UC to J-Pouch Story

Posts Tagged ‘UC’

Stem Cells & Colitis

Posted by Megan on August 26, 2008

With an election around the corner in the U.S. we really need to be well versed in issues that affect the million plus people living with IBD diseases like UC.

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.


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


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Most FAQS: Two-Step Surgery

Posted by Megan on June 20, 2008

There are many questions about what “type” of surgery Mark had.  We will try to explain below, however, there are many options and many reasons for those options. 

Mark had a two step surgery.  Mark’s Step 1 surgery was a laproscopic total proctocolectomy with ileoanal reservoir reconstruction or in doctor talk Ileal Pouch Anal Anastomosis (IPAA) or Ileoanal anastomosis (J-POUCH to us common folks). with a temporary loop ileostomy until the jpouch heals (’takedown’ is 2nd surgery).   See J-Pouch Illustrated to understand how the temp ileo works until takedown is done.  His surgery time frame were:

July 2007 – lapro IPAA.

July-October – Lived with Temporary Ileo.

October 2007 – Takedown surgery, temp ileo gone.

We are asked to clarify why it seems the U.K. and U.S. do surgeries different. We don’t have the technical reason, but this is how we explain it when asked:  I’m not sure in the U.K. why it is done in so many steps. I do know in the U.S. that some people have one step, two step or three step depending on their health status (really sick people have 3 steps b/c their health can’t handle the more advanced surgery all at once so they do it in pieces to help the body heal).  Also, doctors do the steps via what their training is and what they are comfortable doing. Here we have two camps: surgeons that do lapro and those that do open surgery.  Since we’ve had some international attention to the blog, we’ve learned that the surgeries although the same really do vary between countries.

 Photo via: J-Pouch Illustrated 

Posted in Ulcerative Colitis | Tagged: , , , , , , | 5 Comments »

Getting Healthy Story #3 – Jeff

Posted by Megan on June 17, 2008

To represent the others who are living, surviving and having their own journey to get to good health. We will be including  “Getting Healthy Stories.”  Below Jeff has shared with us his journal of his health. It is a story of struggle, love, support, disappointment and mostly this guy just keeps getting back up.  He is a truly remarkable voice to hear.  Grab something good to drink and get to know Jeff below:





Photo via: rbackowski

Posted in Getting health Stories, Living with jpouch, Support Systems, Ulcerative Colitis | Tagged: , , , , | Leave a Comment »

% of UC patients have surgery

Posted by mark on June 16, 2008

A big question I asked before deciding to the have the surgery was “how many people with UC have to have surgery?”  Come to find out the number is higher than you’d think, I’ve heard it reported as low as 20%, and here at the UCSF Site it says estimated that 25-40% of patients will need surgery.  Read more in the excerpt below

“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

Posted in Ulcerative Colitis | Tagged: , , , , , , | Leave a Comment »

UC to J-Pouch Surgery

Posted by mark on May 11, 2008

                                 Mark’s Step 1 surgery was a laproscopic total proctocolectomy with ileoanal reservoir reconstruction (a jpouch) with a temporary loop ileostomy until the jpouch heals (‘takedodwn’ is 2nd surgery).   Step 1 was done in early July 2007 and he was in the hospital for 5 days .  Thankfully, he experienced no complications from this major surgery.   Step 2 surgery will happen after step 1 recovery.   See on the right side there are 3 series of Photo Journals documenting the three stages of Mark’s surgery process. Click on Photo Set 1: Surgery Colectomy to see the full set of photos and journal


Mark had Ulcerative Colitis (pancolitis) 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 committ 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.     

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Posted in Family, Friends, Ileo-anal anastomosis, Ileostomy, j pouch pictures, j pouch surgery photos, J-Pouch, Jpouch, Jpouch Surgery, living with j pouch, living with j pouch photos, Living with jpouch, Photos, Support Systems, Ulcerative Colitis | Tagged: , , , , , , , , , , , , , , , , , , , , , , , , | 32 Comments »