I finally spoke to a J-poucher

My daughter's friends mother had some sort of colon surgery a couple years ago.  So I was talking with her last night and asked her about it.  She had her large intestine removed due to many pre-cancerous polyps and an extreme family history of cancer.  She wasn't sure of the name of the surgery but it sounds like the Jpouch.  It was so odd to finally talk to a person who had the Jpouch in person ya know?  I have been seriously contemplating surgery myself for quite some time.  So next year, I think I may take that step.  I have to wait until summer next year when my hubby's vacation time renews itself so he can take time off to care for Gma.  I am going to have a serious talk with my GI and tell him my wishes.  I've had it - time for me to throw in the towel.  After finding out that 6mp is not working right for me nor will it ever, I'm not sure if I really want to start Remicade now.  Isn't like just putting of the inevitable (sp??)?  I want off these drugs, I want to be pain free, I'm tired of going many times in the morning with cramping, pain and bleeding.  This lady said that she had a complication though; they didn't insert her drainage pump after surgery properly and it ended up causing a massive infection.  But she said other then that, it didn't hurt that much.  She said you don't feel anything on the inside.  I guess everyone is different then on how they preceive pain.  Anyway, I thought it was interesting talking to her about this since I have never talked to a Jpoucher in person.

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Oh Sherry, you might be coming to the dark side!!!

It took meeting ajpoucher face to face for me to relent.  I couldn't believe how gosh darn healthy those jpouchers look! 

Sue

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dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Yeah, she looked very healthy! I think too one of the things that is pushing me toward the surgery is not only to be off all these meds but I have other health conditions that require anti-inflammatories and I CAN'T take them nor narcotic pain relievers because anti-inflammatories make me bleed like crazy and narcotic pain relievers constipates me severely! I am always in pain if not from my Uc then from my back. I can't keep going on like this or I will go mad. I think about all the things I can do and EAT - ah the future is getting brighter it seems! :)

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"I've had it - time for me to throw in the towel. After finding out that 6mp is not working right for me nor will it ever, I'm not sure if I really want to start Remicade now. Isn't like just putting of the inevitable (sp??)? I want off these drugs, I want to be pain free, I'm tired of going many times in the morning with cramping, pain and bleeding."

The UC Manifesto, haha!

I hear ya' on all of the above. I just want to be able to be again. It's tough to exercise when your medications make you feel so crappy.

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James

21 yrs old, diagnosed severe ulcerative pancolitis 2 Mar 2007
Hospitalized 27 Apr-5 May 2007; 16 Jun-22 Jun 2008
Asacol (mesalamine) 400 mg x 12 daily
Remicade <--first infusion on 3 May 2007
Imuran (azathioprine) 50 mg x 4 daily
Iron, Vit C, Vit D, Zinc, and seemingly always on Flagyl
Eating fruits and vegetables like there is no tomorrow...

Oh, I'm so excited for you! Please keep us updated on what your GI says. I have a feeling that someday surgery will be my option - and I totally look forward to the time when I don't have to worry about this stinking disease anymore.

Cheers!

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Pan-colitis and GERD diagnosed May 2003

Osteopenia (hip and spine) diagnosed Feb 2006

Status:  close to remission?!?!?

15mg Pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio

1st Remicade infusion on 06/17/08:  Next infusion on 07/01/08

 

Co-Moderator for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate

I know what you mean! But I still can't help but be frightened/worried that I'll be in that 10% of jpouchers that have complications. I know that if I end up having complications due to the surgeries, I'll be so angry with myself that I didn't stick w/ Remi longer or didn't try Humira.

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Female, Age 19, Dx w/ UC August 2007

I'm worried about complications too but the way I look at is this. If I am in the minority in which the Jpouch doesn't take, living with a bag for the rest of my life is much more acceptable then living in pain, fear and constant fatigue from the disease and medications. I've had this for 16 years and I'm tired - just plain tired of dealing with it all. So I think that when the time comes, I will be ready. Like I said, I've been thinking about it for quite a while but talking face to face with another Jpoucher sort of clinched the idea for me. To be disease free - what a concept! :) Of course, I won't be having it done any time soon but I might start the ball rolling this fall with my GI or even sooner depending on how my body reacts when I get off the steroid enemas. If I keep flaring after I am off them, I do not want to start on Remicade. So we shall see how the ball bounces.

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Here is what I think about worrying the POSSIBLE complications.  We worried about the possible complications for 3 years before making the surgery decision.  We were so afraid that this or that would happen, or that life after a jpouch would be worse.  And NOT A SINGLE ONE of the worries we thought could occur has happened.  I learned the biggest lesson from and that is that worrying really is a waste of time and it is us writing a story creating our own misery.  It is expected you may have some "hurdles" throughout the process, but you know what, you'll deal with those hurdles as they happen, and life will go on. 

As for making that Remi or Humira decision, you need to both listen to your doctors recommendation to try them or not, and 2) you need to do whatever you must to make sure that if you never regret the decision for surgery later - if that means you need remi to help you make the decision then do it.  My doctors were pretty clear that remi and humira may not work for me, but I had to try them because didn't want any regrets. 

What was nice for me doing Remi and Humira, was that it gave both me and my family the time to "cope" with the reality that surgery was coming. And by the first week or so of Humira (my last medicine) we were all so hopeful it would work, and then it was like a switch flipped and we all started prepping for the reality of surgery. It was a really natural flow of coping.  For us those last chance meds. served more than a physical purpose in our decision making process.

 

for those of you who are worried about how you may like life with a j-pouch or a bag, when i was deciding this is how i thought of it. "I MAY hate life with a bag, but i KNOW i HATE life with UC, and i KNOW there is no cure and NO getting off these meds anytime soon. And there are only CHANCES of things going wrong with the surgery" to me it weighed out very heavily towards surgery. I think that is the way you have to look at it, it's the same with any decsion you make, there are always chances for things to go wrong. And if hte j-pouch fails, you will have the bag, but you will still be just as healthy. I have the bag, and it has amazed me how healthy i am, and how much better i feel and look. I had no idea how bad i felt, until i woke up after surgery and i was "clean".
I wish you all the luck in your choices!

There will more than likely be pros and cons to any option out there, j-pouch or even a bag...it's important to remember that everyone's experiance differs with either option so you'd have to have a nice long visit with your GI and go with your gut instincts as to which might be a more suitable option...granted it seems many who are able go for the j-pouch first and if it turns out to be too much of an issue they go for the bag, which you have to remember can come with many of it's own issues as well...So sorry Sherry that you're even at the point right now to even be contemplating either option...best of luck to which ever choice you make and remember in choosing go with YOUR gut instinct.

:)

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My bum is broken....there's a big crack down the middle of it!  LOL  :)

For me surgery is the only way to be cured of UC. I worried more about the long term complications from the drugs I was taking for UC, than from what issues the surgery may cause. And now that I have a temporary bag, I know I could live with it long term if I had to...and this is the worst case scenario for the j-pouch surgery. Right now, every day is a good day for me now. And yes, I look and feel like I did 2 years ago before I got diagnosed with UC. I don't have any regrets.

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Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily iron pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
Off all meds including iron pills except Actonel and feel normal again
9/25/2008 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"

I'm sorry that things haven't improved Red.I was hoping that they would.You know yourself what the best thing is for you to do. This is a mjor step for you and one i honestly didn't think you would have to consider.
ALWAYS HERE FOR YOU
MARTY

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                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/pred/colofac


       

My brother got the j-pouch surgery about 10 years ago when his UC was so bad he was using the bathroom over 100 times a day (he actually kept a tally).  Besides a few stints of pouchitis and a fistula (once), he has been much better since the surgery.  He only had the ostomy for about 3 months after the first surgery, then went back in and got the 'pouch'. Back then they made you wait the 3 months for you body to recover before you got the pouch - I'm not sure what the process is now.  But I would have to say that he is definitely happy he had the surgery! :)

 

 

Hate to be a downer, but my problem is my potential surgeon (who is tops in the city I live in) said it's best to have C-sections if you have this, which is fine, but I would prefer not having to have them. I know that probably seems silly but it seems like the more I learn about the surgery the less inclined I am. Possible lines to your stomach to feed you if you don't heal quick enough, lengthy hospital stays, two surgeries - I can't stand being in the hospital for one night.

I think I could deal with the bag if I had to - it's the crap in between. And you move your bowels like 4 to 6 times a day, I heard, albeit with more control. For someone who has gone 30 times a day, yes, that seems like a miracle, but I've also had a few days where I go once or not at all.

I'm at the point where I've had enough of UC. I used to be very proactive in my illness but now I pretend it's not there, basically. I've tried every med out there. Remicade gave me temporary arthritis, Humira gave me pneumonia, we keep pushing my Imuran dose (and I still don't like how dangerous that med can be), I've done prednisone twice and the last time, it didn't even work.

Sometimes I wonder if there's something else wrong with me, since I have never been in remission for the last 8 years I've been sick other than the first lengthy time on prednisone.

I've been flaring since September ... can't get this under control ... have a job where I need to fly by the seat of my pants (reporter) and want to try new things but live in fear, partly b/c of the disease. Also am worried about the increased colon cancer risk. My doctor has basically said we're getting close to surgery ... but I just wish I could be a little more willing about it. I figure if I'm not, that's not good for mental/physical recovery.

And I know practically everybody who's had the surgery is grateful they did. I just felt like this would all eventually disappear, or they'd find a cure if I waited long enough, but it's been 8 years, I'm 27, and want to live my life.

Anybody NOT happy with their surgery?

Sherry....you have so much going on in your life plus numerous autoimmune related disorders, I can totally understand where you're going with wanting the surgery.

I'd do the same thing I think.

q

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One of the things we (I) did prior to Bratcat's surgery was get in touch with a patient of the surgeon's who had gone through it. In fact, we did this with both surgeons we looked into. It made it a bit easier to ask questions to people who had gone through the process.

It is definitely important, unless done as an emergency, to be as mentally prepared for surgery as possible. I honestly think that is a strong component to healing. Bratcat has been home for about 24 hours so far from step 1. We are beginning to have questions about recovery that, although the home health care nurse seemed to answer, we will probably ask on j-pouch.org. Might as well ask those that have gone through it! But even Bratcat knows no one answer will fit everyone. She knows to ask questions, listen to answers, and try to see what fits her.

Sorry you have to even be thinking about this next step. Noone wants to get to it. We never expected to be at the surgery point ever, let alone less than 2 years after being diagnosed. For now, if nothing else, you can contact a surgeon (or two) and look into all the possibilities. Our thoughts are with you always.

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--Mom of bratcat (17 years old)--

well i am totally happy with my surgery. As for the c-section, most of the time, if a woman has had anytype of stomach surgery, they will want you to have a c-section. From experince, natural child birth is really not all it's cracked up to be, lol.
I have a perm ileo, i didnt' want to mess with the j-pouch. I was sick for 8 years too, i was 29 when i had my surgery, i basically wasted all my 20's, and let me tell you i am living it up now! and trying to have some of hte fun i missed out on, and i am and it is great! But the bag isn't always super fun, but it's alot more fun than being sick. I never made it into compelte remission either, i always had problems. I wouldnt' trade this bag for going "regualr" for anything in the world!

Thanks everyone :) I just got back from vacation but while I was gone, I was talking to my SIL and I swear some people just don't GET it if you know what I mean. She swears up and down that going to a chiropractor and having my back adjusted just may help alleviate some of my symptoms because of the fact that there are so many nerves that control bowel function. I told her that I was thinking of having surgery so she kept pushing this chiro guy she sees. I didn't even bother to explain to her that seeing a chiro for the rest of my life is just pretty much putting of the inevetible(sp? - why do I have such a hard time with that word???LOL). I wanted to yell at her that my colon doesn't work right nor will it ever. I have been pretty much flaring for 16 years - don't get me wrong, I've had good days and bad days but never GREAT months. But anyway, lol didn't mean for this to be a gripe post. It just frustrated me - which she always manages to do anyway.

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Chiropractics hasn't helped any of us regarding UC...it's helped my sore back, however...

Why does what she says bother you so much? Isn't she the one who has never been responsive to your "suffering" anyway?

I'd take chiropractics over meds anyday if it actually worked.

Are you in the "testing" phase of letting people know what you've done to see how they react? You must have suspected what her reaction would be..?What did your husband and kids say the surgery?

When I had my hysterectomy, there were a few women who were worried about my emotional state and that I had given up a female part of my body. I was actually shocked and replied "Are you serious??? I've never been so darned happy or ever felt such relief in all my life!!"
Sheesh...If it's broken, fix it. If it can't be fixed, dump it.

Of course, you could try the chiropractor if she'll pay for it?

quincy

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My kids and hubby are 100% behind me no matter what I decide. Yeah, I guess you can say I am in the testing stage. I brought up surgery to my MIL this week too and she said she didn't blame me for wanting it. So I know she is willing to support me too - she is such a great MIL I tell ya! :) But I guess I am gauging others reactions to my decision - I knew that my SIL would have something to say about it and to tell the truth, I don't know why it bothers me so. I have to learn to have what she tells me to go out one ear and out the other. She has her own issues that's for sure and she has no right to tell me how to live my own life if she doesn't understand - no matter how many times I have to slap her in the head with it! :)

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Sherry,

Very few people (my internist and one brother) supported my decision to have surgery.  In fact I knew going into surgery that I was going to have to tow the line alone afterwards as I wasn't going to have any family support to help me at home.  Still I persevered because I knew it was the key to getting my health back.  I lost a few friends along the way too as the thought of ME having my colon removed was devastating to THEM.  Don't ask me to explain, I never asked but moved on from those friendships.  I learned from my experience and from many other people's surgery experiences, that you just cannot get everyone on board.  In the end, no matter what life experience I have to face down the road I have learned that as long as I am committed to the idea it doesn't matter what others think.  BTW-After my non-supportive family members saw me with renewed health immediately after surgery they agreed that I made the right decision. 

my mom and dad and husband were supportive, my son was too little to know what was going on, when i told him i would ave poo in a bag, he asked me how winnie the pooh was going to get in there, lol.
My grandma kind of freaked out, but really she was just upset that i would have a major surgery, she wished she could do it for me. I was really worried about my sis, because, like me, she thinks "bathroom germs" are the most disgusting things in the world, we are both so crazy about it, that if a for some reason a plate or cup shoudl go in the bathroom, we throw it away, lol. So i was worried that she woudl think i was nothing but a walking bathroom germ, it took me a while to get over thinkign that. But when i asked her if she would think i was gross, she got mad at me and told me that was stupid, lol. She was just really happy i was going to be healthy. And they all were, i think that's what you need to try to drive home to anyone who is trying to give you a hard time about it. Just make sure they know you will finally be better, and healthy!

Thanks summer, and everyone else. Info is greatly appreciated. I plan to talk to a few "live" j-pouchers.

Sucks we have to get to this point, doesn't it? In the back of my mind, I thought for sure I'd get way into remission or they'd find a cure by the time I hit 7 years .... oh well.

I told my sister that if I have it out, I'm going to ask the doc to save my colon so I can STOMP on it.