With a well-functioning J-pouch you'd likely have 4-6 *non*-urgent poops daily. It's nothing like a UC flare. Stress generally has no effect on it, beyond what it can do to anyone's digestion. Some people report an alteration of their alcohol tolerance, but it doesn't seem to be a consistent effect. It's easier to become dehydrated with a J-pouch, and that might explain any changes in how alcohol affects you. In any case, you should be able to drink with a J-pouch.

 

Where on earth did you come up with "J-bag?"

 

Good luck.

Yeah, lol.  J-bag?  Never ever heard it called that. 

 

I'm a nurse.  I had my surgery while I was still in college (January, creation of pouch, loop ileostomy; May, takedown).  I started nursing school and part time work that fall, around September.  I worked in oncology for 3 years and I've been a critical care nurse for the past 17 years, almost.  I've not found in my case that my pouch has limited me working at all... but I had 20 years of NO issues at all.  I do have some now, but they're not really pouch related, though they're a little impacting at times in mild ways, especially when my outlet gets a bit strictured.  Though thankfully that isn't constant or often. 

 

Yes, you go "more" but you don't RUSH to the bathroom like you do with UC/IBD.  It's NOT urgent, certainly not like with UC/IBD.  In the beginning, I might have had 15 BMS in the first few weeks, which slowly tapered off.  My BMS were much more affected by my food choices back then.  Here at 24 years, less so. 

 

I was 19 with the surgery.  I turned 21 two years after surgery.  I never had major issues with alcohol, however, I'm usually quite good at also drinking water when I drink.  As an older adult now (43, lol), I usually drink at last one glass of water to each alcoholic beverage.  I will say that in the beginning, draught beer was probably the worst on me (because of the air in it? I don't know?), and made me have to go a bit more, but bottled/canned bothered me less.  I'm pretty much strictly a (dry) red wine drinker these days, and really have no issue with it at all. 

 

 

 

Hey man, you sound a lot a lot like me! Was 19 when I got diagnosed wayyyy back in 2007 lol. Had 2 big flares in the first 2 years and then towards the end which was this last summer I felt constantly sick. I think it's weird they started you on the remicade so fast. (And this is just coming from my own opinion and the way my doc tried meds) we started small Asocal lialda and of course prednisone for flares. Once that didn't work alone we did lialda and azothoprine(spelling?) that worked for awhile but like an idiot I felt so good I didn't think I needed it anymore. Got a flare and the azo never worked the same again. Last spring we decided to try remicade. It sounded to me that remicade and that one shot I don't know the name are kinda last efforts of meds. Remicade worked for about 6 months and then quit. That's when my doc started talking surgery and referred me to cleveland. They agreed I had tried all meds I could and surgery was the best option. I've just had the first one, don't have my "j-bag" yet lol jk. 2nd surgery is tomorrow to form then a third in a few months. Again, I don't know your situation, it's just to me, crazy they went right to the big guns for medications. But I can say since my colon has been out my doc said I can drink beer and all that good stuff! Of course that's with a stoma but it's been nice not suffering any consequences for my choice of food and beverages. That could all change with the pouch, I don't know. But best of luck to you. You honestly sound just like I did. It is tough being 21 and just wanting to have fun with your friends but you know there are serious health consequences. Good luck buddy. And you ever just want to talk I know what you're feeling.

Actually, my daughter goes to a large children's hospital, and especially in Crohn's patients, literature supports big gun therapy to get kids in remission, quickly.

If you can get them in remission, fast, and keep them in remission the first year, it has been shown to have a better long term outcome for staying in remission.

I knew that with little kids to he the case, my nephew was getting checked for Chrons and colitis and they were talking about starting him right on humera. And they said the same thing you just did.

Interesting info, Rachel! While I was not quite a pediatric patient when I was diagnosed (just a month shy of 16), I was in remission within six months of prednisone, hydrocortisone enema, and sulfasalazine treatment (all they had back in 1972). Even though it was a full blown pancolitis with my first flare, I stayed mostly in remission for well over 20 years. In 1995, when I had my last big flare leading to colectomy, Imuran, cyclosporine, and similar drugs were experimental. They had not even invented biologics yet, at least not for IBD. I wish they were more mainstream, because I am on them now for my arthritis anyway. 

 

My son, who also had pancolitis, quickly went into remission with agressive IV steroids and antibiotics. He's been in remission for about 8 years now with only Colazal.

 

So, I have to agree that a quick remission is a good sign.

 

Jan

Thanks guys the info is awesome ! 

 

Jeff I started with the NSAIDs then imuran then ramicade and this is my 4th round of steroids, so they did try the other medications first the imuran held it off for about 4 months so they put me on ramicade which worked for a few months then stopped so he thought he would try it at the highest dose every 4 weeks to see what happens. My specialist has sent a referral for a consult for surgery so we will see what happens! your guys support has been awesome though and made me feel better if I have to get the surgery Thanks!!   

Just my two cents worth......my J-pouch loves just about all foods and beverages.  I feel so fortunate to have found an answer to the three years of HELL I went through with totally out of control bowel movements and all the side effects of Prednisone.  It has been 13 years since my Step 1 and 12 years since my takedown.  I've never looked back!  Best wishes!