J-pouch Life

I’ve been on the east coast this week visiting my 93 year old grandmother. It feels great to be able to help out with the family again, especially after needing so much help through the three jpouch surgeries last year. I’m definitely more patient with other people now, and I feel I’m a better care-giver. Interestingly, we have a lot to talk about: itching from Morphine, inability to sleep through the night, loss of appetite; symptoms of sickness take on greater importance when you’ve experienced them first hand.

Speaking of care and loved ones, this week has seen some great posts on the topic of love and life, by Lizz. And I just realized that, while I hang out behind the scenes a lot and tweak some colors and edit some posts, I’ve never properly introduced myself or explained my whole story. Look for that in the near future, and stay strong everyone!

At the risk of becoming an obsessive J-pouch.net poster, I have another blog-a-de-blog-blog.  I am often on the Jpouch.org board answering queries, and one that seems to come up a lot is, “How do I tell a new partner/person I’m dating/etc. about my ostomy/disease/J-pouch?” My answer is always the same, and always involves the most amazing example from my own life.

A GORGEOUS young girl who currently has an ostomy, asked how to tell her new person. I said:

“I think you just have to take a leap of faith. Some people with surprise you with their reactions.
I don’t know that there’s any way to phrase it that will make it less awkward for you. You’ll probably have to explain a lot about the disease, surgery, etc. and that’s okay! You just have to know what a beautiful, wonderful, strong person you are, and that this doesn’t define you. The right person will realize that and be supportive.”

A few others responded, suggesting that she should wait, that telling them too soon might scare them off. Duly noted, but WOW I could not disagree more. I think these people need to raise their damn standards.  A la, my response to that:

“I know this is ‘heavy’ stuff and that some people have problems dealing with it, but do you really want to invest time in a relationship with someone who can’t deal with such a significant part of your life? I don’t…Just my two cents.”

Which brings me to the wonderful person in my life. My amazing, understanding fiance, Rob. The story I always tell people in these situations is about the time Rob asked me to tell him something about myself he didn’t know yet.  We might have been dating 3 weeks, but I doubt it. We were definitely falling for each other. So the first thing that popped into my head was, “Crohn’s. Ugh…Should I do this? What if it freaks him out? Or grosses him out?” Then… I took a leap of faith. I told him. He asked me questions and I answered. His response? “You are so brave.” I will never forget that as long as I live. I will always know what that meant to me, and it instantly showed me the kind of person I was falling in love with.

All I want for these fellow pouchers, IBD-sufferers, ostomates, is to have a happy, rewarding life, and someone wonderful to share it with. As much as we’ve been through, as strong as we most certainly are, we deserve a Rob in our life.

So THIS is what I told her:

“My fiance had dated a girl in High School whose little bro had Crohn’s, so he at least knew that it was a difficult disease and knew more maybe than the average person. So I didn’t have to explain too much in detail with him at first, but he asked me about the surgeries in detail, I told him, and now we have NO secrets. He knows everything. ie: That when I go to the bathroom to “get ready for bed” I’m washing my face, brushing my teeth, and putting in my nightly suppository, and he only cares that I am healthy AND he still thinks I’m the sexiest woman on the face of the earth. He has gotten in my hospital bed with me and read me Harry Potter and fed me chicken broth when I had to have emergency surgery. There was no pity in it either, just love, and THAT, my girl, is what you deserve.”

And all I can say to that is AMEN, Lizzy!

So cheers to all the wonderful people in my life: My ever-supportive and strong as a rock mother, my best friends, my sweet & loving aunts, my sweet little dog who is always there to comfort and worry about me, and my incredible man.  God has truly blessed me, and hope will bless all of you with the same type of love and support we all deserve.

Okay, so I think one of the big *fears* that people have about this surgery is how it might impair their quality of life. To them I say this; it has only improved mine.  Allow me to give you a scenario:  Shopping pre-surgery involved stabbing abdominal pains while browsing for blouses.  “Mother F@#!%!” that hurts!! But…oh what a cute shirt…” Followed soon by a “can’t-get-there-fast-enough” dash to the bathroom. “Where the hell is the bathroom!!?!?” Wait, scratch that last question, I always knew where the bathroom was then. Now, I find out where it is when I need to go. And now when I need to go usually does not involve an Olympic-paced sprint.  (Yeah…I can run that fast.) Now I can browse for blouses and I can *drum roll please* hold my crap!!

Now, I know J-pouchers that do crazy, extreme sports kinda shit, and I salute them! One of my good friends rock-climbs, sky dives, swims with sharks (which would really make me crap my wetsuit).  Generally, I do not find my J-pouch to be a hindrance, and although I’d love to go skydiving, I’ll skip the sharks, thank you.  Sometimes there are problems, but it’s still in its toddler phase, so what can I expect?

One good thing I have noticed, and some may find the good part debatable, is that I really cannot drink alcoholic beverages without having an instant headache. I think this may be completely unrelated to my J-pouch and more an issue with my medicines…and not that I was a raging alcoholic before, but damn I really don’t like to drink now.

I guess the thing I love most about my J-pouch is forgetting about it. Most of the time I feel like a regular ole’ coloned human.  (Even though, in reality, I am a super bad ass bionic J-pouch woman). Even amidst the Crohn’s and whatnot, it really does not bother me too much. Some guy on the jpouch.org board was asking about what life was really like with a pouch, and I honestly replied, “Sir, I heart my J-pouch.” (Can we get that on a bumper sticker puh-lease?)

But seriously, I can dance again…I can do so many little things now that before seemed like a daunting task.  Now, my main problem is simply remembering to stay motivated.  But, I have done some pretty rockin’ things with this bad boy. I went whitewater rafting on one of the most difficult rivers in the world this summer, and I made it my biach.  Class V rapids got nothin’ on this J-pouch.

So, I’d say for most of us, even those of us *a-hem* (me) with several complications, a J-pouch is a pretty great neo-organ.  I seriously cannot use it as an excuse to sit on my ass, but rather, as an excuse to make friends with it again.  To shop more, jump out of planes, to float down a river of pounding waves and sharp rocks, and market bumper stickers that will all only confound the general population.

Evelyn, painting by Heath Rosselli

The issues with body image are prevalent for individuals who undergo surgery such as the colectomy to jpouch.  Many individuals struggle with the stoma and appliance and self-esteem/body image. Others struggle with the scars after all is said and done.  We rarely see ostomies and scars out in the world for people to easily view. I guess that is what makes this blog unique – just showing it all.  A recent exhibit at the Louvre in Paris shows a nude portrait of a woman after a masectomy due to breast cancer, Evelyn by Heath Rosselli.  The picture has won critical acclaim for showing the strenght and happiness in her face while removing the empahsis away from her female sexuality.  I also love the beauty of the Colondar for making art of the modified bodies of colon cancer survivors.  I figure we are making art here on this site, showing the beauty and truth of this body modification, while showing the support and strenght to get through the changes.  People really are remarkable when you hear their stories of survival and coping.

I went in for my third outpatient dilation and pouchoscopy this morning. (I had an additional one done in my doctor’s office without meds – not fun!) I think I have the drill down now. Everyone in the clinic knew my name and greeted me. I filled out the same paper work (for the third time!), went back to the prep area, changed into the beautiful hospital gown, got my warm blanket and waited. The nurse poked me in the arm and hooked up my IV (left a bruise today).
I still got a little nervous as I laid on the table in the exam room just before the procedure began. Then when the drugs kicked in I relaxed. My memory gets a little foggy, but I remember telling my doctor a couple of times in a bit of a panicked voice, “Oh, that hurts!” She was so kind though and encouraged me and told me everything she was doing. For some reason today I had a LOT more gas when I got home. It was like a hot air balloon was in my stomach. After attempting to let it all out, I crashed on the couch and slept for FOUR hours!!
My doctor told me the hole to my pouch had constricted and closed up (not totally) again since last week. I knew that. I could tell. Last night and the night before when I went to the bathroom I had to strain so much to have a BM that my obliques were aching, even after I was done in the bathroom. But I felt some improvement during the week. So I’m just going to keep on hoping that this works.

I don’t think we can stress enough how important your comments are to us! On 148 posts, we’ve had a whopping 578 comments. Keep ‘em coming!

This week we expressed our sympathies to Mike, who had some bad news. In response to that, if you have some relationship stories you’d like to share, please post them!

We also welcomed Jessalyn to the site, as she shared her story with everyone.

And after reading Abby’s update, we realized that a web search for ‘pouchoscopy’ yielded only speculative results. Well, a little Wikipedia account creation and editing took care of that, and it also resulted in a great conversation with “superman” from the U.K.

Finally, Brevin wrote what is probably the funniest list of questions for a surgeon that we have ever seen. In fact, we’re going to stop now and go re-read them… right after we experiment with time traveling over dinner!

Thanks for a great week everyone!

I’ve just returned from a post-surgery follow-up (more hyphens anyone?) with my surgeon. I scheduled the appointment because I noticed something squishy around my incision. Since all my friends happen to be doctors, they all told me it was an umbilical hernia. In my nicely ignorant state of medical knowledge (with apologies to my wife who is also a doctor), I thought hernias were something that happened to old men who tried to save mechanics stuck beneath an automobile when the hydraulic lift has collapsed. You know, the adrenaline rush, and you lift something too heavy. Like Clark Kent in the first Superman? (Except that analogy is terrible because Clark Kent, being Superman, wouldn’t get a hernia even if that was how you got hernias). Well, I was wrong, dead wrong. Here’s a video of what it looks like. It’s my first video, so pardon the wonkiness. My surgeon wants to have it repaired, but she said I could finish out the ski season first so I could have some fun (all of 2008 was pretty much lost to sickness). I’ll keep you updated. Anyone with hernia experience out there?

Pouchoscopy has been added to Wikipedia

Reading Abby’s update from yesterday made me realize: there’s no Wikipedia page for pouchoscopy! This might not seem like a big deal, but when you consider that Wikipedia results are typically in the top 3 on Google for any term-specific search, you can begin to see why it’s important.

Well, luckily it’s a wiki, so I did a little poking around and found a few articles that use the term pouchoscopy, articles from respected medical journals. Hopefully the new Wikipedia entry is approved by the many administrators and users of the great online encyclopedia, and it stays there to help future J-pouchers.

You can read the new article here, and see my edits to the J-pouch entry here (I clarified the three-part surgery, ’cause that’s what I had), and see the last sentence in colonoscopy referencing the pouchoscopy here.

Mark and Megan have done a great job de-mystifying these diseases through their photos and this site. I hope my contribution to Wikipedia adds another level of transparency to these diseases much the same way.

So for those of you who read my first blog entry on this website, here’s my update.

On Friday, January 16, 2009 I went in for a pouchoscopy to see what was up with me having such difficulty having bowel movements. I had to push so hard to go to the bathroom that I felt nauseous for like an hour afterward. There was also some blood in my stool. My doctor wanted to do the pouchoscopy to see if either the opening to my pouch wasn’t dilating, or if I had already developed pouchitis.

I didn’t have to do any prep for the pouchoscopy. They had me change into a hospital gown, hooked up some heart monitors, and started an IV. They wheeled me into the procedure room and started the good drugs. It felt like a half a bottle of wine hit me in just a few seconds. I was with it enough to see what was going on on the screen. The opening to my pouch wasn’t dilating. My doctor was able to dilate it during the procedure. I didn’t really feel anything (that I remember anyway).

I went home after the procedure and took about a three hour nap. That day I was able to have bowel movements without much trouble, but then the weekend came and things got rough again – but not as rough as they had been before. I called my doctor on Monday and told her my status. She had me come in again on Wednesday to check me out.

At my appointment on Wednesday the 21st she did a rectal exam in the office (bend over, here’s the lubrication, fingers in, pushing around – ouch!). She said that because I still have my rectum and 5 cm of mucosa lining, the opening to my pouch is too high up for me to learn how to do self-dilations. She said she read that 50-60% of people who have problems with the opening to their J-Pouch dilating will eventually be able to dilate after repeated dilations and can therefore avoid surgery to revise the j-pouch. Because it hurt too much to do in her office without drugs, we are now scheduling weekly out-patient dilations at the hospital. I’m fine with that. She sounded like she’s willing to do this for months to see if it works and we can avoid surgery. Surgery would in the very least mean another temporary ileostomy and in the worst case would mean a permanent ileostomy if the integrity of the pouch couldn’t be kept during the surgery.

So for now I’m going to the hospital every Friday morning to be scoped and dilated. Thank God for the good drugs!!