Success Stories Please :)

SandyK, I consider myself a success...my surgery (31 years ago) was experimental and no one was totally sure what would happen. With the exceptions of catching stomach bugs (they really suck) and only one case of pouchitis, am doing well. I still have bad nights and sometimes days where for seemingly no reason things decide to act up, but the good ones more than make up for it. When I consider where i was at 15, anorexic thin, no face color and too much prednisone, and now, I am grateful to those 2 surgeons and my folks who decided i was worth the risk. I might not be here today. I have a beautiful 11 year old daughter I am so proud of and thank God every day I am here with her. My folks are still healthy and around which makes it even better...i know they aged a ton when I was so sick with UC. Each day is a gift...and with all of us, we take them one day at a time. I have found over the years that my cooking is way better for me than eating out...too many chemicals in the stuff and no idea who is preparing it and how clean they are. My only 2 concessions are Whataburger (here in TX and mexican food--major burn but oh my i love that stuff). Plus a friend of ours owns a lebanese restaurant and no issues with their food. As you feel better, you can expand and figure out what works for you...each of us could give you ten different answers but it all boils down to what you can and cannot tolerate. It does take time and patience but is so worth it in the end. Keep that hope shining brightly and some faith to go with it.

Well thank you so much for that ValB! Getting the surgery when you did must have made going through recovery and adjustment a terribly frightening endeavour! I am delighted to hear you are thriving!

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After perusing this site, I have noticed that most stories here are focused on the various complications with the jpouch.

Sandy....this is a support board. The people who come here have problem pouches, by and large. This board is not a representative universe of J Pouchers by any stretch of the imagination. There are success stories here, but asking a question like this on a board populated with mostly problem pouchers is not exactly going to draw representative responses.

As was posted elsewhere, this surgery has a 95% success rate. Most of the 5% that are not are or were here at one time. Some small chunk of the 95% are here. The vast majority of the 95% have never been here and never will be.

Although I have battled pouchitis for 18 of 21 years with a J Pouch (it is mostly under control with meds), and although my scope pics show chronic moderate inflammation, I consider my surgery a success, because of what came before it. Success is in the eye of the beholder. I would probably be in the 5% by most definitions, but I reject those definitions.

I am a 12year veteran of the j-pouch. Other than two mild cases of pouchitis I've done very well. I just in the last three months have been taking a probiotic and see even more improvement. Very little gas now and it seems to be a good thickener. There have been past posts about successes. Maybe you can do a search to find them.

sandy - here are some more success stories. There are quite a few successes here.

Many members come here around the time they've made the decision to have surgery and they hang around for awhile as things adjust. Then most go on to live their lives. Some come back just to give back for the support they received and to update their successes.

My pouch is 23 years old. I've never had pouchitis, use the bathroom 4-6 times per day on most days. I'm a vegetarian and I eat whatever I want.

So the question is - how are you doing? Are things going relatively well for you? Are you having any problems? Hopefully all is very well with you.

kathy

Hi there!

I would say my thoughts are along the same lines as CTBarrister.

My pouch is 23 years old. I did have a hernia right after the first step surgery and adhesions that caused obstructions a few years later. After the adhesions were removed, I never had that problem again.

The past 13 years I've had undiagnosed pouchitis that probably could have been resolved quickly if I had the right information long ago.

At this juncture, I would say my plumbing is more of a success than it has ever been. At the same time, when my miserably shriveled and diseased colon was removed and I wasn't sick with UC anymore, I considered that a HUGE success.

The rest has just been blips along the way....Not fun, but I'd take them over UC any day!

Best wishes as you regain your health!

I am happy to say that my j pouch is a total success. What the future holds for me (and my pouch) remains to be seen but it's been an awesome 3 years without UC! My j pouch certainly is a quirky little thing but I am very grateful for the procedure as it literally gave me my life back.

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I would LOVE to hear from people who have had few problems with the pouch.

Gee, does that mean that if you did have some problems, you are NOT a success story? Hopefully not, because I consider myself a success, even though I had plenty of complications, some quite serious.

But, here I am more than 17 years later, with no regrets and a pouch that functions to my satisfaction. Just because problems may arise, it does not mean that you are doomed to a failed pouch. To the contrary, most problems have solutions and very few pouches are failures. AND often, most of those failed pouches are due to undiagnosed Crohn's disease.

Even though I have had pouch problems, and other issues like arthritis and non-pouch related disease, I have traveled internationally, camped, snorkeled, hiked, boated, raised my children, and managed my household. So, yeah, I feel like a success!

Jan

Well thank you so much for your responses everyone. Sorry I haven't been on the site so much since my last post.

It is wonderful to hear how well you are all doing! I didn't mean to imply that if you have blips that your pouches are a failure!

I was getting a bit scared after reading some of the posts... However, I TOTALLY understand that people come to this wonderful site to share their experiences with a supportive and understanding community. It is an invaluable resource for 'pouchers' and I am grateful for it.

Tomorrow it will have been a month since my 'takedown' and I seem to be doing quite well. As the doc promised, my first two weeks were rather difficult and I felt tentative about straying too far from my home or anywhere with out a toilet. I'd say I was visiting the loo about 20 times per day. Oh yes, y'all were right about burning butts!! Oyeeee.... Sometimes, I feel achy around the sphincter area.

Over the last week I've been going about 10 times (give or take) and only twice during the night. Still feeling pretty tired though.. and occasionally (like today) am feeling a bit 'off'. Operating at about 90%... The doc told me I would continue to feel like I have a flare for about three months after the last surgery.

I'm still on the restricted post surgical diet for another two weeks, but despite this am trying to eat as healthy as possible, though its challenging to accomplish this when whole grains and fresh fruits and veggies are not allowed!! Taking VSL#3 prophylactically and lots o vitamins.

There ya go, so for the most part, so far, so good!

SandyK

SandyK...am so happy you are doing well! Yeah...that burn is something isn't it Keep doing what they tell you and keep that chin up and a positive attitude...post op days are to be expected. lots of positive thoughts and prayers are with you!