UC to J-Pouch Story

Posts Tagged ‘J-Pouch’

Jpouch Images

Posted by Megan on September 2, 2008

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


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Mark 9 month Jpouch Update

Posted by mark on August 8, 2008

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 https://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. 



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Best Case Scenario

Posted by Megan on July 18, 2008

Here is some food for thought for those heading in to or pondering “elective surgery.” Instead of pondering and dwelling on what are all the possible complications of surgery, why not consider what is the BEST CASE SCENARIO?  Why do we always see the “worst case scenario” and why was it a revelation to me that seeing life from what is the BEST CASE SCENARIO would really make a lot less anguish in life.

My Mom is having surgery on her eye for glaucoma, and she is currently in a state of fear. All she can say is “what if the surgery goes wrong and I lose sight in my eye?”  A rightful fear, for sure – however, I never hear her say, “80% of this surgery works and removes the pressure from the eye and can solve the problem.”  Right now she is so involved with fear that she can not see BEST CASE SCENARIO, she will only see worst case scenario.

I just know that when we were coping with Mark going into to surgery we spent so much energy (as in years) dwelling on what could go wrong, and almost refusing to see what could go right.  As you know, his outcome has been all the scenario of “what could go right” so we wasted spent so much energy worrying about what could go wrong.   Of course, I know in retrospect so much easier now to say to you “See best case scenario”but seriously, don’t forget to see your “best case scenario options“.

Awareness of impermanence is encouraged, so that when it is coupled with our appreciation of the enormous potential of our human existence, it will give us a sense of urgency that I must use every precious moment” – The 14th Dalai Lama


Photo via: Fanboy30

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A picture speaks 1,001 words

Posted by mark on July 14, 2008

Below is a photo of Mandy and her friend simply having fun and NOT letting her ostomy get in the way of water skiing and living life. 

“haha all taped up and ready to go!  my friends taped my bag to my stomach so it wouldn’t fly around…and my friend Kevin taped his stomach so I wouldn’t be embarrassed lol”

A picture speaks a 1,001 words

A picture speaks a 1,001 words

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Tony Snow: Dies at 53 yrs

Posted by Megan on July 12, 2008

July 12, 2008:  Tony Snow has died from colon cancer, he was 53 years old.  Tony Snow served as White House Press Secretary for Bush, and other republican political ties. This post isn’t about politics, but the politics of IBD rather. This post is about the fact that he UC for 25 years.  After living with UC for 25 years, he found he had colon cancer, eventually the cancer spread to the liver which ended his battle.  In 2005 he had his colon removed from cancer, and in 2007 was back in care for an abdominal growth. 

Click here:  Tony Snow on CNN

Click here:  Tony Snow on Wiki

Click here: Tony Snow on www.jpouch.org Forum Discussion


About the risks of UC/CD becoming Cancer:  Since I am not a medical professional on this topic, I’ll only provide you with the links to proper sites so you can get accurate information.  Click here for the  CCFA Update on Colorectal Cancer: Knowledge is Prevention .  This is a webcast, article and brochure about the topic, and discusses what are the risks of colon cancer and IBD, etc…

PDF Brochure Click Here:  Bringing to Light the Risk of Colon Cancer for Crohn’s and Colits Patients

Excerpt from Brochure page 2: 




“Crohn’s disease and ulcerative colitis, collectively known as inflammatory bowel disease (IBD), are chronic diseases that inflame the digestive or gastrointestinal (GI) system. Specifically, ulcerative colitis inflames and causes sores in the colon, while Crohn’s disease can inflame any part of the GI tract, including (in some cases) the colon. If you have had inflammation of the colon, you are at a higher risk for developing CRC than the general population (unless your inflammation is limited to the very bottom of the rectum). If your Crohn’s is limited to the small intestine, you are at a slightly increased risk for cancer in the areas that were inflamed. Even if your disease is in remission, you remain at risk.

The two factors that are associated with increased cancer risk are disease duration and the extent of the colon involved. The risk for CRC doesn’t start increasing until eight to 10 years after you develop Crohn’s disease or ulcerative colitis. People whose entire colon is involved have the greatest risk, and those with inflammation of the rectum only have the least risk.”

Please cllick here to keep reading and gaining accurate information about the risks:  Bringing to Light the Risk of Colon Cancer for Crohn’s and Colits Patients 




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CCFA Billboard

Posted by mark on July 11, 2008

CCFA Billboard, Tucson Arizona USA

 Looks like “times they are a’ chaning” if CCFA is posting billboards to bring disease awareness.  Hopefully you’ll be able to see the billboard details, but the female in the photo is sitting on the toilet and resting her head against the wall with her eyes closed.  It’s a pretty powerful image.  The text reads “Crohn’s disease and ulcerative colitis can be overwhelming.  We can help!” 

My sister told me about this billboard, and I told her she had to photograph it for us to share with others. This is so great because not so much for those living with the disease but so that others affected by those with disease can see that it really is a problem!  The billboard is up in the city limits Tucson, Arizona USA (greatest city in the world).  Thanks Erica for the great photo!

If any of you have great photos that are about IBD awareness you should send them and we’ll share them with our readers!

Photo by: Erica (Megan’s Sister)

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Carter’s Surgery Photos

Posted by mark on July 7, 2008

Carter S. (22 years old) has been generous enough to share his story and surgery photos with our UC to Jpouch Story readers. 
Here is the link to his story and more photos   Surgery Photos and Story: Carter S.    
Be sure to send him comments and welcome him both the blog and his new life with a J-Pouch.  He tells an incredible story (he’s a great writer as well 🙂  We are so happy to have Carter sharing his story with us and with ya’ll.


Carter.S with shirt over ileostomy bag

Carter.S with shirt over ileostomy bag

Here is the link to his story and more photos   Surgery Photos and Story: Carter S.    

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1 Year Anniversary NO UC!

Posted by mark on July 6, 2008


Every event, every situation in which you may find yourself has a positive value, even the dramas, even the tragedies, even the thunderbolt from a calm sky.” – Arnud Desjardins


I have my step 1 one year anniversary today, July 6th, 2007. And feeling incredibly well, with low BMs and overall feeling of good health. I am so thankful for chance to be healhty again, and thankful for all the great resources avaialable to get through this. I don’t need to tell you on this board how much of life was hindered due to UC, and how much time I lost deciding for surgery, etc…

And to celebrate this 1 year anniversary from Step 1 surgery, you should click below and watch the videos by Jordan Sweeney. He is living with UC and has made an excellent album with videos about his reality. Watch this first video Rain Song, and it will hit you to the bone -Megan saw it for the first time and tears came flowing, when living with the disease I don’t think always realized what it was taking away from us.

Thanks to everyone who helped us through these past few years!
Mark (1 year healthy living with No COLON and No UC)

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Communicating about UC

Posted by mark on July 6, 2008

   WEBCAST: No One Understands My Pain: Communicating about Crohn‘s & Colitis

Health Take has offered a very good webcast on how to talk to others about the disease you are living with.  The webcast especially addresses how with these diseases we often look “fine or healthy” but we are not.

“Often when you’re suffering from painful Crohn’s disease or colitis symptoms, you may look healthy and others may assume you feel better than you do. So how do you ask for the support, understanding and help that you need?

Join us as our expert guests share tips for effectively communicating about your Crohn’s disease and colitis pain and other symptoms with your family, friends and others in your life. From informing a co-worker about a difficult symptom to expressing your needs to a spouse or new love interest, you will learn about techniques that will help you feel supported and empowered. Plus, you’ll learn why it’s important for your emotional health that you speak up and seek assistance.”

Communicating with family, especially my family was EXTREMELY difficult. They just didn’t, couldn’t understand chronic illness and what it really meant.  When you have UC  “are you feeling better today” has a whole new meaning.  We wrote our story of support and have put it on here for Our Story of Support.  Part of this blog has been to help others communicate their situation better. 

BLOG POST FROM LOTTIE in the U.K., she is headed into surgery at the end of the month and on her blog (which you should check out http://lottie30.wordpress.com/) she wrote the following post that made us think more about “communication”

“Talking to Megan and Mark about support etc and reading their take on it, made me realise that very often unless you ask you don’t get.  With this in mind I took an unprecedented decision to speak to them about it properly.  It is impossible to get my brothers and sisters in one place at once, especially as one lives in Sydney, so I emailed them all (and their partners/husbands).  I explained that I was having the op, what it entailed and more importantly how I felt about it.  I explained that it was a scary time for me and N and the kids and that we need their support not their sarcasm or dismissiveness (which is what I would normally get).  In response I have had some of the most lovely messages I have ever had from my brothers and sisters, which have made me feel loved and cared for by them like I never have before.  It is really special.  It has made me realise that yes, you definitely have to tell people what you want and then you might get it.  I feel supported in a way I never have before and that is an amazing feeling.”

Photo by: Jake Shears

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Sex and Intimacy

Posted by Megan on July 3, 2008

Sex and Intimacy, Guide for Men and the people who love them Webcast

Oh, the tricky part of chronic disease. And the part we don’t nearly talk about enough, sex and intimacy.  I found the above webcast from male living with Crohn’s to be a honest, humorous discussion about his body image, disease, and his sex and intimacy challenges. Here, see this link to Mout Sinai about Sexuality: possible problems after surgery .  Although it is excellent information, it is “technical” where is the emotional stuff, where is the relationship aspect. Under the Emotional Issues section of the Mt. Sinai page they do state “Of course, other factors also contribute to how an individual perceives changes after surgery. People whose self-image is more reliant on physical appearance may be more prone to concern. Having or not having a committed partner has an important effect on coping. The amount of education available for surgery, which may allow for more realistic expectations, may also have an influence.”   Okay, so let’s talk about that, what do they mean?

I know that this was for years a real struggle for Mark and I to manage, especially when we were learning his disease, and he was losing his interest in anything physcial the more his health deteriorated.  But what we did form was a true relationship based on intimacy.  And it has been this intimacy that was one of the biggest gifts UC and surgery gave us.  We learned because we had to what gentleness and patience means, if we hadn’t I don’t think our relationship could have made it.  I find now that our intimacy is on a level unlike what I see in many couples (non-disease couples), and to be honest I wouldn’t trade it for anything.  We’ve been together 14 years, in our early 30s, and although many years of 20s were lost to UC – we are now back to healthy living which means more sex with now this added intimacy.   Good things can come from being sick I guess?!

I think that when we address disease or surgeries like Mark’s we talk about everything but the reality of body image, sex and intimacy. I wanted to share some of our experience because IT IS REAL, and all you reading this are probably in some stage of dealing with either sex or intimacy issues due to your stage of disease or surgery.   All I can say is talk about it, be honest and know it was one of our hardest issues over Mark’s illness.

Sex and living with an Ostomy:  Everryone is different, so for some people being intimate with the stoma is probably a bigger than others (early on when the stoma is newish).  For us it wasn’t a big deal at all, and the reason it wasn’t a big deal is because Mark was HEALTHY finally. So for us the ostomy represented health.  I think the first time we were intimate after the stoma Mark wore the phoenix belt, then after that it wasn’t a big deal, he would just empty the bag and it would just there. I know some people tape up the bag, I know some people use attach smaller more temporary ostomy bags (which is clever). I’ve read of women wearing lingerie that strategically covers up the bag, etc…People make it work, and you’ll be suprised by how it is not really a big deal (as long as you make it a non-issue). 

The Female Perspective: Females on Jpouch.org talking about Ostomy & Sex

The Male Perspective: Males on jpouch.org talking about sex and ostomy

Link to many many pages of topics relating to sex & jpouch/ostomy stuff:  Used the “Find” feature typed in “Sex” and there are 13+ Pages related to sex on the jpouch.org forum

These are only a few perspectives, but you can see that (1) people make the ostomy work and it isn’t an issue, and (2) there are places like www.jpouch.org where you can go and get the support you need on any related issues – you are not alone in this process.


Photo via: Dr.John2005

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