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I was 37.  Diagnosed with UC Feb. 2006, baby born March 2006, 1st surgery May 2006 (2 days before my 15th wedding anniversary), 2nd surgery August 2006, and take down October 2006. 

I didn't have any prior UC flares before this either.  Things moved from bad to worse rather quickly. Thankfully, my daughter was born healthy during all this craziness.

Especially since us women have a 50% infertility rate after J-pouch surgery, thank goodness you had kids before. I am 27 with no kids, I may have trouble in the future.

I was 37 in 1992. I had an unusual amount of complications and ended up spending the summer of 1992 in the hospital finally got my J Pouch. Take down was October 1992. Unfortunately I was left with at least 12 to 14 bowel movements a day that nothing can control! So I  have been suffering with malsorption and severe anemia for yrs. I also started to develop in 2004 partial bowel obstructions  from adhesions. I’ve had 6 bowel obstruction that required an NG tube. I gave up eating solid food eight years ago. Everything is blended or soft. I am not going through another partial bowel obstruction Unfortunately also my surgery left my central nervous system compromised. I have been without full use of my balance since my surgery they have no idea what happened. I know that I am an unusual case. Most do far better with the surgery and it is life-saving. I was able to take care of my child and see my grandchild be born for that I am grateful.  But I have always wondered for those of us that got the surgery in the early 90s when the incision Was apparently done differently than it is now do we suffer with more adhesions? Ty 

@JK Love posted:

I’m 79 and I think I got my pouch in 1991. I’ve continuing bouts of diarrhea. I use metamucil daily. I’ve noticed A lot of TV adds regarding treatments for UC. In my UC days it was azulfadine or prednisone. I wonder if any of the new treatments would help me with ongoing diarrhea bouts? Any advice appreciated.

SInce you are older, do you have problems holding it and do you go more often now???

@Justine posted:

I was 37 in 1992. I had an unusual amount of complications and ended up spending the summer of 1992 in the hospital finally got my J Pouch. Take down was October 1992. Unfortunately I was left with at least 12 to 14 bowel movements a day that nothing can control! So I  have been suffering with malsorption and severe anemia for yrs. I also started to develop in 2004 partial bowel obstructions  from adhesions. I’ve had 6 bowel obstruction that required an NG tube. I gave up eating solid food eight years ago. Everything is blended or soft. I am not going through another partial bowel obstruction Unfortunately also my surgery left my central nervous system compromised. I have been without full use of my balance since my surgery they have no idea what happened. I know that I am an unusual case. Most do far better with the surgery and it is life-saving. I was able to take care of my child and see my grandchild be born for that I am grateful.  But I have always wondered for those of us that got the surgery in the early 90s when the incision Was apparently done differently than it is now do we suffer with more adhesions? Ty 

I am soo sorry to hear that! I had multiple problems with my ostomy- I kept getting blockages due to a thick, muscular abdominal wall. Everything has its pros and cons unfortunately.

@JK Love posted:

I’m 79 and I think I got my pouch in 1991. I’ve continuing bouts of diarrhea. I use metamucil daily. I’ve noticed A lot of TV adds regarding treatments for UC. In my UC days it was azulfadine or prednisone. I wonder if any of the new treatments would help me with ongoing diarrhea bouts? Any advice appreciated.

Somebody said that Remicade makes thicker stool, I am not sure if that is the case with everybody, might want to ask gastro

I was 37 years old. I’ll be 65 next month so with the kids with this. The only thing that slows down my bowel movements and makes them have more consistency is when I am on amoxicillin. Are usually take amoxicillin when I have extra bacteria in my stomach because I developed severe Gerd and esophagus Issues over the years. But I can’t be on antibiotics every day. Nothing works to slow down the diarrhea or the number of bowel movements a day. I’ve learned to live with it.

I was 33 in 1994. Had UC for 9 years prior. Had Jpouch for 26 years. Redo In 2009. Have diarrhea consistently. Meds only work for a few days then stop. Trying Loperamide Gel tabs and they seem to be working. Most pills go right through me. Now I have kidney disease stage 2 going into stage 3. WS hospitalized for a month after redo and was given Toradol which caused the kidney disease. Can’t take any NSAIDS. Just bought a Bio Bidet and it’s a life changer! 

Its ok, haven't been one of the lucky ones running around after 3 weeks but at just about 5 months i feel much better. Patience is key! I see improvement every week and can get out now, shop, go out to eat. I work from home.. I eat a lot more variety, haven't really had butt burn, and actually slept all night this week! You will get lots of support and info here. 

@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

Last edited by Lauren Of Emerald City

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.

@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.

Thank-you for posting here first And dang?!! A twist??? Goodness! Do you think situps causes twists???

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!

Last edited by Danr11
@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???

@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.

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

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

Especially from you too

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! 

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.

Last edited by CTBarrister
@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.

Last edited by CTBarrister
@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.

Last edited by CTBarrister
@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.

Last edited by CTBarrister
@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???

@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. 

Last edited by Lauren Of Emerald City

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. 

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???

Last edited by Lauren Of Emerald City

Hello Susan.  That is amazing how well you have done over a long period of time.  I am nearly 64 and have had my J-Pouch 2 1/2 years due to UC. Have had a few bouts of pouchitis, burning and itching from fissures and currently have a partial obstruction which is very uncomfortable.  Hope it resolves soon with better says ahead.  All the best.

I am 2 months post take down and did j pouch surgery at 42. This has been very hard on my family as all of this is so new and didn’t get much guidance from my doctor... was told to eat basic carbs for first few weeks and I’ll see you next month.  This site has helped me a lot. I am struggling with burning and BM’s....I go so much that I don’t even sleep next to my lady anymore so she can sleep. She caught me in tears the other night because the burning was just too much to handle. I am trying any and all recommendations that I find on this site and am positive that my pouch is just new and will settle down with time. Tried psyllium husk powder today For the first time with very promising results...

@Ryan138 posted:

I am 2 months post take down and did j pouch surgery at 42. This has been very hard on my family as all of this is so new and didn’t get much guidance from my doctor... was told to eat basic carbs for first few weeks and I’ll see you next month.  This site has helped me a lot. I am struggling with burning and BM’s....I go so much that I don’t even sleep next to my lady anymore so she can sleep. She caught me in tears the other night because the burning was just too much to handle. I am trying any and all recommendations that I find on this site and am positive that my pouch is just new and will settle down with time. Tried psyllium husk powder today For the first time with very promising results...

 

Hi Ryan.  I def know what you are experiencing. Hang in there ~~Keep area clean ~~if too raw to touch with warm cloth you can get a plastic spritz bottle. Clean area n blot it. Apply Eucerin

cream ( no lotion ) ~~it’s very thick cream ( good barrier ) worked for me ~~ once in a great while I get it ~~I remember It well.  I also ~~when it was very bad n too painful to touch ~~ from a distance used a hair dryer ~~drink lots of water ~~ this will pass ~~ think positive ~~ you are not alone ~~ feel free to ask me anything.  Good luck my fellow j pouched 

@Susan B posted:

I was 34 yrs old. I am now 70 ~~ I have had j pouch longer than my colon ~no real problems. Blockages in the beginning  ~~I wish I didn’t have to go the the bathroom as much as I do.  And always have most always have gas when I empty pouch. Embarrassing at times.  

Wow! That is amazing! 

Going a lot is way better than constipation/blockages, that is what I tell myself to make myself feel better about it lol. 

@Ryan138 posted:

I am 2 months post take down and did j pouch surgery at 42. This has been very hard on my family as all of this is so new and didn’t get much guidance from my doctor... was told to eat basic carbs for first few weeks and I’ll see you next month.  This site has helped me a lot. I am struggling with burning and BM’s....I go so much that I don’t even sleep next to my lady anymore so she can sleep. She caught me in tears the other night because the burning was just too much to handle. I am trying any and all recommendations that I find on this site and am positive that my pouch is just new and will settle down with time. Tried psyllium husk powder today For the first time with very promising results...

I am so sorry to hear that! I am glad you are doing better though! Its only going to get better from now on. 

RYAN when you lose the colon the stomach acids take a much quicker exit route which means possibly burning episodes, I was successful with sitz baths the 1st year and actually used a lot of OTC Desinix and A&D for the burn along with cold wet or icecubes in washcloths. I slept with a waterproof pad and learned to sleep on my stomach when my system was loud & gurgling which my sleep deprived husband appreciated! lol

Over the years I realize that my pouch now seems to have more times which it might expand or bulge a bit which means it needs to release either in a BM or gas. I know the Metamucil is fiber and can cause the gas, but it also helps to pull the loose stool together for a more solid BM; and by adding Gas X Simethicone softgels (125mg) a lot of the gas symptoms seem to be in check! 

@Ryan138 posted:

I am 2 months post take down and did j pouch surgery at 42. This has been very hard on my family as all of this is so new and didn’t get much guidance from my doctor... was told to eat basic carbs for first few weeks and I’ll see you next month.  This site has helped me a lot. I am struggling with burning and BM’s....I go so much that I don’t even sleep next to my lady anymore so she can sleep. She caught me in tears the other night because the burning was just too much to handle. I am trying any and all recommendations that I find on this site and am positive that my pouch is just new and will settle down with time. Tried psyllium husk powder today For the first time with very promising results...

Ryan i'm 3 months post take down, the first few weeks i was exactly the same as you described, was up all night, felt helpless, now i sleep trough the night, still have bad days but overall it's good, be positive stay strong it will get better.

@GEB56 posted:

Lauren. I started Pantoprazole 3 days ago. More distended and painful. Waiting again for surgeon to email. I wonder, as a possibility, if I have an umbilical hernia choking the bowel. I do exercises and sports.

Ah! That makes sense now! I have heard many times on here about people doing specific exercises\sports and it causing: hernias, bowel twists, and blockages. With a J-pouch we have to take it easy when it comes to exercises, we cannot do anything extensive.

What exercises/sports are you doing???

@GEB56 posted:

Primarily canoe and kayak racing for the last 13 years.  We train often paddling fast and up to 20 km each time twice a week.  Floor and light weight exercises including crunches. I walk 5 km a day and cycle sometimes.  I am nearly 64.

Anything too extensive can cause bowel problems. I think the crunches are the culprit. A lot of people on here have gotten hernias and blockages from crunches/situps and weightlifting. I would back off on the crunches.

As for duration of exercise: I would do at least 30minutes but no more than 1hr at a time, especially with your age.

Is your stomach poking out around the umbilical area? Belly button turn into a outty??? 

I was 33 and pregnant with my second son in 1994. I thought I had bleeding hemorrhoids. My OB told me “No” and to go see a colon doctor. After my first sigmoidoscopy, I was immediately diagnosed with UC! I was shocked! It was down hill from then. I’ve been sick ever since. Bla, bla, bla. Fast forward to 2011. After my yearly colonoscopy, my doc told me he found pre-cancer cells. Sooo,  September 2011 I had my colon removed. Everything went according to plan.  My take down surgery was January 2012. Three weeks in the hospital! My body wouldn’t cooperate. It was a nightmare! Not a good memory. But, I’m here to talk about it. So that’s good.

@GEB56 posted:

When I canoe and kayak train it is always 2 hour duration.  I think you are right Lauren about blockages/hernias from sit ups, crunches etc.  If I get this resolved with surgery or more time, I QUIT with regards ab exercises.

Yeah 2 hour durations are definitely quite extensive, especially since its similar to weightlifting- as we know already, weightlifting can cause a lot of abdominal problems. I think you definitely need to fall back on that for sure. I would try to keep it between 30-60minutes if you truly cannot go without canoeing/kayaking. 

And yeah definitely, I would definitely recommend not to do those abdominal exercises since you are having problems and considering your age. A lot of gastros/people do not know about abdominal exercises causing all of those problems, I learned about all of that stuff recently from other J-pouchers and on the internet. 

Definitely do less extensive stuff. Also overeating can cause blockages, hernias, and other stuff too. So definitely be careful with not overeating as well. 

@edp posted:

Totally understandable!!! I had to quit college quite a few times because of IBD and even having it in high school was brutal. I wish teachers and everyone in general can understand and be more empathetic towards people. A lot of people do not even try to understand things until they are going through it themselves; that needs to change!

So happy you got through everything! I love hearing how people do not let IBD or other situations beat them!

Totally understandable!!! I had to quit college quite a few times because of IBD and even having it in high school was brutal. I wish teachers and everyone in general can understand and be more empathetic towards people. A lot of people do not even try to understand things until they are going through it themselves; that needs to change!

So happy you got through everything! I love hearing how people do not let IBD or other situations beat them!

definitely! I'm happy to hear you are well now. its honestly such a mental strain too. cant focus on anything because its constant pain. did you also get a j pouch around the same age?

OMG! Same here!!! I was diagnosed at 17 too!!!! Did they give you Biologics like Remicade? I never did biologics. I tried Azathioprine, Mesalamine, Apriso, Prednisone, Lialda, and Uceris.

What have you tried???

omg haha. yea, i tried lialda and mesalamine first, then humira, and then remicade and prednisone while i was hospitalized. now i literally only have to take one pill of immodium a day and i'm all good!

@edp posted:

omg haha. yea, i tried lialda and mesalamine first, then humira, and then remicade and prednisone while i was hospitalized. now i literally only have to take one pill of immodium a day and i'm all good!

Oh you tried a lot of stuff I see! Happy to hear that you are better

It must have been hard for you to make it to the remicade infusion centers during high school! That must have been a nightmare back then lol, epsecially 4 hour treatments!

You graduated high school still too!, You are a very determined person! I am soo proud of you

Last edited by Lauren Of Emerald City

Oh you tried a lot of stuff I see! Happy to hear that you are better

It must have been hard for you to make it to the remicade infusion centers during high school! That must have been a nightmare back then lol, epsecially 4 hour treatments!

You graduated high school still too!, You are a very determined person! I am soo proud of you

aww thank you!! definitely not easy for any of us. proud of everyone who makes it through and those still fighting. have you had any issues since the takedown?

@edp posted:

aww thank you!! definitely not easy for any of us. proud of everyone who makes it through and those still fighting. have you had any issues since the takedown?

The first week of Takedown, I was not taking it easy like I should have. I did leg lifts and my stoma wound opened up resulting in wound separation. Water/soap got in there from the shower too and it infected the area. The infection spread to the whole small intestine including the pouch. I had to go back to the hospital for bowel rest and antibiotics for a couple of days. It was my fault though lol. Ever since then I have not gone back to the hospital for my pouchy.

I only had minor issues since then like if I eat the wrong thing or do not drink enough water I get constipated, but that is only a couple of times a year thank goodness. Nothing major.

How about you???

The first week of Takedown, I was not taking it easy like I should have. I did leg lifts and my stoma wound opened up resulting in wound separation. Water/soap got in there from the shower too and it infected the area. The infection spread to the whole small intestine including the pouch. I had to go back to the hospital for bowel rest and antibiotics for a couple of days. It was my fault though lol. Ever since then I have not gone back to the hospital for my pouchy.

I only had minor issues since then like if I eat the wrong thing or do not drink enough water I get constipated, but that is only a couple of times a year thank goodness. Nothing major.

How about you???

oh man that sucks. i never had any complications like that but i just found out i have pouchitis and cuffitis. its pretty common though and not as painful as UC.

I was 17...  Senior in high school. 1990.  Even with the issues many of us have had since the surgery, I feel so very lucky.  Abscessed fistulas and two more  runs with  temp ilieostomies after the fistula repairs.   Blockage surgery, strictures, dilatations...  These complications were nothing compared to what life was like prior to getting my J-Pouch.  I was 5' 9" and weighed 88 pounds,   blood transfusions and spent a month at the hospital before I was healthy enough to have the surgery. I am hoping and praying my J-Pouch holds out many more years.   I gained my weight back quickly (lol) and can eat most foods.  I do have "accidents" and wear pads all day/every day.  But, life is good.  So many have gone through much, much more.  

@3Cutedogs posted:

I was 17...  Senior in high school. 1990.  Even with the issues many of us have had since the surgery, I feel so very lucky.  Abscessed fistulas and two more  runs with  temp ilieostomies after the fistula repairs.   Blockage surgery, strictures, dilatations...  These complications were nothing compared to what life was like prior to getting my J-Pouch.  I was 5' 9" and weighed 88 pounds,   blood transfusions and spent a month at the hospital before I was healthy enough to have the surgery. I am hoping and praying my J-Pouch holds out many more years.   I gained my weight back quickly (lol) and can eat most foods.  I do have "accidents" and wear pads all day/every day.  But, life is good.  So many have gone through much, much more.  

I am sorry to hear hon!!! I hope things get better!! Have you tried loperamide to help with the accidents???

@Lu31 posted:

Thank you.  Yes wasn't easy as we all know.  I had the 2nd and 3rd surgeries in the summer but last one done right before returning to school. Ended up missing a bit anyways as my system took time to get used to it. Still, happy to get rid of the bag.

You are welcome! And wow that is amazing!! Soo cool how you overcame that and still graduated Graduated not letting stuff defeat you

I had anal atresia at birth, part of a group of birth defects that appear together called VATERS syndrome. I also have Ehlers Danlos syndrome which is a connective tissue disease that impacts the creation of collagen (the glue that holds things together in your body). The result was that every time that they tried to surgically fix the anal atresia they made it worse until I no longer had a functioning sphincter. I also had IBD (or IBS, I can never remember) but I had bloody stools and horrific cramping for years.

Add that to no sphincter and you have the picture. Life was hell. 2 failed Gracillis muscle transplant surgeries to try to create a functional sphincter and I was done. I had already had a colostomy that wrought havoc on my skin (collagen again) and I had to find an alternate solution.

The Kpouch was the miracle that saved my life and gave me a life.

It has been 41 yrs and I am still thrilled.

Sharon

@skn69 posted:

I had anal atresia at birth, part of a group of birth defects that appear together called VATERS syndrome. I also have Ehlers Danlos syndrome which is a connective tissue disease that impacts the creation of collagen (the glue that holds things together in your body). The result was that every time that they tried to surgically fix the anal atresia they made it worse until I no longer had a functioning sphincter. I also had IBD (or IBS, I can never remember) but I had bloody stools and horrific cramping for years.

Add that to no sphincter and you have the picture. Life was hell. 2 failed Gracillis muscle transplant surgeries to try to create a functional sphincter and I was done. I had already had a colostomy that wrought havoc on my skin (collagen again) and I had to find an alternate solution.

The Kpouch was the miracle that saved my life and gave me a life.

It has been 41 yrs and I am still thrilled.

Sharon

AMAZING!!!! Glad your better

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