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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
Original Post
A go-go,
I am so sorry that you are living in this hell...a lot of us here really do understand what it feels like to not be able to catch a break, feel like your life is no longer your own but belongs to the bathroom..I won't repeat what the others have asked you...I am sure that you have considered it, thought about it and even spoken to your surgeon about it...so my question is why are all of your surgeries leading to more surgeries? Why are you so locked up with scar tissue that your pouch is 'stiff'...and what can be done to give you and your poor little body some relief...Can they temporarily unhook you and see if it gives you some relief? Would you be willing to try?...I can't imagine how frustrated and angry you must be at all of this...How can we help you? Is there anything that we can do other than read and listen and lend you a shoulder?
For now, hugs and as much support as I can give...
Sharon
Go go,

So sorry you have been through so much trouble. That's what my life was like with UC and the reason I had this surgery in the first place. Can you get a permanent ileostomy or is something with your condition keeping you from getting one done? I would do that in a heart beat if my j pouch gave me that much pain and grief. Life is too short. I hope you can get some relief one way or another.
Go go,

You really need to think about the ostomy! That is always in the back of my mind with my new j pouch! I too, have said food is like poison to me but I have to give myself more time to heal (5 months w/jpouch). You have given yourself enough time for this torture! Your mental health is suffering greatly! Stay in touch w/this site it helps a great deal!

Roberta
J-Pouch-A-Go Go,

I think I understand a lot of what you are going through. I got fibromyalgia pain, etc. before my surgeries and have been dealing with that flaring and all of my post surgery J-pouch problems for 2 1/2 years.

I was recently approved for Social Security Disability benefits with my first application. They consider my health problems unlikely to improve as the said they will review my case in 5-7 years.

I'm 56 so we are close in age too. My husband is getting tired of all of this as well. I'm not "fun" anymore. Our kids are grown and moved away so this is the time we should be having "fun". 12 years is a long time, I don't think I could be as good as you are and wait that long.

You are not alone...
go go and toughenough I am 49 and children are 23 and 20. We should be loving life and having a wonderful time w/husbands but we are faced yet with another challenge in life!
My husband has been fantastic throughout this whole process. I have made sure he has an outlet for himself. He loves to golf so he joined a league. I feel guilty at times that I am not who I was but if the shoe was reversed we would be there for him/them. When I was 1st dx w/UC I gave him an option that I would sign on the dotted line (divorce) because after reading all the text on the disease and procedures and meds. I knew this was going to be a rough road in life. He opted not to and has been my savior (angel). Not to say that it is still rough at times (as a couple) however, I try to make sure when I feel good (which I lie a lot) we have the best of times when we can.
We all know through the disease and operations that Life is too short and WE have to make the best of it, no matter what!

Roberta
I had my j for 23 years, the last ten were hell, finally decided to get rid of it and got a k pouch just this past June, best thing I ever did, and better then an ileostomy, no bags involved! They removed the rectum as well, it was a brutal surgery, but once I healed it was so worth it!!! I'm four months post op and haven't looked back, if you have access to a k pouch surgeon, I'd highly recommend it, it changed my life! I wish you luck, have hope, you have options,

Cheers,
Eric Big Grin
I know how she feels! The Jpouch destroyed my life too, I was very well with an ileostomy and then destroyed my health in March 2000 having pouch surgery, I was bedbound and in a wheelchair for a year afterwards, 5 yrs of constant abscesses/fistula/feeling terribly ill/no energy I had the pouch removed but my former good health has never returned. I have been diagnosed with CFS- a blanket term but no real explanation on why I have been ill since surgery. I am housebound a lot of the time and my life is ruined through feeling unwell on most days. Having the J Pouch was the worst decision of my life and removing it the best. I wish I could turn the clock back.
Oh Joanna I certainly feel for you! I have had a j pouch for almost 8 months, now and it has been at times very difficult. Still not sure if it was the right decision for me, as well! I had a prometheus test (blood work) and all the markers came back as crohn's but I my biopsies were always UC. Not sure what to do next.
What is CFS stand for? I wish you well and keep your chin up! I always think it could be worse!

Roberta
I just want you to know I read every word of it and cried. It is exactly how I feel. I am 56 female. I worked so hard to get my MS< now I cannot even work. I worked for county/state agencies before, so, I did not pay enough into social security to get SSDI, so I get $700 a mo SSI. I constantly have to ask for help from friends (very few left) and family (who are growing tired...how do you explain this to anyone??) I was told I cannot have a K pouch, does anyone know if this is true? Also, some are saying that removal and ileostomy do not return them to health...true? Thanks for any help and you are certainly not alone....I know exactly how you feel. I am also brave and bored Wink
Not that you want people to share in your own misery but sometimes you feel like you are the only one out there on your own with this problem! I am 49 and filing for SSI. I do have a LTD insurance that I am collecting.
Do you all get the comment "you look so good all the time"?! I do! I just tell my husband they don't hear my sounds when I am going 8 x's a day and you are in some type of pain daily! I always feel like I have a 2 x 4 stuck up the anus area along with burning! Try to keep some (sick) humor to this new life that we have achieved!
After the holidays I am looking into Eastern Med. to see if that will help with any of the pain that is involved! That is the only thing left! Trying to stay positive!

Roberta
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.
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?
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".
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
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.
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.
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?
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. Smiler

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

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.

I have just joined the J Pouch group-for some reason I never googled my own problem-I am a nurse and always looking up stuff for other people but never thought of looking up my own condition. I always thought I was alone with my J pouch problems-what a shock to discover others like me!

I had my surgery many years ago-in1982-have had pouchitis every 5 years or so. This last bout lasted for a while and I am going to see a doctor at the Cleveland Clinic-Dr Bo Shen.I want to get established with a gastroenterologist that understands this condition and hopefully will be happy with this physician.I feel a lot of empathy for my fellow sufferers and realize it could be a lot worse.My heart goes out to you all

RLC posted:
Not that you want people to share in your own misery but sometimes you feel like you are the only one out there on your own with this problem! I am 49 and filing for SSI. I do have a LTD insurance that I am collecting.
Do you all get the comment "you look so good all the time"?! I do! I just tell my husband they don't hear my sounds when I am going 8 x's a day and you are in some type of pain daily! I always feel like I have a 2 x 4 stuck up the anus area along with burning! Try to keep some (sick) humor to this new life that we have achieved!
After the holidays I am looking into Eastern Med. to see if that will help with any of the pain that is involved! That is the only thing left! Trying to stay positive!

Roberta

Yesss I know EXACTLY what you mean people say that to me all the time because I just try not to look like I feel....but it kinda sucks because I feel like they really think I feel well and most of the time SOMETHING is hurting, butt, joints etc., lol you get tge picture.  Anyway I pray things are going well by now.  I need to apply for disability I keep putting it off  because I know its a long fight I just need to get up the strength to do it smh.

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