Hi, I’m new hear and am wondering is it ok to do colon irrigation with a j pouch. I have come across different opinions. I do irrigation about twice a week with 1 liter of reverse osmosis warm water not a fleets. It has changed my life. I can go out without accidents and my appetite has improved. Does anyone else do this?
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I personally drink as much water as I can in the morning before I eat and that flushes me out to the point where my poop is clear.
A liter may be excessive, since there’s no colon, just a little J-pouch. Some folks here report a happy life with regular pouch irrigation, but most prefer the “normal” toileting that the J-pouch was intended to offer. I think of irrigation as a good option to have if I’ve exhausted all other solutions.
@Mary4130 posted:Hi, I’m new hear and am wondering is it ok to do colon irrigation with a j pouch. I have come across different opinions. I do irrigation about twice a week with 1 liter of reverse osmosis warm water not a fleets. It has changed my life. I can go out without accidents and my appetite has improved. Does anyone else do this?
By irrigation, do you mean using an enema? I'm really curious about what you're doing and might like to try it. Can you give me more details?
HI! I use my bidet this way. If you relax the muscles, the water will enter the canal. It helps the rest of the Jpouch release contents that would otherwise not have fallen down to the bottom yet, so I don't have clustering, because I am able to coax my jpouch to release everything in one shot. I also feel alot cleaner when I do this, but it's likely just in my head
@RenReeves posted:HI! I use my bidet this way. If you relax the muscles, the water will enter the canal. It helps the rest of the Jpouch release contents that would otherwise not have fallen down to the bottom yet, so I don't have clustering, because I am able to coax my jpouch to release everything in one shot. I also feel alot cleaner when I do this, but it's likely just in my head
I have done this as well when there are frequent small poops. It gets them all out at once and yes, feels cleaner.
A liter seems an awful lot. My specialist advised 200ml of lukewarm water.
But I was given this advice because my j-pouch is malfunctioning and sometimes doesn’t empty on its own.
@Kushami posted:A liter seems an awful lot. My specialist advised 200ml of lukewarm water.
But I was given this advice because my j-pouch is malfunctioning and sometimes doesn’t empty on its own.
I really think you doing what Sara Marie suggested or drinking more will help! I drink water before, during, and after every meal and drink throughout the day and that helps empty out everything.
I have had my J pouch since 1992 when I was 14 yrs old and have never had to do this. I drink plenty of water throughout the day. I’m not like back to pre colon days but got to the bathroom about 4 times a day. Sugar and soda seem to be what use to mess me up.
@FrankieAK posted:I have had my J pouch since 1992 when I was 14 yrs old and have never had to do this. I drink plenty of water throughout the day. I’m not like back to pre colon days but got to the bathroom about 4 times a day. Sugar and soda seem to be what use to mess me up.
This is lucky! You have a pouch that works well.
The doctors at Shands Hospital told me that when you have the surgery at a younger age it tends to do better. Of course I have pushed the envelope eating anything and everything lol. Yes I paid for it dearly but it is still working lol
@FrankieAK posted:The doctors at Shands Hospital told me that when you have the surgery at a younger age it tends to do better. Of course I have pushed the envelope eating anything and everything lol. Yes I paid for it dearly but it is still working lol
I was wondering about that. I didn't have the surgery until I was 36 and my body didn't adapt that well, though it is definitely not the worst. I should probably count myself as lucky, too.
It was definitely tough in the beginning as I went back to school a week after my reversal. I had to learn how to hold it and had many accidents at school. Luckily I had a great group of friends that would help me. It was definitely a tough couple years after that. The one thing that I love and miss is eating popcorn. I can have a little now but not to much. Both my son and daughter had to have j pouches at age 15 because they tested positive for FAP like me. My son didn’t fair well as his surgery got botched and lost most of his small intestines as well. It was very tough for him to cope with. He killed himself a couple of years ago. He just didn’t want to live anymore. My daughter has been doing pretty good as long as she eats right but she doesn’t drink enough fluids. It is definitely a life altering surgery.
I am very sorry about your son. Did the medical community assume any responsibility for what they did to him? How long did he live after the botched surgery?
@FrankieAK posted:It was definitely tough in the beginning as I went back to school a week after my reversal. I had to learn how to hold it and had many accidents at school. Luckily I had a great group of friends that would help me. It was definitely a tough couple years after that. The one thing that I love and miss is eating popcorn. I can have a little now but not to much. Both my son and daughter had to have j pouches at age 15 because they tested positive for FAP like me. My son didn’t fair well as his surgery got botched and lost most of his small intestines as well. It was very tough for him to cope with. He killed himself a couple of years ago. He just didn’t want to live anymore. My daughter has been doing pretty good as long as she eats right but she doesn’t drink enough fluids. It is definitely a life altering surgery.
Holy #$%#!!!! I am sorry to hear about your family!!! I am sorry about your son!!!! How are you doing??? How is the family?????
Nope no responsibility at all. My ex took him to a doctor that had never done this type of surgery. Long story short she was way in over her head. Nicked part of his small intestines and killed the blood supply to roughly 3/4. So she had enough to barely connect him back up. He lived for 7 years he was just tired of drinking meds to slow it down and stop the butt burn. He pretty much lived on protein shakes mixed with pectin.
@FrankieAK posted:Nope no responsibility at all. My ex took him to a doctor that had never done this type of surgery. Long story short she was way in over her head. Nicked part of his small intestines and killed the blood supply to roughly 3/4. So she had enough to barely connect him back up. He lived for 7 years he was just tired of drinking meds to slow it down and stop the butt burn. He pretty much lived on protein shakes mixed with pectin.
That is awful!!! I hate when a story has a bad ending. I am so sorry 
https://www.j-pouch.org/topic/...0#727263740898809850
Im doing good just pushing through life. Family is still messed up but dealing with it. My family has FAP so I’m use to dealing with death. I’m the oldest at 47. If you don’t have your colon removed in my family you won’t live past 45 as cancer will kill you. I am the oldest living person on my dad’s side of the family as cancer took them all in their 40’s. So yeah death is pretty much a norm for me. I have younger siblings that won’t even get tested for it so they are approaching 40 so it’s just a matter of when they die not if.
Well there is a silver lining to my son’s death. He changed some people’s lives as he was an organ donor. There is a young girl that is able to see now with his eyes. A teen boy has his heart and a couple young people have his kidneys and a lady has his liver plus countless bone graft patients. So it was awesome meeting his eye and heart recipients.
@FrankieAK posted:Well there is a silver lining to my son’s death. He changed some people’s lives as he was an organ donor. There is a young girl that is able to see now with his eyes. A teen boy has his heart and a couple young people have his kidneys and a lady has his liver plus countless bone graft patients. So it was awesome meeting his eye and heart recipients.
Yeah I cannot imagine how hard that must be for you! That sounds terrible. FAP is so much more serious than IBD, i wish there was more awareness about FAP and more support groups for it. If anything The Crohns and Colitis Foundation should add FAP to the organization since FAP people need a community too.
Did your parents have the FAP Gene mutation or did that gene mutation star with your grandparents??? I am sorry your siblings will not get tested, some people prefer to be in denial because they think the problem will go away or they just do not want to deal.
Oh good! That must feel great! Do you still keep in touch those people???
It came from my great grandmother on my dad’s side. Out of 14 great aunts and great uncles 2 didn’t have the FAP. All the rest died in their early 40’s. Yeah FAP is a silent killer it’s usually cancer by the time most people find out. I was lucky as my mom knew the family history of my dad’s side. Tested me at 12 and surgery 2 years later. Huge life changing surgery. I didn’t let it slow me down though I have done everything that I ever wanted to do. FAP will not define who I am and it won’t beat me.
That's right, Frankie Alaska! None of us are our conditions but sometimes we let them take us over. What a healthy psychological response you have had. Guess your mom wasn't able to convince your sibs to take a similar route. Maybe they witnessed your first 2 years after takedown and that was too much for them. 2 years seems like a long time to a kid.
You know I kept it all to myself. No one knew what I el was going through. If I had accidents at night I cleaned everything up and washed my stuff. Mom never knew until years later when we’re talking about it. I kept spare clothes with me at school all the time. I soiled myself in class because teachers wouldn’t let me go to the bathroom but I didn’t let it slow me down. I played baseball in high school through it all even got a scholarship to FSU for baseball. I don’t let things control my life.
Remember if life gives you lemons make some lemonade and enjoy life. No one or nothing slows me down.
I skydive, scuba dive and race bikes and go karts. I live a pretty adventurous life and to the fullest. Life is to short to let a genetic disease slow me down.
@FrankieAK posted:You know I kept it all to myself. No one knew what I el was going through. If I had accidents at night I cleaned everything up and washed my stuff. Mom never knew until years later when we’re talking about it. I kept spare clothes with me at school all the time. I soiled myself in class because teachers wouldn’t let me go to the bathroom but I didn’t let it slow me down. I played baseball in high school through it all even got a scholarship to FSU for baseball. I don’t let things control my life.
Remember if life gives you lemons make some lemonade and enjoy life. No one or nothing slows me down.
I skydive, scuba dive and race bikes and go karts. I live a pretty adventurous life and to the fullest. Life is to short to let a genetic disease slow me down.
Oh shit! Great Grand-mother?!?! SHIT!!!! And only two did not have FAP?!?!!?! DAMN!!! That is crazy!!! FAP is pretty serious!!! And DAMN!!! you had surgery had 14!!! Thank God your mom was very good!! I could not imagine having this surgery at 14!!! You were high school at that point probably. I know that was hard!!! I love how you did not let FAP rule your life.
Did you have good support system???
Yeah teachers are assholes!!! Even now!!! Its like, why not let us go to the bathroom?!?! WTF! Why make us get a doctor's note just for the fucking bathroom, makes no sense! Teachers are soo selfish!
Schools have a special education program now for people that need special accomodations, too bad that was not a thing back then .
DAMN!!! You played basketball?!?! ANd went to FSU for basketball!?!?! Thats whats up!!! Was it hard playing with a J-pouch and staying hydrated??? And did you carry wipes and poop barrier cream with you in high school and currently??? I always keep wipes and calmoseptine cream in my purse and in my bathroom!
I am glad you still had a family. I talked to a girl on here with FAP and she does not want kids because she does not want to continue the FAP cycle but thats letting FAP run her life. I am glad you did not let FAP run your life.
There is a fertility test that allows doctors to extract eggs and implant the healthy eggs that do not have the mutation and have only healthy embryos but thats expensive AF!
Do you miss basketball??? Do you still play???
And damn you do it all!!! Do you want to go in a hot air balloon someday???
Hydration was the tough part playing baseball. I don’t use wipes or any kind of cream. I used the cream for the first couple years but it got better. I was a catcher when I played baseball. I just didn’t eat before a game or before I raced. After 30 years I have gotten pretty in tune with how to stay hydrated and healthy. I do occasionally have to take the antibiotics for my pouch. But that is usually because I eat whatever like soda candy and I love hot Mexican food. Yes it burns going in and coming out 🤣🤣. I did have a great group of close friends in high school that watched out for me. Been in a hot air balloon a bunch down in FL Whalen I worked at Disney. They are a blast and very peaceful. I have actually jump from one with my chute. Low altitude jumps are a blast.
@FrankieAK posted:Hydration was the tough part playing baseball. I don’t use wipes or any kind of cream. I used the cream for the first couple years but it got better. I was a catcher when I played baseball. I just didn’t eat before a game or before I raced. After 30 years I have gotten pretty in tune with how to stay hydrated and healthy. I do occasionally have to take the antibiotics for my pouch. But that is usually because I eat whatever like soda candy and I love hot Mexican food. Yes it burns going in and coming out 🤣🤣. I did have a great group of close friends in high school that watched out for me. Been in a hot air balloon a bunch down in FL Whalen I worked at Disney. They are a blast and very peaceful. I have actually jump from one with my chute. Low altitude jumps are a blast.
Yeah Hydration is always hard. And damn! You do not use wipes or cream?!?! Damn you are lucky!!! How many times a day do you poop???
That is smart how you did not work out before a game! I do that too, i never eat before I work out to avoid problems.
Do you ever get pouchitis???
Do you get check-up pouchoscopies???
I am glad you had friends watch out for you in High school. You still talk to them???
DAMN! Your brave!Hot air balloons can be scary!!!
You worked at Disney?!?! That is soo cool! I got there every two weeks since I have an annual pass.
I have upper and lower scopes every year because of the FAP. I can still get cancer so I have to stay on top of the polyps. I have only had pouchitis once. My issue is small intestine bacteria overgrowth (SIBO). I usually get it every 16-18 months. Low sugar intake no soda and as little alcohol as possible is the key to not getting pouchitis. I also eat as much fiber as possible. I take Metamucil everyday around 3pm to clean out my intestines. This seems to be the best thing that I do to stay healthy.
@FrankieAK posted:I have upper and lower scopes every year because of the FAP. I can still get cancer so I have to stay on top of the polyps. I have only had pouchitis once. My issue is small intestine bacteria overgrowth (SIBO). I usually get it every 16-18 months. Low sugar intake no soda and as little alcohol as possible is the key to not getting pouchitis. I also eat as much fiber as possible. I take Metamucil everyday around 3pm to clean out my intestines. This seems to be the best thing that I do to stay healthy.
Oh good! I try to advertise to people to get checked but some people do not want to get checked unfortunately.
Do you know if you still have your rectal cuff???
How many times a day do you poop???
I still have rectal cuff and I usually go to the bathroom 4-5 times a day but that really depends on what I eat. If I eat salad then I will go more. I eat bananas and applesauce every morning with 32 oz of water and that seems to set a good tone for the day.
@FrankieAK posted:I still have rectal cuff and I usually go to the bathroom 4-5 times a day but that really depends on what I eat. If I eat salad then I will go more. I eat bananas and applesauce every morning with 32 oz of water and that seems to set a good tone for the day.
Oh that makes sense. I see a lot of people on here have their rectal cuff. Have you ever gotten polyps in your rectal cuff or anywhere else???
Oh good!!! I am glad you have a set schedule!!! And your bms are low!!! Your lucky hon!!! No wipes, no poop barrier cream, no bidet!! Low bowel movements!!! Your lucky AF!!!
I get polyps in my duodenum. BM’s weren’t always that low it’s just gotten less with time. Body just got use to the j pouch but it’s taken many years to get to this point. I noticed when I was younger that the less I used the cream my butt got tougher but could also be the 40mg of Prilosec that I have taken everyday since I had my procedure too.
@FrankieAK posted:I get polyps in my duodenum. BM’s weren’t always that low it’s just gotten less with time. Body just got use to the j pouch but it’s taken many years to get to this point. I noticed when I was younger that the less I used the cream my butt got tougher but could also be the 40mg of Prilosec that I have taken everyday since I had my procedure too.
Oh that sucks. I am glad you do not get them in your rectal cuff! I tend to worry about FAP people having their rectal cuff but most FAP people have their rectal cuff.
That Prilosec sounds pretty good! The toilet paper is too tough on my hole lol. I gotta have my wipes and poop cream lol.
I have had 33 years to toughen up my hole 🤣🤣
@FrankieAK posted:I have had 33 years to toughen up my hole 🤣🤣
Do you celebrate your anniversaries???
My 10 year is coming up on October 13th!!! I am going to celebrate!!!
Nope never have. It was the worst summer of my life.
@FrankieAK posted:Nope never have. It was the worst summer of my life.
Yeah I get it. But it also gave you a new life too! Over 30 years of peace. Might be good to celebrate that peace!
@FrankieAK posted:Nope never have. It was the worst summer of my life.
I dont think I got answer about this or not. Do you still keep in contact with the people that have your son's organs???