Crohns diagnosis after J pouch surgery

KeepFighting(Manny)Member

Hi all,

As the subject states, I have just been diagnosed with Crohns disease after having a functioning J pouch for 8 months. My last pouchoscopy showed inflammation in the pouch and ileum. The dr took biopsies and they came back positive for Crohns. I'm a little confused, worried and upset. I was told in Nov 2013 when I had my last pouchoscopy that my J pouch was fine, no signs of Inflammation. I have always had issues with the pouch since the take down. Diarreah and consistent pain/ cramping. I don't have any blood in my stool and I'm wondering is that normal to not bleed with Crohns? Or is it because I no longer have a colon? Because when I was diagnosed with UC I flared up, I bled. The real crappy part (pun intended) is I cannot eat anything solid anymore... The pain has become unbearable... I don't have a follow up with my specialist for two weeks but I can't go without eating for that long, so this morning I'm going to the hospital where I can at least recurve nutrients via IV and some pain control. My biggest concern is am I going to lose my pouch? I didn't do well with the Illeostlmy. It sent me into a deep depression as I'm only 29, single with no kids. I know it sounds silly but I didn't feel like a normal person (no offense to anyone) but I felt like a freak. One last question, I'm really against taking any cortisteriods like prednisone, what's an alternative if anti biotics don't stop the inflammation and putting me in remission? I heard Cannibas can be used to treat Crohns, is this a common solution? I'm afraid to ask the Dr because I'm not much of a marijuana smoker and my dr even frowns when I ask for pain killers. Thanks in advance for any information you provide.

MJL3

4/14/143:40 AM

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dtmackMember

Hi there,

my good friend Sara, is someone you should talk to.

She is on facebook under the name"inflamed and untamed"

She also has a jpouch with Crohns and is amazing at articulating issues and things to help. She has tons of videos and is known far and wide for her knowledge and advocacy.

She will be able to tell you anything.

Hang in there

Derek

4/14/148:13 AM

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Scott FMember

There are numerous medications that can get Crohn's under control (not just prednisone), and plenty of successful J-pouchers with Crohn's. You're going through a rough patch, but that's most likely because your Crohn's isn't (yet!) being treated effectively. Things should get better soon, once the right medications get worked out. I'm glad you at least have a diagnosis to explain your problems, since that opens up so many treatment possibilities.

4/14/148:44 AM

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jeaneMember

I have had a jpouch for three years with many troubles from the get go also. I was just diagnosed with eosinophils in my recent scopes ( small intestine tissue injury). I have chronic inflammation in my pouch but no Crohn's disease diagnosis, at least not yet. I too am very adverse to steroids but have been recently prescribed entecort which is not readily absorbed by the bloodstream and has less side effects. I have been in cipro almost constantly for the last two years.

I know it us very discouraging to go through this surgery only to realize you still need meds and feel worse since the operation and have now been diagnosed with a new intestinal disease/affliction. As others have said, there are many who are able to keep their pouch with meds. Don't give up the fight. With a good doctor and the right treatment, hopefully you can keep your pouch and get your disease in remission.

4/14/149:07 AM

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