Trash the Pouch

Hello Richard,
Your story is very similar to my father. He got the 2nd j-pouch last September. His first j-pouch was perfect but he got an infection or hole in the pouch after 4 yrs. The second pouch just wasn't the same. He was leaking all day and all night and had NO quality of life. He was losing weight rapidly and was almost unable to walk with the butt burn from sores and tailbone pain. He wanted desperately to make it work because he just didn't want to live with the bag. He even went to Cleveland Clinic and Dr. Bo Shen agreed he needed the bag. He finally had the surgery about 5 weeks ago and he has a life again! It was a rough recovery but they were able to do everything laparoscopically. He can go outside and eat whatever he wants! He is getting used to the idea of wearing the bag although it does depress him. I personally think he has a second chance at life and we are thrilled he was able to have the surgery before it was too late. He has gained 10 or pounds and is starting to look good again.

Although I don't personally have a pouch I feel as though I was living and breathing this with my father. It is so difficult. I really hope things work out for you! Best of Luck!

I chose to get rid of my pouch in 2003 at the age of 31. Best decision I ever made. Have since had two babies, take no drugs, eat what I want, live a very full, active life (even took kick boxing classes this winter). I swim, travel, work full time from home and serve as co-chair of my kids PTA. Ostomy freed me and gave me my life back. Feel free to ask questions!

Jill

Thanks all.
I sometimes just want to put my head in my hands and just cry.
I am gonna be 58 in june so I am no young man.
I do know deep down it will be better but I did wear a bag for a month after my colon was removed and I did not like it. I just don't like the idea of having a part of my intestine sticking out of my body. It makes me queasy. Yep...i am one of those who gets lightheaded at things like that. I'm sure I will get used to it.
I know I will never get used to what I am going thru now. That is one thing that worries me is the surgery. The three I had to get to this point were rough and almost took my life.
And yes it will be good to get off all these drugs. So tired of them.
Sounds like you both made the right decision. I think we all go into this a little bit leary.
I just hope that if I do it I will become healthy and strong like I was before. Now I am weak and have no confidence in this at all.
Richard

Where are you in Texas?

Who is your doctor?

Have you talked to your GI?

Get a second opinion before you do it.

Hello.
I am sw of Fort Worth. Cresson Tx.
No...have not talked to my gastro dr.
Lori Gordon at Baylor is my surgeon.
I think I may do that....second opinion.
I do have time.
I do know what he will say.
Thanks.
Richard

My wife had a bad pouch for over a year. We ended up at Mayo clinic and had the entire operation redone (j-pouch) number 2.

Her takedown will be in 5-6 weeks. Crossing out fingers this one was done correctly and her body adapts to it.

Even if you go to an end-ileostomy, you need to know what's wrong with your pouch. Pouch problems are very common and most are very treatable. Get to a very experienced j-pouch doc, you still have many years ahead and being completely informed will give you at least a little piece of mind.

Best of luck to you,

Dan

Thanks Dan.
I will also look into that.
I didn't even know they could make a second pouch.
So much to learn and do.....very little time.
Richard.

If you really want to keep your jpouch, I think you need a second opinion from a highly qualified CR surgeon. Hopefully you can get referred to a surgeon with lots of experience. Not all CR surgeons can successfully do this surgery, hence experience is important. You may need to travel to Houston or Dallas to find someone with the right criteria.


Sue

Hello.
I do have a very experienced surgeon.
I will most likely get the same response from another.
In fact there are four very experienced surgeons in the same office.
So I don't have to drive any distance to get another opinion.
I truly belive that if it does not start functioning properly in the next few weeks it never will
I do not have much time to check into everything as I have a job I have been away from for six months now and money is running out and my insurance is limited to just this surgery and what ever is related to it. I have to get healthy first and fast and looking into it further will not get me any healthier. I wish I had all the time in the world to check into this but what time I have left is limited. My health is suffering badly from it.
Richard
p s
From what I hear 20% of pouch surgeries fail.
it was a chance I took.

20% of pouch surgeries don't fail - pouch failure is not nearly so common. Do you have a diagnosis? Without a diagnosis it's not a pouch failure, it's a doctor failure.

Scott you may be right.
I have to dig deep.
What are causes of pouch failure if I may ask?
Of course I am new to this and not very informed.
I do know one thing is that I have to get this corrected as soon as possible.
Like I said earlier I have lost a lot of weight and that is where all or most of my problems arise. Bones aching...muscle aches...and such. If I do not get my weight back soon I will be a basket case.
I am going in to see my gastro do. He may have some answers.
Jeez. ...I feel like I am in the dark with all that has gone on in the past six months.
I just want to get on my feet. I feel I was better off with my UC and those problems.
Thanks Scott.
If I remember I will post what my Gastro do says.
Richard.

If your insurance will cover them, give Dr. Robert Jacobson or Dr. Paintoon Tulanon at Baylor - Dallas a try.

An awesome GI is Dr. Kimberley Persley in Dallas.

They are who I see and I love them!

Thanks.
That is quite a hike for me but I may call.
First I have to talk to my GI.
I have not met up with him since my surgery.
Richard.

pouch failure can simply be because the pouch was built wrong in the first place. unfortunate... but it happens way too much. This is one of the reasons Remzi at CC is advocating to make the jpouch surgery a board certified surgery. Because far too many patients are coming to CC with messed up jpouches.

I had my pouch disconnected 3.5 years ago (just 6 months after it was connected) .. as shen and remzi insisited it happen immediately as I was so sick and underweight. I then had it ripped out entirely 2 years ago.

I am one of the few who sufferred numeous and seemingly endless complications post jpouch rip out surgery. BUT just today... I purchased a road bicycle. Yup... onwards with my life. Getting rid of that mutant jpouch beast was the best thing I have ever done!
good luck.