UC to J-Pouch Story

Posts Tagged ‘Ileoanal anastomosis for ulcerative colitis’

HI EVERYONE!

Posted by pixiesndust on November 23, 2008

before it all began
before it all began

Hi everyone. My name is Casey, I’m 21 and live in Florida. I took a lot of pictures through the last year of my surgeries and decided to share in hopes of helping someone going through the same situation. Feel free to ask questions or just leave comments! my email is yesac87@hotmail.com

sick times

sick times

I was diagnosed with ulcerative colitis in Jan ’07 when I was 19. I was put on Asacol and did not respond. For some reason I missed the learning period of being able to swallow pills and was chewing them unaware that they were a time release medication. About 2 mo. later I was hospitalized for a month to get the first flare up under control. They took me off Asocol and started me on IV steroids and Cyclosporine. I had many blood transfusions because I was losing a lot of blood in my stool. It was a very tough month, I was vomiting everything I tried to eat and lost about 30lbs. I was still taking cyclosporine and prednisone 11 mo. later when I decided to go through with surgery.

big face

big face

Casey’s Blog and Photos Here

 

Posted in UC | Tagged: , , , , , , | 2 Comments »

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 »

Most FAQs: Elective Surgery?

Posted by Megan on June 19, 2008

One frequent question asked is if Mark’s surgery was elective?

Yes, Mark’s surgery was technically “optional.” He could have lived unfunctionally sick with his colon forever or he could have had the “optional” surgery.  A common question and one we asked is When did you know time for surgery? There are many posts out there like this one Jpouch vs Ileostomy and these help you feel not so alone in this journey.  Mark tells his story in this post: For those not forced into surgery, and Stories of surgery decision making . And although we get this question a lot, just because we sorta answer it here, you can feel free to write us at any time to talk about your decision process. For us making the decision took 3 years and was really, extremely difficult.   We have lots of experience offering our experience on making the decision, so use us as a resource if you need.  You don’t have to go through this decision alone, that was our mistake!

Here is a Video that is really well done that talks about making the decision for surgery, and her two step surgery is shown and discussed.  Technical and emotional are both addressed.  Really Recommend to Watch!

Posted in Ulcerative Colitis | Tagged: , , , , , , , , , , , , , , , , , , , , | 1 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

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