After that the goal was to get me on an effective therapy to get my UC under control. I was and have been on steroids since June of ’09 and have tried Asacol, 6-MP, and Methotrexate. I can’t take any of the biologics because of my MS. My UC has never been in remission since diagnosis and has proceeded to get worse the last few months. My home GI referred me to Cleveland clinic to talk to a specialist who gave me good advice and advised that I should consider surgery. My home GI them told me that the doctor at CC was an idiot and that no surgeon would ever preform surgery on me. Needless to say  I was a bit conflicted.

I met with Dr. Remzi last Monday in regards to surgery against the advice of my home GI. Dr. Remzi was great and urged me to consider surgery. After throwing myself a pity party for a few days, where my only guest was myself…and I didn’t even get cake….I decided he was probably right and I should schedule my surgery. He said most likely he’ll be doing a 3 part surgery over 9 months with my first scheduled for March 25th.

So I’m just at the start of this journey…its going to be a long super sucky one…but I know there are a lot of you out there with me.

oh. Ps. I’ve attached a picture of what I USED to look like…you know before 8+ months of steroids….I hope to revisit this again someday

p.p.s. I make typos a lot. Deal with it.

These posts might also help out:

• April 5, 2010 -- Home from Surgery #1 (1)
• February 13, 2010 -- Take a walk in my shoes (59)
• March 27, 2010 -- Colston Thomas Mills (5)
• February 19, 2010 -- Blood, Poop, and Tears (2)

These posts might also help out:

• January 4, 2009 -- Mark’s 15 Month Jpouch Update (8)
• June 17, 2008 -- Getting Healthy Story #3 – Jeff (0)
• June 16, 2008 -- % of UC patients have surgery (0)
• May 11, 2008 -- UC to J-Pouch Surgery (22)

Brevin - by the glow of computer light

I just had a colonoscopy (explained by Mayo Clinic). While in the waiting room I thought of my UC in general and came up with this list. If you have Ulcerative Colitis, you know exactly what a “Colitis Incident” is. I just didn’t know what to call it. It’s when you get that urge to use the bathroom really, really bad. It’s this panicking sensation of you are going to go Number Two whether you’re ready or not. It’s not fun, but over time it gets less embarrassing, mostly because Colitis strips you of any sense of shame you might have had.  It’s a bit graphic, but we’ve all been there.

3. Great America

I’ve never been to Paramount’s Great America amusement park at the time. Colitis and roller coasters mix about as well as rabies and squirrels with little cowboy hats: it might look like fun at first, but at the end no one is laughing. But I went with a buddy of mine to help volunteer for an AIDS Walk that was taking place there, and set-up started while the park was still closed to the public. It was early in the morning and the park was abandoned except for a few volunteers routing supplies through to the main area. Abandoned amusement parks aren’t as creepy as you would think, but then again, it was light out with Spongebob memorabilia everywhere. I was walking around with a friend, admiring all of the closed exhibits and rides, when the urge came. I had no idea where I was in the park or where the nearest restrooms were. Disoriented and convincing myself that all the restrooms were probably locked by Spongebob-shaped padlocks, I resorted to going in some bushes near a basketball game exhibit, well out of the way of passerby’s. That was Colitis’s awesome way of ruining my first trip to Great America. About a year later, when I went back as an actual customer (what, they have a Spongebob Ride, in 3D!), I found the area where I had my emergency trip. It was only then that I saw that the bushes were right next to a hub of multiple security cameras. Reenacting the events in my head like an episode of CSI, I came to the conclusion that my butt cheeks were probably center stage on two of those cameras. I would like to apologize to the security guard who probably came across that thrilling moment.

2. A Valentine’s Day Gift

It was Valentine’s Day and my girlfriend at the time got me a nice gift bag filled with exotic chocolates. She made a card and placed it inside; it was really adorable. It was on the passenger seat of my truck as I was driving home one day when the urge to go hit really hard. For those with Ulcerative Colitis, you know that being in a car while having to go really bad is one of the worst situations you can find yourself in. I managed to find a parking lot, pulled in, and realized there was no way I could dart to anything remotely resembling a bathroom. The problem was there were people in the parking lot, and while I was at the far edge of the lot, I couldn’t risk getting out of my truck. I panicked to see what I had available in the car, and, as fate would have it, a giant gift bag, decorated with red hearts and filled with expensive chocolate, was all I had. Right then and there, in the front seat of my truck, I had to use a Valentine’s Day present as my bathroom. I wasn’t proud of myself as I half squatted over the bag, propping myself up with my legs. In my defense, I managed to save her hand-made card in my frantic scramble. But so much for the chocolate. This proves yet again that Colitis is not the most romantic thing in the world.

1. A Comedy Club on the Sunset Strip in LA

The urge to go came in the middle of what must have been a remarkably hilarious comedian’s routine. The men’s restroom had a urinal and a stall, but for some reason the stall was locked. I knocked, cleared my throat rather loudly, begged, the works, but nothing. Either someone died in there that night or it was out of order. I checked the lady’s room (always an excellent Plan B), but there were a group of girls in there putting on make-up in what seemed to be a giant group effort. I scrambled back to the men’s room and desperately glanced around. Then the epiphany came: I was there, the urinal was there, and heavenly rays of light shown down upon it. Yes, I dropped the trousers and somehow mounted the urinal to go number two. If you’re thinking about the logistics, I didn’t leave a mess. It was liquid and easily flushed away. In the middle of my urinal molestation session, a guy entered the bathroom. We made eye contact as he was half way through the door. I smiled and his eyes darted to the floor. A nice awkward moment of silence later, he casually backed out without a word. I still wonder what the guy thought that night. Oh, in case you were wondering, the sink was too high off of the ground.

What are your most embarrassing UC incidents?

These posts might also help out:

• January 20, 2009 -- On the John: Space Diapers to the Rescue (2)
• January 4, 2009 -- Vintage Toilet Paper Ad (2)
• December 20, 2008 -- On the John: Crapping Robot Toilet Paper Holder (0)
• February 15, 2010 -- I’m so over this colon. (13)

Here is the deal, these are the objective facts:  Stem cells are part of human tissue and every tissue has individual stem cells.  Part of healing diseases or understanding diseases like UC involves studying and understanding how stem cells can help heal tissue.   The colon (the entire instestine) renews quickly. Hence the reason many UC people go into remission.   If researchers can understand these cells then we can make advances in healing diseases like UC.  Here Karen Leigh Edelblum, Ph.D. from Health Talk helps explain stem cells better than me.

Starting August 25, the incredible Health Talk has put together the webcast:  “Stem Cells: Getting Closer to a Cure for Colitis WebCast by Health Talk”  — I haven’t listened yet, but I will soon when I have more time, and I recommend you check it out, I’ve learned so much from the excellent Health Talk webcasts.

STEM CELLS & POLITICS: 

Both McCain and Obama state they are for stem cell research.   Obama has been clear he supports stem cell research including embroynic research. There is concern from some people that McCain strong Pro-Life standpoint will influence him to later change his pro-stem cell stance.  Although in 2005 McCain reportedly changed his stance to support stem cells because of Nancy Reagan’s adminant support for stem cell research (due to her experience with Ronald Reagan’s Alzheimer’s Disease).  

Update Aug 30, 2008:  Sarah Palin, the VP candidate for McCain. Her record is anti-everything, including NO STEM CELL research.

I just ask that you please educate yourself on stem cell research before November, and when you vote, be sure you make peace with the candidate and their decision about stem cell research. 

Visit this link to see a beautiful photo of the human stem cell  Annie Cavanagh and Dave McCarthy

These posts might also help out:

• February 8, 2010 -- A little insight on my insides. (12)
• April 5, 2010 -- Home from Surgery #1 (1)
• March 27, 2010 -- Colston Thomas Mills (5)
• February 25, 2010 -- Commenter with Questions (8)

jeff_s_uc_oddessy

Photo via: rbackowski

These posts might also help out:

• June 16, 2008 -- % of UC patients have surgery (0)
• May 11, 2008 -- UC to J-Pouch Surgery (22)
• March 27, 2010 -- Colston Thomas Mills (5)
• February 25, 2010 -- Commenter with Questions (8)

“An estimated 25 percent to 40 percent of patients will require surgery. This may be because medications are ineffective, they become dependent on corticosteroids, they have dysplasia (early cancer) or cancer, or they develop complications of the disease, such as bleeding, rupture of the colon, or dilation of the colon. In these cases, surgery to remove the colon and rectum, called proctocolectomy, may be recommended. Unlike Crohn’s disease, which can recur after surgery, colitis is cured once the colon has been removed. However, associated diseases associated with colitis may still develop or progress after surgery. For example, primary sclerosing cholangitis, a liver condition, and Ankylosing spondylitis, an inflammation of the lower back, will still progress after surgery. Surgery is followed by one of the following:

• Ileal Pouch Anal Anastomosis — Also called a restorative proctocolectomy, this procedure preserves part of the anus, which allows the patient to have normal bowel movements. The surgeon removes the diseased part of the colon and the inside of the rectum, leaving the outer muscles of the anus. The surgeon then creates a pouch from the end of the ileum and attaches it to the inside of the anus. Waste is stored in the pouch and passed through the anus in the usual manner. Bowel movements may be more frequent and watery than before the procedure and inflammation of the internal pouch is a possible complication. This is known as pouchitis. However, patients who have an ileoanal anastomosis do not have to wear a permanent external ileostomy pouch.

• Ileostomy — During this surgical procedure, the surgeon creates a small opening in the abdomen, called a stoma, to which he or she attaches the end of the small intestine, called the ileum. Waste will travel through the small intestine and exit the body through the stoma, which is about the size of a quarter and is usually located in the lower right part of the abdomen near the beltline. A pouch is worn over the opening to collect waste, and the patient empties the pouch as needed.”

Image via:  Jpouch.org

These posts might also help out:

• March 27, 2010 -- Colston Thomas Mills (5)
• August 8, 2008 -- Mark 9 month Jpouch Update (48)
• July 3, 2008 -- Sex and Intimacy (0)
• June 17, 2008 -- Getting Healthy Story #3 – Jeff (0)

Mark had Ulcerative Colitis (pan colitis) for 7 years (diagnosed at 24 years old, surgery at 31 years old), an active flare for 6 years with little relief from medicine (you name it, he tried it); 3 years into the flare the GI recommended surgery, it took another 3 years for Mark to commit to the surgery.  Many dietary and herbal options were tried as well.  Through this process it was important he was 100% sure he had exhausted all his options so that when he decided to have the surgery, he wouldn’t have any regrets.  It was a HUGE decision to make, and it was important to do it when Mark was sure all his options had been exhausted.  The reason it was so important to know this surgery was 100% the right option is because there can be many complications with this surgery and life with a jpouch or ostomy.  This has been the best decision for his health and quality of life.   Click on Photo Set 2: Inbetween Surgeries to see the rest of the recovery and life with a bag..

In simple words, Mark’s disease, Ulcerative Colitis (severe pan-colitis) made him have chronic diarrhea, bleeding, and urgency.  Then the related symptoms from those main symptoms were of both physical and emotional in nature.  The surgery he had removes his entire diseased colon (large intestine) and rectum, and creates a new holding tank of stool out of his small intestine (called a jpouch).  Go to this site here if you want more info:  J-Pouch Illustrated.  And  Click on Photo Set 3: J-Pouch Surgery to see the full set of photos and journal.

These posts might also help out:

• January 25, 2009 -- Jessalynn (10)
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• November 23, 2008 -- HI EVERYONE! (1)
• June 17, 2008 -- Getting Healthy Story #3 – Jeff (0)