J-pouch Life

Brevin - by the glow of computer light

I just had a colonoscopy (explained by Mayo Clinic). While in the waiting room I thought of my UC in general and came up with this list. If you have Ulcerative Colitis, you know exactly what a “Colitis Incident” is. I just didn’t know what to call it. It’s when you get that urge to use the bathroom really, really bad. It’s this panicking sensation of you are going to go Number Two whether you’re ready or not. It’s not fun, but over time it gets less embarrassing, mostly because Colitis strips you of any sense of shame you might have had.  It’s a bit graphic, but we’ve all been there.

3. Great America

I’ve never been to Paramount’s Great America amusement park at the time. Colitis and roller coasters mix about as well as rabies and squirrels with little cowboy hats: it might look like fun at first, but at the end no one is laughing. But I went with a buddy of mine to help volunteer for an AIDS Walk that was taking place there, and set-up started while the park was still closed to the public. It was early in the morning and the park was abandoned except for a few volunteers routing supplies through to the main area. Abandoned amusement parks aren’t as creepy as you would think, but then again, it was light out with Spongebob memorabilia everywhere. I was walking around with a friend, admiring all of the closed exhibits and rides, when the urge came. I had no idea where I was in the park or where the nearest restrooms were. Disoriented and convincing myself that all the restrooms were probably locked by Spongebob-shaped padlocks, I resorted to going in some bushes near a basketball game exhibit, well out of the way of passerby’s. That was Colitis’s awesome way of ruining my first trip to Great America. Read the rest of this entry »

Lizz

So, in my last post, I was bitching about pooin’ my pants.  I am HAPPY to update to you, my J-pouch friends, that this was in fact NOT a flare, rather a side-effect of one of my new medicines.  Nowhere do I recall reading on the label, “may cause one to crap one’s pants. Oops.”  But, indeed abdominal pain, diarrhea, et al. were side-effects.  I have since stopped taking it and have been continent and happy for several days now! Also glad that no scope was needed. “The dreaded apparatus!” as Kramer would say.

So, I am in Portland, apartment and job-hunting and had a nice interview this morning. When asked for a “candid” reason why I left my last job, I replied, “I had emergency surgery.” I did not go into detail, because explaining that I was having surgery for a twisted J-pouch required much too much explanation! She then followed-up with, “Are you doing okay now? Is this something that would prevent you from working?” I paused…answered, “No.” I wasn’t exactly forthcoming about my GI distresses, but I have been able to work for the past 6 months.  It’s hard to decide how to handle these situations. I can work now. There is the possibility that I will not be able to at some points in the future, but not being a fortune-teller, I kept my mouth shut.

I’m also on the hunt for a good GI out here, before I officially move. The one my current GI recommended is not in my insurance “network”. God bless the insurance companies! So, the search continues. Feel free to recommend who manages your guts in Portland.

Hope you are all having a good, adult-diapers-free week!

And just an added note about the aforementioned twisting of the pouch. NOT common. This happened b/c for some reason or other, I did not make the scar tissue most folks do that basically holds the pouch in place. It happened once, and was “untwisted” by my surgeon, who chose to avoid surgery to “tack it down” to my tailbone unless it happened again. It did happen again…So I had surgery this past April to fix it and so far so good. Very painful, but again, not at all common.  I asked my surgeon once if this could be because I did lots of yoga. He kindly giggled and said, “No.”

Wearable Toilet: Japanese Invention

Right on the heels of Lizz’s post come these high-tech space diapers: the wearable toilet project.

Engineers all over the world have focused their vast brainpower to overcome one major obstacle—space pooping. The Japanese think they have a solution with their fancy new wearable toilet.

Indeed, this is a far cry from the glorified Depends former NASA astronaut Lisa Nowak drove cross country in a couple of years back. These can detect when you relieve yourself, remove the waste with suction and clean you up after each use. They can even eliminate unpleasant sounds and odors.

Sounds? Odors? I know this is somewhat of a joke, but there were many times when I wished for a good night’s sleep and something like this.

I know that, during my last hospital stay, my partner spent a lot of time keeping a lot of people in the loop about my condition. This time, I’m hoping to be able to do more of it myself, and I’m thinking of trying out this new site I found, Care Pages, which allows you to update your progress and have family and friends leave messages. Sounds like an effective way to communicate about your condition to all those who are concerned. The site is Care Pages.com and here is a story about how it got started and some people who have used it Story: Web site helps patients families, medical providers communicate

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. Read the rest of this entry »

The photo is of our dog Django and went with me in 8x10 format and hung on my hospital wall thanks to my husband!

My name is Abby. I’m 33 years old. In March of 2008 I was four months pregnant with my first baby and ended up in the hospital because I was having bloody diarrhea close to twenty times a day. No one knew what was going on. After five days of being in the hospital and all kinds of tests coming back negative my OB called in the GI doc to check me out. He met with me and talked to me about my symptoms. He told me my situation could be “life or death.” He talked to me about ulcerative colitis and toxic mega colon. I had never heard of these things before. I’m an educated woman, but I’m embarrassed to say I didn’t even know that my colon was the same thing as my large intestine.

My mom told me at that time that when she was my age she had been diagnosed with colitis, treated for it, and never had any problems with it again. My GI doc said that what probably happened was that I had a genetic predisposition to UC and the changes in my immune system as a result of my pregnancy brought on this full blown flare. More tests were done – tests that put my baby at risk. I was put on steroids and was told that they would be safe for my baby. Not long after the first round of treatment my doctor told me my nutrifill (sp?) numbers showed that I was steroid resistant. He said because I was pregnant my treatment options were limited. There weren’t many hospitals in the country that would take me to treat me. Fortunately for me, there was a hospital in the city in which I live (an excellent hospital) that would take me and treated me with cyclosporine and steroids. Within just a few weeks I put on 100 pounds of fluid while I was hospitalized. I was told I couldn’t eat and was put on TPN to nourish my baby and me. My weight gain caused me to go into a diabetic state and caused my blood pressure to raise so I was getting shots to keep it controlled.

At five months pregnant my husband and I lost our baby girl – Harper Lee. A few days after giving still birth to her (April 22, 2008), the number of bowel movements decreased to a safe enough level for me to be discharged home after about four weeks in the hospital.  Read the rest of my story click here: Abby’s full story .

Hey guys-

Boots after surgery with ostomy

I finally got around to posting my pictures. After I put up my post, but hadn’t yet uploaded my pictures, I got a virus on my computer and it was in the shop for a week. The same day I got it back, my sister went into labor and we had to head down to North Carolina and were there for a week. Now I’m back and I got around to posting. Hope you enjoy them!

Check out Boots’ UC Journey…..I’d love to hear from you so feel free to contact me!

Intro

Thank you all at jpouch.net for providing a source of insight and sense of community to these conditions I thought were non-existent outside of my own experience. Knowing there are people who can relate to your circumstances is a much needed relief. And I mean exact circumstances, not ball-park figure guesstimates like “oh, sometimes I get tummy aches, is that like your thing?”, well intentioned as they may be. This support is a blessing I can’t thank you for enough.

My name is Brevin and I want to punch my Ulcerative Colitis in the face.

It’s not like I just met Colitis the other day, hitting on the girl I was going to ask out and now I want to engage in fisticuffs. No, we go way back. This is a scuffle years in the making. I was diagnosed back in early 2003 and I dealt with it pretty well, all things considered. We would sometimes have slap-fights and call each other names, but nothing that made me cry foul. But given my current condition, ongoing medication, accompanying side effects, and constant need to use the bathroom, it… it gets old. It does. I miss my quality of life. I have had so many medical complications because of my Colitis that I’m on a first name basis with the ER. That’s not something to brag about. I’m at the point where I consider the rest of my life and where I would like to see myself and my well being. I don’t like what I’m seeing with Colitis’s smug face in the picture. But I know the cure, that steak through the heart of the vampire Count Von Colitis, is surgery. Who’s afraid of surgery? Me. Read the rest of this entry »

I just wanted to make a quick note about Prednisone, as many people with UC (and many other diseases) end up taking it. Back when UC was a very minor part of my life, my biggest fear (because surgery didn’t even seem like a possibility) was having to take Prednisone. I try to talk to the physicians out of prescribing it, but eventually it made sense as the next step in trying to manage my UC. I was freaking out about the side-effects, the weight gain, the moon face, the long-term consequences.

But when I started taking it, it made me feel better and I had almost no side-effects. I had some difficulty sleeping and I didn’t feel full as quickly (my satiation point seemed to disappear somewhat) but that’s it. When I was in the hospital, I was on ridiculously high amounts and it really didn’t effect me much. I was concerned because it looked like I would be taking it once a year or so for about a month, but the physician told me that taking it that infrequently probably didn’t have much effect long-term.

I’m not saying that Prednisone is pleasant and I know that some people have absolutely awful experiences with it. I just want to point out that it can make you feel a lot better and if medically it makes sense for you to try it, know that it may not be as awful as you anticipate.