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After dealing with UC for 20 years, I had j-pouch surgery because it was supposed to be "the cure." That was three years ago, and my life is not better. I had to wait 19 months before I could have the ileostomy take-down because of severe cuffitis. After which, I ended up with pelvic floor disfunction and months of physical therapy. I suffer from chronic pain as a result of nerve damage from the j-pouch surgery. I am thankful not to have the bag, but I don't feel I've been cured either. I just have a different set of issues. I still use the bathroom 8-12+ times a day and have to relieve myself 2-4+ times a night, even though I cut off food and drink at least 4 hours before retiring. Many days I wake up tired and sore with no energy to lead a full life. I've had to give up teaching because of my limitations. I have not slept through a night in more than 3 years. Generally, I'll get 2-4 hrs. of sleep at one time. I've tried drugs, diet, and relaxation techniques, and have been advised to accept my limitations. For me, j-pouch surgery has not been a cure.
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I could have written this post. Three plus years later I am still dealing with the major impact this surgery has had on my life. I agree for some of us it brings with it a whole new set of issues and no surgeon should ever sell the as a cure for UC. I remember my surgeon's exact words when he was following me for dysplasia... 'you don't want to have this surgery unless you absolutely have to'.

I'm getting better at accepting my limitations as you may over time, as well as accepting the fact that for as long as I am able to retain my jpouch, I will never be medication free, nor will I ever have the energy I had prior to this surgery. I am also up two times or more a night. Yesterday I stopped eating by 3:30 and was still up twice at night. My new norm is exhausted from continual sleep deprivation.

Try and stay strong and try and focus on the good days versus bad. Get rest whenever you are able to grab it as it is a precious commodity to some of us Jpouchers.
Count me in your rant, too. My migraines have increased 100% since my surgery and I don't get relief from cuffitis/pouchits for very long before I get hit again. I also have anemia and my supplements aren't helping. I am exhausted and uncomfortable most days. I explained to a friend that, although my surgery really was almost emergency, I feel I traded UC with periods of feeling horrible and sick and periods of feeling absolutely fantastic for my j-pouch, where I walk around feeling crummy most of the time. Not one of the lucky ones, I guess.....
Thank you so much for sharing with me. It really does help to know that I am not alone. Fatigue and exhaustion due to sleep deprivation are a constant, and thinking about trying to get back into the workforce is a source of major anxiety. At this point, I don't have the energy and stamina to hold a job. I have worked since the age of 14, and 40 years later, I am having a terrible time adjusting to my new limitations. I pray that in time I will be able to sleep regularly and be able to function with my wits about me. In the meantime, I'm trying to be kind to myself and find comfort in the fact that I am not alone. Thanks again!
I visibly wince when I hear people being told that surgery is a cure and that it will turn the clock back. It is a trade-off, pure and simple. Yes, it cures the colitis (no colon- no colitis), but the door is open for new challenges.

I feel lucky that I went into surgery with my eyes wide open and fully informed. Things turned out to be actually better than I feared, so I guess there is that. But, I did have complications, and other chronic illnesses that are unrelated. I won't get into it, but I am on medications that are more heavy duty than when I was treating for UC. Such is life.

I had years of interrupted sleep and I was running at half throttle during that time. But, the good news is that time has been my ally, and things gradually improved over the years. My surgeon told me that once you hit the one year mark, that is where you expect to stay. But, for me, that was not true, and I saw improvement in my function over 5-10 years. So much so, that I reduced my Imodium use from 8 a day to 1 a day over a decade.

I was also blessed to not be working full time when I had my surgery. But, I did have two young boys at home to keep me on my toes. I volunteered daily at their school, and later I worked part time.

I think my key to success was being willing to accept change and adapt to a new normal. Without that, I would be forever cursing my choice. In reality, my choices were slim- ileostomy, j-pouch, or bleed out. None of them very pleasant choices.

In the nearly 20 years since my surgery I have been camping, snorkeling, hiking, traveled to Europe, and gone on very long drives. My husband does not have a j-pouch, and his stamina is not what it used to be either...

I am not telling you that you should just suck it up, but trying to tell you that there is hope that this is not all there is and better days may well be in store for you. No guarantees, but definitely possible.

Jan Smiler
i agree with jan however,..surgery for jpouch for me too just gave me different issues and not better just different..my understanding is for most people surgery improves their lives and they are satisfied with results..for about 10 per cent of us things just do not work out that way..unfortunately i too was told pretty much i would be rid of colitis and might go to bathroom 4 to 8 times a day and from time to time there might be some inconvenience of pouchitis but it was easily taken care of..this was not told to me just from my surgeon but another one as well..i was not prepared for what i eventually got after this surgery..and its a mixed bag of all kinds of problems with pouch and truthfully i never know what it is going to do..and have not figured out how to avoid the worst of it..i am not on any regular drugs right now with help of my diet.. and for that i am very grateful but i still have some symptoms that come as they please that knock me off of my feet..some are very painful and
some annoying..i never have slept through a night i average 3 or 4 times getting up..being retired i adjust to this by being a late riser(have no idea how anyone who works does this!)again so grateful this operation was well after i raised kids,and worked..

but on the other hand this operation was not by choice i had to do it..ran out of options..i do not want a bag and feel pretty solid about that
..i do not feel poor me .. it is what it is.. i consider it my challenge in life and we all have or will have challenges..on my good days i go about living and try to have a positive attitude..i still hold out hope i will get a better handle on it and feel i have made some progress after 8 years and just had to adjust to the changes ..over all i think i handle it pretty well and was reminded of that by my daughter in law recently ..she remarked that my upbeat and generally smiling face
makes her forget i live with this debilitating
condition..that made me feel pretty good..
because i know if you fake it enough it becomes so..

and i might add if in fact my doctor had told me what could possibly befall me i still had to have operation and i would have thought i had as good a chance as anyone else to be in that 90 per centime of satisfied jpouchers..

and with any operation as serious as this there are no guarantees ..

stay hopeful..adjust as best you can..we humans are amazingly adaptable..and most of all be kind to yourself..
Disillusioned,
I am so sorry. I really am. I know how painful and frustrating and angry you get at not being able to just go back to being yourself.
I have had a k pouch for over 30 years. (same pouch, different exit strategy...I have an abdominal stoma).
I had the same choices as everyone else: bag, pouch, die.
I chose the k pouch (j did not exist at the time).
I have had good years and bad, terrifying surgeries that were never ending (12 in the last 10 years)and tons of redo's. It has knocked the stuffing out of me. Yet I still love my pouch because somewhere inside I know what the alternative was. I had IBD and displasia (family has FAP)...I had already had a dzn surgery to try to 'fix me'...this was the end of the line to give me my life back.
I didn't get 'my' life...I got a new and different one that I had to learned to adapt to.
I am permanently exhausted, consider naps my new drug, eat for my pouch and not my mouth. Empty 10-12xs a day (when waking and before bed and before and after each meal plus 1xs in the morning and afternoon) and I am a teacher. It took me 3 years to go back to work full time and I am stressed out at the thought of each new semester.
I work at 5 different universities and travel hours on public transport daily. Some evenings I cry from exhaustion on the way home. Some I call hubby and beg him to pick me up (or I will sit on the ground and sob until some cop picks me up for public disturbance!). I take so many suppliments that he makes fun of me. I still run my household, care for family and g-kid.
This is not easy. I do not often have 'fun'. I survive but then again I never expected to live to this age (53) or have a semi-normal life so I am grateful.
You adapt, adjust and cry your eyes out in the shower when no one is looking. You beg for relief and pray for a full night's sleep. And then you put one foot in front of the other and go forward. No magic. No miracles.
For some weird reason I am still an optimist. I believe that it will get better and that my life will improve. I want to see China and Africa and South America. I still have dreams and refuse to allow this stupid disease to get the best of me. I fight for the life that I diserve and will til my dying breath.
Please do not give up the good fight. You will find your balace and you will find a way to get your life back.
Sometimes it just takes more time than we expected.
Sharon
Sharon, I have followed your posts since finding this forum last year following my BCIR surgery in April, 2013 (previously had an S pouch for 30 years, with issues). You are an inspiration to us all and especially those living with difficult conditions and physical limitations. I am truly amazed with what you are doing on a daily basis. I found ways to adapt my lifestyle with my S pouch, considering how often I had to use the restroom and tolerate ongoing soreness “down there”. Then, I had a major lifestyle change after being hit by a car 14 years ago when properly crossing the street at a crosswalk. The resulting back injury is permanent, has produced severe pain at times and has significantly limited what I can do, but I do not let it keep me down. Although I no longer go alpine skiing in the Rockies, participate in equestrian competitions or take long walks, I still do many of the activities I enjoy. By the way, my BCIR eliminated the frequency problems and butt burn and allowed me to have a more normal life.

I retired from my full time job in Milwaukee and my wife (who is very supporting of my physical limitations) and I bought a lakefront retirement home in the Wisconsin northwoods. Our home is surrounded by dense woods and we observe nature at its best right from our deck. This morning, we observed a fawn that appeared to be hours old nursing from its mother.

So, my thoughts for you, disillusioned and others posting on this thread is to hang in there, do as many things you enjoy that you are able to, and get enjoyment from the little things in life.
Bill
You are very kind Bill,
I grew up in a household with a Holocauste survivor and I must say, It colours your life and your outlook.
My dad never gave up or in. He is a fighter in more ways than one. He is a survivor.
I may have not liked it or appreciated his 'tough love' but honestly, it made me who I am.
He always said that there were 3 ways of doing everything: The easy way, The hard way and My way. I have never been good at pity parties (although I have had my share) and there have been some memorable break-downs where hubby ducked as hot casseroles flew across the room (they were full at the time!).
I am no angel and certainly not fearless or bullet-proof.
But being sick my whole life I have learned that the people you love stick around longer if you paste a smile on your face occasionally (in spite of the pain), you laugh at your own situation (including those humiliating ones that we have all known) and if you say thank you and please.
I rarely yell, scream or rant (except for here) and none of my colleagues know of my condition or the pain that I am in. What would be the point? It wears thin pretty quickly. Won't get me a raise, merit points of kudos.
I don't hide it, I just don't exibit it either.
I get joy out of helping others and it helps me to forget my pain. I love kids & animals and they crack me up. So I surround myself with them.
Life suck sometimes: for us it is more often than not. So you have got to laugh. A lot. All the time, constantly and often when I am alone (add a purple hat and they will cart me off!).
I have no constant rule except, find the joy, surround yourself with people you like and rid yourself of the others and give more than you take.
(please remind me of this post the next time that I rant my head off at someone or something stupid).
Sharon
Thanks to all for sharing your frustration and experiences. I see myself in many of these comments.

I can't remember the last time I slept through the night. I desire so much to have a better quality of life as I am not satistified with how my life is.

Too many stressors of this illness gets me down not to mention being in the process of a divorce that I can't wait until its final so I can close that chapter once and for all and begin a new life.

So many times I want to make plans with my brother and friends and so many times I have had to cancel due to either Pouchitis or just not feeling generally well, incl a poor night of sleep.

People on the outside just don't understand what you have to deal with day in and day out. I get so tired of all the symptoms and getting Pouchitis way too frequently.

I was talking to a great friend at my church and found out she is a Nutrionist. So we had a great conversation as I am in the process of seeing a medical doctor who practices in Holisitce Medicine too. I have not given up in trying to improve my health to feel better.

The Nutrioist knows that I am also getting a divorce and will pursue an Annulment once the Divorce is Final. So she says that once that happens, your stress will reduce and who knows, you may meet another woman and remarry.

I informed her that I would have no objection to remarry once some time has passed however long I need to heal from a bad marriage. I do know what I would like in a woman and what I do not like or will accept in someone that is not right for me.

But the fact remains with my health issues, that will never come to pass. She was being nice and did not agree with me. But, I mean lets face it. Suppose I make a date with someone for the following week, I will always worry about how will I feel when the time arrive. Will I have Pouchitis, or a bad night of sleep, butt burn, diarehha, gas or bloating, or a combination of more than one of these?

Then I would have to cancel that date. If you are married, then get the disease, that is one thing. But if you are not married and want to meet someone, well, that puts you behind the 8 ball if you will.

I know I have a lot of great qualities in realizing the person I am. I have been told and believe I am a good person. I do lots of charity for the poor and just want to help people. I am not a strong physical person but have inner strength but am still growing.

But to start out to meet someone with my health issues and I will turn 59 in October is just a stretch of the imagination and not realisitc.

Too bad the J-Pouch site does not offer a dating site so that someone would understand what you are going through.
Last edited by Rocket
Rocket,
First off....Boy are you wrong! Any decent woman with a heart and soul would be lucky to have a nice guy like you...(and I have no idea what you look like)...you are a catch and a half. You are just in a dark place right now and cannot see the light at the end of the tunnel...that will come in time.
I was a pessimist like you at 25...Sure that my life as a woman was over (recently divorced, partially due to my health and pouch)but I was so, so wrong.
Good people recongnise good people and are attracted to them. You're good folk.
Once you're finished with the ball & chain on your leg and get out of your marriage you will have so much more strength and evergy...and less symptoms...Stress plays a huge role in our general and pouch health.
Secondly, I am not a good 'planner'....I hate planning anything more than a few hours in advance...I know me and my pouch. Work is about all I can handle dealing with 'in advance'. My social life is largely based on spur of the moment outings and that included dating way back when. I warn All of my dates and friends that they should not expect me to know more than 3hrs in advance if I was free or not...it worked out well. They would call me from wherever they were and I would join them or not.
Same with dating...you do not have to follow 'the rules', invitation on Monday for Saturday night...Makes things light and easy and less pouch-stressful.
Rocket, you will find your way...you are young, courageous and determined and full of love to give...I trust that you will one day find a woman worthy of you.
Hugs
Sharon
Sharon, that was beautifully said. Sometimes we feel we're the only ones going through something so difficult and traumatic and everyone else is riding a Harley yelling, "yippee!!" But really, most people around our ages have something medical (or emotional, or both) going on and are more empathetic to others going through their own things. Rocket, a good woman is going to look at ALL of you, and would be lucky to be with you.
Lambiepie,

That is very nice to say. Thank you. The other thing I didn't mention is I don't want to be a burden on anyone else either. I don't mind if I have to take care of someone, but to put that in going into a relatioship before it even starts, well its hard on a marriage that is for sure.

It is just how I feel and how I see things I guess. My faith in God is very important and there have been many times that I have prayed on this that someone, someday, would have similar interets, but more importantly, make God there number 1 priority by putting HIM first.

I love to have fun and be comical at times. But when I am really sick, its hard to do that and then I just clam up.

But I think people like me, or others who have a chronic condition, its part of our life. It doesn't define who I am, but to have these challenges everyday is tough when things are not going well with your health.

And I agree, there are plenty of good women out there, but ....

Rocket
As a wife of a j-pouch guy (he has had it for 20 years), he has had moments of despair(especially with the pouchitis and he has had a few obstructions that have been scary). However, it hasn't let him down. He fights through it. He was sicker with the colitis. If he didn't have the surgery, we wouldn't have had a child. He is my hero. Hang in there...
Lablover,

You must be a very special woman and your husband is most fortunate.

I don't know what that is like. Even my two teenagers have complained to their mother that they do not like it when I am in my room and I sometimes groan with pain. For the most part I keep silent, but they do see me holding my gut cause I hurt.

That is really hurtful because as a human being, and many trips to the hospital, I have heard other patients besides myself who hurt so bad, its just a natural reaction to groan in pain.

When I confronted my daughter she said that she did tell her mother that. So I told her that I am not a robot, but a human being and even Jesus groan in pain during His Passion.

Knowing that she hopes to marry someday and have children, I told my daughter that when she goes into Labor, she better not groan, but laugh with enjoyment when she gives birth and actually ask for more pain, not pain meds.

My soon to be ex-wife and her family used to hate that I would feel so poorly. Granted I used to complain a lot more, but I can't even groan in the privacy of my own room.

Rocket
Lablover,

You're very welcome.

Her family felt sorry for their daughter. All they would do is complain about me that I was groaning again. Meanwhile, they would use the "F" Word in front of my small children (when they were younger) but that was OK. There purpose was to try and change me in everything, even my beliefs, morals, made no difference.

Once I am out of that house, I will have inner peace for sure though I am working to find that even now.

I don't believe in Karma, at least not in this life. I used to believe in Karma, but after all the years I have been on this earth, not once did I ever see what was done to me, that the other person would get it back.

I'm barely touching the surface of what abuse I had gotten from my wife and her family. You would be shocked. The abuse got so bad that in 2006, I attempted suicide becasue I could not take it anymore from their making fun of me and lots, lots more. Their only comment was, "Sorry I felt that way." Which a comment like that is more of an insult because you are putting the responsibility of your own actions on the other person.

Apology from them? Never. I know if I knew I was causing so much pain on another person that they almost made a decision to take their life, I would feel horrible for a long, long, time. They actually wanted me to apologize to one of them because I stood up to them for much too long and I refused to do so so that is why I wanted to end my own life. They don't have a conscience.

Thank God I am not the same person anymore.
Rocket
Nice to know that I'm not the only one that groans or moans with the pain. Shame on your wife and her family making fun of suffering. We never receive apologies from people like that as they never think they do anything wrong. The best apology they can come up with is "I'm sorry if anything I said made you feel bad". You will never hear them say "I'm sorry I did something that made you feel bad". It's always your fault for taking their actions the wrong way as they are perfect! They never loose sleep.

Sorry you've been in that situation for so long and that you were so low. They won't have you to pick on any more. Good riddance and on to your life surrounded by good people with consciences. Smiler

I know you are going though a rough time now and am praying for you to be over your divorce and away from your wife and her family as soon as you can. It will be nice to see your children without her there to intimidate them. I am just thinking they will feel this way as that is the way I felt when I was a kid and got away from my mom and could be with my dad one on one. Children, especially teenagers, know more than you realize. I do believe in karma in this regard. Once children grow up many see through the manipulations that happened during their childhoods and it backfires on the offending parents. You won't need to do anything.
Hi TE Marie,

God I hope you are right. My 17 yr old daughter is so isolated from me. She is very loyal to her mother. Her mother can do no wrong. She never wants to spend time with me either.

My son said he will spend Father's Day with me. My daughter gave me wishy washy answeres. Of course her answer is No.

My daughter says she has no time because she is spending a good part of Saturday with her friends and Sunday she wants to study for her Finals. I tried to get her to studay on Saturday, but nothing doing.

So then I reminded her that on June 21st, her, my son and I were going to Dorney Park in Pennslyvania. Its an amusement park with rides, and water rides. So she again gives these wishy washy answeres and is not going.

If it was with her mother, she will go.

This is what gets me in such a foul mood. So once I am divorced from her mother, my daughter and I will not have a relationship. I will not force myself on her nor set myself up for another let down and get angry all over again.

Rocket
Give it time Rocket, Abscence makes the heart grow fonder...
And she is just a kid.
Once you are out of the house and her mother's foul reach she will see you in a different light...as a strong and independant man who lives his life to the fullest and she will become proud of you.
It just takes time with kids.
I hope that she grows up soon. For your sake. For now just consider it some more of the collatoral damage caused by your ex.
Sharon
Disillusioned,
I had my J-Pouch surgery on 07/12/12.I have suffered like you and many others on this forum,by what you have described it sounds like you might have IPS,Irritable Pouch Syndrome.Dr. Bo Shen at the Cleveland Clinic diagnosed me with it,the definition is HYPERSENSITIVITY TO NORMAL BOWEL MECHANICS.I have had many scopes,no diagnosis of pouchitis,or anything mechanical.It sounds to me that this might be something you might want to mention to your Gastroenterologist.I hope you feel better in the future.The people who post on this site are very courageous and very informative to myself and many others.I am trying to decide whether to go for a permanent bag or keep trying to hold onto j-pouch,very frustrating,I hope you feel better.
Hey, Pauln, that was my dx, too - IPS. I'm planning for permanent ileo surgery in the fall, possibly sooner. i want to get my life back. There are some posters who had j-pouches removed and perm ileos. If you want, look under "ostomy and skin" section. They helped me tremendously with the decision.I see you're on the other side of the river from me!
There is an old saying Rocket,
"Give time some time"...you cannot rush healing...we all know that so well.
Your daughter needs to heal from the war zone that she called home and the horrid attitude that her mother had of you.
She needs to learn who you really are, not who her mom has been telling her that you are...forming your own opinions is really hard work! Seeing her dad in a new light is going to be both an eye opener and a shock...it will mean that mom was "wrong"...that she "lied" and that now your daughter needs to live with a whole new set of truths and come to terms with the fact that it is Mom who is the problem and not you.
That is a who lot of information to develop and a whole lot of reworking of the brain paths...so give the kid time to 'discover' you and don't overload her with too much information.
You are worth getting to know and have so very much love to give...
Sharon
I"m one of those who got rid of my pouch due to chronic pouchitis and have had my ileo for 13 blissfully healthy years. Pouch came out 10 1/2 years ago. Have had 2 beautiful babies since then - now 8 and 6. Living a wonderful life with no drugs, no diet restrictions, no activity restrictions.

Have never had a moment of regret. Woke from pouch removal surgery feeling fabulous and knew I made the right choice.

Feel free to PM me if you have questions - I'm not here often, but I'll get the PM notice.

Jill

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