Hi I'm new here my first post, I'm 34, got it last month june 16, first 2 weeks was bad was up all night, terrible pain, i didn't know what hit me, takes time to get use to it, i hope it will still get better, 8 BM a day now, i started metamucil today one tablespoon in the morning to help with less BM
@Mark234 posted:Hi I'm new here my first post, I'm 34, got it last month june 16, first 2 weeks was bad was up all night, terrible pain, i didn't know what hit me, takes time to get use to it, i hope it will still get better, 8 BM a day now, i started metamucil today one tablespoon in the morning to help with less BM
Thanks for posting to my page first 
. And it will get better, do not worry. The first year is the hardest.
@Mark234 posted:Hi I'm new here my first post, I'm 34, got it last month june 16, first 2 weeks was bad was up all night, terrible pain, i didn't know what hit me, takes time to get use to it, i hope it will still get better, 8 BM a day now, i started metamucil today one tablespoon in the morning to help with less BM
And congratulations and welcome to the J-pouch Family
@Lauren Of Emerald City posted:And congratulations and welcome to the J-pouch Family
Thank you!
i was joking with my wife when i signed up here, that this is my new community/family they are the only ones who understand what I'm going through, she was like you will only see negative here, I'm trying to scroll away from the negativity here, this forum helped me alot the first few weeks, thanks to all who are keeping this group positive and giving me hope.
I had a very rough year went from mild UC just on mesalamine for years, to severe in day's, when i developed c-diff infection, probably from too much antibiotics for treating appendicitis twice.
long story will write more another time
Hello this is my first post here. I have had my J-pouch for quite some time. I was originally diagnosed with UC when I was 10 years old in the year 2000, (I am 30 now) and I got my J-pouch surgery when I was 12, in 2002. Currently I am happy with my J-pouch and am having only around 4 BM per day. A few tips I would give are stay away from corn, excess amounts of sugar, and I find eating anything with a lot of gluten would give me a flare up, causing a lot more BM's.
In the past I have had pouchitis and even an intestinal twist. (The twist was caused by excess abdominal exercise, as I was quite reckless in my teenage years.) But I was lucky and surgery was successful and I was able to keep my J-pouch. As for the pouchitis I am currently on the entyvio infusion and am having really good results.
Anyways, I could go on for awhile so I'll just leave it at this lol.
It has been interesting reading all of your experiences and it's nice to be a part of a community.
I was 19 years old - first and only flare of UC, diagnosis and then total colectomy all within 9 months. The disease spread so fast it caused my colon to start perforating which caught the doctors by surprise. J Pouch surgery was very successful (long may it continue!)
@Danr11 posted:Hello this is my first post here. I have had my J-pouch for quite some time. I was originally diagnosed with UC when I was 10 years old in the year 2000, (I am 30 now) and I got my J-pouch surgery when I was 12, in 2002. Currently I am happy with my J-pouch and am having only around 4 BM per day. A few tips I would give are stay away from corn, excess amounts of sugar, and I find eating anything with a lot of gluten would give me a flare up, causing a lot more BM's.
In the past I have had pouchitis and even an intestinal twist. (The twist was caused by excess abdominal exercise, as I was quite reckless in my teenage years.) But I was lucky and surgery was successful and I was able to keep my J-pouch. As for the pouchitis I am currently on the entyvio infusion and am having really good results.
Anyways, I could go on for awhile so I'll just leave it at this lol.
It has been interesting reading all of your experiences and it's nice to be a part of a community.
Thank-you for posting here first And dang?!! A twist??? Goodness! Do you think situps causes twists???
@Mark234 posted:Thank you!
i was joking with my wife when i signed up here, that this is my new community/family they are the only ones who understand what I'm going through, she was like you will only see negative here, I'm trying to scroll away from the negativity here, this forum helped me alot the first few weeks, thanks to all who are keeping this group positive and giving me hope.
I had a very rough year went from mild UC just on mesalamine for years, to severe in day's, when i developed c-diff infection, probably from too much antibiotics for treating appendicitis twice.
long story will write more another time
Yeah some can be negative but in general, here we support each other and build each other up. Being makes you feel like you are not alone and many people go through what you have been through as well. I have only been here for over a month and I have learned a tons of stuff from other people. Some people here have had their pouch close to 40 years and they give a lot of input.
@Lauren Of Emerald City posted:Thank-you for posting here first
I think everything should be alright in moderation. The twist happened quite a few years ago in 2006 and I was weight lifting at the time, but I have been fine since. For workouts I mainly stick to cardio now, because I've always been nervous about it happening again. Everyone is different though, I would recommend asking your doc as I am not too sure what exactly is OK.
Also this post is great for new members to post in, thank you!
@Danr11 posted:I think everything should be alright in moderation. The twist happened quite a few years ago in 2006 and I was weight lifting at the time, but I have been fine since. For workouts I mainly stick to cardio now, because I've always been nervous about it happening again. Everyone is different though, I would recommend asking your doc as I am not too sure what exactly is OK.
Also this post is great for new members to post in, thank you!
Thank-you for that statement. Do you still do situps and lift "lighter" weights???
@Lauren Of Emerald City posted:Thank-you for that statement. Do you still do situps and lift "lighter" weights???
Yes I still lift lighter weights, but I personally stopped doing sit ups. It might be fine for most, but my abdomen always feels a little abnormal after I do them. My workout of choice is cycling, elliptical, or jogging.
@Danr11 posted:Yes I still lift lighter weights, but I personally stopped doing sit ups. It might be fine for most, but my abdomen always feels a little abnormal after I do them. My workout of choice is cycling, elliptical, or jogging.
Sounds like a perfect workout system. And yeah, I do not blame you for not doing it anymore. We need our pouch to last forever right? Lol. My workout system is cycling, running, and definitely dancing!
@Danr11 posted:Yes I still lift lighter weights, but I personally stopped doing sit ups. It might be fine for most, but my abdomen always feels a little abnormal after I do them. My workout of choice is cycling, elliptical, or jogging.
I read an old story on here about someone that lifted heavy stuff with their J-pouch and the staples came out of their pouch. That sounds scary! Heavy lifting is definitely not good for us I see.
@Lauren Of Emerald City posted:I read an old story on here about someone that lifted heavy stuff with their J-pouch and the staples came out of their pouch. That sounds scary! Heavy lifting is definitely not good for us I see.
Yes that does sound scary! Living with a J-pouch is a very different life style than the average person and I find most people don't even realise it. I know whenever I start a new job I always have to have a conversation with the boss and let them know about the surgery I have had done. And how I will need to hydrate and use the washroom more than the average person. "Most" of the time they are understanding. Not to mention waking up in the morning and having to go to work with a sore butt is the worst. lol.
I'm glad I stumbled upon this website, as I can read about people with similar experiences.
@Danr11 posted:Yes that does sound scary! Living with a J-pouch is a very different life style than the average person and I find most people don't even realise it. I know whenever I start a new job I always have to have a conversation with the boss and let them know about the surgery I have had done. And how I will need to hydrate and use the washroom more than the average person. "Most" of the time they are understanding. Not to mention waking up in the morning and having to go to work with a sore butt is the worst. lol.
I'm glad I stumbled upon this website, as I can read about people with similar experiences.
At least have excuses not to lift heavy stuff and not do situps hahaa XD. And that is an excellent idea!! Letting bosses know everything, definitely makes life more easier I noticed. That way they do not make up their own assumptions like sneaking off to text or something when really you are pooping lol. But of course there is always some bosses that are literally buttholes about anything lol. Some people do not understand anything unless they are in that situation themselves unfortunately. And I bet you get tired too from pooping overnight as well. I hate getting up overnight to poop when I am tired hahaa XD
And yeah same!!! We are family here . I learned sooo much from this website
@Lauren Of Emerald City posted:At least have excuses not to lift heavy stuff and not do situps hahaa XD. And that is an excellent idea!! Letting bosses know everything, definitely makes life more easier I noticed. That way they do not make up their own assumptions like sneaking off to text or something when really you are pooping lol. But of course there is always some bosses that are literally buttholes about anything lol. Some people do not understand anything unless they are in that situation themselves unfortunately. And I bet you get tired too from pooping overnight as well. I hate getting up overnight to poop when I am tired hahaa XD
And yeah same!!! We are family here
Especially from you too
30. I am currently 55 years old. My brother was nine (a precursor to the J pouch). He's 62 years old now.
Diagnosed in 1996 (age 29), but had suffered with symptoms since college (age 18). Surgeries in 1998 (age 31). I'm 53 now. So, 22 years. I, too, have had about 10-12 bm's a day since takedown, and only slightly lessened by use of Metamucil. But, I wouldn't go to an ostomy again... 4 months was 4 months too many!
I was 18 diagnosed with UC. Age 20 got the J-pouch. I am 56 now.
61. Diagnosed with Crohn's in 2008. Pathology from colectomy changed diagnosis to UC. I have secondary Addison's from too long and too high of doses of Prednisone. I have to remain on 5 mg. of Prednisone for life now with some long term effects. Episodes of pouchitis getting a little more frequent. I do sports and the frequency gets limited from inflammation. We all have so many unique experiences on this journey.