Maybe Biologics might be the next step. I know Mesalamine enemas work a lot better Mesalamine pills. I would suggest Biologics or Mesalamine enemas.

@goose posted:

Good afternoon everyone.  My son (15 yo) was diagnosed with Acute Severe UC in July 0f 18.  Had a colectomy in Aug of 18, j-pouch construction in Nov of 18 then is take down in Jan of 19.  We've had a lot of bumps and bruises along the way.  He's been experiencing cuffitis for the past 4 months.  He's dropped a considerable amount of weight over the past several months (he's currently 5'8" at 104 pounds).  He's on pentasa, imodium, iron, and a hydrocortisone suppository nightly.  He's in the bathroom 6-8 times a day at 20 minutes a time.  I want to try a probiotic, but kinda at a loss.  I want to try VSL, but it's expensive and not covered by insurance.  Oh, and he's lactose intolerant.  Does anyone have any experience with this issue.  We are also scheduled for another pouchoscopy/endoscopy in June.

TIA

I have had Uc and crohns, 9 major abdominal surgeries, chronic pouchitis, and recent scans show telescoping intestines. I have also struggled consistently with cuffitis. it has ruined my rectum (which is a fake pouch that was formed during 3prt surgery.) I have reactions to sulfa drugs. proctofoam aka the 7 layers of hell, suppositories, cream, etc have never helped. diet, proper maintenance does wonders. buy the barrier cream (purple lettering and its used for incontinence) this stuff is wonderful. it comes an ointment too. knock off brand hemorrhoid wipes could cause the rectum to flare as well. its a trial and error, such is our disease. there were too many numerous days I would just lay in the shower and cry I hurt so bad. I wish I could help

Hi,

Have you seen Dr. Bo Shen? He is in NY and he is not only the best for pouches, he is kind and sincere.
I too am having a severe bout of cuffitis and pouchitis so I am sympathetic to your son. The plan of care for me is a biologic (Entyvio), hyperbaric oxygen therapy, biofeedback therapy and a supplement EGCg for inflammation. The supplement alone has helped quite a bit but still not where I need to be. Was told to drink (2) 32oz of Gatorade a day.  Changing my diet to have more lean protein and trying to get movement in my day (walking) to help myself along as much as I can.
Everyone is so different but hoping you can connect with Dr. Shen if you haven’t already. Take good care, Julie

Also, I’ve found getting my VSL at Costco is the best price! You don’t need a membership to use the pharmacy!

@juliemk3 posted:

Also, I’ve found getting my VSL at Costco is the best price! You don’t need a membership to use the pharmacy!

Thanks

Has he tried Canasa Suppository?  I do hydrocortisone suppository after the morning bms.  I’d find out about Canasa. It goes directly to the area and it works all night long.  It has been a life saver.  And I also fight cuffitis for years.  The pain is so unreal.  I’m so sorry.  

Canasa is Mesalamine in a suppository form.  Sorry I didn’t add that above.  I’d try that before I tried Biologics.  Those can really effect other parts of your body.  And the Mesalamine enema isn’t strong enema and really doesn’t work.  I truly feel he needs the Canasa.  It’s amazing.