Success stories to give me hope

We've all been there man. I was there 2 years ago. I just had my takedown surgery 10 weeks ago and I can tell you life is pretty good. I'm definitely not normal like I was before I had UC but I'm ok. I just got back in the gym 3 weeks ago and my workouts are getting better and better. I can only speak for myself but a jpouch isn't that bad at all. I'm still trying to figure it out but so far I can eat just about anything. I don't have accidents. I'm pretty normal except I poop more often. I think you'll be ok. When you get healthy again just make sure you don't take it for granted. Eat clean. Workout. Really take care of yourself. It's sad that for most people something bad has to happen for them to really take care of themselves. Just remember that although this site is full of nice people with good advice. It's also full of people with problems. Not everybody has problems with a jpouch. In fact most people don't.

Hey Fredz .

I had quick onset UC in 2019 although I feel I probably had it alot longer.Ive had the 3 step jpouch and life feels almost normal but alot better than having UC.the drugs and uc were far worse than the jpouch but it's not an easy journey but non of us asked for it and at the end of the day I find the jpouch far better than the bag or UC.I had my takedown in November and now I work and go out and feel far more energy than with the UC as the UC means your whole body is malnourished and diseased.I feel the best ever now.

It gets so much better! I felt so depressed when I learned I needed surgery. Now, I live a regular life and barely think of my pouch.

I have had my j pouch for 4 years and it is a complete success.  I've never had issues such as pouchitis, fistulas or obstructions.

The only issues I had were hemorrhoids and nighttime incontinence. I have the hemmorroids under control with Ilex paste and nighttime incontinence under control with 2 Imodium before bed.

@Jaydog posted:

We've all been there man. I was there 2 years ago. I just had my takedown surgery 10 weeks ago and I can tell you life is pretty good. I'm definitely not normal like I was before I had UC but I'm ok. I just got back in the gym 3 weeks ago and my workouts are getting better and better. I can only speak for myself but a jpouch isn't that bad at all. I'm still trying to figure it out but so far I can eat just about anything. I don't have accidents. I'm pretty normal except I poop more often. I think you'll be ok. When you get healthy again just make sure you don't take it for granted. Eat clean. Workout. Really take care of yourself. It's sad that for most people something bad has to happen for them to really take care of themselves. Just remember that although this site is full of nice people with good advice. It's also full of people with problems. Not everybody has problems with a jpouch. In fact most people don't.

Thanks! I have to say get kinda sad when people say «I am definitely not normal». What are they differences between you now with a j pouch and a normal person? What are your limitations and struggles?

@Former Member posted:

Hey Fredz .

I had quick onset UC in 2019 although I feel I probably had it alot longer.Ive had the 3 step jpouch and life feels almost normal but alot better than having UC.the drugs and uc were far worse than the jpouch but it's not an easy journey but non of us asked for it and at the end of the day I find the jpouch far better than the bag or UC.I had my takedown in November and now I work and go out and feel far more energy than with the UC as the UC means your whole body is malnourished and diseased.I feel the best ever now.

That’s good to hear. Same question to you: Why don’t you feel like a normal person? What are the struggles you have with a pouch that seperates you from a normal, healthy person?

@Kangaroo posted:

It gets so much better! I felt so depressed when I learned I needed surgery. Now, I live a regular life and barely think of my pouch.

I have had my j pouch for 4 years and it is a complete success.  I've never had issues such as pouchitis, fistulas or obstructions.

The only issues I had were hemorrhoids and nighttime incontinence. I have the hemmorroids under control with Ilex paste and nighttime incontinence under control with 2 Imodium before bed.

I thought incontinence was only a problem in the beginning...That’s depressing.

@Fredz posted:

Thanks! I have to say get kinda sad when people say «I am definitely not normal». What are they differences between you now with a j pouch and a normal person? What are your limitations and struggles?

Keep in mind my jpouch is new. My struggles right now are just that I go to the bathroom more. If I go out to lunch and go shopping or something then I know full well at some time I'll have to use a bathroom. I guess it's not really a huge deal but that's not normal for me. But like I said man it's really not that bad. And who knows. The fact that you have your colon out may save you from colon cancer some day and that's a good thing.

But I can honestly say that it's not bad with a pouch. Just a few new things to get used to. I go to the gym. I go to work. I go out to eat. I really do what I want.

40yrs ago a j-pouch saved my life, there’s nothing better than that! You work with what you got and find ways to make your life better!

@ytcrockpot posted:

40yrs ago a j-pouch saved my life, there’s nothing better than that! You work with what you got and find ways to make your life better!

That’s great to hear! My I ask if you have lots of energy and are able to work out hard, and basically live a normal life? What do you have to do different or struggle with because of the j-pouch that normal people don’t? Like what’s the difference between being healthy and having a j-pouch? Since you have had it for so long I would love it for you to go into more depth and share some tips/tricks

@Fredz posted:

That’s good to hear. Same question to you: Why don’t you feel like a normal person? What are the struggles you have with a pouch that seperates you from a normal, healthy person?

For me the colon hides alot or takes alot of punishment .in a person with a colon you can eat as much as you like of whatever you like but when the colon is removed if you over eat or eat spicy foods your going to be going to the toilet alot and your jpouch will be grumbling.it takes 2-5days for food to pass through a person with a colon but only 6-9 hours without a colon.but if your deciding weather to have a permanent bag or jpouch I would definitely try the jpouch.and I also developed depression at the same time as my UC and was put on Lexapro 10mg and that helped alot.but UC is by far the worst out of a bag or jpouch.

Each person's journey is different but there is a lot of positivity with J-pouch surgery. I have had mine for 6 years and no major complications. I have never had pouchitis and I am happy to the fullest! No regrets! The only major complication I have had is dehydration and constipation if I overeat. If I watch those things, I am great I am not even taking medication

You Will be fine too, sending light your way!

Fredz I'm very happy with my jpouch.im nearly 3 months out and feel great.mate it takes time  but it's worth it .

Hi Fredz

i was planning to give an update on my recovery but when i read your story i thought it's better to respond to you.

I fully understand the situation you are in now. it just sucks, but you gotta stay strong. your life will get better even with all the inconveniences. trust me we've all been there. I will tell you my story that you may gain some hope from

April 2018 I suddenly fell ill. a month later I had emergency surgery. turned out to be fulminant uc. I was never sick before, so you can imagine that my life was turned upside down. I thought of all the things I couldn't do anymore but you have to keep going. I thought if it wasn't for myself then for my kids and wife. I've had 3 operations of which the last was 18 months ago. currently i still have to learn what is best for my pouch. what kind of food, when to eat, medicines, how I can best empty my pouch. it's a process of finding out what works best for you. by that I mean how you can get the pouch under control. currently I go to the bathroom about 4-6. i am using 6 immodium. every month I feel better physically. there are always relapses that you have to go through. those were the moments where I sometimes got depressed because you think you have it under control and then boom ... not.

Now I finally dare to say that things are getting better and that I am also confident to pick up my old social life (after covid of course) playing football, drinking with my friends (even though I haven't been drinking alcohol for a long time

So Fredz it is tough both physically and mentally. but that doesn't mean it's impossible. You have read before that time is the best medicine. it really is. keep a (food) diary and find as much information as possible on this great site. it helped me a lot. You can do this.

greetings
Alex

@Fredz There have been many threads here over the years about success stories. If you do a search (using the little magnifying glass icon) for the word “success” some of the results will be exactly what you’re looking for. Many of those folks can’t post on this thread because they are no longer spending time here in a support forum - their successes have led them to other places and new adventures.

Here are 2 such threads, there are many others.  You will find more success stories reading the old threads than starting a new one.

https://www.j-pouch.org/topic/...ess-stories-please-1

https://www.j-pouch.org/topic/success-story-2

Oh wow, so very sorry you're going through this.

J-pouch surgery changed my life. I was homebound so much, and if I had somewhere to go where there would be no restroom facilities, I would go the entire day without eating so I wouldn't have to panic to find a restroom. Needless to say I was a skinny beanpole, low energy, and had difficulty keeping up with my two small children. Every drug I tried did not work long term. After the surgery and eventual recovery, I can go anywhere, do anything and eat everything. As long as I take a fair amount of Metamucil so I'm not going watery diarreha all the time. I got my life back and am so glad I had J-pouch surgery. Good luck to you!

I had my j-pouch surgery several years ago after dealing with UC for 30 plus years. I have only had one problem with my j-pouch about a year after getting it. That was taken care of.
I am so happy with my j-pouch. It’s made my life so good. I golf 3-4 times a week, kayak, hike, and enjoy almost all my favorite foods. I am in my sixties (oh no) !
I know everyone is different and have limits but my suggestion is after you heal from surgery, get out and enjoy life  

@ceew posted:

I had my j-pouch surgery several years ago after dealing with UC for 30 plus years. I have only had one problem with my j-pouch about a year after getting it. That was taken care of.
I am so happy with my j-pouch. It’s made my life so good. I golf 3-4 times a week, kayak, hike, and enjoy almost all my favorite foods. I am in my sixties (oh no) !
I know everyone is different and have limits but my suggestion is after you heal from surgery, get out and enjoy life  

A reminder: Just remember to take it easy though

I am also in my young 60’s and do similar activities as Ceew, with the exception of golf.  I snowshoe when we have snow, hike or go for long walks (in the snow today), bicycle and kayak.  When I know I will be out for a while, I take Lomotil so that I don’t need to need a bathroom.  It helps me a lot.  Once I have both my Covid vaccines, I plan to go back to the gym with my husband so that I can get back to cycling and rowing until the weather gets better.  We are both retired and have been more active with Covid, exploring the beautiful state of Connecticut.

I agree that this is a time to “get out and enjoy life” as much as you can!  

I forgot to mention in my comment: I was around your age when I got the first surgery, I was 22 when I got the 2 step surgeries done in a 2 month span. I am 28 now and happy

I have had my j-pouch since 2003.  I had a rough start and some bumps along the way, but here I am, 17 years later.  I am healthy, fat and sassy😀.  I had toxic megacolon due to a UC flare, so I feel every day is a gift. I live a normal life-I work hard, play hard and do what I want. I just poop more than the average person.  I am thankful for my j-pouch.

I second whoever posted about success stories quickly move off of groups like this.  Most people call them a support group and if you are doing well you don't need more support..... I like to check in sometime and lurk around.  It is really helpful.  My story started when I was diagnosed at age 19-- first bout was probably at age 17 with colitis but like many of up I had c-diff and after that treatment I was better for just over a year and it was assumed that it was just simply due to antibiotic treatment.  Often had more bowel issues prior to that, but,  hey-- many do.   After having more bleeding and anemia and  syncope at age 19 diagnosis was made and remission after just a couple of weeks of prednisone.   Meds in the early 1990's were too expensive at the time for me without insurance and after about 6 months without any problems I did not take meds for a few years with only intermittent problems with stooling that were largely ignored (youth, invincibility, finances, etc--we all have reasons).   bad flare at around age 27 and then followed up by being a model patient after that.   It  worsened over the years but finally the last year it started to worsen and without really realizing how bad I actually felt.  I was just resigned to the issues.  I felt bad but was not bleeding- just stooling 20+ times a day.   by that time I was at every 6  month colonoscopies and at that routine scope the GI doc thought I was lying about not passing out and functioning.  I was admitted with high dose solumedrol and had remission and felt good but returned to stooling 20 + times after just 2 days off IV steroids.  I was eating over 15,000 calories a day and still losing weight.... lost from 240 to 165  ( I'm 6'3")  and i was re-admitted for about a month.  Steroids worked and I felt good but after 23 days in hospital I managed to get transferred to Mayo in arizona.   Dec 23 2008 - I got the first of what wound up being a 3 stage repair.  I had such poor nutrition and large steroids they could not repair in the expected one or two steps.  When i was first diagnosed i had said i would rather be dead than have a bag.  I was scared about all the complications- possible incompetence, but i had a family and  had 5 kids- one adopted only a week before going into the hospital.  Having that ostomy bag was the first time in YEARS that I had felt good.  I gained weight, finally had take down stage 3 after 7 months.         NOW--- 12 1/2 years later -- after 2 more kids, I still feel better than the 5 years prior to surgery.  Only take some imodium or lomotil... no complications.   Even chronic joint pains stopped.  I got good and healthy and fit..... then like many of us now somewhat over weight.    Really no food restrictions.     Food does go through fast- real high sugar foods will make it go through faster-- 4 hours later.   some things slow down transit time-- rice, noodles, cheeze.    I tried all the fiber tricks but mostly than makes more gas.    There is NO trying fart after a j pouch-- too risky-- so if i get gassy-- just have to sit down to stool / pass gass.   I still have an occasionaly "phantom ostomy burn" type pain.     I follow up with surgeon every 2 years for a scope to look at pouch but it no longer needs a prep!!!   Soooo over 12 years without having to have a full bowel prep!!   

There is really light after surgery for MANY MANY people.   I have now met 10-12 others-- one  with an early form of j-pouch done back in the 1980's..  still going strong.    Many of those people may be on the forum here.    I have realized that living with this for so long and now doing well will allow me to support people in a way that I could not when i was in the middle of the crisis that usually accompanies getting out surgery.   

Stay strong!!!    LIVE WELL!   

@Former Member posted:

A reminder: Just remember to take it easy though

@Former Member posted:

A reminder: Just remember to take it easy though

Absolutely, take it easy!  I wasn’t  suggesting to go crazy.  I didn’t mean to make it read that way. Not my intent at all. Your body has to heal. You and your physician should  be the judge of that.

@ceew posted:

Absolutely, take it easy!  I wasn’t  suggesting to go crazy.  I didn’t mean to make it read that way. Not my intent at all. Your body has to heal. You and your physician should  be the judge of that.

I believe we talked in the past and you mentioned how you had hernias or something??? Are you doing better???

No.  No hernias.

@ceew posted:

No.  No hernias.

Did you have a blockage or bowel twist???

Twisted j-pouch.

@ceew posted:

Twisted j-pouch.

Yeah I remember now. We talked about you taking things easy and shortening workout times, Did you do so???

Well I am way past that time. I just do whatever seem right.

hello. Same age as you are here. When i got my two step surgery, i was 19. after my first surgery with the loop, i was bad- depressed hopeless and all that... now after almost 3 years, I’ve been feeling a lot better. If you don’t consider me being at the hospital for emergency right now, i’ve never had to come running to the hospital for constipation or anything. i had a lot of problems too of course but right now all i remember is the good memories because i’m alive and well.

give yourself time, you’ll be getting better and better. sometimes there are roadblocks but you can pass them!