have a possible tumor, Crohn's, are anemic or are on steroids such as Prednisone. Since I fall in the last of those categories then I suspect that that's one of the reasons why I will be having a three stage surgery as opposed to a two stage. I'll see you all on Monday and then Wednesday it's party time.

Some may wonder "what is a two/three stage" and so forth well a two stage surgery involves:
Stage one: Removal of colon, installation of stoma and colostomy bag, forming of "j" in small intestine.
Stage two: Removal of colostomy and connection of j-pouch to anus.

The three stage involves:

Stage one: Removal of colon, installation of stoma and colostomy bag.
Stage two: Forming of "j" in small intestine. Removal of rectum.
Stage three: Removal of colostomy and connection of j-pouch to anus.

Wednesday, July 20, 2011

Hey All!

It's almost that time of the month, our support group will be meeting next Wednesday at the same time in the same place with hopefully the same people! I will attend as it will be the last meeting before surgery which will take place next Wednesday at UCLA, I will finally go under the knife and have my lovely colon named Frank removed. I may try to get pictures taken. Therefore in honor of all the Franks and Frankettes that have been removed here is some bathroom jokes! Enjoy!

A man walks into a bar and sits down. The bartender asks the man what he wants. The man says, "Give me a Bud Lite."

When the bartender brings him the beer, he notices the guy pokes at his hand and starts talking. When he stops talking, the bartender asks, "What are you doing with your hand on your face?"

The guy says, "A while ago I was hit by lightning and from then on my hand became a cell phone."

The bartender says, "Oh! You're full of it!"

So the guy says, "If you don't believe me, then here! Tell me your phone number and I will dial it.

The bartender says, "Dial 654-8967."

The guy did so and hands the phone to the bartender who talks with his wife and kids.

After a few drinks, the guy goes into the bathroom. Two other guys come in and the bartender asks they if they saw the guy whose hand is a cell phone. The two guys say "Oh, you're full of it!" The bartender tells them if they don't believe him, then wait until he comes out of the bathroom and they can see for themselves.

After about 15 minutes the guy still hadn't come out of the bathroom so the bartender goes to check on him. When the bartender goes into the bathroom he sees the guy standing there pants down and toilet paper rolling out of his butt.

The bartender asks, "What the hell are you doing?"

The guy says, "Hold on a second! I'm getting a fax!

One evening a family brings their frail, elderly mother to a nursing home and leaves her, hoping she will be well cared for. The next morning, the nurses bathe her, feed her a tasty breakfast, and set her in a chair at a window overlooking a lovely flower garden.

She seems OK, but after a while she slowly starts to lean over sideways in her chair. Two attentive nurses immediately rush up to catch her and straighten her up.

Again she seems OK, but after a while she starts to tilt to the other side. The nurses rush back and once more bring her back upright. This goes on all morning.

Later the family arrives to see how the old woman is adjusting to her new home. "So Ma, how is it here? Are they treating you all right?" They ask.

"It's pretty nice," she replies. "Except they won't let you fart.

Saturday, July 16, 2011

Mid-month updates

First of all our total is currently at $9,105.00 with a few weeks left to go before the August deadline. We are so close to our 10k goal and I think that we can make it. Second of all we do have a couple of our members in the hospital, I won't name them without consent from them but let's have them in our thoughts and prayers. Our next meeting will be at the end of the month which should be July 25th. Sadly I may or may not be able to join you.

See on the 21st of July I am having a small bowel follow-through in preparation of surgery which should happen early the following week and could be anywhere from July 25th to the 27th. So wish me luck there and plenty of thoughts of foods that I will not be able to eat, savor or enjoy for the next few weeks or possibly months. Don't worry about me I am going in fully aware of what will happen and possible complications and it's a far better alternative than waiting for a miracle cure that may not happen before my system decides to do something funny and get worse. That's it for now, I'll see you all when I see you!

Thursday, July 14, 2011

Be part of a groundbreaking research survey!

From the CCFA:

CCFA Partners:
Patients helping patients toward a better quality of life

We are in the process of building a groundbreaking online research and educational initiative called "CCFA Partners," and we invite you to join us! CCFA Partners is a completely new and very different approach to inflammatory bowel diseases (IBD) research. The initiative's goals are to improve quality of life for patients with IBD through research and education.

How does CCFA Partners work?
We plan to enroll 10,000 or more IBD patients from across the country and hope that you will be among them. We will gather information about you and your experience with IBD through a brief confidential online survey. We will contact you by email every three months to let you know about our progress, and provide you with educational information about IBD and IBD therapies. Every six months we will ask you to update us about your condition in a brief follow-up survey. There is no cost to you for participating. All data will be collected using a secure Internet server, so your personal information is safe and confidential. To start your survey, please click the special link at the end of this e-mail.

If you decide to join CCFA Partners now, you can opt out at any time in the future.

We hope that you will participate fully -- the more people who participate, the more reliable the research results will be! Thank you for your consideration.

If you are 18 or older and want to continue to the survey, please , start your survey here.
[update: the link appears to be not working for me, seeing if there is a different link or a workaround since this sounds like a great opportunity for many]

Saturday, July 9, 2011

Robot extended version - Hand-Breaded Chicken Fillet Sandwich at Carl ...

This is how I feel at times and I know many of you feel that way as well. And if I do get surgery in a week or two then..well... I better get my lasers ready.