Hello all.

Im fairly new to this site but Ive been "stalking" it for the past couple of weeks, and I found a lot of
people having problems with their pouch like me.
I have a J-pouch for 13 years now and I was pretty good all that time until the last year in which
Im experiencing a lot of problems(pouchitis).
Tried almost all combinations of drugs(Cipro,Flagyl,Salofalk Enema,Rifacol etc.)
Im leaning towards the end ileo now to be honest, so I would love to hear from guys that live with a perm ostomy like JasonPA for instance.
I mean that I would like to know details concerning this procedure, but also YOUR reasons for deciding to do so.
Im kinda desparate here and I ll be looking forward to hearing from you.

Thanks in advance

Hey bud, sorry I didnt get back to you! I never look in the area now that I am with an end illeo and loving life! Feel free to Private msg me or email me statie7104@yahoo.com and ask me 1000000000 questions and I would love to help you out!
Jason

Sorry again, didnt see this Holly emailed me and let me know THANKS HOLLY!

Thanks for the reply Jason.

I sent you a pm and hope to talk again soon.

Yeia sou Spiro!

Are you on medication at the moment? Have you tried probiotics, fish oil or candigone?

Glenn (who had chronic pouchitis) is having good luck with candigone:

http://j-pouch.org/eve/forums/a/tpc/f/3251071921/m/4501...501065132#4501065132

Also, are you eating large quantities of the good Greek foods like garlic (skordo), oregano (rigani), olive oil, parsley (maidano) and walnuts (karidia)?

Hi Spiros,
I have a permanent ileostomy and my jpouch(had for 9 years) was removed in 06, I think Jasonpa still has his pouch with a diverting ileostomy, someone correct me if that isn't accurate. I had chronic pouchitis and leaking issues. After surgery I'm now dx with crohns and have yet to have any issues with the new dx. I have no regrets and me and my stoma get along very well.

There are others here that have done the same.

Good luck and all the best...

Yep, I have pouch still in, rear open, END (brook (sp) illeo and no cuff
LOL... Feeling great!

After talking with the "usual suspects" here , Jason,Shell and Jill
and my doc too, I decided to give it a last try with my poor j-pouch.
So, Im currently on Cipro(2 per day), a "lousy" probiotic called Beneflora(1 per day) since I couldnt
find nor order the better ones out there(VSL#3,Flora-Q,Culturelle etc.) and just yesterday,
doc prescribed me the Librax which is both for IBD and anxiety/stress drug.
He wanted me to visit a psychiatrist cause he believed that the end ileo sollution is only in my mind
and that visiting forums like this one and talking with other people is of no use.He even said... "Dont surf the web looking for cure and get brainwashed by other peoples' opinions"!
Can you believe this?
Anyway, my main "problem" as of now is some ulcerations in the small intestine, nothing really serious the doc said, but he mentioned that they might cause problems if we eventually do the reversal.
Ehmm, ok..."so what that problems might be doc?" I asked, only to get..."Im not sure"!
There are some times that Im thinking..."The docs here in Greece, either they suck so much or they are performing experiments with patients or something"!
I dont know, I guess Ive had enough and Im not thinking that clear but...what can I say?
On the other hand my girlfriend is very miserable and dissapointed on me too, and I dont blame her, but I dont wanna lose her either.I love her very much.She just wanna see me happy and active again on my everyday life and I too, wanna spend more time with her.

I just hope for the best...or at least the better!

I dont think its a bad thing for you to give the pouch one more try so not a bad idea... I do though think coming to the forum and listening to ppl who went through so much and have gone through so much is very important in getting all sides of this - both good and bad. One person told me this and I still today say it was great advise - YOU WILL KNOW WHEN ITS YOUR TIME.
I hope you continue to come here and read and listen ... it will only help!
Good luck and I am always here to help and listen and Shell, Jill and everyone else will be too!
Keep on pluggn bud!

Spiro,

Have you spoken with Kangaroo-Roger? He is in a similar situation:

http://j-pouch.org/eve/forums/a/tpc/f/5951071921/m/4411...411015832#4411015832

Okay, there's something that's sort of raising a bit of a red flag for me (does that translate into Greek?). The fact that you have ulcers in your small intestine. I think that I've read here that when there's small intestine involvement it could mean Crohn's disease rather than ulcerative colitis. If you have Crohn's then you might want to see what others have done to try to improve their lives. A few that I can think of right now are Shelby, Dave, Micheladelfina (who I believe just had here diagnosis changed to CD) and quite a few others.

Here are a couple of previous posts about Crohn's. The first one has replies by kangaroo-roger who Nikki mentioned above.

http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/7961...571056512#4571056512
http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/2381...641073261#7641073261
http://j-pouch.org/eve/forums/a/tpc/f/5951071921/m/9731...731094921#9731094921

I hope you can figure out what's going on. But a permanent ileostomy is definitely not the end of the world and can actually make the quality of your life much better (hopefully).

kathy

how can you have an end ileo and the pouch still in?

Hello,
I just had surgery on Aug 30th and have an end illeo and life is great. No more UC pain! I will be honest and let you know the worst part of this for me has been the sore butt! And I mean sore, it's draining and the only thing that has helped is standing in the shower letting the water wash away the drainage! So I sit on towels and take lots of showers. As far as my stoma goes it's beautiful and has shrunk nicely. I was worried my skin would be sore and itchy, that hasn't happened! I haven't been brave enough to take a shower and let water it it yet, that is just my own weirdness. Anyway I just noticed you posted this a while ago, hope this helps. Joy

Ok, small question...

If it IS Crohn's afterall, does that affect the end ileo reversal in a way(complications during or after surgery maybe)?

I just wanted to add something. I invested in some VSL3 couple weeks ago and I am finally okay without toxic doses of cipro (no guts to quit completely yet). I don't know how i'll be able to keep the VSL3 in the future but right now it's made an amazing difference.