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New Member

Date Joined Oct 2009
Total Posts : 11
   Posted 12/6/2009 4:21 PM (GMT -7)   
Is there anyone that has crohns and has had to revert to getting a colostomy. sad Has this experience been challenging. Also what are the chances of the precedure being reversed. 
Be Blessessmile

Regular Member

Date Joined Feb 2005
Total Posts : 421
   Posted 12/6/2009 4:30 PM (GMT -7)   
<- brand spanking new colostomy (Nov. 23) and I have Crohn's. Had the colostomy, rectum removal and some of my colon removed all at the same time. Im 13 days out of surgery, at home, eating and even managed to hit up a Christmas shin dig last night for 1/2 an hour. Im 32 and have had Crohn's since 1999 though had symptoms for years before I was actually diagnosed. Depending on which ostomy you have, it is reversable, though I chose to never again have to worry where the next washroom is.

RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."

Regular Member

Date Joined Jun 2008
Total Posts : 221
   Posted 12/6/2009 5:28 PM (GMT -7)   
I just had a colostomy bag put in last May. To say that I love the bag would be untrue I don't think anyone can have a true love relationship with a colostomy, but it has helped me immensely. Before the bag I was have surgery every week for abscesses that kept appearing. I haven't had an abscess since. It took some time to adjust to it and there are times when I wish I hadn't had the surgery but it has improved my life a lot. I plan on having it reversed in a year or so. As long as they don't take out your rectum, or your entire colon you should be able to have it reversed.

You might want to check out the ostomie forum on this site as well there are a lot of crohnies with colostomies on there. Hope this helps let me know if you have any other questions.
Diagnosed with Crohns Oct. '07.  Have had 9 abcess/ fistula surgeries.  Colostomy 20 March 2009.
Current Meds:
Imuran 200 mg                            Omeprazole 20mg                     Vitamin D 2000 i.u.          Remicade 10mg x8wks
Synthroid 112mg                          Lexapro 20mg                           Tylenol  50mg
Birth Control                                 Calcium  500mg                         Morphine 40mg
Sucralfate 1gm x4                         Multi Vit                                     Cyclizine   50mg

New Member

Date Joined Dec 2009
Total Posts : 2
   Posted 12/7/2009 6:21 PM (GMT -7)   
I have gotten a colostomy bag at 21. and gotten it reversed in about 9 months. I had a pretty hard time adjusting to it. but knowing it was gettin reversed made me feel a little better. If it wouldn't of gotten it reversed I dont know how I would be. probably not happy at all. But there are people that do like it says it makes it alot easier and wish they got it sooner! Being 21 at the time I wanted to go out for drinks not stay at home. Im 30 now. I think id take it better now than when I was younger. hope everything works out for you 

Regular Member

Date Joined Apr 2006
Total Posts : 164
   Posted 12/7/2009 9:10 PM (GMT -7)   
Ive had crohns disease for 12 yrs. I will be getting a bag after my baby is born. I wanted to get one sooner but I just found out Im pregnant.  I am looking forward to getting a bag because Ive lost all ability to control my bm's. The muscle to control things is destroyed. I have been thinking about it all year and Im mentally prepared for the ups and downs.. I went to the "ostomy" forum and read all the past posts from ppl with them and It helped alot.  I think the majority of ppl there dont regret getting it. I wish you all the best. Happy holidays

New Member

Date Joined Dec 2009
Total Posts : 4
   Posted 12/9/2009 11:11 AM (GMT -7)   
I am 40 and have had my bag since I was 19. I had crohns for a year before that that did not respond to medical treatment, which included three months in hospital. I had two surgeries and almost died on the or table. My rectum and large intestine have been removed. I had a hard time adjusting but somehow managed. Since I was only sick for a year I did not really feel "greatful" to have the bag and be symptom free. I have not had ONE problem since and thank the lord have not needed ANY medication at all since surgery. I have two healthy girls. good luck!

Veteran Member

Date Joined Mar 2009
Total Posts : 1118
   Posted 12/9/2009 11:46 AM (GMT -7)   
Hi, i have an ileostomy which i've had nearly a year It was and still is very challenging we have never really bonded i hate it with a passion skull getting it reversed in Jan really don't want to end up going down this road again. Although there are people that are really happy with having an ostomy as it gives them a better quality of life or have had to have it done to save their life, I have also spoken to people who can have a reversal but have decided not to. the only good thing is you don't have to rush looking for a toilet!!!! smilewinkgrin Bev x
Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal 1st week of Jan. Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid,  citalopram 60mg (for Anxiety.)

Veteran Member

Date Joined Apr 2004
Total Posts : 992
   Posted 12/9/2009 3:20 PM (GMT -7)   
I have had a colostomy for 5 years I think. Kind of lost track of time ! Lot's of changes in my life since then. People told me I would think it was the best thing I ever did! Not how I felt for a long time. I can look at it now and say it was a good thing. I had to start working, could not have done so before. After 28 years ofmarriage found myself divorced and dating! What an ice breaker! lol I have learned to deal with it and peeps don't know unless I tell them. They are surprised when I tell them. I have to say there are still days that I wish I was "normall". That I didn't have to worry about this thing on my stomach making some God forsaken noise when it's so quiet you could hear a pin drop! I think now in that situation I instinctively keep my hand over it to hush itif it gets loud!
I guess what I want to say is it takes time. Support and a good attitude always help! Take care
Life isn't like a bowl of cherries, it's more like a jar of Jalapenos... What you do today, might burn your "butt" tomorrrow!

Regular Member

Date Joined Sep 2009
Total Posts : 90
   Posted 12/10/2009 12:12 AM (GMT -7)   
Cleo, oh how I love that saying about the cherries!! Good one! And how bout that - my name is Cindy also.

New Member: Comfort > I had an ileostomy in 98 for about a yr. and it was hell - I don't ever want to go down that road again.
Seriously don't forget to think about the intimacy part of it. There are small privacy bag attachments you can get but they were too small & they filled up too quickly.
Its always there on your side ... when you look in the mirror ... and for me it did a lot of damage to my self-esteem. I was so embarrassed and I still had many problems with leaks and blockages and I still had to be close to a bathroom because the bag would get full pretty fast - very liquidy stool and bad smell all the time too. I was like 23 or so then and now i am 33 & I pray that I can hang on to whatever colon & rectum I have left - which is very very little. Many say that its the best choice they ever made but I'm telling you do your research - its not a fix all - having the bag comes with a lot of "other luggage"! Good luck & best of health! Have a good Christmas & try to enjoy the holidays!
praying for a good night's sleep and a happy bottom!! :o]
1998: Colitis - removal of colon, temp. ostomy 10 mths.
2000-07: disease free & doing well with j pouch.
2007-09: rectal pain & discomfort, loss of bowl control. diagnosed with Crohns March '09 currently on: Emtec, Azathioprine [Imarun] & Remicade. Med History: steroids, predizone, cipro, loperamide [imodium], gravol, previcid, cholestramine, xylocaine jelly, zinc oxide creme, etc.

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