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I am a 21 yo male having my j-pouch surgeries this year (1/3 done). I have read so much negative about j-pouch and I know that people who post in j-pouch groups usually are only the negative stories and don’t give a proper picture of what could be in my case. But a lot of the «success stories» I read are honestly also very depressing. I am a muscular and used to be extremely active, but since I was diagnosed at 18 ( 3 years ago) I have suffered from severe fatigue and been more or less homebound. In a lot of ways I feel very depressed and suicidal, like my life really is over in all the aspects I enjoy. I dream of going to law school, lifting weights, building muscle and start mma. I am very commited to be disciplined with diet, I have had a lot of success previously with a carnivore diet, however I don’t know how that works with a j-pouch (I will experiment a lot when I have recovered from my final surgery and see). I want to have energy, see my friends, live my life. I am in what I can only describe as hell and have been there for so long, I don’t see a life that I want to live. Today I was told that my next surgery is postponed 6 months due to covid and that was another huge disappointed. I can’t even describe how bad I feel and how hopeless everything feels. Can anyone share their success story and come with any advice/optimistic input? Thank you so much.

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I had my takedown about 4 months ago. I'm as healthy as can be. I go wherever I want and do whatever I want. I sleep through the night. I lift weights and coach wrestling. I eat tons of probiotics. I eat pretty clean for the most part. Not perfect but pretty good. I have pizza on Fridays and I do eat the occasional chocolate but I try to take good care of my self. I also had my takedown postponed because of stupid covid and I was devastated but I kept my head down and kept pushing forward. I wanted to be in the best shape I could before me surgery and I'm glad I stayed in shape. Just keep pushing forward and you will be there before you know it.

Hey Fred! Sorry about your surgery being postponed.

I was 22 when I had my surgeries. I am almost 7 years out now and I am happy with my J-pouch. I am a vegetarian and been so for about 6 years and I am happy. I have about 20bms per day and I never had pouchitis.

Here is a more in debt review of my J-pouch benefits in full. CLick down below

https://www.j-pouch.org/topic/...wn-annivesary-review

@Fredz  Thanks to my J-pouch surgery I was able to take up a challenging martial art (to study with my daughter and become a teacher in that art), learn to scuba dive (and become a volunteer diver at my Aquarium), and happily take a window seat on an airplane. I could not have done these things without the surgery. A relative of mine got his J-pouch as a child and is now a doctor. I think the quality of our lives isn’t about the challenges we face but rather how we face them.

Hi Fredz;

I’ve had my j-pouch since 1992 and have been very happy with it. At the time, the j-pouch was not common but my doctor felt it was the best option.

Overall, I have been very happy with the outcome and I’d say my life was a lot better after the surgery than before. Interestingly, my small intestine has been transforming part of itself to become more colon-like over the years. At my recent sigmoidoscopy check-up, usually annual, my doctor said it all looked great and to come back in two years.

This is not to say that there haven’t been some issues that I’ve had to deal with.

I can eat most foods. The only foods that bother me are raw vegetables (no more salads) or the fibrous part of cooked vegetables (I only eat the top of broccoli and asparagus, for example). I do watch dairy but that’s because I was lactose intolerant long before I had the j-pouch and I avoid carbs due to an unrelated issue with my pancreas.

Because of what I call the j-pouch “kink”, I often find that I need two bathroom sittings. I go, walk around, and then find I have to go again in 5-20 minutes – I think things get caught up in the kink. Before work meetings, I know to head to the bathroom 20 minutes before the meeting so I have time to go a second time if needed. When I traveled by plane, I would arrive at airports early and head to the bathroom 40 minutes before boarding time and then, again, 20 minutes before boarding time just to make certain. In general, it’s usually 6-7 bowel movement periods each day including a bathroom trip in the middle of the night.

If my bowel movements become looser, my butt becomes irritated. I start taking Imodium for a few nights and use Triamcinolone Acetonide .1% cream for several days and the burning goes away. I find high quality toilet paper worthwhile. I find Cottonelle with aloe to be the best but it has been increasingly difficult to find and the only place I can find it in a store is Target. I may have to start ordering online.

Gas does build-up. I find laying down on my side after a bowel movement works best but that is not always possible so I carry Gas-X.

While it is not usually an issue, one of the first things I do when I arrive at a place is to locate where the bathrooms are in case I need one. I think this is mostly a habit I acquired pre-j-pouch. Nevertheless, when I purchase seats to a play or a stadium, I’ll select seats that are closer to a bathroom. For road trips, I map the locations of restrooms along the way: rest stops, McDonald’s, etc. I do avoid camping trips and hikes of more than a couple of hours because it is more difficult to get to a bathroom if I need one. I did play softball after the surgery until I had knee trouble.

For me, the j-pouch has allowed me to live a mostly normal life with minimal complications. I’ve successfully traveled to many places in the US and internationally and have been able to participate in activities.  Given the choice, of my life before the j-pouch and after the j-pouch, I would definitely choose after the j-pouch.

Good luck Fredz!

Mark

Hi,

I received a pouch in 1997 after suffering from severe ulcerative colitis.  Compared to suffering the various chronic diseases of the colon, there is no comparison, in fact most people don't realize how far from normal they have slipped as they slowly suffer.  For the vast majority of folks, the pouch gives them back a mostly normal life again.  That being said,  I have found everybody's body reacts differently from the lack of colon.  Some folks pouch and intestines work better than others.  Some have to go only 3-4 times in a 24 hr. period.  Some, like me are use to 6-8 times, but with total control of the event.  But maybe its because I'm a pig and refuse to deny myself of Every good food, ha!

The lack of colon means watery poop so better clean up is required, you might have noticed the fascination of J-Poucher's with various clean-up techniques, but you probably already are familiar with them all.  I have found not every solution works for all.  After isolating now at home I have grown much fonder of the hand held shower spray, as I have plenty of time and nothing else to do, ha.

I am very active; Skiing, Hiking, Backpacking, Hunting and Working Out.  I have just adapted the extra bathroom trips to my life, most occur after 3PM.  I just returned from my every two year sig scope and received a clean bill of health.  Doc says don't come back again unless you have any problems.  I have never had pouchitus. 

Overall, life is pretty good with a pouch, beats the hell out of the alternative.

PS  Make sure you get your Hematocrit tested, your symptoms sound like maybe maybe? like low red blood cells?

God bless you with health,

L

I’ve had a J Pouch for over thirty years. Three step procedure. It really  changed my life for the better. I was never in remission for thirteen years before that, hospitalized every three years. I was also diagnosed as a teenager, it was tough. Only problems I’ve had, is a blockage three years ago from scar tissue, and a partial blockage last week. My life has been pretty normal.

Hi. Please don't lose hope. You're so young and it will get better. I had my pouch surgeries (2 step) in 1993 at the age of 23. I have had no issues to speak of and now I'm 50. I have some minor things happening now due to the age of the pouch and I think I just have a stricture, which is easily treated. I was diagnosed with Colitis at age 18 and it was very difficult to finish my degree in English and Dance, but once finished I had my surgeries. I have had a child by planned c-section with no issues (loved being pregnant). I have had a professional consulting career and traveled the globe with Price Waterhouse and IBM. I've worked and lived and visited over 36 countries! I've been married and divorced twice because I suspect they couldn't keep up with me . Message me if you are still worried about this. Personally, I couldn't have had this fabulous life if I didn't have the surgeries. I'd be sick and hardly able to work or have a family.

xo

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