Well I went to the doctor today and he looked at me and I have another fissure. That's my 5th one! He said it's tore and it's one of those really painful one's. This has been going on wayyy to long so I'm having surgery next week and I'm going back to the bag. Not what I wanted but I can't live like this for the rest of my life.

I really wanted my J-pouch to work. I get so depressed sometimes but I think i've made the right decision and so does the doctor.

Anyways just wanted to give an update.
Hope everyone is doing well.

-Danielle

I'm sorry things haven't worked out as you hoped Danielle. If it is any comfort, please know that life with an ostomy really can be great! I've had my perm ostomy since 2001 and had my pouch out in 2003 - since then I've been so healthy I sometimes almost forget I was ever sick.

It takes a little time to adjust, but I hope that you'll soon feel so well physically that the ostomy just becomes a part of who you are and not something to be upset over. I live a very full and normal life and even had a baby with my ostomy. I'm now thinking about and planning for baby #2...

Let me know if you want more details or if you have questions. Good luck next week.

Aww Danielle, I'm sorry your pouch has failed you. I do hope you will feel better though. If you think you are making the right decision, you should feel confident. You can always look into a continent pouch down the road. Good luck, and please let us know how you are doing

Oh Danielle - that sucks. It seems like you've had a lot of problems with your pouch. It really does sound like you've reached your limit and I'll bet you'll be just fine once you're healthy again. Please make sure you hang around and let us know how it's going with you.

kathy

Hi Danielle,

I'm so sorry that it has had to come to this. I really do understand your pain with the fissures because I suffered with them from the very first week that I had my j-pouch and they can be absolutely excrutiating! I had to go back down to theatre during my hospital stay for my takedown because the fissure was so bad! I tried just about every trick in the book to get them to heal but they never fully went away, they were always there niggling in the background!

I know it's taken being at the end of your tether to come to this decision and you have put a lot of thought into it. All I can say is that I echo what Jill said, life with an ostomy really can be great and you will at least be rid of all those horrible painful "butt" issues.

Whatever happens you will have us to help you through. Please keep us updated.

Take care.

Shell

Hi Danielle,
Sorry to hear that the jpouch didn't work for you. One positive thing to keep in mind is that it seems that an end-ileostomy can be much easier to deal with than a loop ileo. I currently have an end-ileostomy and it really isn't any trouble at all. It is very discreet, I very rarely have to get up in the night to empty and I have never had any leaks or serious skin issues around the stoma. Plus my wife is due to give birth to a baby in one month who was conceived about 2 weeks after I had the colectomy operation!

I have the option of having a jpouch created, but I am seriously thinking of sticking with the ileo. My situation is a little different in that I am 37yr old male and everyone has different priorities, but from my point of view life with an ileostomy is just fine.

Best of luck,
Ed

I hope that works out better for you Danielle

Danielle,
It sounds like you gave your pouch a fair shot to behave itself. Fissures hurt soooooooo bad. I only had one and thought it was horrible. I cannot imagine having to deal with having them repeatedly. Try not to second guess yourself. You deserve a pain free life. No one should have to endure the kind of pain that you have had.
I had my end ileo for 9 months and though I hated it at first just because I was not expecting to have one (fast and furious bout of UC, emergency colectomy), after I got over the shock of the surgery--I really did like my ileo. I could eat whatever I wanted and do whatever I wanted without having to know where a bathroom was.

I almost did not give my ileo up. My life was great with it. But, I had to give the j-pouch a try, otherwise I would have always wondered about it. I know that if my jpouch ever gets unbearable, I definately would not have a problem going back to my end ileo.

Good luck to you Danielle. An end ileo will not prevent you from doing anything you want to do! Oh, and since it is going to be permanent, get some appliances and bags and experiment with different placement spots that work well with body type and the kinds of clothing you like to wear. Then pick a spot for your ileo, and I think your surgeon will accomodate you as much as possible.

Becky

hi danielle. just wanted to wish you the best of luck. i thought i would absolutely hate my ileostomy and it has not been so bad. i am waiting to have mine reversed and hope it does work but dont think it would be the end of the world to keep the 'bag' take care.dx

hi edster1970. i have just noticed that you are in dublin, ireland, me too. i am having difficulty with my surgeon and was wondering if you can recommend anyone. i have had my colon removed and am now waiting on a date for pouch formation? any suggestions? i just want to get the pouch done as soon as possible. thanks.

Wow You All Are So Kind.
Thank You So Much For The Comments And Supporting Me.
I Went To See My Surgeon Yesturday And I'm Having The Surgery Next Friday At 1:30.

Back To The Bag I Go.
I'm Kind Of Scared/Nervous
But I Know I'm Doing The Right Thing.
No More Pain 24/7 !! YAY! =)

Anyways, I Really Want To Thank All Of You For Being Here For Me And Giving Me So Much Support, I Love This Site.

I Will Keep Everyone Updated As Soon As I Can.

-Danielle

Danielle - again I'm so sorry the j-pouch didn't work out for you. But you do sound very upbeat about the surgery and being able to function again. And please don't forget to update us because we'll all worry!

kathy

Danielle, I can completely relate to your problem. I am currently going through the same thing. Recurring fistulas have made it miserable for me for the past two years. So I know exactly where you are coming from. I have had a J-pouch for ten years and I think I have given it a fair chance. I am set to have surgery to try to repair my pouch but I am setting myself up for the worst. There is a really big chance I will end up with an illeo.. Which I am familiar with. I don't think the bag is an aweful thing but just the thought of surgery puts me back a little. I am trying to hype myself up about it maybe I shouldn't think about it to much. Anyway I hope all goes well for you.

Danielle, Im sorry the j-pouch didn't work out for you, but you've tried long enough. It really is about quality of life, and you'll have that back soon. Good luck, and you'll be in my thoughts and prayers next friday.

janna

Thank You All So Much.

I'm Getting Sooo Nervous, Surgery Is In 4 Days..

-Danielle