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Hi all, 


This is my first time posting on a forum like this jut had a few questions and wanting to here others experience with a J-bag. 


I am 21 was diagnosed with UC a year and half ago. I have been in the hospital twice with flare-ups currently I am receiving Ramicade 10mg/kg every 4 weeks, Imuran and my 4th round of steroids. my doctor has been talking about surgery because I have been burning through treatment options. I read many things about the J-Bags I was wondering if it is actually better having it. Right now I have 10 plus bowel movements a day, but only about half have blood. I am also uncomfortable most of the day and night and have many episodes of pain though out the day, especially when I eat. I can't gain weight I am actually still losing weight. 


I heard with the J-Bag you still have frequent urgent bowel movements, does it get better or is it basically like being in a flare-up without the pain? I am also trying to finish school I am in my 4th year of nursing and have had to delay my final placement twice because of active flare-ups.  


Also with the J-bag, this may seem odd or a dumb question, but how is drinking alcohol with it? I am 21 and I still enjoy going out with my friend to the bar and such and I was wondering if this is going to never let me drink again


Also is there any nurses out there that have had this procedure? I have had placements in the ER and I love working in the environment, but it is stressful and probably was a contributing factor triggering a flare-up. How did you guys get over it or did the J-Bag help in these situations?  


Just wanted to get peoples opinions and experiences I am talking to my doctor about surgery tomorrow 


Thanks! Andrew 

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If you look around there are a lot of people that will say this gave them their lives back.  From everything I have read here and elsewhere, the stools aren't urgent once your body gets acclimated to the new plumbing then the stools aren't "urgent".


I just had my Stage One Surgery a week ago.  Honestly, I am doing freaking fantastic compared to wear I thought I would be.  I have a loop diverting illeostomy which is taking a bit to figure out my skin but dealing with emptying isn't such a big deal.


You asked about nurses -- I am a physician.  I work as a hospitalist -- so life is always hopping too.  I wonder myself how it will effect my work life.  I will let you know if you would like but I guess I will just figure out a new routine.


As far as drinking -- it looks hit or miss -- but you have to admit if you are able to work out, not be in the hospital and feel freaking awesome, alcohol over consumption should be of little concern.  


I hope that helps a little.  Hopefully more will chime in, also search the threads and you will find answers from previous posters.


Good luck!!

I was diagnosed at 22 so I understand about school and wanting to still have a life.  I almost didn't graduate on time due to constant hospital stays.  While I was sick I couldn't drink alcohol.  Not a bit.  I would flare really badly, going 30+ times a day and losing so much blood I had to get regular transfusions, and I lost ~30-50 every time I got sick because my flares last 2-3 months.


I had to have my surgeries under emergency circumstances, it doesn't sound like you're nearly as bad off as I was.  But there is a general understanding that the ileostomies are hit or miss for people and most people (like 90%-95%) are happy with their Jpouch.  (Also i've never heard the term J-bag so you might want to actually say Jpouch so people know what you are referring to outside of the Jpouch community.)

It takes anywhere for 3-12 months for the Jpouch to regulate.  the average person will hit their new normal around 6-9 months.  I hit mine at 6.  I go to the bathroom 6-8 times a day, usually need to pee at the same time, so I'm not going all that much more than your average person. There is almost never any urgency.  If I eat something that I shouldn't have I might have urgency, but it is a rare occurrence, not a normal one.  I can hold it much better than with UC, and if I'm not standing up I can hold it for up to an hour if need be.  

It is important that you approach these surgeries knowing that it will take at least a year to fully bounce back energy-wise as well.  It's a big undertaking so patience with your healing process is crucial.  if you are relatively healthy you can get the 2 step, but your doc may recommend 3 step.  

Once I was out of recovery period I could drink alcohol.  I didn't drink much when i was younger, but in the last few years I've become a bit of a beer snob as long as I don't get completely drunk, it's not too bad.  BUT everyone is different. Some people cna't handle fizzy drinks, so beer will be out, but you might be able to do wine or liquor.  Some people can't do any alcohol at all.  It all depends.  but if you are considering surgery, you shouldn't table the option just because you might not be able to drink.  Just know that it's possible you might not be able to.

Can't help with the nursing questions as I work in publishing.  but I do know that there are some nurses either on this board or elsewhere that I've talked to with Jpouchs that still work. Good luck!

Andy, sorry to hear you are having so much trouble and are burning through your treatment options. Steroids x 4 - that's risky on top of everything else. And that is often what contributes to doctors pushing for surgery. Sounds like you are a definite candidate for surgery.


One thing I wanted to point out - with a j-pouch, urgency is not typically an issue.That may be one of the biggest differences between UC and having a j-pouch. Granted, the holding capacity of the j-pouch isn't very much - so I can hold it only so long (2 hours, give or take, if needed) but still way better than cramps, pain, and urgency with UC.


Make sure you have a fairly definitive UC diagnosis before making your decision. And find a very experienced, well thought-of surgeon. Those two things make a huge difference in your experience with a j-pouch. Also, if there is any way to wean off the steroids prior to surgery - that is also another success factor for surgery. Not that you can't have success regardless, but your body will heal so much better if you are off them. If you have to stay on steroids, find a surgeon advocating a 3-step surgery (Step 1 - colectomy, then wean off steroids, then Step 2 - j-pouch creation, then Step 3 - reconnection and functional j-pouch).


Good luck!



Andrew, so sorry to ready about your difficulties.  You are far too young.  My son is 24 years old, you may wish to speak with him.  Let me and I will arrange it.  He was diagnosed at the age of 6 with UC.  Last June he had his lg intestine completely removed. Spent the summer on a temporary Illiostomy.  We had a lot of problems with the appliances and the bag leaking, not getting the wafer on correctly, and lots of pain.  In September, he had his take down.  All seemed to go well.  He was going to the bathroom about 8-10 times a day.  He was having a lot of accidents at night.  Seems like he is up all night and sleeps most of the day.  And still,having lots of internal Pain.  In December, he had an abdominal CT scan which showed a fairly good size abscess.  in January, they found the fistula.  Tough news to handle.  He has a drain in his back where the abscess was, it has since cleared up.  He has been on TPN since mid-January.  On Thursday, sadly, Jeff is now going on complete bowel rest.  They giving him back his ostomy for 6-8 months with the hopes that the micro tear heals on its own.  Through this entire journey, he has lost 100 lbs.  that said, he needed to lose it so it was sort of a bonus, but not a way I would recommend anyone to lose weight.  Having the ostomy, once the surgical pain was gone, he was finally pain free for the first time in his life.  But dealing with the bag is extremely difficult especially at your age.  you should  be beginning your life, not dealing with these things.  All of these surgeries are extremely painful and difficult. Think long and hard and do your research before you make any decisions.  Jeff didn't have any options because they thought he had cancer.  I'm not sure what he would have decided had that not been the case.  Stay strong!


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