Advice needed re what to do next?

Hi, my 20 year old son had a colonoscopy today to be told that in spite of having 6 infusions of infliximab (remicade) so far, his bowel isn't healing. The dr couldnt go too far due to risk of perforation but the UC was moderate to severe with lots of bleeding. So not good - a real blow. So what to do? Amazingly, he is well but goes to the loo too much. In the beginning it worked but this time a good week before his infusion (at 6 weeks) he started going to the loo more and it hasnt really kicked in as it normally does. So, he can try humira in about 7 weeks if he wants to (but she says it's better for crohns) and the dr wants him to meet a surgeon, she says she thinks this is the way to go. Such a big step and at 20. Talk of problems with fertility and pouchitis etc. What would you all do? Can anyone recommend anything else? Thanks

     Best to go over to the ostomy board with questions, or j-pouch.org.  It does sound like surgery is the best route for him to take now.  Remicade is considered the "big daddy" of the biologics.  Nine out of ten times if Remicade doesn't work, neither will any of the others.  Not to say there aren't objections to the rule.  Remicade failed me after my 3rd infusion.  I gave Humira a try for three months but no change in my condition.  I was not a candidate for j-pouch, but, living with a permanent ileo is WAY FAR better than the suffering I endured for twelve long years with ulcerative proctitis.

are hydrocortisone and 5-asa enemas in use?

Enemas can still help, even with pancolitis. I'm proof of that. No, they won't treat the entire colon, BUT they do an amazing job at treating what they can reach.

Having lived with active disease for 25 years, I imagine how much easier those years would have been had I had surgery instead. Fortunately remicade worked for me.

Also taken loads of prednisolone. Last Christmas his face was double its normal size.

I'm a recent surgery person (30 years old). I only had UC for about a year and I ran through all of the drugs. My surgeon recommended surgery about three months before I actually went to the consult, but I think she was right. I was at full dose Remicade, 30 mgs of steroids, and I still had an accident. I opted for surgery at that point. You point out that he's "so young" - and yes, he is young. But the "he's so young" goes both ways. He's going to have this the rest of his life in some form or another. I though about it this way. I have a long life ahead of me. The "heavy hitter" drugs aren't working. I can face 40+ years of dealing with horrible drugs (and bad side effects), accidents, and flare-ups and potentially needing my colon out in ten years anyway, or I can take time out now when I am relatively young (and healing faster), relatively healthy, and have the family support to have the operation. 90 percent of people are "happy" with their jpouch. I will likely be able to go off and live my life normally after the surgeries are done, as I've heard others have (and one I know personally who is crazy physically fit).

franny19,

my last colonoscopy showed disease throughout my whole colon and so I had to start with the hycort enemas and cortifoam.  The enemas do work its worth a try im in remission again, but I do pay close attention to diet,  take probiotics daily and use maintence enemas every few days.

Poor guy. From what you've said, I can see why surgey has been mentioned. In my opinion, I don't think surgery is a bad idea. At least get in and consult with some surgeons and get referrals to speak with patients, you never know how you will feel about the surgery after you meet with a good surgeon. I can imagine that surgery is probably the last thing you want to confront, I know I hate the thought of it but, younger people tend to heal faster and have less BMs daily than older people who go through the procedure. I feel like if I were young and I had my parents to lean on, the surgery would be a great option even though there is a long healing time. I personally can't afford to take time off work and I have no one to look after me so I don't see how it's even an option for me. I am also concered that it could be Crohn's. You definitely want to do everything you can to eliminate that possibility. In reality though, it seems like some cases of UC just do not respond to anything. On the other hand, mine wasn't responding to anything and I was finally able to get into remission with 6mp. I was extremely stressed and I think my antidepressant helped to focus my mind elsewhere and everything came together. Perhaps I just got lucky. Try to think positive, even if he's facing the worst (surgery), it will probably not only give him his life back but also allow him to lead a life without medicine and stress of flares.

Sorry its taken awhile for me to respond...I must be adapting to the bag because I've had a busy two days! I guess I'm adapting to the bag ok. I won't lie, I'm still at the point where it grosses me out sometimes when dumping it (splashes, getting stuff on the outside when dumping, smell, etc.). These are all things that should get better with the learning curve. My stoma also changed shaped quite drastically since surgery. My first bagging system failed me over the weekend and I had two leaks. I was not a happy person as you can imagine. I met with an ostomy nurse two days ago and we hopefully have a new system figured out. I've only been living in sweats and out on short excursions so far, but I'm expecting to not have many issues going back to work, working out, etc. im also not in a relationship right now so i havent thought about that aspect much. Before my operation, I had already decided that the bag would be better than I controlled UC, so that probably helps. The bag shouldn't limit a person in any way...well except for some extra armor if he plays football. :).

As for takedown schedule, I'm a bit of an odd case. B/c I had been on high dose steroids and Remicade, my surgeon has me as a three step operation. First was the colectomy so I can get off drugs. Second will be jpouch creation. Third will be takedown. Before the second operation, I have to wait six months AND lose 40 pounds. The six months will ensure that the steroids are out of my system. I think I will need to wait at least two months between the second and the third.

I have to say, five days after my operation I felt as good as I had the week before the operation. They said my colon looked pretty bad and needed to come out. It's amazing what a sick body part can do to a person. My mom told me the other day that I have color back in my face! And there is something to be said for healing while young.

How often does your GI recommend surgery? I had a very good relationship with my GI and had flat out asked "how often do you reccommend surgery." When she told me that I was the third person in ten years, then I figured I had a pretty bad case of UC. But it made me feel more comfortable knowing that she wasnt the type to just casually thow surgery out there as the best option. I think that most GIs really try everything they can think of before turning to surgery.

I just went through the same thing as your son last year, I am now free of UC through surgery, and life is great and I'm healthier then I've ever been. I'd love to talk with you. Please feel free to email me at ***

~Please put your email in your profile and not on an open forum. This is for security reasons - thank you! ~Red_34

Tiffany dont know how to reply to you as your email address is not to be found! Are you in the UK?

franny, I feel for your son. I have had pancolitis for 15 years. I am super healthy if not for the UC. Remicade did not work for me but I am trying other things like VSL#3 DS and Cimzia. I've had times where I go to the bathroom upwards of 15 times per day all liquid so to speak, so 6 times per day isn't too bad in my book. Do prednisone blasts now and then to keep things uder control. I am 39 years old, I still consider myself very young. Now, for whatever reason I have been lucky compared to some on here, I don't let the UC decide whether or not I travel and I still go places and do things and I've been lucky enough that so far I think I've had only 2 accidents in 15 years, not fun to have any but 2 ain't bad considering. That said, having the surgery scares the crap out of me (pun intended) and I am just not ready mentally. My doctor doesn't feel I have to have the surgery yet as my colon still looks not too bad considering and my biopsies have always shown some inflammation but nothing else. I say this because the reality is that no matter what anyone tells you, good bad or otherwise, about the surgery, if your son is not ready for surgery he shouldn't have surgery. His mind and his body will tell him when he's ready and I am not an advocate of pushing someone toward this incredibly invasive until THEY are "ready". I am sure as his mother this is killing you inside just support him though, it's great to become educated and all but ultimately it's his body and it's up to him what he's ready for and it's ok for him tosay he is not ready regardless of what his doctor is saying. You can live with this disease for a very very long time. My dad has had it for 30+ years and interestingly at age 60 his has kind of went into a long term remission on it's own with no meds or anything. His GI told him he has seen rare cases where the UC "burns itself out" in older people and they end living the latter part of their years like normal people with no flare ups ever again. He says it's rare and no rhyme or reason to it but it may be what is happening for my dad, stuff like that makes me wonder sometimes and probably is part of what keeps me from having surgery.