J-pouch Life

Hey everyone, Last week I got back from Camp Oasis, which is the amazing camp for 7-17 yr olds with IBD. I posted a blog entry about it here. I honestly urge you all to find the closest Camp Oasis location to you, and volunteer next summer. This camp is a really amazing place for kids, and for us…not to mention its FREE for all the kids. The kids and counselors all have IBD, and there Is a full time medical staff. Read more about it here CCFA: Camp Oasis.

Hello,

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:

Hi ya’ll. So, if you’ve been keeping up with the blogs over the past few months, you know I’ve had test after test to see what’s wrong with my pouch/me. Throughout the years I’ve had strictures, twisted J-pouch, Crohn’s, pouchitis. Now my new surgeon wonders if I even have Crohn’s. Maybe it’s just the worst case he’s ever seen of chronic pouchitis because my J-pouch doesn’t empty properly. Le sigh. Soooo. Never thought I would consider/long for an ileostomy-in fact, I thought I would do everything I could to avoid it and suffer to keep my j-pouch. Well, I’m tired of suffering. My surgeon is going to try to remove part of my rectal cuff to see if that helps things (although he can’t say one way or the other if it will improve things) and allow me to empty properly. Basically, he thinks I should try this before saying “ta ta” to the J-pouch. Sort of the last-ditch J-pouch effort. I really am so sick of surgery and my life revolving around them and being sick. Maybe this will help. Maybe it won’t and I’ll have more surgery. Maybe they will decide I had Crohn’s all along when I have the ileostomy again. I dunno. Do I keep trying or do I just leave well-enough alone?

Well, my J-pouch and I are now married to a wonderful, fully-coloned man named Rob.   We both have a new last name.  Not sure if the pouch is going to hyphenate or not…

Our knight in shining armor is Rob, who has stuck by us through blockages, twisting guts, and many surgeries. What a guy! Even through all this, he decided he wanted to be with us forever.  Needless to say, I am a blessed lady with a J-pouch.

My life has been far from perfect health-wise, but family-wise, in-law wise, friend wise, I could not be better off.  We had a wonderful weekend with family and friends,  a sunny Portland wedding day, great food, and other than a little arthritis, no IBD problems!

Now, back to the real, non-wedding world, I’m again spending my days on the phone with my insurance company arguing with them about a $500 charge for an x-ray and playing phone tag with my surgeon who just gave me the results of the pouch-o-gram test I had about a month ago.  Basically, it empties slowly and the lining prolapses.  Also, it’s too damn big.  No real surprises there.  He wants to do a pouch exam “under anesthesia” which will be, I believe, the billionth pouch-related medical test I’ve had in the past six months.  I am ready to move on with my life and make some progress.  I remember when I used to be an ambitious young thing.  These days being sick is a full-time gig and if I haven’t lost my ambition completely, I’m fully distracted from it.  I need to come up with a good plan that will allow me to flex my mental muscles and allow me down-time when I need it.  Anyone know of a career like that? Sigh…me neither.  Maybe I can be the first “Real Housewife of J-pouch County.”

mmmm...meat.

While there are tons of ideas about where our diseases can and did come from, this was one I hadn’t heard before. I thought it was kind of interesting. I know that during my upbringing, I definitely fell into this group.

Meat, fish protein linked to women’s bowel disease

I just did a honkin’ bag review over at my blog  Blood, Poop, and Tears

For everyone out there who doesn’t have an ostomy (and even those who have a new one), I put in what I liked and didn’t like about the bags I tried. And I tried A LOT. There are so many different kinds, so I would give the entry a good read through, but I’m warning you..its REALLY long. However, there is a lot of good info in there. There are a few more other bags I have, that I did not review so feel free to send any questions on. Happy Bagging!

Hello everyone it has been a while since being here on the blog.. we missed you all and your stories that we can connect with you on.  If you are new to the blog or if you are not familiar with Ricardo’s story he (this is his wife Christine updating his status) has a genetic disease called FAP and a year ago he went to the Doctor for a colonoscopy to find out he needed to get his colon removed due to the polyps in his colon.  Well it has been a year later and Ricardo is doing very well.  He is coming up on his one year check up and we are hoping for good results!  Ricardo is eating well and feeling good.  He goes to the gym 4-5 days a week, he has gained all his weight back from before and is continuing to recover as expected.

On the other end let me discuss a few things that are complicated with the new J~pouch, there isn’t very many but there are a couple which is depending on what he eats sometimes the bathroom is his best friend for the day or night, and with that comes skin irritations (butt burn) that he gets from using the restroom so much.  I think for Ricardo it is really a matter of what his diet is like.. too much greasy foods has caused this.. too much beer can cause this as well.  Other than episodes as mentioned he is living a normal life with his J~pouch and has adjusted as good as he’s wanted to.  In Ricardo’s situation it is a little different which I mentioned before he didn’t have pain or discomfort beforehand he just had to remove his colon to prevent colon cancer due to the amount of polyps in his colon as well as his genetic disease it would have eventually caused colon cancer so this was preventive surgery so with his situation the pain and discomfort didn’t start till after surgery but we are glad and very happy with the end results as of today and glad we had the opportunity to have such a surgery that potentially saved his life!

Here are a few pics since our last posting…

Enjoying food! Lot's of food

Green Beer for St. Patty's Day~enjoying a beer is no problem!

We have traveled so much sun and snow and all has been great! At the snow 2 hours away from home and only bathroom around port a potty

Family vacation to the bay!

In the RedWoods... another trip! I am telling you we are happy, healthy, and very thankful!

Our anniversary this year a trip to Saucelito.

First off, let me congratulate myself on the witty title I concocted while lying on a stretcher with a catheter rushing contrast dye into my vag. That takes mad humor-under-pressure skillz. Way to go, Liz!
So, maybe I should have called it “Return from the Crap-o-Gram”, because that’s what I’ve just done. For all of you crap-o-gram virgins, let me fill you in.
The test I had done isn’t actually called a crap-o-gram. In fancy doctor speak it is a defecating pouchogram. Sounds just as made-up, doesn’t it? Anyway, here’s the poop scoop:

Step 1: Sweet Korean nurse comes out to the waiting room to fetch you and hands you some paper work and two plastic bottles of barium. (You are kidding me, I have to drink MORE of this crap?!)Step 2: You drink the nasty barium, sweet Korean nurse lady brings you a warm blanket and fashion magazines.
Step 3: You walk up and down the halls while drinking a cup of water to help move the barium pouch-ward.
Step 4: Sweet Korean nurse lady shows you the ropes. Pretty fascinating and creative use of an x-ray room, I’ll give them that. So here’s the way the actual test goes:

After you drink the barium (just as disgusting as ever) you get your guts x-rayed to be sure everything is moving south. After this is confirmed, you move back to the crap-o-gram room to await more prodding.  Your fun and comforting fashion magazines are removed and you lie on the stretcher, knees facing east and west, while sweet Korean nurse lady inserts a catheter into your vag (actually bladder, but vag is more vulgar and therefore, more fun for me to say). She drains out the urine and fills-her-up with the contrast dye all the while making the need to urinate more and more urgent. After realizing with sheer amazement that this woman is doing her job with such grace and kindness, your vag is stretched to the limit as a very LARGE syringe of vag barium is pumped into your lady parts. Next, sweet Korean nurse lady gets the radiologist doc and more invasive barium insertion ensues. Doc tells you what’s gonna happen then lies you on your left side while she pumps three LARGE syringes of barium ass-ward. You are disconnected from the vag-dye bag and you trot on over to the x-ray potty. Now this, ladies and gents, is an invention for the ages. They made a crapper that fits neatly between an x-ray machine so you can watch yourself crap on TV as you go. They really took the TV in the bathroom thing to the next level. So, first, you get up on the “potty chair” feeling a little queenly as you are elevated above your loyal subjects. First, you relax, and realize that some barium is leaking out into your potty chair poo collection bag.  No worries, it’s gonna come out in a bit!  Next you “clinch” like you are trying your damndest NOT to crap. This is the move with which I am most well-acquainted. Next, you PUSH. “Really go for it,” the doctor said. As I was “goin for it” I noticed on the screen that the barium started to come out of the top of my pouch, and at the bottom, but that there was a large bit in the middle that wasn’t budging. This might be part of my emptying problem. Kind of neat to see, really. I wonder if I could get an x-ray potty chair installed in our apartment. Wedding gift idea, anyone?
Oh yeah, so Rob and I are getting hitched’ in less than a month, and I hope I can avoid another barium cocktail/ass exam before then. If I never see another bottle of barium, it will be too soon.
I’m feeling better after a shower and some Chocolate Cheerios, but I will tell you that I have never wanted a pressure washer for my nether regions more in my life.

Time flies when Colitis isn’t busy punching you in the gut. It’s been one year since that first surgery when I became a proud owner of a J-Pouch and I’m here to tell you that hey, look, it totally paid off. I’m hitting the ground running with my new lease of life and it’s fantastic. Ever since I got my health back, I’ve had no complications aside from a chronic case of kickbuttitis and the urge to do everything I couldn’t do in the 8 years that I hung out with that jerk Ulcerative Colitis. That urge, coupled with  an intimidating sense of freedom (that normal people, or “normies“, have been allowed to experience but do not seem to get excited from) have been rocking my world.

I came in at 151lbs right out of the hospital in 2009. I used "Avatar" quality CG to replicate the picture with me coming in at 191lbs today.

I posted my 6 month anniversary here, and not much has changed aside from my new addiction to adrenaline and endorphins (and Vitamin C chewables because they taste like candy. Don’t judge me!). But I’ve been busy living life and supporting the cause! Instead of typing a lot of silly nonsense, I’ll just share silly pictures of my accomplishments with nonsense-filled captions!

I raised over $4000 for the Crohn's and Colitis Foundation of America (CCFA) by completing a half-marathon with Team Challenge. I started training right after I came out of the last surgery by walking small distances and eventually ran 3 of the 13.1 miles. I now run about 5 miles twice a week and continue to support Team Challenge. I expect everyone on this site to attend the next Vegas Half-Marathon in December dangit.

I haven't been to the snow since 6 years ago when I poo'ed all over the place. Way to ruin nature, Colitis! But this past April I finally enjoyed an epic trip to a cabin, complete with snowmobiling at night and staring Mother Nature right in her beautiful eyes. In this picture you DON'T see a bathroom and I didn't even freak out by that. Does a bear crap in the woods? Probably, but for once I didn't!

That is a ^%#$ing cart of meat. I hope this will convey my current lack of restrictions in diet.

The scarring is such a non-issue. Seriously, who cares. The sweet irony remains that the largest scar on my torso isn't even from getting an intestine removed.

So for anyone who is trying to accept surgery as a final means or is already horribly scared by this ordeal, please know that it does pay off. Yes it’s scary and yes it’s a change to your world but you adapt and the world simply adapts with you. I’m healthy again and I feel blessed that I even received this opportunity. This J-Pouch community has been incredibly supportive to me and I will always be supportive in return. Always. Except while Lost is on, but that show only has two episodes left and then I guess I have to go cold turkey.

Thank you.