Have had my jpouch for 27 years. Have used this forum off and on for years. Just turned 64 and there are more days where I am having issues. However, the more I keep myself active overall my life is not focusing on pain. Very grateful for the good days!!
Great way to look at it Gailcb! Yes - I'm a 31 year poucher and part of aging is living with all kinds of chronic pain - and staying active is the only way to go....obviously, there are times when that cannot happen - but when it can - it solves so many problems. I tend to want to sit and knit - but being active is the true Rx for aging. As we all know - but so hard to do. Great advice!
I'm 52 and had my pouch done April 2014. I've had pouchitis problems from day one. What I can't figure out is how so many don't have problems. So far just tried steroids and antibiotics. Can't stay off the antibiotics long enough. I feel like I was given a bad pouch. The steroids worked but they were a new one ( red capsules) and gave me bad headaches and couldn't sleep. I wonder if the old steroids would work. I just don't know what to do. Love this site though.
Halo, I can't stay off the antibiotics either. They work well, I've been on them for years, and my life is great. If they fail at some point, or become problematic, I'll try something else. I sure won't stay sick to avoid them, nor do I consider steroids a better choice.
Do antibiotics work well for you?
Scott
I just got over bad attack of pouchitis. Do you follow a certain diet?What other alternatives to steroids is there? I hope I never go thru it again
Cassie
Scott,
yes, for most time they work. If I'm on to long they start wearing off. I did call dr and I'm going to try the suppositorys. I found a coupon online to make my Copay cheaper. Thank you.
If you can find three different antibiotics that work it can be very helpful to use them in rotation. Antibiotic # 1 for 2-3 weeks, then antibiotic #2 for 2-3 weeks, etc., starting #1 again when done with the last antibiotic. This might work well if they are losing effectiveness too quickly- 4-6 weeks off each particular antibiotic might be enough to " recharge" it.
Other antibiotics people have had success with include Xifaxan, Tindamax, Augmenting, and a few others. Doxycycline did the trick for me when treating SIBO (I.e. It kept my pouchitis under control).
Hi, I'm 44 years old and have had my jpouch since I was 15, so that's 29 years. I have some issues with pouchitis and adhesions causing pain but it's better than having UC. My surgery also caused infertility for me which is by far the worst effect ever.
I am 65 and had a complete colectomy Ileo-anal pull through with J-pouch back in 1989 after a 20 year history with UC from the age of 16. Thank God I had a disease that could be taken out of me! I have been healthy since my 2 stage surgery.
Got my pouch at 62. Had usual problems in the beginning and from time to time nothing recent and I'm expecting my pouch will carry me through. The only concern I have is will my muscles break down in later life. Guess I'll have to wait for this answer!
I'm 75 plus a few months. My surgery was in 1993. I've had two blockages over the years which eventually worked themselves out resulting in severe diarrhea and dehydration. My ongoing quest is to find something that will produce more consistent, less watery stools. I guess I've had better results with Metamucil than anything but it is not very satisfactory. Are there any new solutions I may be unaware of?
Had my j pouch for 8 years now and I am 67, no real problems, glad to be alive
I am 59, and my pouch was made when I was 51, in September 2009. I intend to use it for a great many more years 
!
Yes, there have been a few adjustments I suppose, but mostly wonderful ones in comparison to the hell of UC.
Arent we the lucky ones! The surgery was a miracle and I am a walking miracle.
love,
Joan
JK Love posted:I'm 75 plus a few months. My surgery was in 1993. I've had two blockages over the years which eventually worked themselves out resulting in severe diarrhea and dehydration. My ongoing quest is to find something that will produce more consistent, less watery stools. I guess I've had better results with Metamucil than anything but it is not very satisfactory. Are there any new solutions I may be unaware of?
I was instructed to take Metamucil. It ALWAYS works this way as my surgeon, the incredible Dr. Eric Fonkalsrud, one of the pioneers of the surgical technique-the pouch, chief pediatric surgeon at UCLA at the time (now 84 yrs old and likely no longer practicing) told me to do as needed. Take 1-2 teaspoons Metamucil in a small amount of water, liquidy enough to drink it, but thick, not a glass full like some describe doing! I use the REGULAR orange flavor, not sugar free. This ALWAYS stops diarrhea and regulates my stool frequency. I only need to use this method on occasion, but since you never know, I keep it on hand when travelling and of course at home.
I have experienced 4-5 obstructions in the 26 years since surgery. One was a chunk of pickle, once a chunk of coconut and twice now, steak. When this happens the ONLY thing that works IF I can't go which I was instructed to do is a Luke warm plain water enema because that will reposition whatever is stuck and allow it to come out. I unfortunately just had this occur two evenings ago and after trying to go too many times and far too much wiping, I found a pre prepared enema. OMG, the pain I experienced because it must've had salt in it, and my poor rectum was already sore. I emptied the solution and replaced it with plain luke warm water, and wella, relief! I struggled for far too long before using the enema thinking I could go on my own. Bad idea!
Be well fellow miracle,
Joan
I don't know if I've ever experienced pouchitis because any symptoms I've had over my 26 years since surgery have been minor and alleviated without medication or a doctor and I pretty much eat whatever I want except sugar which I was told causes excess water in stools.
My age is 68. Had j-pouch surgery 2010. Diagnosed with UC in 2006. Left my job in 2008. Did not go out of my house for 2 years for fear of accidents. I was very sick and took me a long time to heal. I feel like Angie there isn't one day that goes by with out any pain. But I feel fortunate that I am still here. I am able to enjoy my life with my family and the pain becomes secondary. We learn to live and enjoy life to the fullest. I am very thankful for that, and very thankful for all especially Scott, Sharon, and Jan and many others that helped me the most. If it wasn't for this site I don't know what I would have done. I thank you all for being there for all of us and hope that I may have helped someone in need.
Hi I am new to the group I am 61 years old and had my colon removed in 1996 so going on 21 years I wore the bag for 6 mos then had the take down with J pouch. Most of the time I don't think about being different from other people but I try to be very careful about what I eat. I gave up red meat pork and other hard to digest food years ago and stick to vegetables and softer foods. Had a couple of obstructions and bouts with painful pouchitis where I ended up in the hospital but overall I think I do pretty well. Do I get tired of going to the bathroom 8-10 times a day?? yes indeed I do but when I reflect bad on the horrible pain I indured with my UC I get over it. It's taken me this long to learn to adjust and take care of myself but I'm still learning all the time
I was one ANGRY 16 year old when I got diagnosed with UC. I had the times with incontinence and learned to adapt though that's no way to live, so lived my life around bathrooms. When I had surgery at age 36, it was life changing, but took me literally years to not have to sit at the end of the aisle at the movies!
After reading about all your residual pain and other issues, I still believe I was so lucky to have had the recovery I have.
That being said, I do struggle with depression. It seems to me to have stemmed from the numerous times I had to be put on prednisone as that's when I started noticing mood swings. Has anyone else experienced this or struggled with depression?
Regarding # of times I go in a day, I don't care as long as it's not because something disagrees with me, but one night with UC I went 22 times, then got up and went to work the next day,had been hospitalized twice in my UC days for blood transfusions and the constant and horrible pain and bloating? Ya, I may go 8-10 times any given day, but it doesn't bother me because it's MY normal, besides if anyone's paying attention they think I'm going pee again, haha because I'm the fastest pooper around! I learned to gladly accept any repurcussions of the J-pouch life, but I'm one lucky lady too. I also believe in the "f--- em if they can't take a joke" philosophy.
Joan
Just looking thru the responses to this thread - I too - am so thankful to the people on this forum. I have been busy and not active on it lately - but the loyal moderator - Jan - and answerers - Sharon, Chuck, Scott - and there are others I will forget - these people are truly heroes to me. I went thru a phase where I found this forum after 28 or so years of no support from others who truly understood what this is like - and then finally took the leap and got on here. Wow - the support - the caring - the someone always there to answer....I just don't know how else to say it - I love you people who have helped me and so many others. I will get back on here soon and do my part to help answer. The older one gets -on good days when your heart is open - you realize there is no way to get thru anything in life without the kindness of others and of strangers - without the connection. On those low days - and we all have them - it can feel like no one cares - but this forum is proof of a caring and compassion that I felt was missing in my life for many years regarding dealing with this j pouch - I didn't even know I missed it! Being understood is so very healing. Thank you thank you thank you to all of you out there. You have made my life a bit easier - the burden a bit lighter. With gratitude.
Just saw Cindy's reply way up - sorry to add one more thing - I too had infertility as a result of the surgery - I had it when I was 23. Never did have kids. It was hellish at the time - no other way to put it - at age 53, it is not a big loss at all - time changed all that for me and I live a full life and in some ways perhaps an easier one without kids. But, you have to find the mate who accepts this way of life. Husband # 1 left - remarried and had 4 kids pronto - really hurt back at that time. Husband now - of 20 years - just loves me. Such is life - some people cannot handle when the script changes - and I suppose looking back - at that young of an age - a man who wants his own biological children that badly should leave and have them...but man did that hurt. Cindy- I hope you are ok - maybe you adopted or maybe you, like me, found a way to fill that void in other ways. Whatever the case, I wish you well and I sure have been there. Whoever says life happens when you are making other plans - well -everyone on here knows that's the truth!
So my husband and I went to volunteer at our church tonight so to thank us the church provided a meal of chili and beans of course I passed but I was starved so I ate some salad sides with some unknown objects in them I ended up in the bathroom twice and just pooped so much now my bottom is on fire sometimes i just sit in the bathroom and pray from exhaustion for it to stop but once again I have to thank God I don't have UC any longer I am just so happy to have found this beautiful group of people that live in my j pouch world ! I think my greatest fear is my pouch will still fail after all these years and I would have to go back to the bag and I couldn't take it not ever again
Funny, I have no problems with chili nor salads!
Jan
Thank you Jan
No problem with chili or salad, thankfully
Joan Gilbert
Thanks for the Metamucil mixing tip (making solution thicker). I have tried for the last couple of days with great results!
Ken
I don't remember if I replied to this thread or not. LOL. My husband is 56 and he has had his j-pouch for 23 years.
JK Love posted:Joan Gilbert
Thanks for the Metamucil mixing tip (making solution thicker). I have tried for the last couple of days with great results!
Ken
Fantastic! It's always worked for me, and quickly. Glad to help. You're also not supposed to drink anything for 20 minutes after taking the thick Metamucil.
Had surgery at 40 Now 65!!! When younger, I took Metamucil and immodium on a regular daily schedule. Now it is only as needed. I think as your body and GI system age, you just need less slow down medicine. Just listen to your body and just realize that things can change. I've learned what foods speeds things up and what won't bother me. Going to the bathroom more often if just a new normal. It's better than having colon cancer from a FAP gene!!!
Bulgarian style cultured buttermilk helps my Pouch when it gets out of whack.
Hi everyone, I haven't been on this forum in years! I was diagnosed with UC at 15, and had my JPouch at 25, I'm 58 and my JPouch is 33 years old. I've had very few problems through the years, pretty much know what I can and can't eat, (but don't always avoid them) My biggest problem is my sphincter muscles are very weak and a lot of physical activity, and walking causes leakage, so I limit it, and or do them close by restrooms! I frequently have painful rashes and sore spots in my rectum which makes it hard to be active at times. But the JPouch was a life saver for me, allowing me to have a healthy life with my family.
I just joined this forum after suffering alone with complications of colectomy and j-pouch surgery for about 10 years.
For me, the use of opiates to slow my gut down was essential. It was the only medication that slowed down the transit time of food without giving me gas. Not to mention, it helps with pain too.
But once transit time increased and there weren't so many stomach and bile acids reaching the pouch unprocessed, my gut and pouch improved immensely.
I just can't believe how many posts I'm seeing that report serious pain and discomfort without any M.D. recommendation to try opiates in a controlled manner to address both pain and frequency of BMs.
Using opiates therapeutically does not make you an addict. I worked as a nurse in the jail system here in Seattle for many years and I have a lot of experience with addicts. The vast majority of people do not respond to therapeutic opiates by becoming addicted. After using oxycodone and a Fentanyl patch for about 7 years, I took myself off of opiates to see how well I functioned without them. It does take several months for your body and brain to readjust after years on an opiate but as a group, we've dealt with a lot of discomfort in our lives and gradual opiate withdrawal was not such a big deal.
I am doing relatively well now with only the occasional use of an opiate when my bowel function is upset for some reason. But I believe the relief of pain, the increase in transit time and reduction in the number of bowel movements that only opiates provided me allowed my gut and j-pouch the respite needed to slowly adapt and recover.
We are in an era of mass abuse of prescription opiates, which is leading to a medical backlash against their use in appropriate situations. I hope people with our particular GI issues, who may benefit immensely from their therapeutic use, will not be victimized by the repercussions of opiate abuse.
Has anyone else had my very positive experience with the use of opiates to reduce the frequency of BMs and pouch complications?
Cyndi
Have you tried pelvic floor PT? It's a very humiliating process but boy did it work for me The key to control is developing your core. Do you do Pilates?
I have a k pouch now, but that was for other reasons. J