go-go,
I definitly feel your pain. I went through a long period where i refused to eat. Before and after pouch. I spent most days and nights just posted up in the bathroom. It gets to the point where u think, whats the point in getting up. Might as well put a tv in here. But I truly beleive that staying positive is the only thing that gives you the strength to get through. I know its easier said than done. I struggle with it daily. 8 years post op. I also have horrible period problems. Those doctors wont do a hysterectomy because one my age (29) two so so so much scar tissue. But you truly have to relax, focus and accept.
This is truly a great place to come and talk and hear others. It helps. I went 6 years only talking to the docs about it. My family didnt understand and there was no way i was going to tell my friends. I was 15 when diagnosed with severe UC. I hope you continue venting and getting things out.
Hello J-Pouch_A-Go_Go,
I am very sorry that you had to go through so much.
An ileostomy is certainly the best solution for you.
I also live with an ileostomy and I am very satisfied.
Best Regards
Martin
I am very sorry that you had to go through so much.
An ileostomy is certainly the best solution for you.
I also live with an ileostomy and I am very satisfied.
Best Regards
Martin
im sorry that you had to endure such suffering.its a familiar story.i had my reversal done in 2006 and my j-pouch has been a very painful,miserable experience.i had chronic strictures,6 fistulas,2 j-pouch skin tags and excoriated rectal skin.the only thing that helped was narcotic pain killers which worked for a few years before i got tolerant to them and got more sick.the last 2 years have been so bad that i just had my j-pouch disconnected.i got my life back with a end ileostomy.its not the outcome i wanted,but its better than being in severe chronic pain,constantly in the bathroom,and unable to eat a normal diet.basically i could only function with working pain meds,calmoseptine and lidocaine ointments.i had severe burning pain going up my spine into my shoulders and chest,more specifically my left arm shook from all the residual pain.i was a slave to my j-pouch and the hospital.you can either go with a conversion surgery and an ileostomy surgery.ive had enough,and it seems you have too.
Dear A-Go-Go,
I just joined this group today because I too am miserable a lot of the times with my J-Pouch of 17 years (which very few people know about) and it feels good to know that you're not alone. I am also tired of constantly pooping and leaking, and always feeling this pressure in my butt, which sometimes can get very irritated and makes it really painful to walk, but I still have hope of one day figuring out how to get better, as some days can be decent. I really do feel for you and understand your frustration. Is there a reason you can't or won't get an ileostomy or a K-pouch as others have suggested?
I just joined this group today because I too am miserable a lot of the times with my J-Pouch of 17 years (which very few people know about) and it feels good to know that you're not alone. I am also tired of constantly pooping and leaking, and always feeling this pressure in my butt, which sometimes can get very irritated and makes it really painful to walk, but I still have hope of one day figuring out how to get better, as some days can be decent. I really do feel for you and understand your frustration. Is there a reason you can't or won't get an ileostomy or a K-pouch as others have suggested?
My first year I went 15+ times a day/night, two years later it was down to about five times. If you still have problems, you're doing something wrong. I can only suggest a regimen helped by a good surgeon who stayed with me, and things I learned. Diet don'ts: No coffee (none), I drink Berry's gold blend Irish tea - buy online. Drop a bag in coffee pot (not basket), fill to 6 cup line. I don't like American tea. No/very little dairy, booze, beer, cut way down on gluten and yeast products (no white bread). No fried or spicy food. Substitute rice for potatoes (I like basmati). Important, take a tsp three times a day of psyllium fiber (Konsyl or CVS brand), Metamusil doesn't work. Mix with a little juice, shake and down the hatch - it adds bulk. Take two Immodium with each treatment morning, noon and night. Acid reducer pill at night, you're prone to ulcers. Keep water close, you're always close to dehydration, you have no colon to absorb fluids. If your butt always feels like its going to pop, you probably have a diet/gas issue. There are other things I do, but for anyone reading this, its a start. One last thing - its rare I take them anymore, but my doc prescribed 30mg codeine sulfate tablets. I'd take one at bedtime or before a social event - it bought me 4 hours of no going, and it didn't mess with my head. Opium addicts have chronic constipation - enough said on that. Sorry for long winded treatise, but this is a complicated condition. Hope it helps. PS..exercise three times a week. Commit to getting your life back.
r2 in ks,
"If you still have problems, you are doing something wrong."
You have just offended many that will be reading your post. Just because you have it all figured out "for you" doesn't mean you have found the diet we all need to follow. I am sick and tired of 16 years of UC and my pouch of people telling me I am not eating right. I am really offended that anyone, who has gone through a similar situation, would have the gall to chastise those of us having problems with your magic routine and judging us by saying the above.
I'm not even going to get into everything diet and otherwise I have tried, including different diets, alternative medicine, acupuncture, etc.
There are people that have real pouch failures and it is not their faulty diet that cause them. If you had bothered to read past posts you would realize we all talk about foods, fiber, anti-diarrheals, probiotics, medications and everything that does and does not bother us. WE ARE NOT ALL ALIKE.
Thank you for including how you have perfected your diet etc. It might be able to help some posting here. It would have been best if you had not judged us as "doing something wrong".
"If you still have problems, you are doing something wrong."
You have just offended many that will be reading your post. Just because you have it all figured out "for you" doesn't mean you have found the diet we all need to follow. I am sick and tired of 16 years of UC and my pouch of people telling me I am not eating right. I am really offended that anyone, who has gone through a similar situation, would have the gall to chastise those of us having problems with your magic routine and judging us by saying the above.
I'm not even going to get into everything diet and otherwise I have tried, including different diets, alternative medicine, acupuncture, etc.
There are people that have real pouch failures and it is not their faulty diet that cause them. If you had bothered to read past posts you would realize we all talk about foods, fiber, anti-diarrheals, probiotics, medications and everything that does and does not bother us. WE ARE NOT ALL ALIKE.
Thank you for including how you have perfected your diet etc. It might be able to help some posting here. It would have been best if you had not judged us as "doing something wrong".
TE, I don't think r2 intended to offend, but was just trying to offer what worked for him. Sure, it is simplistic to assume that everyone would respond the same as him, and he did not account for secondary disease, structural defects, poor circulation, etc.
Jan
Jan
I thanked him, at the end, for offering his sound advice. I am sensitive to anyone that puts the blame back on me, or any of us. I've struggled for too long with this disease. 
Im am in your exact hell... what do we do? How do we move forward. I tired all around. I cant function!
We try everything 3xs...at intervals...if at first it doesn't work....doesn't mean that it won't in 3months...your body is changing, adapting and evolving so what seemed like a good idea before but flunked may be a good idea later on...keep a diary so that you know what/when you ate it/did it/took it and go back over your notes to see where you have been...some people, like TE said, try it all, do it all and still have horrific problems...not their fault...it happens. And it hurts but you have to keep trying unless you are ready to give up or give in...and the alternative is more surgery.
Sharon
Sharon
I think that R2 in KS has some good advice, especially taking psyllium husk fiber 3X a day and avoiding caffeine, dairy and excessive bread products. I would add raw fruits and vegetables to the list of things to avoid. And it's important to not eat too much, and it's even worse to eat too little. Unfortunately, I am not disciplined enough to avoid all these things on a consistent basis and I suffer for it. I also tend to overeat which makes things worse. By overeating, I'm referring to volume, not calories. In other words, if I eat a whole banana and a good handful of nuts, along with whole grain cereal and soy milk, I WILL suffer later in the day.
Another bad thing to do is to PUSH, and you all know what I'm talking about. I think I finally figured out what's causing all the burning from the leakage I get - it's from hemorrhoids caused by trying to push every bit out. It took about 4 weeks of trying to go easy till it got better. Even though I still get leakage (my major problem) it hasn't been burning me as much.
Yes, everyone is different, but I do believe that there are some common things that get us better or worse. My leakage may be caused by strictures that tend to develop periodically, or maybe just from the damage I've had down there. But I do have better days when I am more careful with diet. I also need to take one Imodium a day.
Another bad thing to do is to PUSH, and you all know what I'm talking about. I think I finally figured out what's causing all the burning from the leakage I get - it's from hemorrhoids caused by trying to push every bit out. It took about 4 weeks of trying to go easy till it got better. Even though I still get leakage (my major problem) it hasn't been burning me as much.
Yes, everyone is different, but I do believe that there are some common things that get us better or worse. My leakage may be caused by strictures that tend to develop periodically, or maybe just from the damage I've had down there. But I do have better days when I am more careful with diet. I also need to take one Imodium a day.
Shana,
We are all different. You say to avoid all raw fruits and vegetables. I eat raw fruits and veggies every day in my protein fruit smoothies. No problems with them at all.
There are pouchers who can eat fresh fruit and veggies without pureeing them like I do.
You have figured out what you can and can not eat and drink plus how much psyllium you need. In the beginning it felt like I couldn't eat anything! I used a lot of psyllium and Imodium and gradually dropped using them. I use Imodium and sometime psyllium capsules when I get c-diff and/or cuffitis. In other words when I start making too many loo trips. I use Imodium when I have to be away from facilities too long.
My pain no longer has nothing to do with what I eat, I have figured that out in 26 months.
We are all different. You say to avoid all raw fruits and vegetables. I eat raw fruits and veggies every day in my protein fruit smoothies. No problems with them at all.
There are pouchers who can eat fresh fruit and veggies without pureeing them like I do.
You have figured out what you can and can not eat and drink plus how much psyllium you need. In the beginning it felt like I couldn't eat anything! I used a lot of psyllium and Imodium and gradually dropped using them. I use Imodium and sometime psyllium capsules when I get c-diff and/or cuffitis. In other words when I start making too many loo trips. I use Imodium when I have to be away from facilities too long.
My pain no longer has nothing to do with what I eat, I have figured that out in 26 months.
Hi Go Go Have been following for a few years and wanted to know how you are doing after some time? I am going to have my Jpouch removed this Feb and after 21 yrs have developed alot of mechanical failure. It served me well but it's time to say goodbye. I hope whatever decision you made you are feeling better and your spirit is more uplifted!!!
dear person..you have every good reason to feel as you do but sounds like you let it go to long..you might need to look into the other options and perhaps you have..is there any reason the perm.ileo or k pouch would not be an option?
also i think you should be seeing someone for your mental health..perhaps therapy can help you get out from under the rock you are stuck under..perhaps even an antidepressant might be in order so you can take positive steps to change your life..
most often depression makes it impossible to move forward so looking into that might help..you will probably have to push yourself to do this as again depression is just as devastating to ability to help yourself
do you have anyone that can help and support you in any of this?
also i think you should be seeing someone for your mental health..perhaps therapy can help you get out from under the rock you are stuck under..perhaps even an antidepressant might be in order so you can take positive steps to change your life..
most often depression makes it impossible to move forward so looking into that might help..you will probably have to push yourself to do this as again depression is just as devastating to ability to help yourself
do you have anyone that can help and support you in any of this?
Go-Go, I can ditto almost everything you shared. I am sitting on commode with my IPad now! So much I can share with you, I could write a book. I was born with FAP, inherited colon cancer. Surgeries started at 12 yrs. old. Have had 8 abdominal colon surgeries, not counting rectal ones. I had my J-Pouch in 2000, 12 yrs. ago. It was pure hell. I have taken every kind of medicine there is. Dumping syndrome will not let me go anywhere after I eat. Out to eat with friends/ family, no way. I only eat 1 meal a day & very little. No life, not much fun. I am single, live alone & I have 2 grown married children, 6 grandchildren & 3 great grandsons. I love them dearly. But in pain all the time. Back, arthritis, osteo arthritis, psoriatic arthritis, all the (authritis) haha. Diabetic, neuropathy. Sorry,I can go on. I want a better life , I have a lot to live for & I want to. My last resort is an ilieoscopy. I am seriously considering it. Drs. Not sure yet. I hate the thoughts of another major surgery. Sorry so long, I have not posted on here for a long time. But my heart goes out to you. I can't say I know what you have been through, BUT, I know what I am going through. Time to get off the pot!!! Lol you are not alone, a lot of people have helped me, & are there for you too. Love to you, PFKSJ.
J-pouch-a go-go,
We haven't heard from you for a while and I am wondering how you are doing? I hope you are feeling better. Have you found any better ways to live with your j-pouch or have you taken steps to have further surgery?
The same goes for everyone else that is having problems with your pouches. I am going to wait until my next Mayo appointment and will be discussing future options with my GI and having a surgical consultation.
In any event I hope you are feeling better.
We haven't heard from you for a while and I am wondering how you are doing? I hope you are feeling better. Have you found any better ways to live with your j-pouch or have you taken steps to have further surgery?
The same goes for everyone else that is having problems with your pouches. I am going to wait until my next Mayo appointment and will be discussing future options with my GI and having a surgical consultation.
In any event I hope you are feeling better.
I wish we had heard back from the person who started this thread. I have FAP and got j pouch at age 23. I am now 52. Lots of problems along the way, but also times when I did really well. Now I finally quiet working as I just couldn't take it anymore. I know exactly how you feel about "all I do is poop". No one else would get this. If I eat...I poop shortly thereafter and it's always been this way. I could make it last longer when I was younger - doesn't work anymore.
I am going to look up K pouch. I really have zero interest in another surgery, but I too have pretty much stayed home for several years just to be near the toilet. It's depressing and a cycle of "try hard to eat this or that" - sometimes it works, sometimes it doesn't, try to be positive, etc. Yep - already on Zoloft. Rx major depression and PTSD. I never did apply for disability - too ashamed. How on earth would you explain this to a judge?
I am lucky as my husband is very supportive. We live on half what we used to and he is a teacher. We are two people with masters degrees living on one teacher's salary now at this age. It's hard, but we manage. We downsized, drive old cars, and no vacations anymore. We save and don't spend. At all. It's not that fun when you were used to having just enough money to take a vacation once a year, fly to visit family, etc. - that's all gone. That said, I know many in the country are dealing with this due to the economy. I know attitude is everything and I try to make the best of things - I do a lot of knitting, painting, reading, and netflixing. I know we are not promised an easy life. I know people go through so much worse. But, it does help to hear from others out there who are going through this. It's relentless and it is exhausting. I truly believe as the years went on that no matter how much "they" say you get plenty of nutrition through small intestines..that eventually it just doesn't work as well. Getting older with the pouch just makes it harder. Energy is so low. I think that's what I miss the most - life energy. I also cope by trying to help out with people who are dealing with issues who live really nearby and I can go help someone in need and then get right back home to my bathroom! I used to contribute so much in my job as a school counselor. I quiet at age 45 after a botched hysterectomy (they perforated my small intestine) - emergency surgery, NDE, then got bowel blockage, hospital again, etc. I kept a going and then sort of had a breakdown. That's when I quit work. I would imagine wounded warriors go through way worse...and the government promises them all kinds of help ...and then you hear the horror stories of how lousy the VA is. So, I think this is life. I think we knew what life was like prior to the pouch and even during the early years of the pouch (if it went well for awhile) - and then we got older and it all just adds up and at some point, it feels like "how is this life?" The secret has to be to detach from an idea of how we thought life was going to be and living the one we have as best we can. And to forgive ourselves that we can't be the superwoman we thought we could be. I'd appreciate any replies as I'd feel less alone. I'm not gonna give up - I couldn't do that to my family. Thanks to all who wrote. It truly makes me feel less alone.
J-Pouch_A-Go_Go posted:I've had my J-pouch for 12 years and I was declared *disabled* "officially" around 2005 but I had started applying in 2002...had my J-pouch surgery in June 2000...take-down done 6 months later in December. It was the most horrible thing I have EVER been through. NO PREPARATION from my Colo-rectal surgeon at all. I was going 35 times a day and screaming in pain every time...my nurse had to help me wipe my own butt every time. They hadn't given me anything to protect my skin and I was supposed to "wipe" myself with a moistened cotton ball...come on, were they serious?? IT...WAS...HORRIBLE!! My nurse took pity on me and found some other kind of GI nurse (that I had never seen while at the hospital) to come see me. She gave me pastes and creams and talked to me. She helped me alot.
That first year...they were giving me the highest doses of the strongest constipating medications that they had. I was even giving myself shots in my arm or belly 4 times a day (can't remember the name...Sandostatin maybe?) Had to sleep sitting up because of gas and incontinence. Took 2 years to recover from the surgery. Basically was unemployable from then on. Had 2 more surgeries after that like a dominoe effect...hernia at ileostomy site and my periods got really crazy & painful so, of course, had to have MORE SURGERY...a hysterectomy. AND low and behold, I was also diagnosed with Fibromyalgia 2 years after the J-pouch surgery. Started to have severe allergies too, especially to latex & adhesives, etc. Having the J-pouch surgery was the worst decision I've ever made in my life!
NOW...twelve years later. I am divorced. Live alone with a sweet little cat that I can't take care of & am severely allergic to. My pouch has shrunk over the years due to scar tissue and Chronic Pouchitis...it is the size of a juice glass and does not expand because of all the scar tissue. And I am SOOOO TIRED OF POOPING sometimes I just don't think that I can go on. I wish I could just stop eating so I will never have to go to the bathroom ever again. I have an anal abscess/possible fistula now...more surgery in my future. I was in the hospital for a bowel obstruction 4 weeks ago. I've kinda lost the will to keep on keeping on, ya know. I am venting here...and I don't know if anyone will ever read this are not. My life is literally crap. Since I am venting. I am NOT talking about all the things I try & do to make things better for myself. I am just really down because I have been sick and home alone for many months now and the obstruction and abscess drama has affected me really badly this time. I had started to try and build a life for myself a couple of years ago and whenever I try to climb out of this black hole of Chronic illness, I get kicked back down and people kind of forget that I exist. So that is the short version of my life with a J-pouch. I wish it was happier and better but I am so so sick of all of the pain...I can't take any pain meds for it either because they will block me up...I only have the heating pad and crying. Life really sukks right now. I'm only 53...I can't imagine living for years like this. There has GOT to be more to life than this...than pooping!! If you read this...thanks for doing that...you are either really brave or really really bored....lol! Cindy
i feel your pain Cindy. i am currently in thr process of trying to hold my life together
Donnalou, welcome to the forum. There is a lot of personal experience among our members and we are here to help each other. If you could provide us with more information about your situation, I am sure that you will receive some helpful responses.
I saw that I had replied to this 2 years ago - here is what is interesting - now, I am doing quite well overall with my pouch. Things change - which is why when one is in the thick of it, it seems impossible. I do not work and we live on very little money, but I have found ways to create at home and in a strange way have found some measure of inner peace. I never know when the next flare up or issue will come - but I try to stay in the now - I am thankful for any day that is pain free and that I am able to do the simplest of things. I do not mean this to take away from anyone in the thick of horrible pain/depression/etc. regarding the pouch - I have been there many times. When in that state, one cannot see a way forward or out. It amazes me that if one just stays here....that sometimes, a better place is ahead - but often, it comes with a total change of mindset, lowering expectations, and accepting the now. It is impossible to do this when in the deep pain or depression - but it amazes me that it has passed again. I will think of you and anyone suffering today. I am so sorry for any suffering anyone is experiencing due to our particular ...and peculiar situation. What wonderful support you will find on this amazing forum - it helped get me through a very dark time a couple years ago. It really helped to know I was not alone.