J-pouch Life » Crohn’s http://www.jpouch.net Stories: Ostomy, Ileostomy, Jpouch, Colitis, Crohn's, Surgery and Support Wed, 08 Sep 2010 04:21:54 +0000 en hourly 1 http://wordpress.org/?v=3.0.1 Crohn’s…Again? http://www.jpouch.net/2010/08/05/crohnsagain/ http://www.jpouch.net/2010/08/05/crohnsagain/#comments Thu, 05 Aug 2010 23:21:56 +0000 Lizz http://www.jpouch.net/?p=2505 Hi all! So for those of you who have followed my story for the past few months you know there have been many ups and downs.  New theories emerged, the one most perplexing and possibly exciting one being that perhaps I didn’t actually have Crohn’s disease-maybe just a horrible case of pouchitis due to poor pouch function.  Several tests later, and another Prometheus test result just confirmed Crohn’s.  I heard this back in 2006 for the first time, after several post-surgical complications and made my peace with it.  So, to be told that I “might” not have it was sort of annoying, sort of exciting, but I guess in reality, I knew that my luck was just not that good!  So back to Crohn’s disease and back to my perspective that it really doesn’t matter what I have as long as it can be treated.  Treatment, however, brings a whole new scope of problems.  Turns out now that since this is (once again) permanent, and not yet curable, that I have some decisions to make.  I am on tons of meds-weekly Humira shots being one of them, and lots of antibiotics.  I take Xifaxan and am currently taking Augmentin for a sinus infection.  Gosh, it makes me feel SO much better.  Unfortunately, I can’t pump myself THIS full of antibiotics on a regular occasion, so I have some thinking to do…I’ve been going to physical therapy to try to get my pelvic floor muscles to relax so I can poo properly.  If this doesn’t work and things don’t improve (I’ve had mild to moderate inflammation despite being on all these drugs), it’s time to say ta ta to the pouch and HELLOOOO to an ileostomy again.  Don’t mind to go this route if it would help, but my surgeon suggested basically amputating the pouch to do an end ileo and I’m not thrilled at the prospect of losing what little guts I have left.  As you also are possibly aware, I was fired from my job because I was absent a lot at the first of the year due to my ongoing health issues.  Thankfully, I am getting unemployment benefits right now and have my health coverage through COBRA, but neither of those will last forever, so I need a plan.  My mom keeps suggesting disability.  Part of me agrees with her-most of the time I am too tired to do much of anything, but then I think, “but maybe I can get a work from home job!”  I’ve been applying for stuff, but I really need something flexible, and not many of those exist in this economy. Le sigh. What to do?  I don’t want to feel like I am “giving up” on a “normal” life, and it’s just not my style to not work for my earnings, but I guess I need to be realistic.  I just feel defeated when I consider that option. Should I  just bite the bullet and apply for disability?  Most importantly, I have to have health insurance and I don’t think I can find a full-time job that will provide that and allow me the sick leave which I will likely need.What would you do?

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]]> http://www.jpouch.net/2010/08/05/crohnsagain/feed/ 6 Plaid Pantry Denies Bathroom to Crohn’s Customer http://www.jpouch.net/2009/09/16/plaid-pantry-crohns-boycott/ http://www.jpouch.net/2009/09/16/plaid-pantry-crohns-boycott/#comments Thu, 17 Sep 2009 04:35:10 +0000 Eric http://www.jpouch.net/?p=2130 Boycott the Plaid PantryTime to boycott the Plaid Pantry, whatever that is. (Is that like a 7-11?). Reading through posts on the Consumerist weblog, trying to decide if I should subscribe to its RSS feed, I came across this article about a fellow IBD sufferer who was denied access to a bathroom. As a result, she pooped her pants.

Granted, it is an “employee only” bathroom, but hey, what is the world coming to when someone poops their pants because someone else is worried about… er… what? What, exactly happens if you break the rules and let a customer into the bathroom? You get fired? They steal toilet paper? Fine.

I would gladly get fired for breaking the rules if it were in the name of humanity, decency, or any of those other words that end in a ‘y’ and connote positivity.

Here’s hoping the next clerk is a nice one.

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]]> http://www.jpouch.net/2009/09/16/plaid-pantry-crohns-boycott/feed/ 9 UC v. Crohn’s Questions http://www.jpouch.net/2009/04/18/uc-v-crohns-questions/ http://www.jpouch.net/2009/04/18/uc-v-crohns-questions/#comments Sat, 18 Apr 2009 07:14:02 +0000 Lizz http://www.jpouch.net/2009/04/18/uc-v-crohns-questions/ Okay, seeing as I am the resident Crohn’s+Jpouch expert, I feel required to “chime in” in response to the many-questioned thread in response to Brevin’s very informative (always hilarious) recent post.  Many responders seemed concerned about the pre-surgery tests that would rule-out or possibly diagnose Crohn’s disease.  The Prometheus Test, being one of interest.  The tests for markers for Crohn’s disease (CD) are never 100%.  For that matter, NO medical test is ever 100% accurate.  I had test after test to be sure I didn’t actually have Crohn’s, both before the surgery and after the step 1 colectomy. The pathology of my colon was “textbook UC” as was my history. Then I had MORE CD tests after I started developing problems like “pouchitis” that wouldn’t clear with antibiotics and strictures that required more surgery to repair. The tests were always negative for CD, which was a huge relief to me, except for the fact that they turned out to not mean much. It wasn’t until they saw that the inflammation/ulcerations were above my Jpouch, still untouched by antibiotics, that they realized it was CD all along.

These diseases are very similar and very complex, and even the experts will admit that they do not know much about them. This is not meant to be scary, just to clarify the great similarity between them and the difficulty in distinguishing Crohn’s from UC sometimes. Whether you have UC or CD ( and this is speaking from my experience only), getting the diseased colon out of you will make you feel SO much better. Surgery is generally avoided in CD b/c it can cause what probably happened to me, which is for the disease to “activate” in areas where it was previously dormant, ie: your small intestine, now Jpouch.

Now, a word of advice:   You cannot go into these surgeries totally paranoid about what *might* happen. I never thought I’d end up with CD.  The complications and statistics of such were well-explained to me prior to deciding to have the surgery.  Crohn’s wasn’t even a blip on my radar screen.  My surgeon said, “There’s a 5% chance you could end up having Crohn’s,” and I remember in that moment, brushing it off.  And here I am in the 5%, and you know, I’m  100% better than before I had the surgery.

ALSO, just b/c you have a Jpouch and are later diagnosed with CD does NOT mean you will lose your pouch.  I’m proof enough of that:)  This possibility of pouch loss terrified me because I did not like the ostomy.  I banked so much on having the J-pouch and on finally having a semi-normal young life because of it.  Maybe eventually I will lose my pouch, maybe someone one without CD will lose theirs for another reason, but is it still worth the risk? For me it was, absolutely. And…so far so good.  I’m on my 4th year, and still goin’ strong.

Also a note about Humira. I realize the same drugs don’t work for everyone, but Humira has been a wonder-drug for me, so I don’t want to frighten people away from something that may help them in the future.  There are some scary side-effects, it’s true.  They do affect some people, but again, for me, it was well worth the risk.  It, along with other newer drugs, have had me in the remission I was never in before surgery, and this is why I will probably be able to keep my pouch for many years to come.

Brevin, yes mouth issues are more common with CD. I pretty much always have a canker sore on my throat, and in retrospect, probably had a lot of other CD markers, but these diseases are SO similar, that you really can’t bet your future on your mouth issues. Many docs always attributed my canker sore to UC and never attributed it to CD.
So, given MY scenario, if I had Crohn’s all along, (and probably did) and had the Jpouch anyway, I’d say I’m doing pretty darn well for a CD+Jpouch case. It is far from perfect, but I am so much better, mentally and physically, than I was before the surgery, I feel almost like a different person. Mostly, I just feel capable of having and living my life now. So just be of the mindset that IF something goes wrong after your surgeries, that you and your world will not fall apart; rather that you will make informed decisions about how to best deal with it. Living your life with “what ifs” is no way to live, and it is unfortunate that these diseases kind of program us to think that way. Surgery is always scary. It’s a huge life decision, but it’s one of the best I’ve ever made.

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]]> http://www.jpouch.net/2009/04/18/uc-v-crohns-questions/feed/ 4 Free Book on Crohn’s http://www.jpouch.net/2008/06/21/free-book-on-crohns/ http://www.jpouch.net/2008/06/21/free-book-on-crohns/#comments Sat, 21 Jun 2008 07:01:03 +0000 Megan http://ucstory.wordpress.com/?p=165 If you’ve recently been diagnoses with CD, you may want to check out this offer for a Free Book on Crohn’s. We haven’t read this, but as we know, people love free stuff!

Photo by: Lifespan.org

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