J-pouch Life

• News article on College Baseball Pitcher David Deminisky life with his Jpouch: Pitcher with Jpouch
• Erin’s (22 yrs old), June 8th surgery, new blog here:  Erin’s UC to Jpouch Blog
• Merry Lynn having surgery soon due to Dysplaysia from 10 years of UC: ML’s Blog Surgery Soon
• Brevin has documented his recent surgery with these 2 active posts:  So Long Colon and the follow up with 1 month later.
• Natalie’s story of UC to Jpouch living in the UK: Natalie’s Story

This month jpouch.net has had readers visit from 84 Countries! Welcome readers from Slovenia, Chile, Uganda, Kuwait, Iran, Bahamas, Taiwan, Germany, India, Canada, USA, UK, Ireland, Netherlands, Israel, Mexico, Hong Kong, Italy and more! Please reply by “Add a Comment” and let us know what country or state  you are from and why you are visiting jpouch.net!

For Elise:

I had my post-op appointment Friday over at UCSF. My surgeon saw me as I came in through the hallway and said hi, so my natural reaction was to impress her with an impromptu Irish jig. My reasoning at the time was to show her I’m perfectly healthy (note my joyous footwork!) and am so totally ready for the take-down surgery. I think at this point I just embarrass her in hallways.

Once in the actual appointment, it went pretty fast. To be honest, the only complications I currently have are not related to the J-Pouch at all. The two biggest issues I have right now are my irritated skin (I have super sensitive skin that loves to flare up when I’m within a thousand yards of anything that remotely resembles a seasonal allergy) and one lapro scar that isn’t fully healed. The doc can’t do anything about my skin of course, but she did look at my lapro scar and isn’t too concerned. The wound just needs to heal up, since it seems that it pulled open a little, unlike the other ones. The skin just needs to close up. I currently cover it with a saline-soaked gauze thing, but the doc recommends I use a vitamin A and D topical on it. Just as she said that, she went “Oh wait here’s something better! Try honey!” Apparently you take honey and mix in sugar until it’s the consistency of a paste. Cover the wound in that, cover with gauze, and let it heal. I then added “Sweet! I can then finish off the left-overs!”, at which point we both laughed and high-fived each other. Ok, we didn’t high-five, but she did look at me weird when I mentioned I could eat the left-overs. I just hope I don’t attract bees and … and bears. Or even worse, bees the size of bears.

She then, how can I put this, used her finger to see how my J-Pouch was feeling… from within. As I lay there on my side, wondering why I didn’t have a rape-whistle handy, she said I’m healing up well and seem to be on track for takedown. Not too shabby, methinks. The first week in July I’ll go in for an x-ray and they’ll verify if everything is where it should be, progress-wise. The take-down will then be scheduled the week afterwards, so the rough plan right now is I’m going back for round two in the second week of July!

So yeah, a pretty successful post-op, except for the part where I forgot to ask about my diet. When can I eat sausage again?!
Until then, my stoma and I will continue to solve mysteries each week. This previous week’s adventure is below:

On a side note, a special shout out to Elise, who is about to escape the hospital.

Hey Readers,

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.

JoyceS. No Colon Tattoo

We know you are headed into surgery Elise, and we wanted to wish you a safe surgery and a speedy recovery! You’ve been such a wonderful friend on jpouch.net, and now you’ll soon be giving advice to others headed into surgery.

Hello all I am sending out a post giving an update on Ricardo’s post recovery and life living with the Jpouch 3 months later.  Things are going okay let’s say not good but okay which is better than bad, however after living with the jpouch for 3 months Ricardo has officially gone back to work, is taking 1 immodium in the morning and at night, is having some issues with going to the bathroom so much, some leakage during sleep a couple of times, butt burn/itch often, not quite following a strict diet, and is feeling honestly down more often than usual because he is hoping what he is feeling and the issues he encounters so much won’t be forever.  Any tips on any of these issues would be good.  I tend to do the research for Ricardo and give him the feedback because he just is not the blogger nor does he take the time to sit down and read!!  The relationship between us is frustrating at times because I try to help him as much as possible and try to give him advice but I am so busy with our children and I am not sure what is right from wrong when it comes to eating, and taking anything that will help with going to the bathroom so much, and with the butt burn and itch Ricardo has tried different types of creams from anti-itch, tucks pads, wipes to clean himself, etc.. I am not sure what else will help with that problem so when I am out of answers and he is busy with work and trying to get back to routine he is depressed at times and frustrated at how he feels and what he is going through.  I think he feels like he is 30 years old and too young to be going through this and doesn’t want to deal with bugging the nurses or Dr.’s to find out what to do.  His eating habits-there is none, he just eats whatever he is hungry for, sometimes we have to eat out often due to running around and there have been times when whatever he has ate it has gone right thru him, and other times certain food causes him to go more often than others. Read the rest of this entry »

Since I got home from the hospital, my stoma has been somewhat retracted. I have a loop ileostomy now, so I have two pieces of my intestine forming my stoma instead of one. The working part retracted quite a bit, but went to the point of near disappearance a couple of days ago. Because the stoma was flush with the skin and my skin was sort of concave around the stoma, the output started to continually break through the flange (and by continually, I mean it broke twice at work and a total of 8 times in 24 hours). It was an incredibly frustrating and painful day (my skin is a disaster). I used ever flange I had, and had to go to the medical supply store at 8am in desperation to find out what to do. Thankfully, a woman there called Coloplast (I usually wear their products) and got some advice on which products would work.

I thought it might be useful for anyone who has this happen in the future to know that the basic idea of what to do is to use a convex flange and a belt to help keep it in place. It’s working for me now and the stoma is starting to come back out again, it seems. Also, a retracted stoma is not dangerous or any type of emergency. I was pretty panicked when it first happened since I’d never even heard of it happening but my surgeon wasn’t concerned at all. He did arrange for me to meet with a stoma nurse but he didn’t bother changing the appointment that I had already had for week later, which I actually found reassuring (especially since my first concern was that it was going to completely disappear back inside my body somehow!).

Merry Lynn with son on his first birthday.

We wanted to introduce you to  Merry Lynn, she has been living with colitis for 10 years, for 3 years she has been in remission, and just learned she has high grade dysplasia. Her dysplasia means she will be having a colectomy to remove the risk of colon cancer. Her story is being shared on her blog and provides an important perspective into having surgery because of cancer risk not because of living with UC without remission.

Below is an email Merry Lynn sent to us introducing her story:

Hello my name is Merry Lynn Guy and on my blog I just list my name as ML (it’s what most people call me) . I was recently told that I need to have surgery due to the high grade dysplasia that is now presenting after 10++ years of having colitis. http://road2singledigitjeans.blogspot.com/ was originally created when I was attempting to be in a bloggy world weight loss group but then the group fizzeled so I had the blog name and title so now it is a blog about the medical path I am about to travel. I would be happy to be on your blog roll. I enjoyed reading Natalie’s Storyand have learned so much about what I am about to live through from your site. THANK YOU for creating it.

I have met with two different surgeons thus far and the verdict is the same.
The toughest part of my journey thus far is coming to terms with this verdict because I am a colitis patient that has been in full blown remission for just over three years. I have been living life to the fullest and now after my colonoscopy on 6/4/09 and some pathology confirmations I am heading towards surgery NOT because my disease is out of control but due to length of time having it and its now path to cancer.

I hope you will stop by and place me on your blog roll. I have yet to find a UC patient blog or site that talks about having to have surgery because of the same or similar presentation as I. So maybe my blog will be helpful to another.

ML

Please visit Merry Lynn’s Blog and give her the wonderful support that jpouch.net readers/bloggers can give!

So, first off, I’m am really too white and too dorky to be throwing around phrases like, “Keepin’ it real.”  Just wanted to acknowledge that!  I am thrilled to have recently earned a position at a prestigious law firm in downtown Portland.  I am currently working as a paralegal and am super-swamped with work already!  I notice a trend when I’m working though-really, it’s a very personal thing and something that I think is common to a lot of IBD-ers/J-pouchers.  We tend to be, based on my experiences, very smart, good-looking (duh), and type A personalities.  Ironically, I can be very anal retentive, although I try so hard not to be.  After the Crohn’s diagnosis I embarked upon a major personality overhaul.  Well, I kept the sweet, adorable, witty parts, but tried to work on the neurotic, perfectionist ones.  So the bad thing is, I’m one of those people who thrives on stress.  I think it’s good for my brain and bad for my guts.  I can physically feel my body tensing up and I just feel like I’m constricting.  I am at least aware of this and do things like yoga, prayer, and simple acts of stopping to take deep breaths and remind myself to “keep things in perspective” and chill. Read the rest of this entry »