J-Pouch Surgery Experiences and Advice Needed

Ok, this is my first ever forum post!

But it's good news
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I've contacted my surgeon (well, left a message with his secretary) about getting my ileostomy reversed!

If anyone already has a pouch, I'd be glad to hear from you as I am a little bit nervous too!

Hey, welcome to the forum!

The only thing that qualifies me for membership on this website is the fact that I am the proud wife of an ostomate. My husband had severe ulcerative colitis and ended up being the recipient of an ileostomy a little over a year ago. It's been an interesting road, but apart from the usual bumps along the way, we're both very happy that he decided to have the surgery so he could continue enjoying his life without an icky diseased colon.
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Neither one of us is quite ready to discuss reversal at this point. I suppose in our case, Tyler was so terribly sick for so long that we can't really imagine having him go back into a hospital for another operation. Nonetheless, we're both content in knowing that as things stand right now, a reversal is a good option to have when and if he decides to go through with it.

I hope you find our little community useful, and please feel free to ask all the questions you want, and get to know the crowd.

Tiggy

G'day Franicaa,



That's great news. At your age, the thought of a permanent ileostomy must have been pretty soul-destroying - it was bad enough for me at 33!



My J-Pouch has been online now for just over a year. It was touch-and-go for the first six months - I tried to do too much too soon. Now though, that I've got my life in order, I can't believe all the shit I put up with during eight years of UC and the three months of temporary ileostomy. The initial surgery is a big call for most, especially males, given the potential side effects. In my case, the decision was made for me when the UC turned cancerous. You too are "lucky" in that you've passed that first stage.



In the last six months, we've had a little support group (about ten members) going here in Oz. Drop me a line and I'll forward you some stuff - there are a few things to look out for in the early days. The one thing I'll say immediately is to make sure you're 99.9% confident with your surgeon. Remember that, by definition, 50% of any population (including surgeons!) is below average. If you're having any doubts, don't hesitate to get a second opinion. This is a procedure you want to get right.



Don't hesitate to ask ANY questions - in the 10 years that my insides have tried to rule my life, I've lost any self-consciousness I ever had!



Cheers,



Tim.





PS. I'd love to hear from other J-Pouchers out there. Searching for you within MeetAnOstomate is bloody tricky given that most people call an "appliance" a pouch these days. I'm always keen to swap notes.

Hello...

I had an ileostomy last September and have done fine with it. I don't like it, but it's bearable. (spelling?)

I have read about the J pouch, reversal, and have asked various doctors and anybody else I can get information from. It seems most people have a gloomy report about it. They say things like, you might have to use the bathroom 10-20 times a day, there can be leakage at night, and other things I can't remember now. So, what has been your experience, and that of the people in your support group? I would love to have it done if I thought it would make life better, etc. Thanks for your response.

Hi Zoe, I am having a reversal, but not with the J Pouch. I do know that I have exercises the doctor has given me so that doesn't happen. But a pad in our panties isn't as bad as a pouch to me. Everyone feels different about this. I don't know how sick you are, but my doctors say I am a go. I know in Houston, Texas, they have a great hospital that I have heard miracles about. Also, you can check YouTube to see what people say about their doctors. I wish you the best of luck. I almost didn't write this, but I know how hard this has been for me. Maybe it is because I have a young child, I don't know. Just know whatever reason you are looking into a J-Pouch, remember they do teach you how to exercise that area. Also, they help you in the hospital while you are healing. I have been told by doctors that we don't hear all the good on the J-Pouch or any reversal, because most people leave these sites when all is well, or don't talk about it. Wish you the best, I hope you find your answers, Jenny
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Words of Encouragement from Ostomy Advocates I Hollister

I recently read the questions & comments posted by those who already have a J-Pouch & candidates for one. I live in Houston, TX & had mine done at The Methodist Hospital here. Overall my result has been excellent & I have absolutely no regrets with my decision to have it done. Of course the first few weeks are tricky as you are essentially breaking in a new butt hole. Mine hadn't been used in almost 2 yrs so it was understandably quite tender at first. I am now 6 mo post op & things have & continue to settle down with reduced frequencies & more predictable urges. Gas type pains, which I've learned most times isn't gas but swallowed air, are a sometimes uncomfortable problem, but as time passes you learn ways to help minimize the amount of air you swallow. I take Lomotile 2.5 mg pills 2-3 times a day to slow the bowel action & drink a tablespoon of Citrucel powder mixed in water twice a day to thicken the stool. Otherwise I eat whatever I want & have 6 - 8 bowel movements a day, which is quite manageable.



I agree completely with Whitey's comment about being sure you have the right (best) surgeon available. Do your homework, try to discover references who've used the surgeon & don't be afraid to ask questions. This is a very important decision & one you want to get right the first time. Good luck.

Larry

Bamatex, thank you. I couldn't think of the name of the hospital, but they also have one with every religion and some awesome doctors. I am so happy you are doing so well. I will not have a J-Pouch, just a reconnect. So I won't go through everything you all did and will, but I hear I have my work cut out for me also, and I am ready. Not afraid at all, just really excited. I tell myself every day I am one day closer to my reversal. I also picked a super surgeon in Atlanta to do the reversal; that is why he is making me wait almost a year. He said he wanted me totally healed, and his father is also a doctor, and they both feel the same. I go in October, and to me, it has seemed like ten years. I never had to diet except what the ostomy nurses said to eat, but my doctor put me on regular foods as soon as I felt good. I got off lucky because I never got a hernia, thanks to Beyond and me being lazy or just too scared to lift anything heavy. I am so ready for my life back, and your story is amazing and inspirational. God bless you for sharing this information. I know people on waiting lists for a J-Pouch will be pleased to read this. Thanks again for being such a nice guy, Jenny
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