New Crohns diagnosis after 3yrs of antibiotics for pouchitis

Wow. I have had the same issues as you w no crohns diagnosis.  I never sleep through the night and I’m often up st least three times.  . I have chronic inflammation  in my pouch and ulcers as well and no meds. Why did they diagnose  ctohns?  Is Stelara an immune modulator?  So sorry for your troubles.  I can relate. 

My UC diagnosis changed to Crohn's in the pouch. I've been on Stelara for 8 months and it's been a big improvement to nothing --> humira --> entivyo --> stelara. That said, in still Cipro dependant. I've gone down from 1000mg to 500mg. I also take 15mg of oral methotrexate down from 25mg of injectable. 

My scope showed improvement 6 months into the Stelara, but is still inflammation in the rectum and closer to the rectum, and scar tissue where it was healed. We're monitoring to see if there's more improvement. My only other option is a perm ileostomy so why not wait and see!

Hope you have success w Stelara! It's a pretty magical drug if it works for you! I sleep through the night now and very rare urgency (I still watch what I eat and avoid trigger foods).

Sleeping through the night would be heaven!!

With the stelara have you been able to tolerate more non-white foods? Is your “trigger food” list getting smaller?

Jeane- i was so grateful for a crohns dx bc then atleast i can get onto a biologic drug. Msybe shes confused bc she saw just a severely aggravated pouchitis but i dont even care! Lol crohns gets me the treatment i need. Can you ask your specialist? 

I’m havjbg   another scope soon. I’ve had more scopes than i care to keep track of. I have chronic inflammation in pouch and some ulceration too. I can’t tske cipro. Have permanent ringing in ears due to it. Right now I’m battling severe anal fissures. I have tons of scar tissue at outlet and in anal canal yet still no crohns diagnosis.  The anal fissure pain is debilitating. If a medicine would help other than the creams i would gladly try it. Been skirting an ostomy for years. 

Awww i feel your pain, same here... hopefully your scope will provide some answers.

try and get in sooner

My diet has improved tons with the Stelara, and I've gained weight because there's no pain! The biggest issue for me are "fast foods" - foods that have either been sitting out (like the whole foods hot bar) or foods that have been re-heated (I can't seem to do leftovers). Seems to be a bacteria issue. I also can't do the typical seeds, nuts, skins, raw fruits and veggies. But cooked foods (to order!) Are fine.

I desperately just want to be able to eat healthy foods- whole grain breads and salads would be a dream come true

Well, Stelara won't change the fact that you don't have a colon fo digest the leafy greens! I do ok with romaine and if it's part of a meal with bulking foods like rice.

I'm sorry that I did not see this sooner.

I started Stelara 2 years ago (25 months) and at first it only worked for a few weeks at a time and then I'd have to go back to antibiotics (2.5 years of rotating antibiotics).  My insurance company would only approve the psoriasis dosage(45 mgs every 90 days) for Stelara because it wasn't FDA approved at the time for CDs.  I have ulcers in my pouch, call it what ever you want.

So thanks to Prednisone I needed a hip replacement and I had to discontinue Stelara for the operation and the recovery for about 6 months.   During that time the FDA approved Stelara for CD.  When I restarted Stelara I asked for the loading dose (IV loading dose and then 90mgs every 56 days); it has made all the difference in my symptoms, I haven't taken antibiotics in almost a year and my pouch acts pretty good most days.

I have never had night time emptying issues if I was on a medication, I've been able to sleep through most nights without ever needing to empty my pouch, just ulcers and diarrhea were most of my pouchitis symptoms.   July will be my 5th year with my jpouch and I've had symptoms since the day I was reconnected.

I am due for my stelara shot this weekend. 

Has anyone stayed on Stellera for  more than a year?

These posts are old now, so I'm not sure if any of you will be following. I have the same issue. After 20 years of pouchitis off and on I have now been diagnosed with Crohn's. Have a stricture 30 cm up from the pouch, inflammation and ulcers all over, but the diagnosis came from biopsy also. My symptoms are only frequency, no pain, I feel really good, so I was surprised at the scope results. Im to start Stellera on Friday, basically to prevent an obstruction/fissures/more surgery. The side effects I read about are pretty scary, and when I generally feel well, now I am having lots of second thoughts. Also, the fact that after a year it tends to stop working and you increase doses, and other drugs, etc., it seems like a step into the rabbit hole. Just looking for your stories. Thanks