When you get on this path to a jpouch, getting there is hard enough. Considering that it might not work is something that we all sort of pretend is not possible. My jpouch has not been perfect, but I’m going to fight like hell to keep it, and the idea of it leaving, I’ll admit is terrifying. However, there was a time close to my takedown when I said verbally many times, “I’d be ok with a permament ileostomy now, I know I could do it”. The reality of this is a little different, but I had confidence in it at that time. Many of us do.
In my path to find jpouch friends, I’ve found 2 people that I know who have had to have a reversal back to a permanent ileostomy. I wanted to talk about it for a little while, because I think that we all view this is a failure. We failed, our lives will be horrible, and woe is me blah blah blah. Nadia, over at the UCVlog.com has just gone through this process. I think it is really important for all of us to see someone who has had their jpouch removed and are still moving forward with their lives. Nadia has Crohn’s and her jpouch failed for a few different reasons. I think she had chronic pouchitis, lack of blood supply and perhaps some other things. I think she had her jpouch for about 2 years before she had enough problems to have it removed. On her blog, Nadia talked about struggling with the choice to give it up, or try to keep it, and how hard that is. If you’re facing this, I would recommend reading Nadia’s Journey.
I have another amazing friend, Sarah. I met Sarah after her jpouch had already been removed and she had her permanent ileostomy. Sarah is a wife and mother of 4 young children, and went through her sickness, recovery, and sickness again while being a mom. Sometimes after talking to Sarah I realize what a weenie I can be. When I look at Sarah, I see an amazing, beautiful woman, who is smiling in every single picture. When I talk to Sarah about her ileo and when it causes her problems, shes never really bitter or angry. She just get annoyed, which I think is pretty healthy. Before my takedown she was one of my biggest cheerleaders. I was SO worried something would fail or there would be complications. Despite her pouch failure, Sarah still helped me go into my surgery confident. I think shes had her ileo now for almost a year, and while its a pain, I think Sarah has finally come to terms with it and doesn’t let it hold her back from her life and enjoying time with her family. Actually I just got off the phone with Sarah, where she walked me off an anxiety cliff (more about this in a future post). I don’t see/talk to her enough, but I’m so glad that I know shes there.
I don’t know if my pouch will last forever. But finding amazing, strong women like Sarah and Nadia, is what makes me know that anything is possible. Everyone who gets to surgery has been through hell. We all have horror stories of sickness, hospitals, doctors, etc. And we ALL think that we deserve for it all to work out perfectly for us. I just want all of us to remember, that even if it doesn’t work out…its not the end of the world. If you’re thinking about removing your Jpouch….reach out. Find someone who you can talk to, or ask me and I’ll help you find someone. After all, I’m convinced everyone I know now has a butt disease.
September 27, 2011 at 9:23 pm
I just wanted to say I look forward to reading your blog. I stumbled upon it while looking up reviews on ostomy belts and found your honesty in your blog intriguing.
September 28, 2011 at 9:36 pm
Jackie,
I just want to also thank you for your candor and frankness about this life we live. Keep rollin!
October 3, 2011 at 1:44 am
Jackie,
I have been reading your posts here and on j-pouch.net and have found your posts helpful in goof through this experience. I must admitted jealousy on my part when I read that your visits to the bathroom subsided immediately after your take down. I haven’t been as lucky and am still going quite often – it sucks! Although, I do hear the first month is the hardest.
In your conversations with many folks, have you run across anyone who lives in/near sacramento?
Thx,
Danielle
October 6, 2011 at 7:36 pm
Thanks Chris. I just tell it like it is and hope someone can learn something along the way!
October 6, 2011 at 7:39 pm
Hey Danielle,
I’ve found a few in Cali…but no one in Sacramento specifically…but I’ll always keep an eye out. If you go on jpouch.net, I know Brevin is from Cali, and I’ve got a couple other contacts there too.
When was youre takedown? Within the month? No worries lady. What they say is true, month 1 is tough, month 2 is kinda hard, and from there is gets easier and easier. You’ll be holding your poop for hours in no time!
October 6, 2011 at 8:36 pm
Jackie –
I’ve loved reading your posts – thank you for putting yourself out there. I will reach out to Brevin on the other website, I’ve seen his posts as well.
My takedown was 8/12, it will be 1 month next week. Thank you for the vote of confidence…it’s been hard, but WAY better than living with UC. What is the difference between month 1 and month 2? I guess I’m looking forward to being ‘normal,’ or as much as one can live this way after surgery. Have you found some things work better than others (food related)? How are you doing?
Thanks again!
Danielle
October 6, 2011 at 8:50 pm
For me month 1 wasn’t hard, there was just a learning curve. Literally, how to us the pouch. Was it going to hurt, how did it take stuff to come out, how many times was I going…ect. Month two was totally different. I had more confidence. I learned my limits for eating, and also how long I could hold it. I started testing myself, pushing my limits. I felt slightly more liberated. Every day, things start to work a little better. My take down was June 6, and I’m still surprised every once in a while. Not that I’ve been doing this forever, but in my short time, things changed pretty rapidly. As for food…depending on what I’m gonna eat, I still take an immodium if i think I’ll need it. I still tend to avoid veggies…as much as I can unless they are super cooked. I just know they mean going more frequently for me. When things seem to get out of whack a little, I’ll eat soft foods. Peanut butter/oatmeal/apple sauce. Sometimes its just a few hours of giving my stomach a break.
Over all…even though I’m afraid to say it..I think I’m doing awesome. In the end…even though it took me 15 months to get my jpouch (and that sucked) I think that I had a lot of healing time in there, which so far, has enabled my pouch to work very well. I’m still afraid of a lot of food…mostly lettuce…but I’ll give it a try one day, when I know I’m at home in clear site of the bathroom.
August 18, 2015 at 4:09 pm
I bought these for my daughter as a birthday current as a
option to get ready for her first yr as a Junior Counselor at camp.