We are thrilled to announce the birth of our little girl, Laney Lee-Hilton. She was born on June 12, 2010 at 4lb 9oz. Although small she was full term and perfectly healthy with a good working digestive system!  Almost 3 years out from my jpouch surgery it is so exciting to see our life today.  It is hard to believe that 3 years ago I was dominated by UC with now ability to see life outside the dominating haze of UC. And now, I’m healthy with my jpouch, enjoying my life and celebrating the birth of our first baby.   To everyone who is looking at surgery or feeling like disease is dominating their life, just keep fighting to regain your health so that you can lead the life you deserve free of disease.

Here are some photos of our sweet girl:

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• July 24, 2008 -- Our Message Board (827)
• May 11, 2008 -- Photos 1: Colectomy (98)
• May 11, 2008 -- Photos 3: Jpouch (97)
• February 13, 2010 -- Take a walk in my shoes (93)

We’d love to have jpouch.net give Lisa some great support and go visit her blog and UC to Jpouch Story Lisa’s UC to Jpouch Story .  She has just had Step 1 surgery and on the mend. She is new to the community and as we all know could use some jpouch support.  Meet Lisa in some of the below photos before surgery – we hope to see her in back to happy photos soon after this recovery! Lisa’s UC to Jpouch Story

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• July 20, 2011 -- 2 Years Post TakeDown (6)
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FIRST - After 15 years together Megan and I were married in a private ceremony on Saturday, Oct 24th.  We had a quick ceremony in a beautiful park in Georgia.  A friend of mine from childhood lives in North Carolina with his wife came down to go see a show with us, and learned they would be our witnesses.  It was all planned in less than week (although the talk of marriage has been many years in the making).  Our marriage is bittersweet because it is hard to celebrate our marriage when our gay and lesbian loved ones are unable to have the same civil rights to marry their same sex life partners.

And below is our wedding video.  It took 7 mins. and unfortunately, it was really WINDY, so the sound on the video is pretty bad.  But you can hear parts of each of us and our vows to one another.

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SECOND - I’m healthy!  I AM  healthy!!  Really nothing much has changed about my physical look (scars) and how my body feels and acts from the 15 – month jpouch update.  Although, below is a recent photo of what my scars look like, I know some of you have asked how they look now. Look pretty good if you ask me :0  I might be bias though because I’d be willing to look like anything as long as I’m free of UC.   I’m able to do everything and have no limitations.

• My body feels strong and I have good stamina.
• My weight is 141 pounds (stayed around 120 when I had UC, worst was 100 pounds). This weight feels good, I feel like I look full and healthy.
• BMs are around 8 per day. I do wake-up a minimum of once a night to use the bathroom and sometimes twice.
• I haven’t been taking Imodium or Metamucil lately.  I just get lazy and don’t think to take the meds. I do have more formed and less BMs if I use those products.
• Very little butt burn, but sometimes do have itchy butt. Cream cures that up.
• Never have urgency.
• Never have accidents. No leaking.
• Sometimes I do feel like I get dehydrated even when I’m drinking enough.  I try to mix up my water and electrolyte drink to keep that from happening.
• I have had 2 rounds of pouchitis in 2 years. It is no fun but cipro clears it up quickly for me.
• I eat everything, I have no problem with food.  Although, the better I eat, the more consistent and formed my BMs. If I eat junk, my body will let me know.

THIRD - Megan, Katie and I will have been in Athens, Georgia for 1 year in December! Can you believe that?  Megan is enjoying her position as Assistant Professor at the University of Georgia.  She has had lots of opportunities to thrive in her work interest.  Here is an article in UGA Red and Black Newspaper about one of her students project.  The picture above shows Megan with the 6 other professors selected for the 2009-10 Service-Learning Fellowship.  My work is going well, I’m doing finish carpentry for a contractor in Athens and enjoying tht. It is hard here in the construction industry because the market is really flat due to the economy.

Katie is doing well. You can see in her photo above that she is living a dog’s life. She sleeps, plays, loves, eats, and hangs outside. She really loves the back porch, and she has great windows she can see out of.  We think she is about 9 yrs old now and her joints have been showing the age but she is healthy and happy.

Thank you to everyone for all your support over the years. A special thanks to our family and friends and of course, to the wonderful community over at www.jpouch.org .   We are living happy and healthy and thankful for everything that the jpouch has given us.

Most Commented Posts

• July 24, 2008 -- Our Message Board (827)
• May 11, 2008 -- Photos 1: Colectomy (98)
• May 11, 2008 -- Photos 3: Jpouch (97)
• February 13, 2010 -- Take a walk in my shoes (93)

Jason PA

If you are not familiar with  Jason PA, you definitely need to watch this video.  Jason PA is 38 year old State Trooper in PA. He had a jpouch and it failed and he is now living a healthy wonderful life with a permanent ileostomy.  He participated in this great video about made a video about Living with an Ostomy.  For those of you who are facing life with a perm ileo – Jason PA is a wonderful source of inspiration.

Most Commented Posts

• July 24, 2008 -- Our Message Board (827)
• May 11, 2008 -- Photos 1: Colectomy (98)
• May 11, 2008 -- Photos 3: Jpouch (97)
• February 13, 2010 -- Take a walk in my shoes (93)

We just got this email from Tom, and he is new to seeking online support to figure out the complication he is dealing with.  Could you all take a peak at his concern and see if you have any insight.  Also, we encourage our readers to post their questions/concerns at jpouch.org because that is a thriving discussion board that can offer great insight as well.

My J Pouch has been in place since 9/2005.  I immediately started having problems with the number of bowel movements I experienced on a daily basis – sometime numbering 20 – 25.  My Dr. tried a number of drugs to “slow down” my system but nothing helped.  I have seen a nutritionist only to be told after two contacts that she couldn’t help me.  To this day I continue to have 12 – 18 bowel movements a day.  I am currently undergoing a physical exam to see whether or not there are any other contributing factors to my frequency problem.  Needless to say, I am suffering from this problem.

Has someone who “had” a similar problem and beat it or severely reduced the daily number of movements.

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• June 16, 2008 -- % of UC patients have surgery (0)

Help ”the Crohn’s & Colitis Foundation of America (CCFA) and Shire increase funding for inflammatory bowel disease (IBD) research through the “IBD March on the Hill” program. We are asking Facebook users across the country to go to www.IBDMarchOnTheHill.com, select the shoe of their choice, and take a virtual step on the National Mall in Washington, D.C.  Participation is free, and for each step taken, Shire will donate $1.00 to the CCFA’s research, education and support initiatives.”  (Blythe Bertolo)
 

There is NO EXCUSE to not participate, I’m seriously putting on peer pressure to participate, every click of a button is $1.00 donated towards IBD research.

Most Commented Posts

• July 24, 2008 -- Our Message Board (827)
• May 11, 2008 -- Photos 1: Colectomy (98)
• May 11, 2008 -- Photos 3: Jpouch (97)
• February 13, 2010 -- Take a walk in my shoes (93)

We are pleased to welcome Christine and Ricardo as bloggers to our jpouch.net family. Ricardo is our resident FAP jpoucher, and Christine is his amazing wife. Together they documented his story, surgeries and experiences. They will be sharing their complete story with us, but in the meantime a brief introduction is in order. Here’s a warm welcome!

The Chavez Family November 2008

It was the middle of December when my husband went to his yearly physical fitness check up, which is required for his job. This time, however, he actually mentioned his family history [editor's note: of colon disease? cancer? IBD?] and followed through with getting his colonoscopy done. The colonoscopy was scheduled in the beginning of January and from that day on we have been living with a different awareness. Ricardo went in for his colonoscopy and came out 2 hours later — still groggy mind you — I had not talked to anyone, I was waiting to be called back, instead he came out. I thought “everything went well,” so I asked him “how did it go?” He responded, “Not so good, they need to remove my colon, otherwise I will die.” I was shocked, although we knew this was a possibility. We were praying he didn’t have it [editor's note: what?] and after talking he would say “Babe, I’m fine I don’t have no problems going to the bathrooms and I have no symptoms.”  So we thought no he would be fine.  Unfortunately we were wrong, it so happened that he had hundreds of polyps, of which a couple needed to be biopsied because they were large in size; there were too many to remove and if he didn’t remove his colon he would [end up] like his father [and] get colon cancer, and [probably] have a slim chance of surviving it. That [... drive] home [from the doctor's / hospital] was hell. I was so hurt, [this bad news] was something I had been dreading to hear and he was I think so drugged up he wasn’t all there yet, he was acting like nothing [was wrong]. I think also [Ricardo, my husband] was thinking “o[h] well, I['ll] have to do what [needs to be done], nothing more to talk about. [These sentiments of acceptance are] [...] like my husband, so I dropped him off at home and went to pick up our son. Once he shut the car door I drove away breaking down [in tears], I couldn’t even catch my breath, this was life changing and at the time I wasn’t thinking for the best. Days past and we overcame the “finding out phase” and next was the Doctor appointment for basically confirmation of what they found and to discuss our options.  His sister who also has FAP and myself and Ricardo went to the appointment, the Doctor explained how the surgery was going to take place and that it should be done asap.

*check back soon for rest of Ricardo’s story

These posts might also help out:

• February 15, 2010 -- I’m so over this colon. (13)
• February 10, 2010 -- Making Ostomys HOT! (3)
• February 2, 2010 -- It’s a girl! (7)
• June 6, 2009 -- Let’s just call it … IBD (8)

photo by kimncris

A fellow J-Poucher (Jeffrey in LA) wrote us a personal email and asked us the following question.  Since we didn’t have an answer for him, we thought we post the question here and see if anyone has any thoughts:

Jeffrey asked:

A friend invited me to go horseback riding but I’m worried it make me have to empty the pouch.  You know, the rocking motion, the occasional smack of the saddle catching you in the butt.  Just wanted to know if any one on your site with a pouch has gone back to riding.

Well, anyone have any thoughts?  I think we can answer this with any activity that might have a rocking motion like riding a motorcycle or training for NASA space flight mission.

These posts might also help out:

• July 23, 2009 -- Happy Thoughts 101 (15)
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Image from Celtnet Medicine. If you click on the image it will link you to the same photo but it will explain the image in detail.

Hi,

How are you doing?  I’m okay but I’ve got some things on my mind.  Last night Megan and I went out to a great little Italian restaurant. Since we are new to town we still have the excitement of trying new restaurants. We were very gluttonous at dinner, we had 2 glasses of wine, salad, dinner, desert and coffee. It was a great dinner, and now that Megan has finished her PhD program she has some more time to relax and enjoy her time off.

Anyway, I started telling her that I had to get up late last night to take a bath to help my new hemorrhoid – my new external hemorrhoid.  I’ve only had the exterior type that are prolapsed (which have caused my skin tags).  I’m feeling pretty uncomfortable with this thing and I’m thinking I may need to go get some medicine to use that is higher strenght, although Nupercanal is a great OTC topic med.  I’m also really struggling with the old skin tags from my old prolapsed hemi’s, those of you who have followed my story know that these have been an issue for me.  When I had my surgery the doctors didn’t want to remove my skin tags because they said I’d be more uncomfortable. I feel like they aren’t sanitary and they are causing me issues. I want to get another opinion on how to handle them.

Talking about my hemi’s with Megan made me flashback to my first surgery and something that bothered me that the surgeons never told me about – Right after the 1st surgery I began feeling pressure on my anus, my instinct was to try to hold in what I was feeling but you can’t because you just had that surgery.  I told the resident surgeon and she didn’t know what is and she even tried draining my anus (that was not fun).  I left not knowing what this was, went home and started draining a  milky fluid from anus (even though I had the temp ileo). We posted on jpouch.org to find out if others had dealt with this, and many people responded YES.  Turns out after I went for my follow up and told the surgeon again, that this was completely normal and my new bowel was still working and producing mucous that I should expell when needed.   Not sure why this was a flashback that I wanted to write about other than I wish, really wish, I had been told by my medical staff to expect this. I also wish that 3rd year residents who are just about to be practicing GI surgeons knew about this!

These posts might also help out:

• July 20, 2011 -- 2 Years Post TakeDown (6)
• September 2, 2010 -- My Foster Bag Wants to be Adopted (6)
• August 26, 2010 -- “My Hole” (4)
• August 17, 2010 -- IBS? Nah: Irritable Vowels! (0)