Hi all! I'm new here. I just got out of the hospital for almost a month. I have a J Pouch. THey thought I had pouchitis...nope..I have Chrons. Very sad and scared. Very sad and scared. I just have been on a week of 40 mg steroids and am supposed to cut back...with asacol and mesalmine. I can tell I am still flairing...Any advice? DOes this calm down? Help! Sue
New Crohn's from J Pouch Site
- Thread starter Sue-2009
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HI Sue, welcome to the forum... we all know the fright from freshly being diagnosed, and yes it is scary. As we are all different in our disease and responses to medications it can be awhile to get the right meds, dosage for your level of disease. I know about being in the hospital alot before I was dx and technology is so much better than 20 years ago. Steriods usually work, and 40mg is the standard dosage, but can be higher or lower, depends on your Crohn's. It will calm down but it could take time, you need to get as much information and knowledge so you can deal with it as best you can. Sorry you had to be here but you found the best place for friendly people and support. Ask us anything, no question tmi. Hang in there ok?
Penny
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Welcome Sue, you've found a wonderful, supportive family here - make yourself at home 
hi Sue, welcome to the forum. i am so sorry to hear you're not feeling good, and have had such a long stay in hospital!
hopefully the pred will have calmed things down somewhat.. and the other meds will kick in soon.. i hope you get to feeling much better very soon. anything you're worried about, please shout out - there are so many people on here, with so many different experiences regarding Crohn's - i'm sure someone will have heard what you're experiencing before.
hopefully the pred will have calmed things down somewhat.. and the other meds will kick in soon.. i hope you get to feeling much better very soon. anything you're worried about, please shout out - there are so many people on here, with so many different experiences regarding Crohn's - i'm sure someone will have heard what you're experiencing before.
imisspopcorn
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Welcome Sue,
Were you diagnosed with UC first, and then had the J pouch procedure? I have a friend in the process of having the procedure done and she said Crohn's patients are not candidates because the Crohn's attacks the pouch. Is that what is happening to you? I'm really sorry you are having soo much trouble right now. What options has your doctor discuussed with you? Maybe you need a stronger more aggressive approach to your disease? I hope you get some relief soon. Let us know how you are doing.
Were you diagnosed with UC first, and then had the J pouch procedure? I have a friend in the process of having the procedure done and she said Crohn's patients are not candidates because the Crohn's attacks the pouch. Is that what is happening to you? I'm really sorry you are having soo much trouble right now. What options has your doctor discuussed with you? Maybe you need a stronger more aggressive approach to your disease? I hope you get some relief soon. Let us know how you are doing.
Jpoucher - with Chrons
Yes, I had UC. So bad the colon had to come out...No sign of chrons..Until now..My pouch is pretty ulcerated. I was awake for the entire scope. Scared me. Right now I am on prenisone--40 mg after a week, and they want me to taper...I'm not so sure if its ok yet...It seems that it should be shocked more...With asacol. The thing that scares me are numerous, but the first...the meds did not work with UC...and the symptoms are Chrons, but the test came back inconclusve....THe pouch did work good for a while. I am hoping it clears up...other wise, I will have some kind of ostomy...since the bowel is gone:depressed: BUt, it sure beats being sick...THe rest scares me too...the fistulas the abcess' I am so terribley overwhelmed. Thank goodness for some anti depressents. I have to stop obsessing over this...Thanks for listening...Most pouchers have good luck...Tell you friend to hang in! Sue (Where is spell ck?) :confused2:
Yes, I had UC. So bad the colon had to come out...No sign of chrons..Until now..My pouch is pretty ulcerated. I was awake for the entire scope. Scared me. Right now I am on prenisone--40 mg after a week, and they want me to taper...I'm not so sure if its ok yet...It seems that it should be shocked more...With asacol. The thing that scares me are numerous, but the first...the meds did not work with UC...and the symptoms are Chrons, but the test came back inconclusve....THe pouch did work good for a while. I am hoping it clears up...other wise, I will have some kind of ostomy...since the bowel is gone:depressed: BUt, it sure beats being sick...THe rest scares me too...the fistulas the abcess' I am so terribley overwhelmed. Thank goodness for some anti depressents. I have to stop obsessing over this...Thanks for listening...Most pouchers have good luck...Tell you friend to hang in! Sue (Where is spell ck?) :confused2:
Sue,
I had the same situation and the crohns came on just as quickly as when they thought it was "ulcerative colitis" before my emergency surgery. They again went up the latter with the meds...starting with azathioprine. I had a terrible reaction to the aza which led to terrible back pain while I was at work and had to go down to the ER (I work in the hospital) because I could not longer stand. I then was finally started on methotrexate and humira injections which both take 4 weeks to take effect but have seemed to be helping me. I've been feeling better and been taking these meds for about 2 months but in the last week or so my stool has been liquid no matter what I eat. So I have no idea what's going on. Just wishing I could have just had UC and be "fixed" as the doctors told me I would be!
I had the same situation and the crohns came on just as quickly as when they thought it was "ulcerative colitis" before my emergency surgery. They again went up the latter with the meds...starting with azathioprine. I had a terrible reaction to the aza which led to terrible back pain while I was at work and had to go down to the ER (I work in the hospital) because I could not longer stand. I then was finally started on methotrexate and humira injections which both take 4 weeks to take effect but have seemed to be helping me. I've been feeling better and been taking these meds for about 2 months but in the last week or so my stool has been liquid no matter what I eat. So I have no idea what's going on. Just wishing I could have just had UC and be "fixed" as the doctors told me I would be!
DJW
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No. They do it in UC because its limited to the colon. CD can effect the entire digestive track so a pouch isn't typically done.
