J-pouch Life

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.

Happy cows come from Michigan...and are named Jackie

I’ve made a new update on my blog, Blood Poop and Tears, about my second surgery out of three, and how I’m struggling to get healthy enough for it even to happen. Ugh. Being fat is stupid.

Here’s a preview.

“So guess who has set a date for surgery #2? Yea, its me. Shabam! I was so excited I almost crapped my bag.This is far more exciting than setting a wedding date…though faaar more terrifying. You think committing yourself to someone for the rest of your life is terrifying…try letting someone cut you open and mess with your poop chute.

So while this new surgery date is awesomely excitingly rad…its also SUPER depressing. The reality has set in that I’m wicked fat.”

Check out the rest, and I’m going to do another post here shortly with some poop bag reviews. I’ve tried a lot and have some good stuff to share. Thanks!

Humpty Dumpty had IBD,

Humpty Dumpty said, “Shit! Why me?”

Humpty took drugs, said, “Man, this sucks!”

and opted to get sur-ge-ry.

Hi, all! It’s me again, back with an update. The past four months have been one fun test after another. The first was my ass-reaming (pouch scope) in January to determine what was causing my tummy problems (sick at my stomach, incomplete emptying, etc. after stopping the Xifaxan I’d been on for 2 plus years). The pouch looked good, so the next test ordered was a barium small bowel study. This required me to do something I hadn’t done in years-Drink glasses of thick, nasty barium while sporting a stylish hospital gown (one in front, one in back) and roll around on an x-ray table for about 3 or 4 hours while the doc took picture of my insides. The study was reviewed and revealed a narrowing of my intestines next to the J-pouch connection site. Afraid my stricture was back, I was referred to a surgeon who reviewed the films, scoped me in his office and found no stricture, but some weird, “white stuff” in my pouch. (Not barium though, he hypothesized.)

This is a photo of some barium I was recently downing.  I find the pretty pink straw makes it seem more like a pina coloda. 

Test 3: CT scan requiring even MORE barium and IV dye injection. This revealed no sinus cavity as suspected because of the “white stuff” (great news!) but indicated that I have one whopper of a J-pouch. (Insert my-j-pouch-is-hung-like-a-horse joke here). Evidently when I had my horrible first stricture that I didn’t notice after my takedown 4 years ago (how am I supposed to know what a J-pouch poo ‘should’ be like?) it caused my pouch to stretch to accommodate my accumulating poo. Evidently pouches can “retract” but mine liked being the big pouch on the block, so it just stayed large and in charge.

Test 4: Defecating video pouch-o-gram. Translation: This time I don’t drink the barium, it’s enema-ed up my ass, I’m given IV dye (again) for contrast, and I roll around on a table for 2 hours while they video me crappin’ it out. This should tell my surgeon if my big-daddy pouch is not emptying properly because of its size and causing constant bouts of pouchitis. This would explain why I felt fine when I was always on antibiotics. – The antibiotics were treating my pouchitis caused from incomplete emptying.
This brings up several new questions…

• How do I feel about pooping on tape? I don’t feel embarrassed anymore. I’m a little worried I might be radioactive from all the barium I’ve ingested (in one orifice or another) in the past few months, not to mention the contrast dye. I’m also concerned about what options this leaves me. Reconstructive pouch surgery to “shrink” my pouch, doesn’t sound like a lot of fun, and I’m not sure they’d even suggest it after all the problems I’ve had and the Crohn’s diagnosis. (Crohn’s+surgery=bad.) If an ileostomy is suggested (it’s been mentioned more times to me in the last few months than I care to recall), I think I will ask to begin popping perma-antibiotics again.
• Do I care that it’s probably not that “good” for my body to take 6 antibiotic pills a day? Not really. At this point, I call it a wash. I can’t think that Humira is that great for me, or any of the other drugs I’ve slammed myself with in the past decade to control this disease. Our options suck. All options for sick people suck unless that option is a cure for their disease. At this point in my life, I’m over being bitter about my lack of appealing options and the side effects of our medications. I now just look for the options that will allow me the best quality of life NOW. I try to not worry too much about the long-term or possible super-scary side-effects because I can’t imagine any of them are any worse than anything I’ve already endured. Humira, for instance, MIGHT give me cancer and won’t cure my disease, but it makes it manageable so I take it (twice as much as the ‘normal’ dose.) The cancer thing scared me at first, so much so that I put off trying Humira until I was skeletal thin, unable to eat, malnourished, and absolutely exhausted. I realized that whatever Humira “might” do to me, couldn’t be too much worse than what Crohn’s was doing to me now. I just wanted to feel better, I was desperate, out of options, so I took it. It helped.  The suppositories I shove up my ass every morning and night don’t excite or stimulate me, but they make my quality of life better overall, so up they go! It’s the same with the antibiotics-if they can help me keep my J-pouch longer, feel better, and not have to deal with an ileostomy, or at least put if off a few years longer, that seems like a more appealing option to me.
• Do I worry about what all of this “might” do to me in the next ten years? Kind of, but not terribly. I try to live in the moment and get the most out of life now. Of course this is not to say I have a fatalistic view. If I find out there’s some great danger with living with the big pouch or reinstating long-term antibiotics, I’ll reconsider. Plainly, I’d rather pop pills than be cut open and put back together again. Enough with the Humpty Dumpty shit.

So I guess this thread has a few themes I’d like you to chime in on.

How do you feel about your medical options as an IBD patient, or as a patient in general? Do side-effects scare the bejesus out of you, or are you just thankful to have an option?

How do you feel about all of the invasive, embarrassing tests we get as IBD patients? Do you, like me, just not care anymore? Is your modesty all but turned to dust?

How do you feel about being young person with an ileostomy or a j-pouch? How do you feel about having had multiple surgeries before your 30th birthday?

How do you feel about how the diseases affected your family and your achievements in life? Have they limited you, caused riffs in your family life, or have they inspired you to fight more and achieve more successes?

Lots to think about. Lay it on me.
I’m off to go poop in a cup and let someone examine it. Just joking

Hi, all! Well, I have a bit of a mixed bag here today news wise. Here are my updates. Got a decent severance package from the firm that “fired me” because I missed so many days when I was sick. However, they still keep calling me to ask for help…Hmmm…Went to see the new surgeon yesterday and he was good-seemed very knowledgeable. He scoped me in the office just to get a look at what was going on with my J-pouch. When I told my best friend this (who is a doctor) she said, “Did they give you any sedation or anything?” I replied “No…” Her next question, “Did it hurt?” Me: “Um, not really. I mean, it didn’t feel good, it felt weird and was uncomfortable, but I’m so used to it, I guess I don’t think much about it.” Let’s face it, after IBD you get so used to things going up your ass you just look away and go to your “happy place.” *Think about the beach…um…puppies…” Anyway, good thing he scoped me because although the pouch “looked good” he saw some “white stuff” in there. I did have the barium study about a month ago. When he was “lookin’ in there” he said, “It shouldn’t be barium, that was back in March, that should be long gone.” So…his hypothesis-I have developed a sinus tract/cavity on my J-pouch which is collecting mucus or infection. He ordered a CT scan to see what’s happening. Hopefully this is not the case, because sinus cavity on your anal parts=more surgery for Lizzy. Lizzy does not want more surgery, guys! Lizzy has had ENOUGH surgeries for the first 27 years of her life. (Did I mention today is my birthday??!)
In other developments, my right thumb is really swollen and I can’t bend it. This is making cooking and picking things up hard. Man, that opposable thumb is something we really take for granted! Anywho, went to the doc (again) today and he thinks it is just IBD-related arthritis. I have had enough of these “Ritis” brothers. Col-itis, Arther-itis. The Itis family sucks! Anyway, I’ve had it for years, but my joints have never been swollen and unmovable before. It’s kind of a pain in the ass.
Anyway, I am feeling better overall thanks to some Augmentin I’m taking for a (nasal) sinus infection. Keep your fingers crossed for me that the “white stuff” in my ass-region doesn’t require force-able removal.
However, if it does, I’ve decided that THIS IS IT! I’ve had it with this surgery, being sick crap. No, I know I can’t do TOO much about it, but I guess I’m just sick of fighting it. I never wanted to give into this, but with all the truly bizarre-o stuff that’s happened to me (J-Pouch twisting twice requiring surgery), multiple other complications including Crohn’s and strictures (requiring more surgery), I’m truly fed up. I still feel better than I did before the J-pouch surgeries-no comparison, but I’m tired of being “fixed” all the time. I’m 27, I just want to be a healthy “normal” under 30 young person and wear bikinis at the beach (not an ileostomy bag), be able to open doors with my dominant, right hand. I am just tireddd, ya’ll. I need a break and I’m afraid I’m never going to get it. I have always tried to have (and for the most part have succeeded) a positive attitude, but given my past medical history, my optimism is starting to feel more like denial. I think the reality is that I’m sick, weird shit happens to me (even my doctors joke about this), and that it’s not going away anytime soon. I think I’m going to bite the bullet and file for disability. My COBRA runs out in 18 months, and if I stay on schedule I’m going to need another surgery in another couple of years. My future husband’s insurance is a whopping $500 a month to put me on, and with unemployment running out soon after that I don’t think we can swing that. I’ve also got the “pre-existing condition(s)” going on and although I’d love to work, I just don’t think I can be a reliable employee with all my doctor’s visits and random health problems. So, I have to come up with a plan for the future that will allow me to rest and go to the doc when I need to, give me time off for surgeries should I need them, recovery time, lengthy sick leave when necessary, and health insurance. I’d love to work when I’m able, and I know that with disability you can work some. It is an option I’ve avoided for years despite the suggestions from friends and family, but reality is setting in.
Anyway, that’s the update. I’m off to have a lovely birthday dinner with my fiance and enjoy the rest of my day.
Stay well!

Hey All,

I’m FINALLY home! I had to get readmitted for pain control, you can check out the whole story at my other blog, www.bloodpooptears.wordpress.com. But I wanted to let you all know that I took some pictures, they are kinda graphic as usual. So if you want to check em out…here they are. Surgery # 1.