Successful ileostomy for 11 years

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New Member

Date Joined Dec 2006
Total Posts : 4
   Posted 12/7/2006 11:38 AM (GMT -6)   
Hi all:

My first time here.
My ileostomy is due to ulcerative colitis. After considering the risks with the J-pouch after hospital mistakes and complications, I decided to stay with my end ileostomy. At first, there was no way I was going to live with an ileostomy. I am now glad I had time via complications to reconsider.

I'd like to ask any of you all if you watched the show House this week? It portrayed a very interesting scenario. Two patients were advised to have their leg removed because of a major problem. It showed that when a patient is faced with this kind of trauma, they absolutely do not want to listen to any removal of their body. Been there, done that. It also showed what Dr. House would do if he was also faced with the same decision and he reacted like any of us would. Doctor's are only human as we are. But doctor's are in a much better frame of mind when the patient is faced with a huge decision.

I lead a normal and active life. I also lead a drug free life. As hard as a decision as it was, taking the more undesireable choice has freed me and now I know, after time, that the proper decision was made. I've been country dancing since 1993. I contacted UC in 1990. Surgery in 1996. I've been country dancing with my ileostomy for the entire 11 years I've had it. It has not stopped me. I've traveled. I've rode the waves in the ocean. I haven't done any less than I ever did before. The only drawback is when the stoma decides to talk. I find that instead of not saying anything, to just say that I have an ileostomy and be done with it. Therefore, the other person/people won't be wondering. Otherwise, I don't go around saying I have one. There's no reason to.

What I'm trying to get at. Are there people out there who have lived with an ileostomy for a long time that have experience a new life, drug free, without problems and without regrets.


Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 12/7/2006 2:10 PM (GMT -6)   
I have been living 6 great years with a j-pouch and understand when you say that most people don't want to contemplate life differently than what they know. For those with severe UC it makes me sad that they discount all their surgical options and let the disease control their lives. I have been fortunate to continue doing the things I love (100-200 mile hikes) without having to worry about illness, meds, or restroom locations. Glad to hear that you made the same connection.

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

New Member

Date Joined Nov 2006
Total Posts : 3
   Posted 12/27/2006 12:59 PM (GMT -6)   
Hi there.
My husband just had surgery to remove his colon and give him an ileostomy. The therapist nurse ahead of time marked where it should go. Down to the right of his belly button. But the surgeon said it was too low and raised it, to the point it will not work with jeans. Has anyone ever had theirs relocated?

Also, he just got home from having this done on Christmas Eve. We thought we were doing fine, until I made a ham and he apparently ate too much. He has bad pain in his back, which we're guessing he's partially blocked. Has anyone had this and what to do fast?

Thanks alot.

Regular Member

Date Joined Aug 2003
Total Posts : 335
   Posted 12/28/2006 8:41 PM (GMT -6)   
teri_girl.... If your Husbands output stops or slows down to practicaly nothing or/and he starts to vomit then he would need to be checked out at the hospital. Its very important with an Ileostomy to always chew food realy well. I had a small blockage once(too much cauliflower cheese and not chewed enough)it did pass on its own but it taught me a lesson and now I make sure that I chew well and dont eat too much of one thing at once. I eat mostly everything though,even nuts.

I hope that your husband is ok now.

kathleen... I have had my Ileostomy for nearly 4 years now. Same reason as you UC. I was offered the chance of a J-pouch but I couldnt face the thought of complications and having to have more surgery so I opted for the permanent Ileo. My health is realy good now and my stoma doesnt give me any problems,no meds needed either. I have to admit to times though when I do wonder "what if?"

Regular Member

Date Joined Aug 2006
Total Posts : 28
   Posted 1/25/2007 10:05 AM (GMT -6)   
I am facing surgery for UC also. I am having this debate J-pouch vs. end ileostomy. After hearing about life after the J-pouch, I am now leaning towards getting the end ileostomy. I appreciate hearing that life after ileostomy is good. If you don't mind me asking, what are your major issues with the ileostomy?

Regular Member

Date Joined Aug 2003
Total Posts : 335
   Posted 1/26/2007 2:42 PM (GMT -6)   
Hi Doc. I would say that my main worry about having an Ileostomy is the thought that I might have a leak from the bag when in public. It has never happened in 4 years but I have to be honest and say that from time to time especialy if far from home it is in the back of my mind. I did use to worry about the odour when emptying the bag but I havnt had to worry about that since I have been putting 3% Hydrogen peroxide in the bag after every empty.

Over all I would take the Ileostomy over the evil UC anyday.

Regular Member

Date Joined Feb 2007
Total Posts : 430
   Posted 2/8/2007 11:38 AM (GMT -6)   
bag lady: you're able to eat NUTS now? I am impressed!

New Member

Date Joined Feb 2007
Total Posts : 1
   Posted 2/13/2007 10:16 PM (GMT -6)   

I had the J-pouch 3 months after the ileostomy, which was 6 yrs ago.  I've never ever had a problem since.  In fact I was supposed to be on two prescription daily one to thicken my stools and another for spasms.  I took them for the 1st week and haven't taken them since.  It took me about a year to find the right food but now I eat ANYTHING I want, whenever I want.  I had spasms off and on for about a yr, but usually happened only a week before menstration.  So if that isn't an issue, you might avoid that all together.


I must say that I believe it is very normal to become attached to your stoma, the whole idea of going through such trauma (only you really experince)  it is similar to when people become attached to their abductors.  I had a hard time letting go off the whole procedure of changing my bag, etc.  My stoma became a friend to me.  I however had someone share with me the joys of life without a bag with very little or no compliactions.  I went with the J-pouch with "fear and trembling".  In my experince the recovery was more difficult than the ilesotomy, but I believe that was because of the anesthesia and pain meds prescribed then.


The 1st 3 months were an adjustment in learning how often to go to the bathroom and  learning  what food to avoid and which ones were best, but after I had learned that, my body had adjusted, and as I mentioned earlier I now eat whatever I  want with no problems.  I go to the bathroom between 5-10x a day depending on food consumption and activity, but this all becomes very normal and I don't think (view this as abnormal)anything about it.

We humans have an amazing capacity to adjust!  We can get used to about anything.  I imagine if I never had the J-pouch I'd adjust to life with a bag, but I can tell you that I'm glad I did it  tongue and to prove life is normal I just completed my 1st marathon and then a 32 mile ultra race.

I must say I don't miss my stoma anymore or changing the bag, the smell, the gas, etc.  I'm free.  I have a nice long and ugly scar, but I hear now they do the surgery laproscopically.  You are in better hands today!!  yeah

DocwithUC said...
I am facing surgery for UC also. I am having this debate J-pouch vs. end ileostomy. After hearing about life after the J-pouch, I am now leaning towards getting the end ileostomy. I appreciate hearing that life after ileostomy is good. If you don't mind me asking, what are your major issues with the ileostomy?

Post Edited (Georgina) : 2/13/2007 8:26:38 PM (GMT-7)

Regular Member

Date Joined Aug 2004
Total Posts : 45
   Posted 2/28/2007 5:31 PM (GMT -6)   
I had my j-pouch takedown 2 weeks ago. So far I love it - so much better than the bag! Nice to go normally again and I only go 4-6 times in 24 hours - and it should get even less since I"m only two weeks out. I'd say try the j-pouch if you're considering it - I was scared but now darn glad to be rid of the stoma. Just make sure you have a very experienced surgeon with j-pouches.
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