J-pouch Life

Men's Toilet Sign at Playground - The First in a series of toilet signs around the world. Bangkok, Thailand.

Okay, okay…so at my 9 month mark living with my jpouch, I’m having a little set back.  The past 72 hours I have only had pure liquid BMs, I feel weak, exhausted and lightheaded. No urgency but feel I could go every 10 mins. No fever or anything, but do feel some like flu.  It has been hot here the past few days so maybe some of it is dehdryation (even though I drink tons of water and gatorade all the time).  And I’ve never dealt with any sort of dehydration before. 

I’m a little concerned if it isn’t just a short virus, it could maybe be Pouchitis, I hadn’t wanted to start any of that stuff yet.  Megan and I getting our house on the market to sell and really busy. But when is the timing ever good for a health concern?  If I don’t feel up to speed by Monday I’ll call the doctor for some advice. 

After feeling so good for so many months, it is hard to feel sorta crappy again – it just brings back a flood of familiar UC feelings.  It’s okay though, I would rather take 9 months of feeling good, and a few sick days than what I had with UC.  To be honest, I don’t want to play sick again, I like being healthy.

Photo Via: Eyalnow

If you have a second, be sure to give Brenda big support, she has gone in to have her pesky colon removed because of Ulcerative Colitis.  We just wanted to give her a warm welcome to the “NO COLON” Card holders Club.  We are sure she is in great medical hands. Doesn’t it make it easier to think of a happy medical team like the folks in the picture to the right?

Be sure to send her support, and you can visit her blog at:  http://livingwithoutuc.blogspot.com/

Photo via:  interplast

Carter.S with shirt over ileostomy bag

8-11-08

Ok, so it’s been just over 5 weeks since my takedown operation. I am doing great. I have no regrets and not one time have I thought this was the wrong decision. I returned to work last Friday – August 1st, but with a 20lbs weight restriction. I have been lifting more than that; I lift with my legs and don’t really strain my stomach muscles so I feel like it’s ok. If you’re reading this mom, sorry…I’m stubborn. I know I mentioned my issue with giving up certain foods in an earlier post, but I’m starting to figure out what foods WILL NOT work for me. One day last week, for lunch, I had some Buffalo Shakers from Arby’s; I paid for it later that evening. A few nights ago I ate a large pizza and was up several times during the night – I think it might have been the pizza sauce. I’ve been able to drink alcohol. All I’ve really had is light beer and it’s not really bothered me. I don’t think I’ll totally give up my favorite foods; but I will definitely have to cut back. Maybe eat them when I don’t have any plans later on.

I have been taking fiber and Imodium and it seems to be helping. I’ve been going to the bathroom about 6-8 times a day; sometimes more depending on what I eat.

I’ve been going out with my friends, and like I said, I returned to work. My confidence is back and I don’t spend every moment I’m away from my apartment worrying about having to run to the bathroom. I do usually have to go at least once at work, but believe me, I ‘Gift-Wrap’ that toilet seat. When I do feel the urge, it’s not sudden; I am able to hold it – sometimes an hour or more.

My overall health is great. I’m not in shape because I’ve not started to exercise, but I’ll start back in a few weeks. I have put on a lot of weight since my surgery – I was down to about 125lbs which was really low for me.

*About my ostomy wound. There was a small spot that wasn’t healing up. When I went in for a follow-up my doctor told me it was a little flesh sticking out; it was no big deal. He put something on it, which I guess, burnt it off – it didn’t hurt. About a week later it was completely healed up. I’ll post some pictures later on. Thanks for reading and thanks for your comments and questions.

The most important thing to remember is to always keep a positive attitude. I realize it can be hard at times, but if you can have a good outlook on things it will make your experience with UC/J-Pouch surgery that much easier.

Visit Carter’s webpage here:  Photos: Carter S.

I was driving along and there it was – A toilet in the middle of a street crossing.  Location in front of an elementary school.  The toilet stayed in the street for about 2 weeks until someone finally removed it.  What I thought was most amusing was that idea that someone had to unload the toilet, and rebuild the toilet in the street.  It is a convenient location for those with UC.  (Apologies on the dirty car windown and poor picture – but you get the point).

The stoma will be around the size of a quarter, although the mark is admittedly a bit smaller.

Hello,

We want you all to meet Stephanie, she has started posting on her blog page here, she is about 2 weeks out from her first surgery, and she will be documenting her experience with photo and text :  http://ucstory.wordpress.com/surgery-photos-stephanie-l/

As you can see to the right, she is “marked” and ready to go! 

© 2008 All Rights Reserved

9 months after my “takedown” surgery, here is an update on my status. My life 9 months with my jpouch now is completely normal, I don’t think about being sick. I don’t worry about what I eat (like UC days) like pizza, in my UC days I would eat pizza but I do it knowing I was going to feel awful afterward, now I can eat and I don’t worry.  Of course, I don’t eat pizza much – I do try to eat healthier than not, but I do splurge for some good junk every now and again. 

Recently there was a jpouch.org discussion thread about scholarships  asking if any scholarships were available for IBD people.  Many IBD people do have to put their life on hold at times to deal with their health, others can’t afford school after dealing with the expense of medical bills and other pursuits to regain health.  Well, paying for school is one thing I can definately understand since I’ve been in school forever working on Ph.D.  Scholarships have been really helpful for Mark and I to help me get through school.  Seriously, when he was really sick there for a while and not working consistently, there were many times when I questioned if I could stay in school.  I mean a household with 2 adults, 1 in school and 1 living with an agressive chronic disease doesn’t make for the most financially stable household all the time!   But it was literally my scholarships and fellowships that made it possible for me to stay in school while dealing with Mark’s health.  What a true gift that was given to me and my family – I guess some of my reason to continue advocacy for IBD awareness, so much support for me created a feeling of needing to give back.  Funny how that works, eh?!

Check out CCFA Scholarship information here to see if you are eligible.  Probably missed the deadlines for this year but you’ll have time to prepare for next year. 

And check out this Great Comebacks Awards USA & UK offered from ConvaTec (ostomy supply company).  Their awards seem really great, but the deadline is missed for this year, but you could prepare your application for next year.  I love what they are offering here because they want to hear your story, what a great way to celebrate survivors!

If you have any scholarship advice for others please post a comment and share with others!

Photo via: m00by

I would like to talk about my battle with hemorrhoids and subsequent skin tags – I don’t much like them, however, they are my reality and so I live with them as best I can.  First, here is some good Mayo Clinic info on them:   Hemorrhoids explained by the Mayo Clinic  I think that it is common for us colon challenged individuals to have these issues. 

I asked my surgeon about having the anal skin tabs/tabs removed, I was told that they would make my life worse if tried to remove them (I’m still somewhat unclear why this was the advice I was given, but it has worked out well for me in the long run). This was good advice because since I’ve had my jpouch they are a lot less irritating than when I had UC.  The skin tags/tabs are just left over skin now from untreated previous hemorrhoids - which I’ve offered to show Megan the beauty of them, but she always declines my offer - Although my hemorrhoid and skin tag issues are not so bad these days I do still deal with the pain of them when I experience more active butt burn.  My main tips for caring for my hemorrhoids and  skin tabs/tags are:

1.  Keep the area clean and try to not upset the skin tags into an inflammation state.

2.  I flip between products but I am a big believer for mild relief in Tucks Pads, these do soothe the area when upset. 

3.  My preferred creams are 3:  Nupercanal, Tucks Cream, Cortaid Cream.  These just help with removing some of the burning and itching.  I seem to flip back and forth between these three. 

Well, I figure if you are reading this blog, you are likely familiar with the ups and downs of hemorrhoids and such – and if you aren’t familiar with hemi’s then why are you reading?!  No, just kidding, you’re welcome to read even if you don’t have strange bubbles of anal nerve endings inflamed making you feel like you have a golf ball on fire in between your butt cheeks.

 Please Welcome our New Guest Blogger Rob B.

Rob Headed into Pre-Surgery Testing

Rob is headed in for surgery on Aug 8, 2008 for removal of jpouch and to gain a permanent ileostomy. His story is different than Mark & Carter’s because he had colon cancer many years ago, and it damaged his rectum area, leaving him with the option of a perm ileo to simply get his life back.  Below is an excerpt from Rob, and we’ll be adding photos and text of his journey as it happens.   Be sure to send him your support, he has a long journey of physical and emotional healing ahead!

Rob’s Story Explained:  “My Colon was damaged due to radiation I received 17 years ago but I’ve been on a medication called lomotil.  It controls B/M’s but unfortunately not all the time. I have had my shear of accidents so I can relate to Marks story when he was up on the lift and had an accident.  You see my problem is also with my Sphincter (the anal muscle that holds everything up and in). Because of the cancer they had to removed a large portion so I have no control of any B/M’s. I can’t even feel when I’m having one. I’ve been surviving because of the medication. It hasn’t been pleasant. I need my life back so I have to go for the permanent ostomy.”

Keep visiting we’ll keep updating with text and photos on Rob’s page:  Surgery Photos: Rob B’s Story