J-pouch Life » colectomy http://www.jpouch.net Stories: Ostomy, Ileostomy, Jpouch, Colitis, Crohn's, Surgery and Support Fri, 30 Dec 2011 05:31:30 +0000 en hourly 1 http://wordpress.org/?v=3.3 Update http://www.jpouch.net/2009/12/21/update-2/ http://www.jpouch.net/2009/12/21/update-2/#comments Mon, 21 Dec 2009 21:43:58 +0000 Grant http://www.jpouch.net/2009/12/21/update-2/ DSCN0680Hey thought I would post an update on how everything is going so far, it has been almost three months since my total colectomy and I am doing great. As for now as I am waiting to return to college in mid January, I am working out at the YMCA 3-4 days a week and just preparing for school again. My life really hasn’t changed that much since the surgery, other than I feel a lot better, I am going out with friends and don’t have any problem wearing my clothes with my bag. I still find it a bit weird going out and meeting new people because everywhere I go people seem to know about what I went through and want to see my bag and my story. And I feel like some people don’t really understand it, like they look at me differently and that it is gross to have the ileostomy. But I guess anyone who really has half of a brain understands that it was a necessary procedure and my life is better now since the surgery. As for returning to college I don’t think it will be that difficult with my bag considering how good I am doing with it. I am majoring in Biochemistry at University of Minnesota-Duluth, I was enrolled for the first week this Fall 2009 semester but became so ill that I couldn’t attend class any more and I had to withdraw and have the total colectomy surgery, since the surgery in the beginning of Oct. I have just been recovering at home. I am able to have the takedown procedure as soon as Jan. but I think if I decide to have it then I would really get out of the groove of school. So I think it is best for me to go back to college in Jan. 2010 and as soon as the semester ends in late May, I will have the take down surgery in June. I will have the summer to recover and get used to the j-pouch which I think will be good since at first I have heard the j-pouch can be different but with time it stretches and my body will get used to it. It really was a difficult decision to withdraw from school and miss this whole semester but I know it actually would have not been possible for me to continue school with the way I was feeling, you can’t function at your highest caliber without your health. It is really crazy to see some how so many people take there health for granted, they don’t realize how lucky they are until something bad happens. Even though I missed the semester and the credits for my major, since the surgery I won’t have to worry about the colitis, I can totally concentrate on school and take summer courses to catch up on my missed semester. Which is not a big deal at all, I am pretty sure I remember hearing that most college students don’t finish they undergraduate degree in four years, so I won’t sweat it. It is just nice to have my health back, and I couldn’t have done it without my family and my surgeon.

http://grantsucstory.blogspot.com/

Post Total Colectomy
Post Total Colectomy

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]]> http://www.jpouch.net/2009/12/21/update-2/feed/ 6 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 ERrrrr… http://www.jpouch.net/2009/02/07/errrrr/ http://www.jpouch.net/2009/02/07/errrrr/#comments Sat, 07 Feb 2009 21:35:57 +0000 Lizz http://www.jpouch.net/?p=1484 Well, last night was one of the few times I’ve been in the ER for a NON IBD/pouch-related dilemma. I have had migraines since the 7th grade.  They have since increased in intensity and frequency.  IBD came in handy last night, as did having no colon, because as soon as I said, “Crohn’s” and “total colectomy” with “vomiting” I got back to a room in, I kid you not, 3 minutes. This is one of the few times where Crohn’s and a J-pouch felt like my ticket to the VIP section. “Thanks, guys!”migraine-barbie

I get the kind of migraines where if you had a spoon handy, you’d dig your eyeballs out just to see if that’d lessen the pressure and pain in  your head. I also get the kind of migraines where you puke your guts out. Well…what’s left of them.

Now, I consider myself to have an impressively high threshold for pain, especially for abdominal pain. I love it when they ask you to “rate” your pain on a scale of 1-10 to determine how bad off you really are. I think…”Hmmm…well, really, I had absolutely nothing better to do at 2am on a Friday night. I got this dull little head ache, and just brought the barf-bag along for shits and giggles.” They were really good though. I have to say this is one of the more efficient ER’s I’ve been in. I got some Phenergan and Imitrex via IV, passed out, and awoke feeling much better.

I’m back home sitting on my couch writing this in my probably barf-covered PJ’s, just glad to have my head out of the toilet. It was somewhat amusing to answer the question, “Do you have diarrhea?” with a “No.” That hasn’t happened for a while!

So, cheers to the J-pouch for hangin’ in there while I was pukin’ everything I put into it back up. (Sorry for confusing you on the food-routing there, buddy!) And thanks to being Crohn-ed and colon-less to getting me an express one-way ticket to the ER bed. Thanks to all the prior hospital visits for the absolute lack of anxiety about the ER, the IV, and thanks for the many prior stick-and-miss, vein rolling experiences for knowing which vein was best for the IV.  I am truly not bitter to have this all down pat. Ironically, that was not sarcasm.  I am just grateful to be able to receive medical care that will relieve my pain, and get me back to the “real” world.

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