J-pouch Life

Ohhh, this is excellent. How many of you have asked or been concerned if you were going to pass your IBD genes on to your child, you can listen to this radio webcast here, Genetic Research on Colitis.   “20 percent of people with colitis have a close relative with ulcerative colitis or Crohn’s disease.”  Click Video here.

Here are excerpts from the transcripts Will I give my child Colitis genetically?
“Rick:
Right. And hopefully avoid a lot of that trial and error process of treating it. Now, when was colitis first perceived to be a genetic disorder, Dr. Walters?

Dr. Walters:
That’s a good question, Rick, and it’s very interesting. If you speak to people who have been in the area for many years, they can often show you the slides of the talks they gave maybe 20 years ago which might have said, While we don’t know what causes it, we know it’s certainly not due to your genes. And then we started doing more research. And what was the research? The research was to try to understand why we got the disease, and it comes down to very sort of simple research called epidemiology. Epidemiology is all about studying who gets what, where and when.

Rick:
Yes.

Dr. Walters:
And it doesn’t sound like rocket science, but, you know, it’s the way that we understood genes. Because what did we discover? We discovered that if you had IBD the most likely thing we are going to know about you is that someone else in your family had IBD as well. And that was the first hint. We then started looking at twins thinking, well, if this really is something to do with your genes, then surely identical twins would have it more often. And what do you know? When we looked, identical twins had it much more often than nonidentical twins. And that was really the turning point.

The next huge turning point was when we suddenly were able to look directly at genes. Now, no one would have bothered spending the money if we hadn’t done the simple research first that said it’s going to be in the genes. We started looking, and in the early ‘90s we started getting genetic results saying, you know, you are right. There are differences in people’s genes which seem to occur in people with IBD compared to people without IBD. And that really is from about the early to mid 1990s”

One of the big questions asked is whether or not to take probiotics.  And if you take them what brand, how much, etc?  Nice! A video that sheds some light on the mystery of probiotics:  Probiotic Video .  And on www.jpouch.org there is always a discussion running about probiotics here is a link to many probiotic threads on jpouch.org:   Probiotic Links

Check this out, especially if you are newly diagnosed:  What is Ulcerative Colitis Video? The video covers all the medicines and why these medicines are used etc…super informative.

Excellent Resource:  10 Key Questions about UC

Also, here is a good link to read more about what is UC:  Online Book about UC.

Image via: Lifespan.org

If you’ve recently been diagnoses with CD, you may want to check out this offer for a Free Book on Crohn’s. We haven’t read this, but as we know, people love free stuff!

Photo by: Lifespan.org

“There is something in my body that is telling me to do something that I should probably ignore.” – Testosterone NPR This American Life.

I know this doesn’t have anything directly to do with UC, jpouch or the like, but it relates in some way.  See, my sister had recommend that I listen to an EXCELLENT radio program Testosterone NPR This American Life.  All I can say is without a doubt you must find the time to listen to show, I think it was about an hour long and you must listen because you need this information. I couldn’t sleep last night because I’m writing my dissertation and my mind is just so busy that I’m having some trouble sleeping - so I turned it on thinking it would put me to sleep and it kept me awake it was so interesting.

Here’s a some notes I pulled from it:  One man explains that when he lost his testosterone (T)  he lost his ability to know - he had no frame of reference for anything whether it was a flower or sound.  Then a woman to male explains it so interestingly, before T, he explains that as a lesbian she would see a beautiful woman and think about her though in the sense of  ‘oh she is pretty, what is she reading, she looks really into that book, etc..,” but when she to he started T, found the he was unable to follow the rationale he had without T. to not look back at her breast - but something overcame and with T he would HAVE to look back at her breasts. After T. he for the first time became interested in science. . He had to relearn how to talk to women, rephrase things.   Testosterone NPR This American Life.

What it did for me was help to shed some light on testosterone, a concept I knew about but never really learned anything much about.   It isn’t meant to hold up any stereotypes, but it is interesting to hear people talk about their life before and after T. Sheds some light on how we function.

Photo by: deepwarren

8 Days after surgery showing Ileostomy Bag

Video: UC to J-Pouch (well done & realistic)

I highly recommend this really done video (7 mins) about Video IBD Surgery:  ”People with inflammatory bowel disease often face surgery. New techniques can speed recovery and reduce post-operative discomfort. Meet an 18-year-old woman with ulcerative colitis, and follow along as she makes the decision to undergo laproscopic surgery.”

I just felt this video really covered a lot of what I was going through trying to make the surgery decision and the surgery itself.

My update: Almost 1 year has past, living healthy and well with my J-pouch (no longer have the temporary ileostomy).

People often ask how did Mark decide to have a J-pouch or Permanent Ileostomy?  And people often ask this question because we are told there is a high risk of complications, long recovery time, etc…But what we think is that this is a really complex question because there are so many factors weighing in, so obviously your surgeon is the best one to talk with about this.  Nonetheless, if you look over Mark’s journal you’ll see he didn’t miss that much work, we document all his timelines of when he got back to work etc.  And he had no real complications.  Where on the flipside there are some people who have a really rough recovery.  You must do your research and understand the good and the bad 100%.  People have complications, and we learned that looking and getting support in this process at www.jpouch.org.  It is so important that you understand Mark’s journey is only 1 way the surgery and recovery can go, so here are some resources to get you started making a fully educated choice:

(1) Here is what Patients and family say about the choice:  Jpouch vs Ileostomy 

(2) Here is the Medical Reasoning from CCFA  by — Linda Wasmer Andrews, Dec 2005:

“Which is Better: IPAA or Ileostomy?

Today, an IPAA is the procedure of choice for many ulcerative colitis patients who need a proctocolectomy. The big advantage of an IPAA is that it allows people to keep having bowel movements through the anus. Typically, they defecate about six times a day, and the stool has a soft, putty-like texture. On the downside, problems sometimes develop with the pouch. One possible complication is pouchitis, an inflammation of the pouch that can cause diarrhea and abdominal cramps as well as whole-body symptoms, such as fever, dehydration, and joint pain. The inflammation is treated with antibiotics.

Another potential complication of an IPAA is bowel obstruction, or blockage, which leads to crampy abdominal pain with nausea and vomiting. This problem can usually be treated with bowel rest and intravenous fluids. However, about one-third of people who develop a bowel obstruction need surgery to correct it. Also, in 8% to 10% of people who get an IPAA, the pouch doesn’t function properly and has to be removed. When this happens, surgical conversion to an ileostomy is necessary.

An IPAA isn’t right for everyone. A permanent ileostomy may be the best choice right from the outset for some people with ulcerative colitis, such as those who have low rectal cancer or an anal muscle that doesn’t work. It turns out to be the only option for people with Crohn’s disease who have their colon removed. In such cases, it’s good to know that people can lead long, active, fulfilling lives with an ileostomy, too. “It’s the difference between sitting down to have a bowel movement and standing up to have one,” says Dr. Rafferty. That’s no trivial distinction when you’ve been having bowel movements the same way all your life, but many people who have been through it say that the initial adjustment wasn’t as tough as they had feared.

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!

We received this email, and we would like ask you to take a few minutes and visit this site, seems like they are really trying to raise awareness for RESEARCH for IBD with CCFA.  They have a grant deal pending that if they raise 10,000 of their own before they sail around the world, they will get another $10k donated, so $20,000 for IBD Research at CCFA.  This is legit and done by friends and families of people devastated by IBD: https://www.thepoint.com/campaigns/sussman-at-sea

Email Sent to us Reads:

Hi Mark and Megan,

Three years ago a good friend died from post-op complications after his colostomy.  He was 26 [26 yrs old]at the time, and as you can imagine it was a huge tragedy all of us in his life.  Another friend is now sailing across the Atlantic, and using the opportunity to raise money for Crohn’s and Colitis research (he has secured a $10,000 matching grant).  While the story is a sad one, I hope your community can find inspiration in Ari’s efforts to celebrate the life of Yossi and keep him present in our lives.  The campaign can be found here: https://www.thepoint.com/campaigns/sussman-at-sea.
Thank you, Joe H.