J-pouch Life

In an attempt to make this blog as informative and helpful to a diverse group of j pouchers in all stages (temp ileo, perm ileo, no surgery yet, any stage welcome), we are asking that you send us your stories, links to your blogs, photos, links to photos, etc…We’d love to connect our network to others around so that when others visit our site they can have input from diverse people! 

We are especially hopeful that we can provide the female perspective on this blog – if you are a female, and have or will document your surgery journey with photos, please consider allowing us to link or share your journey on this site.  As you can tell right now we represent the male journey (which is excellent), however, we need the females represented as well! 

What we’ve learned by sharing this story of Mark and support for Mark is helping others is the best way to heal and cope.  If your story, blog, photos, etc.. can help another individual whether a stranger or a family/friend we encourage you to share. 

We want this to be a positive resource so that both you and your loved ones can vist and hear stories that fit your situations. Send us a comment or send an email to mdhilton@gmail.com. 

Photo by: Sidereal

Here is the recent post from a young woman who literally has been to hell and back with her UC, failed jpouch and now perm ileo.  The brilliant thing about this post is that in the face of all her health issues, she has found renewed health and she is a true inspiration story.   Let us explain, having a permanent ileostomy is worst case scenario for a “failed” j-pouch, and when you read things like this, it helps you to remember that a perm ileo will give you your life back.  

According to CCFA only:

“About eight to ten percent of patients will have pouch failure, which requires removal of the pouch and conversion to a permanent ileostomy.”

Excellent article here NY TIMES JPOUCH STORY.  It is nice because it talks about how the decision for many with UC Is technically “optional” to have the surgery. They discuss that this optional surgery is a hard decision to make though often life necessary.  I know for Mark and I this was the hardest part of the surgery decision.  It was almost like you wanted him to be so sick that the doctors decided for you, because the risks were so high and the outcome of an ostomy to jpouch was scary.  This is a great story that represents the disease and life with jpouch very well!

Mike is an incredible young man who tells his UC and surgery story below. He is a great inspiration for many, and we encourage you to watch his video.

[youtube=http://www.youtube.com/watch?v=mEE4KL8FhPs]

Here is Mark just grubbing on some good mexican food, and drinking a margarita.  It was really nice to be able to sit on this beach side restaurant and watch the ocean, the local families and just enjoy the day for a few hours before it was back to me since our trip to Veracruz was both business for me and a few days of relaxing.  While we were outside he never had to use the bathrooom or anything, and were were there for about 4 hours, 2 margaritas later   He did say though that this lunch and hooch was hard on him that night and he was gassy and in the bathroom a lot that night.

Unfortunately Mark has some sort of head and chest cold while we were there. He hasn’t had too many colds or such since his surgeries over a year ago, which is nice that he is usually really healthy.

I’m going to start posting here some of the most frequent questions I get and This future j poucher wrote this on the original photo journal at http://www.flickr.com/photos/markandmegan/2178758105/in/set-72157602651637141/

“Hi Mark and Megan, thanks for the great photos. I had this surgery 2 weeks ago, and I’m mentally preparing for the next steps (for me, they didn’t make the J-pouch during the first surgery — not sure why). I was wondering, reading about Mark’s Immodium and Metamucil dietary supplements: Mark, do you drink coffee? I’m hopelessly addicted; I love it. I’m concerned that my love affair with coffee will cause more frequent bowel movements after the takedown surgery. Any thoughts? I should probably start liking tea or etc., huh? “-eamills

My response “About the coffee, if you’ve been able to tolerate caffenine with sick then you should be fine. For me, coffee and caffenine have been a big and obvious enemy because they tend to tear up my stomach. I would base your ability to use coffee on how it affected you while you were sick. I do have alcohol every now and again, and I can hold fine. If I have too much my movements go instantly to liquid but that is somewhat like how it would be on a normal person too in a way.”

On almost the year anniversary of surgery 1, I am in Mexico.  My jpouch is doing great, and it is wonderful to be able to travel again. This is our first trip in many many years, UC had really taken away the ability to travel and enjoy life. 

I’ve been eating the local food, and all is fine. My movements have become more liquid for some reason even though I’m still taking my normal 4 immodium and 2 doses of metamucil each day.  Not a problem but since I started using my jpouch about 6 months ago, this is the first time I’ve had all liquid BM’s.

We’ll post pictures soon of the trip.

Mark

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!

This time Megan was preparing for a conference presentation at a yearly conference for her work.  At the same time, we were preparing to go and visit the GI, to make the final decision for surgery.  My last chance medicine had failed, Humira, and I was either to live unhealthy and predinsone dependent or agree to the surgery. 

This time this year, we are going to the same conference just one year later. We are going to Mexico for the conference, she is preparing for presentation, and I am going with her. After she is done with work, we are taking a vacation and spending 3 days relaxing on the beach in Mexico. 

How good things have changed!

Photo by:  grantmac