Sneak Peak: J-Pouch Life

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Sneak Peak: The Next UC Story Design

We’re working hard on the UC Story redesign, in fact, the name of the blog just might change to Jpouch Life (that is, if it’s ok with you).

And, while Megan has completely schooled me in color theory, I think I still have a few tricks up my sleeve when it comes to comments and the general layout of the site.

With hopes you’ll like it, and many more hopes for your good health!

In the near future on UC Story

Eric in the Rockies

Hi All, my name is Eric and I’m going to be working with everyone to make some exciting changes to this blog. UC Story has grown so much in the past year that it’s time for some renovations. We’ve got some neat stuff planned for the future, including a site redesign, a new and simpler domain, brand-spankin’ new hosting package, and a bunch of other goodies to help you share your stories, thoughts, and feelings.

Mark and Megan will be busy this week (and beyond) moving across the country so I’ll try to hold down the fort. In the meantime, if there are any questions or comments you have, suggestions for the new site, design, features, etc., drop me a line in the comments.

Oh, I’m 4 weeks into a J pouch of my own, and I love it!

Jpouch Images

Images via John Hopkins Colon Cancer Center

These excellent 4 part illustrations from John Hopkins Colon Cancer Center clearly explain the Restorative Proctocolectomy (Ileoanal Pouch Procedure) that Mark had.  The surgery is also called IPAA for short, and the Ileoanal Pouch is the long name for Jpouch.

Hopefully, these clear drawings will help you understand the procedure, and the John Hopkins Colon Cancer Center site offers illustrations of the other possible colorectal surgeries. Their focus is on colon cancer and not IBD, but the surgeries definitely overlap.

Photos via:  John Hopkins Colon Cancer Center

Let’s Talk Pouchitis

“Approximately 30 to 50% of individuals with the pelvic pouch will develop pouchitis at some point in their life.” -  Mount Sinai Pouchitis Information

After 9 beautiful, flawless months with my jpouch, I had my first case of pouchitis.  It was pretty simple to diagnosis by myself, almost immediately went from normal BMs to heavy liquid BMs. Starting feeling lightheaded, exhausted, I didn’t ache or anything, but felt awful.  Few days went by didn’t get better like the flu, and finally got a prescription for Cipro and after 2 pills already felt better and 48 hours felt NORMAL again.

What is the lesson I’ve learned from my first battle with pouchitis? 

1.  That fear of pouchitis is not enough reason to not have the surgery.

2.  If these symptoms happen again call my GI asap.

3.  Need to consider dealing with probiotics. I don’t take them right now but wil start thinking about it now as I know some people think they help prevent pouchitis.

Photo via:  Mimi K 

*Photo is toilet sign in Cambodia

Mark 9 month Jpouch Update

9 months after my “takedown” surgery, here is an update on my status. My life 9 months with my jpouch now is completely normal, I don’t think about being sick. I don’t worry about what I eat (like UC days) like pizza, in my UC days I would eat pizza but I do it knowing I was going to feel awful afterward, now I can eat and I don’t worry.  Of course, I don’t eat pizza much – I do try to eat healthier than not, but I do splurge for some good junk every now and again. 

BMs in 24 hour:  Going to the bathroom 6-8 times a day has just become part of my routine, because I don’t feel sick, there is no urgency so when I have to go thats it, I have to go.   I don’t have any urgency, and no leaking. The consistency of my movements is pretty normal, a lot like before I had UC, basically formed and looks the same.  Here is my BM schedule for those of you interested: 

2 BMs when I get up and start my day  (don’t eat breakfast)

1 BM after eat Lunch

1 BM before dinner

2 BMs after dinner before bedtime

1 time in the middle of night between 3-4 am

Gas:  Simply put, I am pretty gassy.  My gas may be from metamucil or what I’ve eaten.  I have found that the gas is a lot of what I realse during the daytime when I go to the bathroom, sometimes the gas puts pressure hurts in my abdomen but when I pass that I feel fine. 

BM noise in the bathroom:   Sometimes it is quiet but sometimes it does sound pretty splatter like. 

Weight Gain & Body Changes:  My stomach around that stoma site does look a bit different, you can see it is in these photos I think that I look a little bulged around the stoma site and belly button area. If you look at my stomach before the surgery like in this photo http://ucstory.files.wordpress.com/2008/05/step-1-1.jpg and then compare it to the couple in this update post, I look different some. I’ve gained about 15-20 pounds since the surgery 1 and I’m back to the exact weight I was before UC. It feels so good to be healthy that my body could look like anything and I don’t think I’d care – it is just incredible to feel healthy so much of my adult life was wasted by UC a small belly bulge is now a small price to pay Megan likes to tease me about my “middle-age bulge” – she thinks its funny.

Sexuality:  I have some again, thank goodness!  UC days it seemed sex wasn’t a huge interest.  Now, I feel healthy and normal, and I have full function – no physical problems, all my parts seem to be working well.  And my interest or libido is back, maybe not like before UC days but I’m also not a youngin’ these days. 

Medicines:  2 imodium in the morning, spoonful of metamucil in the morning. And then the same at dinner time.  What I think is that when I don’t take the immodium or metamucil my BMs just become more liquid, and more liquid means more butt burn.  Therefore, the goal for me is to keep the BMs more solid.  The immodium and metamucil do not seem to cut down on the # of BMs, just the consistency.

Drinking Alcohol:  The big question asked is can drink with my jpouch?  And the answer is YES, I do.  Here is what I’ve learned for myself (of course everyone is different), but for me, light domestic beers don’t bother stomach, things with high hops (microbrews, etc..) seem to be too heavy and I feel bloated and I feel hungover from drinkinng even 1 beer.   Red wine and thats been fine.  Crown Royal and Coke doesn’t bother me either.  Other than that I haven’t tried many drinks.  Also, I don’t tend to drink so much that I’m drunk, just more causal.

Hemorrhoids:  Mild

Butt burn:  Don’t really have it, if I eat or drink poorly and that makes my BMs more liquidy then I will have some burn, but overall this isn’t an issue for me at all. And if I see the burn coming then I do whatever is needed to get my BMs thicker. 

I LOVE MY J-POUCH – I HAVE ZERO REGRETS!  Mark

 

Surgery Photos: Rob’s Story

 Please Welcome our New Guest Blogger Rob B.

Rob Headed into Pre-Surgery Testing

Rob is headed in for surgery on Aug 8, 2008 for removal of jpouch and to gain a permanent ileostomy. His story is different than Mark & Carter’s because he had colon cancer many years ago, and it damaged his rectum area, leaving him with the option of a perm ileo to simply get his life back.  Below is an excerpt from Rob, and we’ll be adding photos and text of his journey as it happens.   Be sure to send him your support, he has a long journey of physical and emotional healing ahead!

 

Rob’s Story Explained:  “My Colon was damaged due to radiation I received 17 years ago but I’ve been on a medication called lomotil.  It controls B/M’s but unfortunately not all the time. I have had my shear of accidents so I can relate to Marks story when he was up on the lift and had an accident.  You see my problem is also with my Sphincter (the anal muscle that holds everything up and in). Because of the cancer they had to removed a large portion so I have no control of any B/M’s. I can’t even feel when I’m having one. I’ve been surviving because of the medication. It hasn’t been pleasant. I need my life back so I have to go for the permanent ostomy.”

Keep visiting we’ll keep updating with text and photos on Rob’s page:  Surgery Photos: Rob B’s Story

Most FAQS: Two-Step Surgery

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 

Getting Healthy Story #3 – Jeff

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:

jeff_s_uc_oddessy

 

 

 

Photo via: rbackowski

% of UC patients have surgery

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

Friends said: “Wish We’d Known”

Last night some friends came into town and we went out for a great Italian dinner. We got to talking about how much things have changed, and how I weigh 140 pounds now 5’6″. Just saw my weight, my UC weight was around 120-125. They were saying how they felt bad that while I was so sick and going through the medicine trials, and all the coping to prepare for surgery that they weren’t there more to support us. They said, “we knew you were sick, but were so involved in our own lives.” We just tell them we had tons of support once people really started realizing how sick I was. Megan mentioned that now we and they know that if a friend is sick and not getting better, get in there, ask questions. If you show real interest and they need the support they will respond.

Side Note Pouch Related: Yes, we had wine. Yes, I do drink some with my jpouch. This question is often asked about whether I drink with my pouch or not, just too much will upset me just like anyone!