Will have a colectomy soon for unresposive ulcerative colitis

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PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 5/25/2009 9:37 AM (GMT -6)   
Hi , I moved from the UC forum to this one in prevision of my surgery. I will see my surgeon tomorrow and know more but I hve some questions for the ppl living with an ileostomy.
 
1-Is there food you can't eat, what is your diet like?
 
2-For girls, what kind of clothes do you wear? I think my jeans and t shirts would be too tight and squeeze the bag too much... do you have tricks to share?
 
3-Is there a way to know before having the colectomy if I will be a cadidate for the J pouch?
 
4-Should I expect complications or this operation is habitually well tolerated??
 
Thanks a lot in advance
 
 
Diagnosed with severe pancolitis 03/09
Prednisone 35 mg, Imuran 100mg, 2nd Remicade infusion.
Mulitivitamin, calcium supplements, probiotics
Seroquel 12.5mg, Paxil 10 mg  (for anxiety, since 2003)
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 5/25/2009 10:20 AM (GMT -6)   

 

1.  I have a jpouch and there is no food I cannot eat. 

2.  I wore my regular clothes with my temp ostomy.  Slacks and blouses but loose fitting as I only had the ostomy for 8 weeks and the ab area was still tender from sugery.

3.  The only ppl turned away from a jpouch would be those dx w/Crohn's.

4.  All surgeries have risks and potential complications.  There's no way to know in advance what your recovery will be like. Be sure to ask your surgeon this question.

 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/25/2009 10:43 AM (GMT -6)   
1. you can eat pretty much anything, you have to be on a low residue diet for the first 6 weeks then introduce foods slowly. But i eat everything except nuts and popcorn now. Although alot of people eat those things also.

2. It does seem as if jeans should squeeze the bag but they wont,you can wear tight clothes, you can wear anything. I tape the top of my bag to my stomach, that way it doesnt fall over the top of my pants, and then i tuck the tail up into my undies and not once, in 2 years has anyone ever seen it.

3. Your surgeon will talk to you about that,but like suebear said, its usually only if you have crohns

4. there are always risks for complications and its not an easy surgery. i dont want to lie to you about that. But idont want to scare you either While its not fun, its sooooo worth it a billion times over

good luck!

PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 5/25/2009 1:20 PM (GMT -6)   
Thank you suebear and summerstorm, I hope my ileostomy will be temporary!!!! It's reassuring to know I will be able to wear jeans and t shirts :) I am scared of the operation and the complications but I suffer so much from my colitis I can't even do my laundry recently... I hope it is just a hard time to go through and that the pain killers will keep me floating for a couple of days lol And when I am feeling better I will be able to eat what I like again!! I think it's totally worth it in that case :) You give me hope!
Diagnosed with severe pancolitis 03/09
Prednisone 35 mg, Imuran 100mg, 2nd Remicade infusion.
Mulitivitamin, calcium supplements, probiotics
Seroquel 12.5mg, Paxil 10 mg  (for anxiety, since 2003)
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/25/2009 6:07 PM (GMT -6)   
Since 3 & 4 cannot be answered any better...I'll answer the others:)

1. I eat anything...including nuts and popcorn. To clarify that, I don't eat them all the time, but I don't deny myself and I chew really well when I do.

2. I wear anything and even prefer tighter jeans, then before, since they hold things in place better:) If you are really self conscious you can wear spanx to hold your pouch in place.

Good luck and keep us posted!

glaciergrl
Regular Member


Date Joined Apr 2005
Total Posts : 269
   Posted 5/25/2009 6:48 PM (GMT -6)   
I have only had my ileostomy for 5 weeks and I haven't tried nuts or corn but CHEW CHEW CHEW!
 
Also, there isn't anything I haven't been able to wear. I love my jeans and tshirts as well. Some advice to you...when you go for your pre-op when they mark you for your ileostomy site...please (you will thank yourself later) wear jeans/pants that pretty much resemble your waist line of the pants you normally or like to wear. I wore a pair of jeans I didn't wear that often and my work pants don't fit that great. I have been using a hair tie and looping through the button hole to give myself a bit more room. My pants fit fine but I don't like pressure on my bag because the output gets stuck up there in the top of the bag. I don't like that!!!
 
Everyone has given great advice! Good luck!
 
Holly
25yrs old/ teacher/ Wisconsin

Diagnosed UC Pancolitis in Nov 2004
Diagnosed PSC in Oct 2006


PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 5/25/2009 11:17 PM (GMT -6)   
Thank you so much guys! Your answers and good attitude are giving me hope and strenght! I will wear my everyday jeans and t shirts when they do the markings, that a very good idea! So happy I will be able to wear my usual clothes. I can't wait for my appointment this morning (yeah I woke up to poop blood again.. :S so exhausted). I have my list of questions for the surgeon and my father is coming with me.

Another question: How was it like, psychologically, learning to live with a bag on your belly? Did you have a hard time accepting it at first?
Diagnosed with severe pancolitis 03/09
Prednisone 35 mg, Imuran 100mg, 2nd Remicade infusion.
Mulitivitamin, calcium supplements, probiotics
Seroquel 12.5mg, Paxil 10 mg  (for anxiety, since 2003)
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/26/2009 10:51 AM (GMT -6)   
when i first woke up and saw it (the bag is clear and the output is neon green) i freaked! But then i passed out from morphine, lol. I did that a few times the first couple of days. But once i got home and got my regular bags on and my output changed, i was ok. the only time i had a real breakdown was the first time i took a shower by myself. And i remeber getting out of the shower, all scarred up, bag hanging there, i was down to like 122, so i looked like a wraith and i just busted into tears thinking OMG i am a horrible horrible monster. And i laid around and cried a while (my son lived with my grandma so i was havign a hard time anyway) then i got myself together and realize i was being stupid that things were much better now. Got up and got something to eat and went on abotu my way.
Since then, i occasionally have times when i get annoyed with it, or a little paranoid, but most of the time i am fine.
Since i was so sick for so long, it is something that made my life better and so its easy to see it as a good thing
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