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
Yep...I hear ya...I had my j-pouch disconnected...literally got my life back. I'm 52 and have a permenant ileo...give it some thought...best of luck...
Why haven't you opted for a permanent ostomy? It seems that 12 years of living like this is 11 years too long. Is there something preventing you from going back to an ostomy?

Sue Big Grin
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
Hello J Pouch A Go Go,

I not only read your post, I feel it as well.

God promised us that there is more to life than "this".

My prayers are with you,
Markus
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
You deserve to be listened too. Hope your situation gets better and you start feeling the way you deserve to feel. Did the hospital give you any supports while you were there?? I know talking to people helps me feel better, so if you ever need to talk or vent I'll listen.
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 agree with Eric, the K pouch has changed my life! I only had my j pouch for a year, but it was by far the worst year of my life. I think while it is amazing for some people, some of our bodies never adapt to it. Definitely look into an ostomy or k pouch options. Best wishes and prayers headed your way!

Rosie
BCIR or Kpouch are options. I do ok with it, it's no colon but it is not THAT bad and far better than what I could be stuck with.
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 also have fibromyalgia and chronic fatigue syndrome which is what CFS stands for. Unless there is something else out there I can get Frowner
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

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