Hi Eric. I am 68 years old and had my takedown about 13 months ago. The first thing I would say is that you have to be patient. I know that’s not easy, but in the long run it will be beneficial. Going to this website is a good start because you will pick up some good ideas that might help you in your recovery. I can tell you that from my experience it is not a linear progression, you will have some good days and some bad days. I will be happy to share some of things I have tried nutritionally, but you have to realize that your pouch is unique to you, so you will have to try different things. You are on the right track with your thoughts on hobbies and new interests. I started walking about an hour a day right after the takedown and continue to do that about 5 times a week. Do whatever your body allows you to do in the beginning. I started studying Spanish a few years ago and continue to this day. Even when I had bad days, I always looked forward to learning. Try to envision yourself as healthy and vibrant a year from now and I believe you will get there. Good luck and good health.

Try to envision yourself as healthy and vibrant a year from now and I believe you will get there. Good luck and good health.  Sound advice! My nutritionist and my PT who deals with pelvic floor issues have been a godsend. I spoke to my doc’s nurse today (I had this fear of the pouch filling up and being compromised, that would be really bad) She reassured me that I’m doing the right stuff but I should walk more.  I get to work from home Try to envision yourself as healthy and vibrant a year from now and I believe you will get there. Good luck and good health.high is great but it’s many hours of just sitting. I need to be better about taking time for me. Learning a language sounds great. I wonder If hobby shops still carry those balsa wood plan you put together. Anyway, it was delightful to hear from someone in my age group.  Take Care. Eric

Today was so bad I wish I didn’t do the surgery.  I wasn’t cancer, but I don’t if I can keep doing this.   I just want to go to sleep and not wake up.  I’m not allowed and pain meds because they are worried about illious.  And so it goes.  I’ll see the surgeon Thursday who has the personality of a surgeon. Maybe I should see a GI person.  

Hey Eric, I'm 6 weeks in with new j pouch and I feel ya. Some days are so tough!! I'm 54 and got diagnosed about 10 yrs ago. I had same thoughts as to if I made the right decision and would love to have my bag back. But then today happened and I seemed to turned the corner and finally got some relief. (Thanks to metamucil)

What a game changer it has been today for me. I developed ileus 2 days after surgery, had extreme butt burn, and had to have pouchoscopy already. Pouch looks great but Dr found a "web" in me restricting my output with pressure and pain. It's been a rough 6 weeks but things are looking brighter now! I hope you get to this point also!! Stay strong!!

I am so happy I discovered this life affirmation group!  It really has made this condition more tolerable.  

Hi Eric, I am in Seattle, too and am 64, like you. I have had my pouch for 11 years and can tell you that it is an adjustment that takes time to work out for each person.  I have found that life with a J pouch is not easy, but it is managable. The low FODMAP diet has helped me (especially avoiding onions and using the greens of green onions/leeks for cooking instead),  When I travel or go camping, I chew pepto bismol 1-2 x/day to make sure my GI system stays calm.  If I have an irritating time at home, I reach for herbal supplements like Dysbiocide and FC-Cidal (you can get them on Amazon) and take them. I exercise regularly, try to eat fresh salads almost every day (chewing it well), and love, love, love my bidet that I installed at home.  With my J pouch, I have run half marathons, gone backpacking, and on kayak trips (just finished one). I think that you will find your way to manage your pouch, but it takes time. It has been about a month since your post. How are you doing now?

You just gave me hope.

A cofactor (BTW) is lifelong depression

My biggest problem is emptying my pouch. If it's 100% liquid (which I don't want) I have to squeeze the right muscles to get it out. Even them I'm not 100% sure I'm empty. The PT showed me a trick. Get on all fours on your bed and get you butt as high up as you can. That way the gas floats to the top.  When you empty, the fart at the end tells you that you're empty.  Thank God I get to work from home. at work there is one bathroom where the office staff are for 70 people. When this is more under control, I'll go back as there is a single occupancy bathroom on the first floor

I have a nutritionist that recommends I make a yogurt based shake with some berries, a Banna and pulverized Chia & Flax seed. It's her take that these will help thicken things up. It works most of the time but sometimes I do reach for the Metamucil.

I put off surgery until last October (I was 63)  I had fantastic quality of life. I worked out with a personal trainer at least three times a week and didn't shy away from short sleeve shirts. I ran 1/2 marathons, did Warrior Dashes and the Chicago Urbanathalon (A half marathon with challenges every mile).  For the 1st time in my life (This started at 50) I was actually lean and muscular. Didn't hurt the marriage either:-) I was about 150 and my body fate was like 4 percent.

So now it's building my weight and energy back up. I'm 126 now. Bless you for all you have been able to do.  I'm using dumb bells for exercise and go for at least a 20 minute walk during the day.

It's hard on the ones we love: My partner does laundry, is my health care worker, takes care of the dog & cat.  (Part of it is contyrol as no one does thing "right."  I am doing more and more and do a big cleaning of the whole house on Fridays.

You are amazing! Thanks for letting me vent. 

Nice to connect with a fellow Seattle person.  If you ever have any mote wisdom, please share

I am glad I can give you hope, Eric. You seem like a fit and healthy guy to start with and that also is great to have going into life with a J pouch. I learned the gas trick, too, but do it while lying down and doing a type of "bridge pose" for yoga, which is to be on your back with knees bent and feet on the floor/bed and lift your butt up so it is above your chest. This lets any stool flow with gravity back down to the sm intestine and lets the gas come up to the anus, where it can be expelled. (Sorry to be so graphic, but thought it would help explain and visualize). This minimizes the chance that you will have an accident while expelling gas.

Honestly, I think gas causes the most problems for people with a J pouch, because as you said, in public we cannot be doing these contortions!  I try to figure out what causes the most gas to me and avoid it, which is why I follow the low FODMAP diet. I don't normally drink carbonated drinks but make an exception for beer!!!! Also, I drink hot water/warm water throughout the day and that is really soothing to my gut overall and helps hydrate me. You could probably do mint tea if you find plain hot water as boring as most people do. (Mint has a soothing affect on the bowels.)

As for pouch emptying, it is not a problem I have, but I remember my GI doctor talked about getting a little step like they sell for toddlers to reach the sink for handwashing. She said to put in in front of the toilet and put my feet on it while I am sitting on the toilet. This raises the legs a bit and gets the body in more of a "squatting" position to facilitate emptying the J pouch.BTW, it is recommended for people WITH colons, too, because modern day toilets are really not ideal for complete bowel-emptying.

When I feel down about my J pouch or just super irritated (because of the bathroom trips, loose stools, the sleep interruption, and all of the toilet cleaning I have to do), I try to remind myself that there are lots of people WITH their colons who also struggle. Mostly, I try not to focus on the irritations because you can get stuck there and ruminate in an unhappy state. I try to remind myself to vent if I need to and then move on! I know that irritation is not the same as the underlying depression you have, so please do not think I am equating them and telling you that you are not trying hard enough to have a positive attitude. I know that what you have is a medical condition and really feel for you, because that makes life more challenging, especially struggling to adapt to a new way of life.

I wish you well and don't hesitate to post to this group or reach out to any of us if you have questions. I still have tons of questions, even after 11 years of "J pouching"!

Thank you so much again. Eric

@RHolt posted:

I am glad I can give you hope, Eric. You seem like a fit and healthy guy to start with and that also is great to have going into life with a J pouch. I learned the gas trick, too, but do it while lying down and doing a type of "bridge pose" for yoga, which is to be on your back with knees bent and feet on the floor/bed and lift your butt up so it is above your chest. This lets any stool flow with gravity back down to the sm intestine and lets the gas come up to the anus, where it can be expelled. (Sorry to be so graphic, but thought it would help explain and visualize). This minimizes the chance that you will have an accident while expelling gas.

Honestly, I think gas causes the most problems for people with a J pouch, because as you said, in public we cannot be doing these contortions!  I try to figure out what causes the most gas to me and avoid it, which is why I follow the low FODMAP diet. I don't normally drink carbonated drinks but make an exception for beer!!!! Also, I drink hot water/warm water throughout the day and that is really soothing to my gut overall and helps hydrate me. You could probably do mint tea if you find plain hot water as boring as most people do. (Mint has a soothing affect on the bowels.)

As for pouch emptying, it is not a problem I have, but I remember my GI doctor talked about getting a little step like they sell for toddlers to reach the sink for handwashing. She said to put in in front of the toilet and put my feet on it while I am sitting on the toilet. This raises the legs a bit and gets the body in more of a "squatting" position to facilitate emptying the J pouch.BTW, it is recommended for people WITH colons, too, because modern day toilets are really not ideal for complete bowel-emptying.

When I feel down about my J pouch or just super irritated (because of the bathroom trips, loose stools, the sleep interruption, and all of the toilet cleaning I have to do), I try to remind myself that there are lots of people WITH their colons who also struggle. Mostly, I try not to focus on the irritations because you can get stuck there and ruminate in an unhappy state. I try to remind myself to vent if I need to and then move on! I know that irritation is not the same as the underlying depression you have, so please do not think I am equating them and telling you that you are not trying hard enough to have a positive attitude. I know that what you have is a medical condition and really feel for you, because that makes life more challenging, especially struggling to adapt to a new way of life.

I wish you well and don't hesitate to post to this group or reach out to any of us if you have questions. I still have tons of questions, even after 11 years of "J pouching"!

Renee your comment really helped me yesterday. Thank you for posting 😊