I have had a J-pouch now for 25 years. Anyone else out there who had the surgery a while ago? How are you all feeling?
Original Post
Replies sorted oldest to newest
I'm 53 years old and have had mine for 23 years. I had severe infections with the first surgery and then smooth sailing after that. My issues now are related to tightening of the anal sphincter, including a small bowel obstruction a couple of a years back.
Why do you ask?
Hi All this is my first post on this forum. 29 years and 11 days post op with J-pouch due to FAP. Currently on biological therapy for IBD. Feeling good.
I have had mine since 1985 so I am over the 31 year mark. I just turned 51 a few weeks back and have had very few issues over the years with the exception of a few flare ups of pouchitis.
26 years. 7 great years, then an anal fistula that was operated on left me with incontinence, but thickening the stool with meds and tucking a cotton ball up there allowed me to have a functional, productive life. 5 years ago developed chronic refractory pouchitis-a bit of a journey to find a solution, but now between a sacral nerve stimulator, and meds to thicken stool and keep poichitis in check (antibiotics and immuran), the last 3 years have been functionally almost as good as the first 7. I still have biologics as an option someday if needed, and aim to keep this pouch for as long as I can!
My DH has had his J-Pouch for 24 years (he is 57). He is doing okay.
Im 36 yrs old. Have had my pouch for 24yrs, 20 of those years were really great and trouble and drug free the last 4 years have been a challenge with blockages and the addition of enteropathic arthritis.
45 years old. Had the J-Pouch for 11 years. During the first 2 years I had obstructions and an incisional hernia and 2 or 3 bouts of pouchitis. One day I blew both hammies doing heavy back hyper-extensions. Since I could no longer walk (let alone lift) I decided to have the hernia repaired. It was extremely fortuitous because when my surgeon repaired the hernia, he also freed up the adhesions and put slippery stuff on my guts to prevent further adhesions. The result was no more obstructions ever! About the same time I stopped using ibuprofen or aspirin and also stopped taking probiotics. The result was no more pouchitis ever. So that was all during the first year or two and for the last 9 years I have not had one j-pouch related issue. I also continue to lift extremely heavy in the gym - here is part of my deadlift workout tonight with 585.... https://www.youtube.com/watch?v=LMxtYe2g80I
Pouch is 31 and I'm 54. Sure, needed to have the anastomosis excised a couple of times as it was narrowing ... had a few bouts with pouchitis ... but overall, I eat and drink pretty much whatever I want ... been on extended rock-climbing trips ... long, arduous bike rides ... everyone's result will differ, but I'd get the pouch surgery every time.
Probably should mention the joints have gone (bilateral knee replacement), but you can't blame the surgery for that!
Hi everyone. I've been trying to lose weight and I'm not taken anything off. I'm working out.....eating a vegan diet, no bread, no sugar, no pasta, no rice, no potatoes, no starches at all. I workout, I use the treadmill for 3-4 miles...I lift weights, I use bodyweight, workouts, I swim, I drink water, so why am I not taking off any of the weight? Can anyone help me with this?
Hello, Edith. Could it be muscle that is showing up on your scale as weight? As you are active and work out you probably have developed good muscles. Muscle weighs more than fat and will show up on your scale.
Happy Holidays Everyone! I haven’t posted in quite sometime due to feeling great and moving to Sarasota, FL.
I was diagnosed with UC in 1984 and had my colectomy for Jpouch 1994. So I had my Jpouch for 23 years with several complications. Most recent was a total redo of Jpouch in 2009 @ Mount Sinai Hospital in NYC. The original Jpouch was constructed upside down, @ Park Plaza Hospital in Houston. Tx. I’ve had numerous blockages with hospitalization during that time. Also had surgery for scar tissue removal. Over the years I learned what foods would give me trouble and weighed the cost of pain vs the enjoyment of the food! Long lesson to be learned. Haven’t seen the inside of a hospital for 8 years!
After my redo of original Jpouch in 2009, I developed a leak and was hospitalized for a month, unconscious for 3 wks, 3 days in ICU. Released from hospital with temp ileostomy, pneumonia and Kidney Disease from taking Toradol, for a month, also couldn’t walk wo walker or assistance. Thankful for my loving husband and son during that time. Long recovery. Went down to 97 lbs, size 12-14 in little girls size in clothes. Had ileostomy for 6 months until I was strong enough for reversal surgery, Best Surgey ever! I feel great now. Loss my taste and tolerance for sugar in hospital so I avoid it now. Happy at 116 lbs in size 2-4 women’s clothes.
I take no real drugs, just take Pepto & Pearls Probiotic for diarrhea. Lomotil stopped working on me. I’m in a constant state of dehydration so drink tons of water & Gatorade G2 when I feel totally drained.
My surgeon said this Jpouch should last the rest of my life!! Hope he’s right. It’s been a bumpy road and this site has a wealth of information and real life advice and experiences.
I would like to thank everyone that has given me advice. You are never alone here. Someone will always be listening and caring.
Ok too long. I could write a book! Bless everyone in the New Year! Be Happy & Healthy & Kind!
Your experience could pass for my own! Lots of lu k in the new year!
I have had my j pouch almost 20 years. I suffered with UC for 20 years before my j pouch. My main issue is being tired all of the time.
I have had my pouch for 20 years, but I am scheduled for a redo on January 10. I have an anal stenosis that is affecting my quality of life. I have had a few blockages and multiple dilations. Feeling nervous about the redo. This surgery is not an easy one. Anyone in a similar situation?
Edith - don't kill me for this but how do you expect to put on muscle or tone up on a Vegan diet? There's your problem! :-)
I had UC for almost 18 years then J pouch in 2000. Just had my 4 th trip to er with blockage on X-mas. Had dilation 2 yrs ago. Not on any meds and generally feel fine. Do take iron and B12 as body does not absorb iron since surgery. Will be evaluated next week as to current status since I had blockage last Jan as well.
Have had j-pouch for 25 yrs. Had a rough time with the surgery when bowel took 10 days to wake up and caused pseudomembranous enteritis. Just plain nasty. One bout of pouchitis from NSAIDS consumption. Never took NSAIDS of any kind again. Other than those two episodes, the entire 25 years has been blissfully uneventful. Can eat pretty much anything, though I get butt-burn from tomato sauce and orange juice. Take a couple of antacids when I eat those and am fine. Potassium tends to run on the lower side of normal so take potassium supplement daily. Imodium if gut starts getting a bit hyper. Am so fortunate to have had the best of medical care over these years.
Daleer posted:45 years old. Had the J-Pouch for 11 years. During the first 2 years I had obstructions and an incisional hernia and 2 or 3 bouts of pouchitis. One day I blew both hammies doing heavy back hyper-extensions. Since I could no longer walk (let alone lift) I decided to have the hernia repaired. It was extremely fortuitous because when my surgeon repaired the hernia, he also freed up the adhesions and put slippery stuff on my guts to prevent further adhesions. The result was no more obstructions ever! About the same time I stopped using ibuprofen or aspirin and also stopped taking probiotics. The result was no more pouchitis ever. So that was all during the first year or two and for the last 9 years I have not had one j-pouch related issue. I also continue to lift extremely heavy in the gym - here is part of my deadlift workout tonight with 585.... https://www.youtube.com/watch?v=LMxtYe2g80I
What made the intestines slippery??
New YOrk Anna posted:I have had a J-pouch now for 25 years. Anyone else out there who had the surgery a while ago? How are you all feeling?
I am 61 and have had my jpouch for 33 years. Have arthritis big time. Lots of adhesions which cause lots of blockages. I have had about 30 surgeries. Fistulas. Never healed. Many infections. Had adhesions taken out once 15 years ago. All are back. Have had over 80 blockages. I was on Cipro over 20 years now have neuropathy on lower legs. Now my tendons flare up all the time and I am going to physical therapy. I was a PE teacher for 35 years and a coach as well. So joints are real bad. I get nauseous almost every day at some point also! So this is what I have after 33 years of jpouching!!
Sorry Tanner, Wish there was a better option. Wonder if those who opted for osteomy bags have better outcomes long term. I am at 17 years with j pouch at almost 74 yrs old. And have found practicing yoga, daily with once a week class, a big help with arthritis these past 5 years....especially with hands. (Prior to this had trigger finger surgery, thumb and both wrists, to relieve tendonitis.). I guess one has to try everything in search of better quality of life.
Mary O posted:I'm 53 years old and have had mine for 23 years. I had severe infections with the first surgery and then smooth sailing after that. My issues now are related to tightening of the anal sphincter, including a small bowel obstruction a couple of a years back.
Why do you ask?
I'm 50 and have had mine for almost 28 years. Several infections after second surgery, and a few bouts of pouchitis. But, other than that, I've had great success. Recently however, I fi it difficult to eliminate. It feels like I may have an issue with tightening as well? It's just difficult to fully go to the restroom. My original surgeon is still practicing, but is many states away. Which tests did they run to determine what was wrong? I'm wondering how you determined that was the problem in hopes that I can find a doctor in my area that can help me and run whatever test necessary? What is the procedure for correcting a tightening anal sphincter? I have no pain, but have put on weight in my abdomen area as well. Any info is greatly appreciated.
Mary O posted:I'm 53 years old and have had mine for 23 years. I had severe infections with the first surgery and then smooth sailing after that. My issues now are related to tightening of the anal sphincter, including a small bowel obstruction a couple of a years back.
Why do you ask?
I am 50 and have had mine for almost 28 years. I had several infections after take down and a few bouts of pouchitis, but other than that, everything's been great. Recently however, I am having trouble fully eliminating. I'm wondering if the anal sphincter is tightening for me as well? My original surgeon is still practicing, but is states away. What tests did they run to determine the tightening and what is the procedure to correct it? I'm hoping to find a doctor nearby, but I now live is a fairly small town, with limited specialists. Any information is greatly appreciated.
I have been so happy with my j-pouch. I had one big problem 1 year after j-pouch surgery, my pouch twisted, it was not good but after that was taken care of every things has been great. I haven’t had mine as long as some of you but I’ve been very happy.
Drone3, I've never heard of that type of arthritis. I did a quick google search for it. Is it possible to get it after the colon is removed? I ask because the site I looked at said the arthritis occurs during U/C flares.
MJMalone, I had been having problems passing much at all, even though my waste is extremely watery. I didn't understand it and basically ignored it. I had been symptom free for nearly 20 years at that point.
On night, I ate popcorn at the movies (not very bright of me, I know), couldn't pass anything and ended up in the ER with the small bowel obstruction. I saw my gastroenterologist and he ordered pelvic floor physical therapy for me, as he couldn't insert his finger in my rectum at all. I went to the first appointment having NO idea what she would do for/to me. She used her fingers to stretch my anal sphincter. What an absolute relief! It was a bit painful but was incredibly effective. It took quite a number of sessions. I no longer see her but use medical grade dilators from time to time to keep the sphincter more flexible. I also eat healthier now and that creates more bulk in my waste which keeps the sphincter more elastic and less rigid.
IF that is your problem, it is best to get a handle on it before it gets any worse! It's my understanding that some physical therapists do pelvic floor work. I lived in Chicago at the time and was able to go to a p/t that only did that type of therapy.
Best of luck to you. Let me know if you want to discuss any further.
Curious about pelvic floor work and medical dilator. I have had dilation done 2 years ago and had 2 episodes since. Surgeon wants to dilate in office every 6 months to stay ahead of scar tissue. I also need to have pouch scoped (been 15 yrs) to see if there is anything else going on. Also have used steroid creams in past that also helped. Await appt. date with GI to check pouch and dilate more. Thanks for your input Mary.
Trish, I've never had dilation done by a surgeon so I can't comment on that. I have less than an inch of my large intestine left; since U/C patients have a much higher chance of colon cancer, my gastroenterologist has me having a scope every one to two years to keep an eye on that, as well general health of my pouch.
I don't know know your doc wouldn't have you do p/t and self dilation. I feel much more in control of my situation as a result of it.
I was dilating every day in the beginning. I dilate every few weeks now.
Mary O,
No history in family...diagnosed UC at age 38......pouch done in 2000 (early 50’s)....4 Er trips with bowl blockage (Constriction from scar tissue) no colon left. Pouch formed from 12 inches of small intestine (Hopkins in Baltimore)
latest was x-mas day——all resolved within hrs. Of receiving IV fluid (confirmed by Cat Scan)
Hi, I'm new to the group and I'm 34 years old. I've had a j-pouch for about 25 years. I have a history of ulcerative colitis that onset when I was about 3 years old. A few years after my takedown in 1993, I had pouchitis for the first time. I have relapses of pouchitis every 1-2 years since. I get the colitis cocktail, some of which I'm taking now. Flagyl, entocort, canasa, then last imuran. I do have issues with anal fissures over the years. I basically have dumping syndrome since the surgery, but have been taking tincture of opium for the last decade and it's really enhanced my quality of life. I'm excited to find this group and so many similar stories! 😀
Trish, are you keeping hydrated? I struggle with this at times and am surely hurting myself then.
I had the first of 2 surgeries for my j pouch 20 years ago. I have struggled with hernias and loose stools/dehydration. Hope y’all are doing well!
I have done well overall. It's almost 20 years for me too.
Yes, hydration is important...I drink water, teas, juices, sodas, etc. all day long. Does mean I am up 3 times a night, but does make a difference.
BarbieG posted:Happy Holidays Everyone! I haven’t posted in quite sometime due to feeling great and moving to Sarasota, FL.
I was diagnosed with UC in 1984 and had my colectomy for Jpouch 1994. So I had my Jpouch for 23 years with several complications. Most recent was a total redo of Jpouch in 2009 @ Mount Sinai Hospital in NYC. The original Jpouch was constructed upside down, @ Park Plaza Hospital in Houston. Tx. I’ve had numerous blockages with hospitalization during that time. Also had surgery for scar tissue removal. Over the years I learned what foods would give me trouble and weighed the cost of pain vs the enjoyment of the food! Long lesson to be learned. Haven’t seen the inside of a hospital for 8 years!
After my redo of original Jpouch in 2009, I developed a leak and was hospitalized for a month, unconscious for 3 wks, 3 days in ICU. Released from hospital with temp ileostomy, pneumonia and Kidney Disease from taking Toradol, for a month, also couldn’t walk wo walker or assistance. Thankful for my loving husband and son during that time. Long recovery. Went down to 97 lbs, size 12-14 in little girls size in clothes. Had ileostomy for 6 months until I was strong enough for reversal surgery, Best Surgey ever! I feel great now. Loss my taste and tolerance for sugar in hospital so I avoid it now. Happy at 116 lbs in size 2-4 women’s clothes.
I take no real drugs, just take Pepto & Pearls Probiotic for diarrhea. Lomotil stopped working on me. I’m in a constant state of dehydration so drink tons of water & Gatorade G2 when I feel totally drained.
My surgeon said this Jpouch should last the rest of my life!! Hope he’s right. It’s been a bumpy road and this site has a wealth of information and real life advice and experiences.
I would like to thank everyone that has given me advice. You are never alone here. Someone will always be listening and caring.
Ok too long. I could write a book! Bless everyone in the New Year! Be Happy & Healthy & Kind!
So glad you are doing well. I had my surgery at Mt Sinai in 1984 and all my docs are there. Lately I’ve been having some problems. May I ask who did your surgery there? Thanks.
Question to all.......are u lactose intolerant since surgery and or take iron and B12 everyday due to lack of iron absorption without a colon? I was told right after surgery that I would be lactose intolerant and use lactaid tablets when eating any dairy product.. The iron problem turned up more than a year after surgery....easy fixes.
Anna,
My J Pouch was born on April 10, 1992, in Mount Sinai Hospital in New York City, at the wonderfully gifted hands of Dr. Irwin Gelernt, a great man and a great surgeon. He was a student of the famed Dr. Nils Koch, did the first K Pouch in the USA and was generally considered the best colorectal surgeon in the nation at that time. He unfortunately passed away in 1996.
My J Pouch will turn 26 this year. It’s older than my colleagues’ kids who are in college. I hope I can get another 26 years out of it. It’s been overall pretty good. I had no choice when I had surgery- dysplasia and colon essentially turned to pulp by UC. Dr. Gelernt told me the colon was dissolving in his hands as he took it out of me.
Trish,
I am not lactose intolerant, however I was told to avoid dairy early in the post op period. This was due to the fact that the gut was depleted by the surgery and antibiotics. Some people do develop lactose intolerance from intestinal surgery.
I did develop a B12 deficiency, but that was 20 years later. I was anemic and required oral iron supplements post op, but that was due to pre op blood loss, not post op malabsorption. I have maintained good blood counts over time.
Jan 
sounds like I am somewhere in the middle of the pack regarding life after surgery. Hopefully research will find better treatment. I was told, in late 80's, that a vaccine is what they were after. Sure would beat surgery.