So confused and overwhelmed

OK, I give up. I hate this disease. It makes no sense and it's so inconsistent and unpredictable.  My 17 year old son started Remicade in May and was doing amazing. He had his 4th infusion a couple weeks ago and it did nothing. It's as if they forgot to put the medicine in the IV.  He's having 10-12 bms a day and there's all the symptoms of a flare.  He has a doctor's appt on Monday, but I'm afraid they're just going to put him on Prednisone again (which he REALLY DOESN'T WANT). Because this disease has turned me into a rather pesimistic person, I take this to mean the Remicade isn't going to work. So what's next?  I know he's totally freaked out about surgery and what if you have the surgery and something comes along down the road. He's only 17.

 I'm new here, but I have had pancolitis since 5/05.  I wanted to respond to your message about your son.  I am also on Remicade.  It has always worked well for me.  Then a couple of months ago the treatment just didn't work - I mean NOTHING.  I have my infusions done at a Rheumatologist (sp) office due to insurance, and I told her and my GI doctor about it not working.  They both said that it is VERY common for some reason for Remicade to not work one treatment and the next treatment to be fine.  And that is exactly what happened to me - my next treatment went well - in fact I go in next week for another.  So try not to panic just yet - I would give it another try.

 

34 years old
Remicade
Aziothioprine
Zantac
Prilosec

 

 

 

Good luck Lew -- let's hope the next treatment works and helps. It is so especially unfair for young kids to have this. I know how you feel - it is so tough to watch someone go through this and as much as you want to help there is so little that can be done to help.

The surgery route I know sounds scary but there are some great people here as you know sharing their honest insight. It has definitely given us information that we are considering if this keeps going on with no relief in sight. When it becomes the right decision to make I'm sure each individual reaches that understanding based on nothing working anymore, tired of all the meds, side effects or maybe even a medical necessity. Surgery was something we never even wanted to hear about actually until we read some very personal honest posts that gave us a better understanding.

May that not have to be something your son has to deal with. I pray he gets into a remission and can keep it that way for a long time.

---

60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided ulcerative colitis now & fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07  July 07 starting to feel somewhat normal 75mg Imuran 40  mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Colocourt enemas at night.