New to forum--my daughter has UC

I found this site so very useful when I had prostate cancer. I'm doing great now but worse from my point of view is that my 19 year old daughter has UC. We are at the point of her first flare up and have to decide what course to take. I'd appreciate any advice or insight you all might have.

She started having bloody diarrhea late in 2012. We saw a local "generalist" GI doctor who performed a flex sigmoidoscopy and saw some minimal inflammation in the rectum; treated with proctofoam. Things didn't really get better and around June of 2013 we discovered she was severely anemic. She responded well to iron infusion and iron supplements (i'm not sure how much of the anemia was from UC and how much from heavy periods--she's not on birth control pills to help with the menstrual bleeding). At that time she had a colonoscopy which revealed more inflammation past the splenic flexure. She was put on lialda plus canasa without much response; she had another colonoscopy in September of 2013; at this point we were with a GI who specializes in IBD. He found basically a pan colitis although at that point she was also found to have c diff so its hard to tell how much was UC and how much c diff. She went on a course of antibiotics, canansa, lialda and uceris. She responded well and was basically in remission by January of 2014. By spring she was only taking the lialda (max dose). Her bloody diarrhea came back in September of 2014. The GI added uceris; after four weeks there was no response so he just did a flex sig and found inflammation and some ulceration all the way to the splenic flexure, as far as he could go.

While her disease on colonoscopy is widespread her clinical symptoms are in the mild to moderate category. She hasn't had weight loss; her anemia is gone with supplements; she gets occasional nausea but no real pain; she has two to three bowel movements a day, some loose some formed, with blood mostly. Some urgency but not horrible. The UC has not interfered a lot with her life--she is in her sophomore year at college (three hours from home), is an excellent student, participates in lots of activities and has lots of good friendships. I know it has to be having an emotional toll but she doesn't really show it.

Her GI doctor is recommending Simponi at this point. He is sometimes hard to pin down on what his thinking is and what he thinks is best. He didn't recommend trying prednisone (he thinks she's shown that steroids won't induce a significant remission); he offered 6-mp as an option, and remicade, but thinks Simponi is just as reasonable and will fit better into her situation--away from home, can give herself the injections vs having to find a place for remicade infusions, etc.

Does this sound reasonable or are there major red flags here? Thanks so much for any advice!

Paul

I think it sounds like a good plan given her history so far. You will get varied opinions for sure. I had pancolitis (I say "had" because I got so bad I needed surgery) and it can go from moderate to severe very quickly. I have read a lot of people have had good results with Simponi so it's worth a try to get her in remission before she gets worse. Remicade seems to work even better with UC. Good luck!

Ps - prednisone is never a good answer. It's fine as a rescue drug but not for maintenance.

A couple of things I would say here:

Do make absolutely sure that the C diff is cleared. Get the best testing you can; protocol where I am to see if toxin is present is four stool tests on four consecutive days. Try to get the stool tests straight to the lab and keep them cold, it is really often missed in stool testing. If some c diff is surviving in there the steroids would help it to do so.

Iron supplements, not sure if she is taking oral iron but oral iron is controversial in UC and may even aggravate colon lining into a flare - if possible I would stay with the infusions and test zero oral iron - quite detailed paper on it here www.ncbi.nlm.nih.gov/pmc/articles/PMC3959949/

Can't help you on the biologic question as not had them myself.

Sorry for your daughter, and for you. I have a soft spot for youngsters for obvious reasons. Agree that the C-diff has to be cleared. Think she may need to dial up the meds, and 6mp or Az could work. There are many docs who would try the biologics about now, considering the 5asa's didn't keep her in remission very long. Young people can have aggressive disease, and each flare gets harder to treat. A birth control pill can ease the iron loss, and keep her hormones stable, might want to add that if she doesn't smoke or fall into a high risk group. I cannot speak to Simponi, but Remicade is not that hard to do during college. Typically a few hours every 8 weeks, and it has a long history. Discuss Entyvio too, it had the easiest of infusions, but some insurers want you to fail another biologic first. Glad your doc has respect for judicious use of Pred. Best. Keep us posted.