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Regular Member

Date Joined May 2008
Total Posts : 159
   Posted 6/17/2008 6:07 PM (GMT -6)   
surgery is june 20th and i want to know if anyone out there has great stories or how wonderful the surgery worked for them. no side effect of if they do have side effect i still want to know that but the closer i am getting the more i want to hear how good this surgery is for me................. have sub total colectomy . or might be total coloectomy we will see what i end up with after it happenes.  Today i start the NO eating . SO no food from tuesday and my surgery is friday. wish me luck. i have 5 kids to feed and i cant eat .

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 6/17/2008 6:27 PM (GMT -6)   
Well surgery worked great for me! Just today, i have been to the gym, went swimming, and went out to eat with my family.  I couldnt have done any of those things before my surgery.  I have made plans to go out friday night, and i am not worried that my stomach is going to keep me from going.  I have been all year without a dr appt related to my stomach!  i am saving a fortune on toilet paper, lol.  i am eating what i want when i want, although that is the reason i am going ot the gym, lol.
Any bad side effects-it's a little annoying sometimes to have the bag, like when you have to dry it off after showering or swimming, but that only takes about three minutes out of your life, versus the hours UC was takign from me.  Everyonce in a while i get the itchies, those go away fairly quickly though.  The main annoyance to me with it, is that when you get gas, it's great that it doesn't smell coming out, lol.  But only so much can come out before you have to let it out of the bag.  But again, that's only a minor thing, and after you have had the bag a while the gas will go away!
You may have seen this on here before, but i am going to tell you now, so you won't freak out.  When you wake up you will probably have on a clear bag and the stuff in there is going to be this nasty green looking stuff that is going to smell HORRIBLE!!!  Don't freak out though, once you start eating it won't be like that anymore, it won't ever smell good, no poop ever smells good, lol.  But it will smell much better and it won't be that green stuff.  Also, if you eat red things, be prepared for red output.  Those are two things noone told me that i really wish i had known!
Good luck!

Regular Member

Date Joined May 2008
Total Posts : 159
   Posted 6/17/2008 7:03 PM (GMT -6)   
oh thank you so much for that info........ i am so hopeful i wont get a bag but he said i might he just dont know yet... depends on if i am cleaned out or not. i should be with 3 days prep before the 4th day surgery. but he said i still have a chance i will end up with one in the end. so thanks for that info. it really helps to know the TRUTH and not to be suger coated. I am the type that if i know then it isnt so bad. like for example tell me before you poke me with a needle and i wont jump . that type of thing. ok i appreciate your words. and i am concerned that only one person commented on this................... so i am thinking there might not be to many sucess stories...................???

Regular Member

Date Joined Jan 2007
Total Posts : 300
   Posted 6/17/2008 9:58 PM (GMT -6)   
I am 4 mths post op and consider my surgery a success. I had my surgery on a Monday morning and my surgeon said I could go home on Wed but I elected to go home on Thursday. I have had no complications at all other than I have acquired joint pain from, I guess, the prednisone withdrawl after being on it for 1 1/2 years. I no longer worry about my stomach or feel sick anymore. Looking back, the surgery seems like it was easy and recovery was easy. I am dong j-pouch so I have 2 more surgeries to go so I have my prayers and fingers crossed that those surgeries are as uneventful and the 1st one. Oh yeah, I eat pretty much anything (no popcorn, minimal nuts and seeds and no corn - only because I have read these things are all really hard on your system so I just choose to be safe). I wish I could have been spared having colitis but between having a "bag" or dealing with colitis???? Well, for me, definatey I would choose the bag. I would have NEVER dreamed that I would be able to live with a 'bag" and like it but I do.
Pancolitis - July 2006
Surgery - Temporary ilestomy on 2.25.08 at Cleveland Clinic. Next surgery in 6 months
Medications:  Predisone - 5mg (and tapering to zero)
Supplements:  multi-vit, calcium
Reason for surgery: Steriod dependent and allergic reactions to imuran and 6mp. Elected not to try remicade.

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 6/17/2008 9:58 PM (GMT -6)   
oh i wouldn't think that at all, your post hasn't been on here for very long, and alot of the people aren't on until later at night, and aren't on everyday either. I just happened to have been on the computer earlier today or i wouldn't have seen it until now! just give it a while, you will hear more sucess stories! or look around the boards there are tons of them posted.

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 6/18/2008 2:44 AM (GMT -6)   
I am 100% satisfied with the results of my surgery. Life without disease is great!! :-)

Good luck with your surgery on Friday.

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

Veteran Member

Date Joined Mar 2008
Total Posts : 624
   Posted 6/18/2008 4:58 AM (GMT -6)   
Hi Summerstorm

Please can you tell me why you got a bag?? It seems some people have a colectomy and are bag-free - how come ?? Does it depend on the problem one has??
Previous diagnosis/surgery:
2003: Rectocele/cystocele - Pelvic floor repair surgery;
2006: Mucosal prolapse/Obstructive Defaecation Syndrome (ODS); Slow Transit Constipation - STARR surgery;
2007: Partial volvulus (cause of ODS?) - Sigmoid resection. Result: immediate worsening STC;
2008: Now contemplating colectomy as I need to take up to 30 senna tablets daily for some kind of bowel movement (albeit not 'normal' or all at once) or be in discomfort. 
Scared to have TC as told I could become incontinent - can't get my head around the fact I might require a 'bag' :(

Veteran Member

Date Joined Sep 2007
Total Posts : 687
   Posted 6/18/2008 5:34 AM (GMT -6)   

I believe each person on here measures success in their own way. Yes, I have had complications and quite a few, but I consider my surgery a success. I would not pay to go back to where I was before this surgery. I can live my life again and I feel as though I have the old me back with a few minor bumps I am working on ironing out. I had the surgery for colonic inertia....I do not have a bag....and life after a TC is much better and I have no regrets. My recovery was not easy and it was a VERY hard three months physically and emotionally, but if I had to chose between doing it all over again or living with constipation for the rest of my life i would take the COMPLICATIONS ANYDAY!


Veteran Member

Date Joined Feb 2003
Total Posts : 1251
   Posted 6/18/2008 5:37 AM (GMT -6)   
I've had my ileostomy for 32 years since I was 10 years old, due to UC, and I feel it was a total success! It was the best decision my parents ever made for me! There's no way I'd go back to my pre-surgery days. My ileostomy doesn't stop me from doing anything I want to do. I've travelled the world - USA, UK, Hong Kong, Singapore, Thailand and most of Australia (I'm an Aussie hence the reason I wasn't able to post any earlier than this) without a problem. I eat anything I want (and it shows!), even supposed 'no no' foods such as nuts, mushrooms, corn, etc, swim regularly every summer, have been rock climbing, was in the school army cadets and participated in all of their activities, etc, all without having to know where the nearest loo was all the time.

Your ostomy won't stop you from doing anything you want to do - only your mind will!

PS As Summerstorm said, you probably won't get many answers here immediately since the people who post here are from around the world and therefore, in different timezones - when you posted I was fast asleep, then I had to work all day :) Be patient and the answers will come :)

Good luck.
I have had an ileostomy for 32 years now due to UC.
Moderator of the Ostomy Forum
I'm not a complete idiot - some parts of me are missing!

Regular Member

Date Joined Jun 2007
Total Posts : 75
   Posted 6/18/2008 10:30 AM (GMT -6)   
I had my total abdominal colectomy with ileo-rectal anastomosis about 9 months ago and I consider it a success. My reason for surgery was pre-cancer in a biopsy from the right side of my colon after 28 years of colitis. I eat most things that I want and have been able to run, work out, and do the things I want to do. I was even able to go to Mexico on a 1 week volunteer mission trip to build a house 6 months after surgery and didn't get sick or anything. I'll echo what someone else said about the color of their poop. I don't have a bag but my poop was mostly green at first after the surgery and it can still be red after eating something red. The first time I had red velvet cake after surgery kind of freaked me out because I thought it was blood coming out. Then I remember that I had eaten the red velvet cake and it has a LOT of red food coloring in it.
My colitis symptoms weren't bad before the surgery but I consider myself really lucky that I had my colon removed when I did because they found very early cancer after my colon was out. I think it helps to see this surgery as the beginning of a new normal and not an instant fix. But I really am happy with the way things turned out for me.
Good luck on Friday and I wish you a speedy recovery.

54 yr old male, UC since 1978
800mg Asacol x 3 daily
500 mg Pentasa x 4 daily
Boniva(for osteoporosis)
600mg calcium + 200 iu Vit. D x 3 daily
Advicor(for cholesterol)

Sub-total colectomy with ileo-rectal anastomosis 9/5/2007

Post Edited (ucRick) : 6/18/2008 9:48:06 AM (GMT-6)

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 6/18/2008 10:45 AM (GMT -6)   
I had jpouch surgery 7 years ago for UC. I consider myself a success and despite some changes in function I am 100 times better than when I had UC and I have NEVER regretted my decision. You can read my jpouch/surgery story here, it was posted in the NY Times a couple of weeks ago:

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

Regular Member

Date Joined Aug 2007
Total Posts : 185
   Posted 6/18/2008 12:50 PM (GMT -6)   
I had all my colon removed Oct 07. They reattached my colon to my rectum b/c my pelvic floor functions were fine. The surgery was the most painful thing I've ever gone thru and I was having pain after I came home. But by January everything was healed up to the point where I was having no more pain and I was back to exercising and building my strength back.

I can eat what I want and I go to the bathroom like a 'normal' person!! I definitely consider it a success.

Good luck w/ your surgery.
Control is an illusion. The only control we have is our response to people and situations. - Kim Martin

Regular Member

Date Joined May 2008
Total Posts : 159
   Posted 6/18/2008 2:24 PM (GMT -6)   
thank you everyone for your replys............. i am wondering how much pain i will be in. but i think that is quite will hurt like crazy................ but i am hoping someone will come on and say..............oh piece of cake... (oh that sounds good now also. after not eating for 2 days now) and that it didnt hurt to bad.. tomorrow is the last day of prep and then surgery on friday. i am going to leave it in Gods hands but i know it is hard , the human in me is scared out of my my mind........ I would appreciate any prayer i can get. thank you so much...........

Veteran Member

Date Joined Dec 2007
Total Posts : 739
   Posted 6/18/2008 4:40 PM (GMT -6)   
Be blessed during ur surgery. n e one on the board can tell u how freaked I was b4 mine. Its a adjustment, but this is my first pain free summer in years. We all have our own issues and insecurities and mine are mostly cosmetic. So I just have 2 remind myself of that sometimes. I never realized I could b vain b4 this bag lol but I'm pretty ok
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 has been my Godsend...Thank you

Regular Member

Date Joined Mar 2008
Total Posts : 137
   Posted 6/18/2008 6:34 PM (GMT -6)   


I also was very worried about how much pain I would be in after the surgery recovery is fun, but you will definitely be able to handle the discomfort, and they give you pain meds whenever you request them.  Just make sure that when you are allowed to, you get up and go on short walks--walking as soon as you can and often after surgery really helps to seem to speed your recovery!  I was walking up and down the hospital halls all the time :)

The biggest challenge for me was not being able to sit up or easily move around in bed without pain for the first few days afterward.  But, every day you will feel a little better.

I just had my ileostomy a month and a half ago, due to Crohn's--and let me tell you, I was NOT happy about it when I realized it was pretty much my only choice.  I cried lots, and thought "why me?" etc.  I am 27 and was also very concerned about my appearance, to be frank.  But now that I have had the surgery, and am pretty much healed and back to normal, I AM actually glad I had it.  I would PREFER to have the ileostomy than have Crohn's interferring with my life. I NEVER have to think about going to the bathroom anymore!  I just do what I want when I want!

Also, my surgeon did a great job-- but I did have one complication...right after my surgery, I had an obstrution (my intestine was twisted, which can happen when scar tissue from the surgery is forming).  So I had to go back into the hospital right after I just got home from the ileostomy.. :(  Good news is they were able to fix it without a second surgery!  This complication is not common to have right after surgery, so do not worry. :)

This board has be WONDERFUL for me--I learned so much, my surgeon said I was probably the best-informed patient he ever had! :)

Good luck!  Let us know how you are after surgery!!

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 6/18/2008 6:43 PM (GMT -6)   
2much2bear-i chose to have an ileo instead of a jpouch. After spending 8 years on the toilet, going the normal way i honestly had no desire what so ever to ever go that way again!!! I did read alot about both surgeries, but the jpouch requires more surgeries, so more recovery and from what i read the first few weeks after the reversal are pretty rough. Also, the average j poucher goes 4-8 times aday, with some urgerncy, also there is a chance of the pouch failing. That doesn't happen often, but the chance is there and the bag can't fail, there's nothing there to break. There are alot of jpouchers who don't have urgency or go a bunch of times a day, suebear is one who has had really good luck with hers.
It also does depend on what type of disease you have, and what shape you are in when you go into the surgery

New Member

Date Joined Jun 2008
Total Posts : 2
   Posted 6/18/2008 11:19 PM (GMT -6)   
I had a colostomy 2 years ago and wish I had done it 10 years earlier. I can honestly say I loved it! It changed my life. It took me about 6 months to feel comfortable with changing my pouch and all the little adjustments but there is NO way I would ever go back. Good luck!
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