Hi. I'm 17 years old and when i was 13 i had a j pouch surgery because of UC and no medicine helped. I just found out that now i have crohns in my pouch. I'm worried the medicines wont work again and getting a bag is not an option. I wont do it. What should i do? And medicine i should tell my GI about? Any info will help
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I don't know about medicine that would turn it around, beyond basic biologicals. Perhaps don't completely shut off the bag option. It's pretty easy to adjust to, and opens up the rest of your life to stop thinking about this all the time. Best to you.
Maybe your next step should be a second opinion to confirm the diagnosis, unless you are confident of the Crohn's diagnosis.
Sure, Crohn's does increase your risk of pouch failure, but it is not a given. They are coming up with new medical treatments all the time and I would bet your GI is aware of them all. If one does not work, you move on to the next, or use multiple treatments. Don't let your mind keep going to ileostomy. Don't fear it either. If it comes to that, by then you will have accepted that outcome. But first things first. Give the treatments time to be successful.
Good luck!
Jan 
I'm one of the ones who chose a J-pouch in spite of a probable Crohn's diagnosis. I'm very pleased to have done it. I don't currently need any Crohn's-specific treatment, but there are a variety of tools for your GI and you to use, if they are necessary.
Good luck sweetie. My daugher who is also 17 just had j pouch takedown a few weeks ago and is having a very difficult time with it so far. She feels the same as you about the bag. There´s a lot out there to try and hopefully one will work for you. I am taking my daughter to a MD who uses alternative treatments and diet to treat. Some are skeptical but others say it helps. My thoughts are with you!
I have a friend with Crohn's and a j pouch and she's done well on Humira.
like Jan mentioned, perhaps a second opinion would be the first thing. That's what I would do.
I don't like the cramping feeling from crohns weighing you down to were don't want to do anything
Our son has had his j-pouch for about 4 1/2 years, and was diagnosed with Crohn's about a year ago. Our GI used Budesonide to get control of the flareup - it's a steroid that targets the bowel, he said. He's been on Pentasa 3g/day since, which seems to be working. We also give him PB8 vegetarian probiotic, and omega 3 fish oil.
It's very hard to be patient. Be kind to yourself.
It is official, I do have Crohns now. We have been trying to find out for the last two years what is wrong with me. Finally went back to my original surgeon who set me up with a new doctor. I have a lot of damage they say, it has been hard to get food through. I am on Prednisone and just started Humira. It's scary when you read about it, but I am desperate. Has anyone else had success with Humira?
Hanging in there.
Brian
Never had humira, I just know humira Is just an injection, I have remeicade and that is like a 3 to 4 hr infusion every six weeks
I have chronic pouchitis, my GI has strongly hinted at CD. The terminology doesn't really matter to me except that with a CD diagnosis it may be easier to get the insurance company to cover certain meds.
I do pretty well on Antibiotics but I need to rotate them and combine them. I want to get off the daily antibiotics so I'm going the biological route, I tried Cimzia but it didn't last me the entire month (only about 2 weeks) so I am switching to Stelara later this week.
I have previously used Remicade, Humira, and Simponi when I had my colon/UC so I can no longer use them due to antibodies or I would have went with Remicade or Humira.
Humira made me itchy after the injections but if I took benadryl before and also after the injections it really helped me.
I had my pouch since I was 13, last two years i have been feeling weak and having regular blockages and after the scope today they think I may have Chrons.
I haven't taken meds in 22 years and also fear losing my pouch.
Stay strong! Please keep us posted on your progress.
-d
I too developed Crohns and I took many meds to help control flare ups but nothing seemed to help. My doctor recommended Humira. I take it once a week and it sure has been helping me with no side effects. Give it a shot.
Hope the best for you.
Humira has been helping my son. He went on it 8 months after he got his pouch. He is also on rifaximin ( and supplements).