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
@Former Member 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.
@Former Member 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???
@Former Member 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.
@Former Member 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
@Former Member 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.
@GEB56 posted: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.
Be careful doing sports, high intensity stuff can cause consequences, so be careful. And sorry to hear about all of that and the Prednisone, make sure to take calcium/ vitamin D supplements. Prednisone can cause bone side effects.
Do you get depressed when taking Prednisone??? It makes me depressed.
Thx for your comments. I do take Vit D and Calcium. I also deplete rapidly of magnesium, so take supplement as well. I do get depressed, but try to keep pushing. I do kayak and canoe racing as well as cycling. Sadly, these activities require hard seats ((even with cushioning) and sitting for prolonged periods. My sore inflamed.bottom would no doubt be better if I did something else, but my mental health is good when active.
@GEB56 posted:Thx for your comments. I do take Vit D and Calcium. I also deplete rapidly of magnesium, so take supplement as well. I do get depressed, but try to keep pushing. I do kayak and canoe racing as well as cycling. Sadly, these activities require hard seats ((even with cushioning) and sitting for prolonged periods. My sore inflamed.bottom would no doubt be better if I did something else, but my mental health is good when active.
Sooo happy to hear that! I see you are doing perfectly . Prednisone makes me highly depressed but I am going to take your advice and stay active. Nice to see that you do not give up
I was 29 when I got the J Pouch and I am now 57, so I have lived almost half of my life with a J Pouch. Next April it will officially be half of my life as both my J Pouch Step 1 surgery Anniversary and my birthday are in April. I believe I was technically still 28 when they did step 1, and turned 29 just 12 days later.
But if you consider step 2 the deciding date, then it will be later in 2021 when I reach the theoretical "half of my lifetime with J Pouch" mark.
@CTBarrister posted:I was 29 when I got the J Pouch and I am now 57, so I have lived almost half of my life with a J Pouch. Next April it will officially be half of my life as both my J Pouch Step 1 surgery Anniversary and my birthday are in April. I believe I was technically still 28 when they did step 1, and turned 29 just 12 days later.
Yeah I know, you are still being a trooper. Hopefully you will not need an ostomy again but at least it has probably improved since almost 30 years ago, which is great. You coming to Florida soon???
Lauren, my mother passed away on August 27 and so I am going to be in Florida next week but for one night only and it's to collect my father, his car, his dog, and other personal belongings and then move him back to CT permanently since he has nobody in Florida and he is 82 years old. Although he is still driving, because of his age I don't want him doing the trip on his own. After we return he will be living with me until we can buy a place for him with his refund of the buy in monies from the assisted living facility. So unfortunately I will be coming in one night and leaving the first thing next morning. I have a one way plane ticket to Florida.
The drive back could be difficult because my father has both IBS and bladder issues due to an inflamed prostate that causes him to have to urinate frequently. And making matters worse we both have to quarantine for 14 days when we return from our trip due to Connecticut quarantine rules in traveling to "hot states" like Florida. So there will be significant upheaval in my personal life the next few months as I have to relocate my father and find a new condo for him which has to be a ranch and pet friendly. Fortunately I am in negotiations with someone and a deal may be near, but there is a tenant and my father likely will not be able to move in for months and in the interim will live with me.
Although I love my father and we are close, he is a set in his ways type individual. Having him and his pet in my place isn't going to exactly be easy. But it's temporary and he does not want to stay in Florida.
@CTBarrister posted:Lauren, my mother passed away on August 27 and so I am going to be in Florida next week but for one night only and it's to collect my father, his car, his dog, and other personal belongings and then move him back to CT permanently since he has nobody in Florida and he is 82 years old. Although he is still driving, because of his age I don't want him doing the trip on his own. After we return he will be living with me until we can buy a place for him with his refund of the buy in monies from the assisted living facility. So unfortunately I will be coming in one night and leaving the first thing next morning. I have a one way plane ticket to Florida.
The drive back could be difficult because my father has both IBS and bladder issues due to an inflamed prostate that causes him to have to urinate frequently. And making matters worse we both have to quarantine for 14 days when we return from our trip due to Connecticut quarantine rules in traveling to "hot states" like Florida. So there will be significant upheaval in my personal life the next few months as I have to relocate my father and find a new condo for him which has to be a ranch and pet friendly. Fortunately I am in negotiations with someone and a deal may be near, but there is a tenant and my father likely will not be able to move in for months and in the interim will live with me.
Although I love my father and we are close, he is a set in his ways type individual. Having him and his pet in my place isn't going to exactly be easy. But it's temporary and he does not want to stay in Florida.
OMG!!!!! I am so sorry!!!! I did not know! I thought she was getting better, I am sorry to hear all of that! Thank goodness, your dad has you though, he is in good hands. Do you want to meet up for a bit to say hi next week when you are in town? I probably will not be able to hang out too long but we can see each other for a bit next week if you want. What day are you coming?
Lauren as I said I will have no free time, coming in Monday night, checking into a hotel and then leaving early the following morning. I have a lot of things to pack with my father and my entire time will be spent with him and there will be literally zero free time to do anything else. I am going to have more than my hands full moving him and his stuff.
@CTBarrister posted:Lauren as I said I will have no free time, coming in Monday night, checking into a hotel and then leaving early the following morning. I have a lot of things to pack with my father and my entire time will be spent with him and there will be literally zero free time to do anything else. I am going to have more than my hands full moving him and his stuff.
Okay, I respect that. Hopefully in the future we can see each other someday. If you do not mind me asking,what did your mother pass away from???
In hindsight I've had uc most of my life thinking especially back to my high school days in the early 70's.
But I guess I was fortunate kinda. At 40 I had my first flare. I didn't know what it was but soon found out it was uc.
Simple pills kept it under control for 10 years. At 50 it flared with a vengeance and they put me on remicade.
That worked for several years until it didn't so I lived with uc problems for seven years until I couldn't do it anymore so I had my colon removed and a j pouch for two miserable years. It was actually worse than the uc. So that was removed and I now have an appliance that works well. It's not where anyone wants to be but it works and I'm free of the uc.
I'm 64 now and I can live with it. If I were younger I'd try another pouch. I have everything intact to do it again but I really have had enough of hospitals and all that.
I read how young some were here when they went through the process. Absolutely amazing. Being older and going through it is tough but I can imagine being so young and doing it.
It is good to hear many are older and still have it and working well.
Very inspiring.
Richard.
@Mysticobra posted:In hindsight I've had uc most of my life thinking especially back to my high school days in the early 70's.
But I guess I was fortunate kinda. At 40 I had my first flare. I didn't know what it was but soon found out it was uc.
Simple pills kept it under control for 10 years. At 50 it flared with a vengeance and they put me on remicade.
That worked for several years until it didn't so I lived with uc problems for seven years until I couldn't do it anymore so I had my colon removed and a j pouch for two miserable years. It was actually worse than the uc. So that was removed and I now have an appliance that works well. It's not where anyone wants to be but it works and I'm free of the uc.
I'm 64 now and I can live with it. If I were younger I'd try another pouch. I have everything intact to do it again but I really have had enough of hospitals and all that.
I read how young some were here when they went through the process. Absolutely amazing. Being older and going through it is tough but I can imagine being so young and doing it.
It is good to hear many are older and still have it and working well.
Very inspiring.
Richard.
Yeah,I was 22 when I had it done, I am 27 now. I could not imagine getting it at your age. In my opinion getting it at an older age is harder since you guys have been through soo much. I opted to get it done at 22 so it would be easier on myself later. You guys are very strong.
When you and I first talked, I believe you were 63, you must have had a birthday recently. Happy Belated Birthday
Her official cause of death in her birth certificate was lung cancer, but that's not really what killed her. Up until April 22, her lung cancer was treated very effectively with keytruda. Her last PET scan showed the cancer was stable and not spreading or increasing. Then on April 22 she fell and broke her hip. She had emergency surgery and they put her hip back together, but she was simply unable to do the rehab. Because she couldn't do the rehab, she couldn't go for her keytruda infusions and the cancer simply wasn't being treated. I believe her last keytruda infusion was in March. After her fall she spent 3 weeks in a hospital and then the rest of her days in the assisted living facility's 120 bed medical center. She was completely bedridden and immobile. For a while she also couldn't have visitors but in her last 6-8 weeks she was designated as Hospice (they have some other term for it in Florida and I forget what it is) and then my father was allowed to see her. I spoke to her on the phone and FaceTimed her a few times. She was generally comfortable but losing weight, and at the very end started coughing a lot and having low oxygen levels, a sign that the untreated cancer was effecting her. In my mind it's really the broken hip that killed her. Although officialy on death certificate its lung cancer.
@CTBarrister posted:Her official cause of death in her birth certificate was lung cancer, but that's not really what killed her. Up until April 22, her lung cancer was treated very effectively with keytruda. Her last PET scan showed the cancer was stable and not spreading or increasing. Then on April 22 she fell and broke her hip. She had emergency surgery and they put her hip back together, but she was simply unable to do the rehab. Because she couldn't do the rehab, she couldn't go for her keytruda infusions and the cancer simply wasn't being treated. I believe her last keytruda infusion was in March. After her fall she spent 3 weeks in a hospital and then the rest of her days in the assisted living facility's 120 bed medical center. She was completely bedridden and immobile. For a while she also couldn't have visitors but in her last 6-8 weeks she was designated as Hospice (they have some other term for it in Florida and I forget what it is) and then my father was allowed to see her. I spoke to her on the phone and FaceTimed her a few times. She was generally comfortable but losing weight, and at the very end started coughing a lot and having low oxygen levels, a sign that the untreated cancer was effecting her. In my mind it's really the broken hip that killed her. Although officials on death certificate its lung cancer.
I am deeply sorry to hear that, when we last spoke,I thought she was getting better,at least hoping so. Are you okay???
My mother was getting better for a while but she deteriorated badly at the end, likely due to cancer not being treated due to inability to do hip rehab. It has been a tough few weeks, a tough few months and a tough 2020. I am doing OK, all considered. It's a lot of upheaval.
@CTBarrister posted:My mother was getting better for a while but she deteriorated badly at the end, likely due to cancer not being treated due to inability to do hip rehab. It has been a tough few weeks, a tough few months and a tough 2020. I am doing OK, all considered. It's a lot of upheaval.
So sorry! Thank God you have your dad and Ash to be there for you. I am glad you have a good support system. Try to be okay because stress can make pouchitis worse, from what I hear anyway. I would hate for your pouchitis to get worse considering everything you have been through.
I have heard of doctors stopping cancer treatments before due to the body being too fragile for therapy. I am not sure which is worse, giving treatment in a fragile state or letting the cancer take over. I guess the end result is the same.
At least your mom is in a happier place. From everything you told me about her, she sounds like an amazing woman, wife, and a very good mother.
@Former Member posted:Yeah,I was 22 when I had it done, I am 27 now. I could not imagine getting it at your age. In my opinion getting it at an older age is harder since you guys have been through soo much. I opted to get it done at 22 so it would be easier on myself later. You guys are very strong.
When you and I first talked, I believe you were 63, you must have had a birthday recently. Happy Belated Birthday
Thanks.
The years go by fast.... All my issues seem like ancient history. Lol.
I do know starting my process at 57 was hard. But I was at my limit. I couldn't be the way I was. Mentally and physically I had no choice. It was hard. And when your that age only you can make that final decision. Two times.
To finally remove it. And to go to a bag after pouch failure. I reached my limit twice. It was either do it or whittle away. Neither was an easy decision no matter how sick I was.
Enough of my story.... Everyone has heard it before. And it's still on this site somewhere. Lol.
Any comments on the Marathon protectant? Has anyone used it?
Richard.
@Mysticobra posted:Thanks.
The years go by fast.... All my issues seem like ancient history. Lol.
I do know starting my process at 57 was hard. But I was at my limit. I couldn't be the way I was. Mentally and physically I had no choice. It was hard. And when your that age only you can make that final decision. Two times.
To finally remove it. And to go to a bag after pouch failure. I reached my limit twice. It was either do it or whittle away. Neither was an easy decision no matter how sick I was.
Enough of my story.... Everyone has heard it before. And it's still on this site somewhere. Lol.
Any comments on the Marathon protectant? Has anyone used it?
Richard.
I only recently found out you had Crohns. Too bad the Crohns messed up your pouch. I am just glad you have peace now.
hubby was 33.
I had my JPouch surgery back in 1994 so 26 years! I have kept it in check with Loperamide, Metamucil and watching diet! The surgeon gave me words of wisdom which I still follow today! One, if you feel like your going to pass gas, you better be running to the bathroom, and if it goes in (the mouth) spicy hot, it will also come out burning and cause burning bum.
Thanksgiving has always been a pouch flare up challenge that I'm willing to deal with each year, due to the variety of rich foods that cause the burn... Pumpkin pie, Apple Cider, Cheese cake.... the pouch will remind you what works, what doesn't. LOL
@Claudia S posted:I had my JPouch surgery back in 1994 so 26 years! I have kept it in check with Loperamide, Metamucil and watching diet! The surgeon gave me words of wisdom which I still follow today! One, if you feel like your going to pass gas, you better be running to the bathroom, and if it goes in (the mouth) spicy hot, it will also come out burning and cause burning bum.
Thanksgiving has always been a pouch flare up challenge that I'm willing to deal with each year, due to the variety of rich foods that cause the burn... Pumpkin pie, Apple Cider, Cheese cake.... the pouch will remind you what works, what doesn't. LOL
That is excellent advice! I love it!!!
And I agree with you, I like to enjoy some things no matter the consequence, especially a holiday. We only live once XD
How old were you at the time of your surgery???