Dealing with a Chronic Illness

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

"Sir!"
"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?"
"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.

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.

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.

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!

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]

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.

Happy Summer

As we enter July and the real summer hits us I hope that you are all having a great time and had a wonderful and safe 4th of July. As for updates, the Poo Crew currently stands at $9,080.00 with a few weeks left to go until August! Congrats guys we are almost at the $10k that we set out to make.

As for other news. Well it's summer, enjoy the beach, the family and try to stay cool in the heat out there. The next support group meeting will be on July 31st at the same time and place as always. No updates on me yet, sorry. I do have the name of the surgeon and an appt to talk to him for next Thursday although I'll see about getting it bumped up earlier. Other than that stay safe and cool out there!

Things you don't want to hear from a surgeon

I went to see a surgeon today a Colon Rectal surgeon. The first surgeon I had called me to cancel which saved me trouble of having to cancel on him. But back to the story. So I went to see the surgeon and after getting probed and examined, with lube, he stood back and did the usual "hmm" that doctors love to do. He told me everything looked normal and I explained once again that the issue was primarily with the bleeding and long term use of prednisone and 6-mp as I do have a history of cancer in my family already and ran a substantial risk of getting it myself. He wrote some stuff down then told me to wait a moment. He proceeded to leave the room and when he returned he said "I'm not the best surgeon (oh oh) but! I do know one at USC that I went to school with (interested) and he was at the Cleveland Clinic" (Score!) (for those that don't know that is THE PLACE for GI diseases) and so he told me to call him and let them know that he was referring me. This means that I'm back to square one as I wait for my GI to call me about his referral to a surgeon at UCLA, I do plan on calling today after they get back from lunch and inquiring at the very least about which doctor it is as well as telling them about the doctor at USC (Dr. Anthony Senagore for anyone interested) and will hopefully get surgery before the end of summer. I will keep you all informed. And so this experience has inspired me to search far and wide for the following list of what you don't want to hear during surgery:

Better save that. We'll need it for the autopsy.

Someone call the janitor - we're going to need a mop.

"Accept this sacrifice, O Great Lord of Darkness"

Bo! Bo! Come back with that! Bad Dog!

Wait a minute, if this is his spleen, then what's that?

Hand me that....uh....that uh....thingie.

Oh no! I just lost my Rolex.

Oops! Hey, has anyone ever survived 500ml of this stuff before?

Darn, there go the lights again...

Ya know, there's big money in kidneys. Heck, the guy's got two of 'em.

Everybody stand back! I lost my contact lens!

Could you stop that thing from beating? It's throwing my concentration off..

What's this doing here?

I hate it when they're missing stuff in here..

That's cool! Now can you make his leg twitch?!

I wish I hadn't forgotten my glasses

Well folks, this will be an experiment for us all.

Sterile, shcmerile. The floor's clean, right?

Anyone see where I left that scalpel?

And now we remove the subject's brain and place it in the body of the ape. OK, now take a picture from this angle.

This is truly a freak of nature.

This patient has already had some kids, am I correct?

Nurse, did this patient sign the organ donation card?

Don't worry. I think it is sharp enough.

What do you mean "You want a divorce"!

She's gonna blow! Everybody take cover!!!

FIRE! FIRE! Everyone get out now!!

Darn! Page 47 of the manual is missing!

Today

Today is the day, we are a few hours away from the walk and our current total stands at $7575. Great jobs guy. I hope to see you all there as well as Darrin and the newest member of his family, little Aidan!

One more day!

With the walk being tomorrow evening we stand at $7505 which is 75% of our goal and although we didn't make the 10k that we wanted to we did surpass last years total by about a $1000! So congrats to all of you, you all did a great job! See you guys tomorrow!

We are almost there!

Our current total lies at $7225 with the walk a few days away. Congrats on that amount as it is more than what we raised last year! As for other news, yes there is still a meeting this coming Monday, yes it's at the usual location. And no I still have no date for surgery but it appears that it will be at Whittier Hospital not to be confused with Whittier Presbyterian Hospital, and it should be next week, still waiting on more details from my GI.

And I'll leave you ladies and gentlemen with this philosophical list of poo!
(shamelessly stolen from people uncredited)
Close-to-complete Ideology and Religion Poo List

1. * Taoism: Poo happens.
2. * Confucianism: Confucius say, "Poo happens."
3. * Buddhism: If poo happens, it isn't really poo.
4. * Zen Buddhism: Poo is, and is not.
5. * Zen Buddhism #2: What is the sound of poo happening?
6. * Hinduism: This poo has happened before.
7. * Islam: If poo happens, it is the will of Allah.
8. * Islam #2: If poo happens, kill the person responsible.
9. * Islam #3: If poo happens, blame Israel.
10. * Catholicism: If poo happens, you deserve it.
11. * Protestantism: Let poo happen to someone else.
12. * Presbyterian: This poo was bound to happen.
13. * Episcopalian: It's not so bad if poo happens, as long as you serve the right wine with it.
14. * Methodist: It's not so bad if poo happens, as long as you serve grape juice with it.
15. * Congregationalist: Poo that happens to one person is just as good as poo that happens to another.
16. * Unitarian: Poo that happens to one person is just as bad as poo that happens to another.
17. * Lutheran: If poo happens, don't talk about it.
18. * Fundamentalism: If poo happens, you will go to hell, unless you are born again. (Amen!)
19. * Fundamentalism #2: If poo happens to a televangelist, it's okay.
20. * Fundamentalism #3: Poo must be born again.
21. * Judaism: Why does this poo always happen to us?
22. * Calvinism: Poo happens because you don't work.
23. * Seventh Day Adventism: No poo shall happen on Saturday.
24. * Creationism: God made all poo.
25. * Secular Humanism: Poo evolves.
26. * Christian Science: When poo happens, don't call a doctor - pray!
27. * Christian Science #2: Poo happening is all in your mind.
28. * Unitarianism: Come let us reason together about this poo.
29. * Quakers: Let us not fight over this poo.
30. * Utopianism: This poo does not stink.
31. * Darwinism: This poo was once food.
32. * Capitalism: That's MY poo.
33. * Communism: It's everybody's poo.
34. * Feminism: Men are poo.
35. * Chauvinism: We may be poo, but you can't live without us...
36. * Commercialism: Let's package this poo.
37. * Impressionism: From a distance, poo looks like a garden.
38. * Idolism: Let's bronze this poo.
39. * Existentialism: Poo doesn't happen; poo IS.
40. * Existentialism #2: What is poo, anyway?
41. * Stoicism: This poo is good for me.
42. * Hedonism: There is nothing like a good poo happening!
43. * Mormonism: God sent us this poo.
44. * Mormonism #2: This poo is going to happen again.
45. * Wiccan: An it harm none, let poo happen.
46. * Scientology: If poo happens, see "Dianetics", p.157.
47. * Jehovah's Witnesses #2: May we have a moment of your time to show you some of our poo?
48. * Jehovah's Witnesses #3: Poo has been prophesied and is imminent; only the righteous shall survive its happening.
49. * Moonies: Only really happy poo happens.
50. * Hare Krishna: Poo happens, rama rama.
51. * Rastafarianism: Let's smoke this poo!
52. * Zoroastrianism: Poo happens half on the time.
53. * Church of SubGenius: BoB poos.
54. * Practical: Deal with poo one day at a time.
55. * Agnostic: Poo might have happened; then again, maybe not.
56. * Agnostic #2: Did someone poo?
57. * Agnostic #3: What is this poo?
58. * Satanism: SNEPPAH TIHS.
59. * Atheism: What poo?
60. * Atheism #2: I can't believe this poo!
61. * Nihilism: No poo.

Happy Father's Day Y'all

I was informing some of my Facebook peeps about my soon to come surgery, other than the poo jokes that were sure to come this nugget of information came from one of them. I find it rather relieving to say the least and in tune with the "there is a light at the end of the tunnel" school of thought. :)

"My uncle had to live 20 years with a colostomy bag. One morning about 6 months before he died, he randomly woke up at 3 am and felt the need to go to a dinner in St. Louis, MO (he lived in Washington, MO)[edit-a distance of 50 miles]. He followed that direction and found a man, sitting alone, crying. My uncle, being the type of guy he was, went over and talked to this man in his early 20's. He had just found out that he would need a bag for the rest of his life. He was embarrassed, extremely sad, and was literally considering ending his life because of it. Needless to say, a nice talk with my uncle, some good breakfast, and they became good friends. 15 years later and he is still with his bag, is married with kids, and is a good friend of the family. Its one of the few things that I've witnessed that makes me believe in a higher power."

Enjoy your Father's Day kids!

The Latest

Well guess what guys our current tally stands at $6950 with a week and a day left to go! So congrats to all of you.

In other news I may not be able to attend either the walk or this month's support group meeting as it is likely that I will be having surgery this week. It's time to do it and I finally convinced my GI that it was the right time to do so as well. Hopefully by Monday or Tuesday I will hear word of when the procedure is and where. I told my GI to surprise me and as long as it's not a dentist working on my gut I think I'll be fine. In other news... well there's not much other news but I think we have a strong chance of hitting the 10k mark. I am so confident that I will be donating 50 bucks tonight in order to round it off to an even 7k. Don't worry I am still begging and asking for donations and have come up with the crazy idea of possibly selling the sticker rights to my poo bag in exchange for donations. In other words people give me an idea for something to put on the bag, I put it on there in form of a sticker and send a picture to them. Knowing the crew that I will be offering this proposal to chances are that most of the stuff will not be safe for Disney. But hey if it can get us one step closer to saving the poopers then so be it. More info as it comes! Enjoy your weekend!

Update and life lessons

Well first of all the update, sorry you don't have tonight's winning lotto numbers and our current team war chest is at $6,650 with a couple weeks left to go! Great jobs guys, I think that we might be able to hit the 10k goal, and if not then it was a battle well played and fought, but until then keep raising that money. I on the other hand will send out another volley of e-mails and see if I can get a few more people to make donations, I also have lots of recyclables that I will take in next week to get some money for the group. Next week because we are having a Father's Day/Dual birthday party shinding this weekend and there will be more cans and bottles awaiting to be collected.

And then there are life lessons. Thursday I go and see my GI and see what are the results of my scope from a couple weeks back. I'm sure that it won't be "CONGRATS YOU ARE CURED!" And will be more along the lines of "I'm sorry but it's time." For those that may think that this is a pessimistic analysis I will make you aware that prior to the scope I did have some bleeding, not a good thing. It wasn't a flare-up but I'm sure that there was enough irritation that by the time of the procedure things probably didn't look all nice and peachy. Second of all I am prone to getting Erythema Nodosum which although self resolving can also be a real pain to deal with. They are red welt like things that occur on the lower legs, but they can be rather tender and painful to the touch. Not to mention that they prevent one from doing things such as exercising or even going out for a walk since they lead to swelling of the feet. They are considered to be related to the colitis and to be honest I find them to be worse than the actual pooping related to the disease. The last time I had them they developed into cellulitis, not exactly something that you want to have if you have a weakened immune system. Thankfully this time around I had a nice stockpile of antibiotics in order to minimize the possibility of that happening again.

But despite that I'm tired of those damn things, I'm tired of having to clean up every toilet I sit on due to poo splash and I'm tired of being tired. Therefore if told that surgery has to be performed then I will let him know that I'm cool with ls could be done next week or the following. After all the walk is at the end of the month and although having surgery means that I can't walk it or even drive down to Irvine for that matter I can still talk someone into driving me down there. Plus I have Angels tickets for the 5th and 7th of July. I can skip the 5th but I really, really want the cap they are giving away on the 7th. I also have a volunteer thing on the 9th with a subsequent fundraiser the following weekend and since I know that people will be saying "It's only a volunteer gig and a fundraiser, you don't have to go, think of your health!" I will counter by saying, "Yeah but there is this one young lady..." Anytime after July is impossible since school resumes on August 22nd and I have to be passably healed by then since I will be working with the mentally ill and can't let little things such as pain and the like get in my way. Yes I'm an idiot and stubborn to boot but I have spent too much time letting this little illness run my life that I'm no longer going to allow it to do so.

The other good thing is that I'm caught up at work with the projects that I had to help finish up and my co-worker can more than handle anything in my absence. Yes it's a simple part-time data entry job but there is enough data to enter at the moment to turn it into a full time job. Plus they told me that if I get sick that they themselves will drag my sorry ass to the hospital. I love co-workers that care.
Other than that life is grand, I had a chance to get a preview ride of the Star Tours 2.0 ride at Disneyland and it rocks! I recommend it to anyone that has a chance and the money to visit the park. And my turtle has a grown a bit more. That's it for now, you all have a great day and I'll write more soon.

Hello Ladies and Gentlemen

Yesterday was a rather long day, I volunteered to help set up at the Los Angeles Take Steps walk and now I am beat, sore and tired. I walked the route as I with a few other brave souls went out to post the course signs. We also unloaded and set up tables, moved tents around and battled winds that made me wonder if somehow the park wasn't located somewhere near Lake Michigan in Chicago. But it was a great day and judging by the number of Pollo Loco pieces that I helped served a rather successful day that we all enjoyed and had fun with. Today is a day of rest, then again I have little choice as my body is still sore but that's part of the whole experience. As for other things, we are currently at $5600 with a few weeks left to go and I know that we can raise even more! So get to it people I know that we can all do it!

Happy Memorial Day

It's Memorial Day today and yes we still have a support group meeting this lovely day from 6 to 8 in the pm at the same place in the same room. Our updated total so far is
$5375 with a bit under a month to go. I think we can make even more than that by then so let's go at it!

Update

Sorry for the lack of updates it has been a rather busy last few weeks for me. However I did get to go to the Improv on Thursday to see Ben Morrison perform and I loved it. The MC was great, the first act was wonderful, the second act was... well... breathing, but the main act was phenomenal. If you want to catch a glimpse of what I saw and experienced please feel free to see the video below. However it catches only a portion of the genius of the real deal.

And in case you are all wondering we have currently raised $4300! Congrats, but we still have a bit of a way to go but we can do it!

All the Updates that You can Handle!

Sorry for the lack of updates but Blogger has been down for the last few days making it impossible to add any new content. But thankfully it's back up and what was not blogged about can now be written!

First of all, congrats to all we are now at $4005! Great job you guys!
Second of all here is the list of events that are soon to come.

From Amira Shaif

Have you ever wanted to help loved ones understand what you're going through with IBD, but not quite sure how to do it? Need a night out with friends? Want to help CCFA and Take Steps spread the word about an awesome fundraiser? Ben has suffered from Crohn's Disease for many years and has created the perfect performance. Although we know there is nothing "funny" about having IBD Ben shares his story with humor and gives the audience the opportunity to laugh along with him as he discusses what is sometimes considered the "un-discussable"....
PAIN IN THE BUTT - Benefiting CCFA LA Take Steps
Don't just join us, but tell your friends to come too!

http://online.ccfa.org/site/MessageViewer?em_id=82664.0&dlv_id=85385
Hollywood Improv
8162 Melrose Ave
Los Angeles, CA 90046
Thursday 05/19/2011
6PM Dinner & Silent Auction, 8PM Comedy Show
Tickets ae $25

REGISTER TODAY
For this FREE Teleconference/Webcast
This educational event will help patients, caregivers, and pediatricians understand the unique medical and psychosocial needs of children with CD and the importance of continual care. Pediatric gastroenterologist Dr. Sandra Kim and clinical social worker Janis Arnold will discuss:

Important differences between pediatric and adult Crohn's disease
The medical management of pediatric CD
The critical role of nutrition
Growth and development of the pediatric Crohn's patient
Quality of life and support systems


Thursday, May 19, 2011

8:00 PM to 9:15 PM Eastern Time
7:00 PM to 8:15 PM Central Time
6:00 PM to 7:15 PM Mountain Time
5:00 PM to 6:15 PM Pacific Time

First Annual Digestive Health and Wellness Expo - Orange County

Join us on May 21st from 1:00pm to 4:00pm

to learn new ways to facilitate total mind and body wellness.
Expo with be held at In Motion OC
17332 Von Karman Ave Suite 120
Irvine, CA 92614

Come and speak with doctors one on one, acupuncturists, Pilates instructors, yoga instructors, and many more.

We are excited to announce that The Bite Market, a gluten free market, will be at the expo with baked goods samples. Along with Bari Rooney, an IBD nutritionist.
For more information or if you would like a booth
contact Joslynn at jbroun@ccfa.org or 646-717-6208

AND DARRIN HAS OFFERED TO DRIVE!!!

Yard Sale Update

As you may have all heard from Allison the total we raised from the yard sale came to $505! Which raises our total to $3870! We are almost to our goal and we still have more than enough time to reach it and even surpass it. Please thank Allison and Chuck for hosting the yard sale as well as all of you who could help out as well as all of you great people that donated stuff for the yard sale, we could have never done it without you!