Colostomy Surgery

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New Member

Date Joined Oct 2008
Total Posts : 2
   Posted 10/28/2008 6:00 PM (GMT -7)   
I am so happy to have found this site.  So many helpful people.  I know that any type of surgery can be frightening but did anyone or does anyone else feel that way that did or is about to have colostomy surgery?

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 10/28/2008 6:35 PM (GMT -7)   
i was very scared. But i thought of it this way, i KNEW i hated life the way it was, and i KNEW i was unhappy and missing out on everything. I figured that i MIGHT hate life after surgery, but from everything i read, i was gonna be much happier, andi had to take the chance that things were gonna go better.
So i am not gonna tell you to not be scared, cause you are gonna be, what i am gonna tell you is that life is SO much better, i can do all kinds of things now. And even a year and half after surgery, i find something everyday that makes me glad i had surgery, sometimes it is the stupidest little thing. Like eating muscadines and scupperdines, and sometimes its something big like taking a road trip, but everyday i find something that makes my life better!

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 10/28/2008 7:43 PM (GMT -7)   
Oh yeah, I was scared. That's why it took me 7 years to finally agree to have surgery, and even then, it took 4 Gastroenterology doctors to tell me that I HAD to do it!! I even started out with a temporary ileostomy and had it for 8 months before having my colon and rectum removed. Once I had the ileostomy, I liked it, because I felt better and could do so many things that I hadn't been able to do for years. I didn't find this site until a year after my proctocolectomy, so I didn't have anyone to ask what it was like. Had I found this site sooner, I'm sure I would have agreed to have surgery sooner.

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

New Member

Date Joined Oct 2008
Total Posts : 2
   Posted 10/29/2008 3:55 AM (GMT -7)   
smilewinkgrin  Thank you both so much for responding.  I was having so many moments of up and down.  Whew! it's exhausting!  I actually do feel like once all is said and done life will be healthier and better.  Like you, I have read, searched, asked and thank God for sites like this.  The information has been both a wealth of knowledge and a complete blessing.
Thank you both again. I am very grateful. 

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 10/29/2008 9:30 AM (GMT -7)   
The actual surgery was scary, but knowing I would feel better on the backside kept my fear on the backburner...My surgery was the same a flchurchlady (had it in feb 08) and I also had a temp ileo before that. Just know that you will be starting a new life after surgery and won't need to know where every bathroom is in town!!!

Good Luck:)

New Member

Date Joined Jan 2008
Total Posts : 4
   Posted 10/29/2008 3:57 PM (GMT -7)   
Did any of you have Kpouch or BCIR, then convert to an Ileostomy?
If so, how did it go?
I've fought a long battle with pouchitis and now maybe Crohns inside the pouch and looking at going to an Ileostomy.
Of course it scares me.
Did any of you have pain in your lower tailbone/back area and leg pain?
I'd appreciate any input or opinions.
Also, is there anyplace on the net that lists all the different surgeons that do this surgery and how they are rated?
Mike in Virginia

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 10/29/2008 4:11 PM (GMT -7)   

Mike in VA--welcome to the site!  I did have "tailbone" area/lower back pain but I attributed it to my many a Crohn's patient, I was never a candidate for anything but the ileo, so I cannot answer for that, but I did go from a temp ileo to a permanent!

If you go to, I believe there is a list/link of ColoRectal surgeons.

Good Luck!

New Member

Date Joined Jan 2008
Total Posts : 4
   Posted 10/29/2008 6:10 PM (GMT -7)   


Is your pain basically gone now that you have an ileostomy? How do you rate your quality of life now? Any major issues with your ileo.? Also, where did you have your ileo performed and by which surgeon?

TIA for your help.

God Bless!


Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 10/29/2008 6:42 PM (GMT -7)   
Hello Mike,

I too had the pain, due to fistulas, etc. I have a perm ileostomy due to Crohn's disease. Surgery done at Cleveland Clinic in Cleveland, OH by Dr. Victor Fazio. Excellent facility, superb surgeon. No reoccurence since my surgery in 1984! Some bumps in the road but nothing that hasn't been manageable. I have had some partial blockages, caused by either foods eaten or adhesions. None required surgery in my case.

You are asking all very good questions. Please feel free to research this info on the various threads on this site. There is a lot of information here.

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

Regular Member

Date Joined Jan 2007
Total Posts : 300
   Posted 10/29/2008 7:18 PM (GMT -7)   
I was terrified. So terrified that the nurse told me I could change my mind even if I was on the operating table (before they put me to sleep, of course). I was balling my eyes out. But, I gotta tell ya, I was SO GLAD I did it once it was over because the hardest part was making the decision to do it. ONce it was done, there was only one way to go. I gotta tell ya, living with a bag is managable. Living being sick is not managable.
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.

Regular Member

Date Joined Sep 2008
Total Posts : 489
   Posted 10/29/2008 10:28 PM (GMT -7)   
I think anyone that has time to think about a majer surgary of any kind has got to be scared.But you are doing the smart thing by asking your questions now.Good luck and make sure that you get all of your question answered.
Lost half of my small intestine.Ilieostomy for 5 months then reverst,Nerve damage to right leg,part of my right hip bone removed,Cronic pain,hernia,infection in my back called discites,and depression.Mother to 9 kids 7 boys 2 girls and 1 stepson.4 grandsons,9 grandaughters.4 of my grandkids I inherited from my twin sister who passed away 6 1/2 years ago from a blood clot after surgery.God has given me my life back after I almost lost it.Even though its a painful and sometimes hard road to walk I take it one step at a time and give thanks to god for every step I take.

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