(ConsideringaBag was my old name) SURGERY DATE SCHEDULED

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ConsideringABag
Regular Member


Date Joined Aug 2007
Total Posts : 65
   Posted 3/27/2008 6:06 PM (GMT -6)   
Hi everyone,

Well, I have finally decided to schedule a date for surgery--May 6th. I used to post under "ConsideringaBag," but I thought it best to change my name as that is no longer the case!!

This last year has been a hard one. My Crohn's just seems to creep up on me, slowly getting worse so that by the time that I am REALLY sick, I am so used to it that it is hard to realize what healthy even feels like...does that make sense?

I am a teacher, and I am so sick of running to the bathroom between classes and having horrible stomach pain while I am teaching. It takes all the energy I have to make it through a day lately, and my poor fiance!--whenever he wants to go out and do something fun I am always too pooped from work... :( I am so boring!!

He is supportive of the surgery, but of course I am afraid he won't be able to deal with it--even though he has told me over and over that he can. :) He is very sweet and good to me. I also do not want ANYONE to know, except my parents (I even considered not telling my own siblings that I am going to get a bag--just make them think it is a resection surgery or something. This is NOT because I feel ashamed of anything--it is because I could not stand it if people began treating me differently (I can see people kind of babying me, thinking I am delicate, or just feeling awkward).

I want to adjust before anyone else has any idea about it...am I just really weird??

I feel sad at time, but the main thing I feel is RELIEF that I finally scheduled a date so that getting this done is not hanging over my head any more...!

Anyway, I hope you all will be open to the many questions I KNOW I will have... :-) :-)

--Erin :)

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 3/27/2008 6:18 PM (GMT -6)   
ur not weird at all, u dont have to tell n e one until ur ready to, and i didnt believe it until i went back to work, but chances are no one will even notice...nobody at my job knows...they just keep telling me how much healthier i look. i know that feeling ur talking about, about being pooped...im a chronie too...oldly enough, im supposed to be teaching, but i backed out and took a desk job due to my illness...im only now considering gong back...your surgery will go wonderfully, u'll be feeling much better very soon! we'll b here if u have n e questions
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


donut
Regular Member


Date Joined Jan 2008
Total Posts : 54
   Posted 3/27/2008 9:09 PM (GMT -6)   
Hmmm...why do so many of us teachers have colon issues?? Ha Ha! The other teacher that i used to team-teach with has been going through the ostomy thing at the same time I was! It is so hard to teach when you have stomach cramps! I went to my surgeon today, four weeks since my reversal and all is well. It's back to school on Monday..yippee!!Although I didn't go back to school with the bag, I did go in quite a few times to visit.EVERYONE knew what I was going through and I was amazed at how many people know others who have gone through it. Some have relatives with bags and it really opened up some good conversations. People were so supportive and had so many questions about the whole bag-thing. It helps to keep a sense of humor, even when it doesn't feel so funny. As I said to my surgeon today.. have spent the whole winter obsessing over my bowel movements..I am ready to move on!

StomaGrrrl
Regular Member


Date Joined Oct 2007
Total Posts : 55
   Posted 3/27/2008 9:22 PM (GMT -6)   
Yaaay for moving on!

Happy for you donut. Congratulations and i wish you the very best. It's impossible to love life when you're sick. It's great not to be sick. Great. Great. Great.
diagnosed Endometriosis 2001
first surgery 2003 - lesions found in rectum
7 major procedures in 2007 including 10-hour endometriosis dissection, ileostomy, RV fistula closure, ilestomy takedown, colostomy
No longer taking testosterone, codeine, vicodin, xanax, or receiving acupuncture 2-3 times a week
Loving life and re-entering "the world"
still taking the occasional valium :)
Back at work and enjoying "perspective" on life...


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/29/2008 11:13 AM (GMT -6)   
Erin,
I'm glad you have a surgery date scheduled. I thought my family and friends would treat me differently after surgery, but they didn't. They were mostly glad that I wasn't sick anymore. Since nobody can tell that you have an ostomy under your clothes, people don't know unless you tell them. I've never told my young nieces and nephews, and we hang out in bathing suits together at the beach! They don't have a clue that I go to the bathroom differently than they do. Please ask us any questions you may have, and we'll do our best to help answer them.
Take care,
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/29/2008 11:51 AM (GMT -6)   
I'm right there with you, Erin- my surgery date is May 7th, one day after yours. Here's hoping the both of us have complication-free, quick, relatively pain-free experiences!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 3/29/2008 3:53 PM (GMT -6)   

Thanks for the responses and support, everyone. :)  This is the new name I am posting under (my fiance's nickname for me...cheesy but cute when he says it! )

Eva Lou--so you are the day after me..!  I will pray that we both have smooth recoveries with as little pain as possible! :-)

Stomagrrl--"yay for moving on" is right.  I have a feeling that after I start feeling better, I wil be kicking myself in the butt thinking "whay didn't I do this sooner??"  :)

Cecilia, I hope you have continued to get better from your blockage that you had--I think that my family too will be shocked to see me healthy all the time!

Donut--I did not know you were a teacher also!  I swear it is such a highly stressful job (but can be so rewarding at times)...I also just recently became our department head (I was flattered that they asked me, because I am the youngest teacher in our department!) so that has been a whole new bunch of repsonsibilities. You are so right when you said that it is hard to teach when you have stomach pains--it is the worst!  I am so happy for you that everyone at work was so supportive-you sound like you have some great colleagues :).  I have not yet told anyone that I am going to be out for the last 6 weeks of school...

Praying (another fellow teacher :)--  thanks for sharing your positive experiences!  Do you think you will ever get back into the classroom?  I am glad you are looking and feeling so much better!  that is what I need as well!

Well, this weekend is a boring one for me...on Friday when I was at school I noticed that i had a big red lump on my shin (not like a bug bite, more like a bump from hitting your leg on something.)  It kept getting bigger and redder, and by the end of the day, I went straight to the doctor's...turns out I have cellulitis, and the dr. forbade me from walking at all, except going to the bathroom--for the next 3 days, and put me on antibiotics.  He is sure that I got this, and it became so bad because I am on Remicade which makes your immune system stink...so another thing I have to look forward to is not getting random infections nearly as much as I do now!!

Erin


jazzygirl
New Member


Date Joined Nov 2007
Total Posts : 3
   Posted 4/1/2008 9:51 PM (GMT -6)   
Hello,

My surgery date is the same as yours, May 6th, what is this national colon surgery day???? Best of luck to you with your surgery. I'm a nervous wreck confused

gilgirl
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/3/2008 5:35 PM (GMT -6)   
Hi Ive just joined and reading these messages having finished working on an assingment for hours, I was a teacher until my surgery, 3 ops later Im finally back to what I feel is me, hope people having their ops are all taking care and those who have already had ops you take cae too.

Liz x

LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 4/4/2008 3:18 PM (GMT -6)   

Jazzygirl,

I guess spring is the season for ileostomies... :)  It does seem like a good time to have surgery, and I hope yours goes well, too!!

I also know i will be a nervous wreck as the date approaches...when I start to think about what they are going to be cutting/etc., I get really nervous about it all!  You will have to post after surgery and let everyone know how you are doing...I know I will likely be posting a lot after surgery!!

Gilgirl, do you have an ileostomy?  If so, for how long?  That is funny that you are also a teacher..there are a number of people on here who are, too...
 
-Erin

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 4/5/2008 3:25 AM (GMT -6)   
Erin and Jazzy,

Anytime you think about what they'll be removing, try including the word 'diseased' in front of colon, and it'll help with getting used to the idea of what you'll really be losing. When you think of it, this surgery is pure genius! It still amazes me that I'm disease-free and living a completely healthy life without a large intestine. Who knew that it was an optional organ, like a spleen or a gall bladder?? It's genius, I say!

Cecilia

P.S. - I used to be a teacher, too!
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 4/5/2008 12:10 PM (GMT -6)   

Cecilia,

Haha-Thanks for putting things in perspective :-) .  I actually said "I am having my diseased colon removed" out loud, and almost laughed because when you say it like that, it makes sense that I should Want it to be gone, not want to hang on to it...! 

So, thanks for that simple tip, it will be my new mantra for the coming weeks!

Also, importantly, I know you are one of the people that had your colon removed due to Crohn's (like I am--though I am also having my rectum and anus--the whole she-bang--removed as well), and I was wondering, did your GI and/or surgeon recommend that you go off you meds after surgery?

I am scared they will still want me to continue immuran/Remicade to prevent Crohn's from invading my small intestine in the future (up to this point, I have never had Crohn's in my small intestine..)

Also, did they give you a % chance for appearance of Crohn's in the small intestine in the furure??  THAT is my biggest fear--after going through such a dramatic surgery, I want to be assured that I have Really HIGH chances of not having to deal with Crohn's at all for a good long while (like, 30 years!)

Thanks for any help you can give.  :) :)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 4/5/2008 8:22 PM (GMT -6)   

LittleE,

I had CD in my rectum, colon and part of my small intestine.  Once I had the whole 'she-bang' removed and had my perm. ileostomy done, I have never even taken 1 Prednisone pill -- NOTHING.   I must say that it did take me a while after my surgery to wean off of the dose that I was on, but after I got off of it, no more steroids.   I have only taken 2 rounds of Flagyl since my surgery back in 1984, for a bacterial bug in my intestine (we think).  And the CD has stayed in remission for me.  

I had the very same concerns that you do about the CD reoccurring in the rest of my small intestine.  My surgeon told me after I had my surgery that if I went 10 years w/o the CD coming out of remission that I most likely had it "beat".  I don't know what the % is, but that is what my surgeon at Cleveland Clinic told me back in 1984.  Maybe someone else here on the forum can give us some more up-to-date facts.   Yeah, I still have lab work done routinely to check various levels and of course, my GI here in Indiana always checks my SED rate and WBC along with the minerals, etc.   I know there are no guarantees but I always have thought very positively about the CD staying in remission.

Good questions.

 

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 4/7/2008 6:22 PM (GMT -6)   
Peggy,
 
Thanks for sharing your experiences!  I hope that I am a case like you..!  Hmmm...so after 10 years in the clear, you have likely beat it...that would be so nice!
 
I am meeting with my surgeon for my consult next Thursday, so I can ask him what the stats are. :)  That is a good idea that you still get lab work to keep tabs on things...though knowing me I would probably not keep up with my blood work if I was feeling well (the hospitals where I live are always so busy that it can take 1-2 hours just to get some blood drawn--not exagerrating!)
 
I, too, am thinking positively about my Crohn's staying in remission...I just have a very good, definite feeling that it will.  :-) :-)
 
Erin

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 4/7/2008 8:01 PM (GMT -6)   

Erin,

I'm glad that little tip helped. :-)

I had my colon and rectum removed, and like you, never had Crohn's in my small intestine. My GI doctor told me that there is a very good chance that it will never show up there and did not think it was necessary for me to be on any medication, since there is no active disease to treat. So, I've been off all medication since my proctocolectomy a year and a half ago. I hope that brings some reassurance to you.

Take care,

Cecilia


Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 4/7/2008 8:55 PM (GMT -6)   
Just wanted to say, my surgery is also on May 6th. Trying to get ready, it is a big step.
78Silver
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
UC is pretty darn crappy, but if you can't laugh at yourself, you'll cry. 
I'd much rather laugh.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/8/2008 5:53 AM (GMT -6)   

LittleE

I had a proctocolectomy with end ileo (2/8/08) for a "diseased colon/rectum" due to my Crohn's.  I did have problems with my small intestine when first diagnosed, but in the last 7-8 years it was my colon/rectum that gave me problems.  My surgeon (also at the Cleveland Clinic) said that my chances of having future problems with my small intestine were slim and would be even better after the 10 year mark.

My GI also took me off of all drugs before surgery and I will only have to go back on them if I start to have small intestine problems...as far as blood work goes, I don't do any specifically for my Crohn's, but my family doctor does them anyway and if anything goes off, I'll get it checked out.

I am living my life now, and don't necessarily worry about "what if".  It is a great relief to not have to worry about what my body will do to me today, or where a bathroom is!! 

OHIO76

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