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is UC back with one instance of uncontrollable BM?

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Posted 1/11/2015 10:04 PM (GMT 0)
My son's being doing okay with remicade - his BMs were under control usually one per day as norm, with 2-3 BMs once in 10 days. Today, however he had a sudden urge BM leaked in underwear before he could get to toilet. There was a mucosy start to the stool in underwear, rest of BM was okay. There was a hint of blood too. Is this the start of a flare, or could it pass without getting worst? Any thoughts from personal experience if this is a one off and may not indicate much, or should we not send him to school tomorrow until we know for sure. Definitely got me anxious as I am on a business trip next week.
Posted 1/11/2015 10:07 PM (GMT 0)
I wouldn't worry about one episode. Uc can be anything but consistent.
Posted 1/12/2015 2:55 AM (GMT 0)
Could be the start of a flare or it could just be a rare event. He may have just had a bad reaction to something he ate or anything else. Keep an eye on it. Is he taking anything to help stop antibodies from forming to the Remicade? Only you and he can determine if going to school is the best.
Posted 1/12/2015 6:20 AM (GMT 0)
Thanks @garylousville. Any best practices for food/probiotics if it is start of a flare?

@iPoop, I am just very anxious given his last flare that started with foul smelling farts and ended up in a week of diarhea. Fingers crossed he had one more urge but barely any stool. Since then okay. He will go to school tomorrow.

I think we may need to change regimen. His GI had suggested that she may increase remicade dose, or reduce interval. what does remicade go from 8 weeks to 6 or 4? Has anyone had any experience with more aggressive remicade to control their condition?

Thanks!
Posted 1/12/2015 12:11 PM (GMT 0)
Remicade is given in either a dosage of 5mgs or 10mgs per kilogram. The infusion intervals are either 8 weeks, 6 weeks, or 4 weeks. So the maximum is 10mgs per kilogram on a 4 week interval. Why is he not on an immunosuppressive medication at the same time as remicade (Imuran, 6mp, or aza)? I ask because they help prevent one's body from developing antibodies to remicade, which otherwise make remicade either less effective or non responsive over time.
Posted 1/12/2015 5:45 PM (GMT 0)
Can he tolerate rectal medicine? That made all the difference for me. I don't like enemas as much as Canasa. It's very easy to put in and you can walk around right after inserting the suppository. Just be careful bc if he passes gas soon after putting it in, it can leak out. It's greasy and will stain clothes.
Posted 1/12/2015 9:17 PM (GMT 0)
Thanks @Kdragon09, my guess it he will gross out on the mention of suppository, he is anxious and get easily stressed. I will however discuss this with the doctor, what enemas have been effective for you?

@iPoop, when we switched away from Apriso and wanted to get off prednisone, we had to decide in a hurry on which medication to switch to. Doc said, 6 MP will take a few weeks whereas remicade results would be apparent in a couple of weeks (after first 2 loading doses).

I am thinking at this point to try Lialda or another ASA again. Last time I felt it caused him uncontrolled loose BM - maybe it might have been his flare in Sept 2013 and not Lialda. He tolerated Apriso better (for about 2 months) until we noticed it was suppressing his hemoglobin growth. It may not be a known side effect for Apriso but we definitely proved that by stopping it and seeing hgb go up, and then starting it to see hgb would stop right there. What are other top ASAs?
Posted 1/12/2015 9:27 PM (GMT 0)
Also, I think he has some inflammation going on as I noticed some streaks of bloody mucous around his stool tis morning (otherwise well formed). His next remicade isn't for another 4 weeks, maybe doc will try 6 week regimen this time. And I may talk to her about ASA options (try it one more time) something different from Lialda or Apriso.
Posted 1/13/2015 11:14 AM (GMT 0)
I am thinking of asking doctor to add a mesalazine drug for maint besides remicade. Lialda and Apriso have already been tried. Anyone have experience with Pentasa or Asacol. Has it worked for you and kept the disease under control? What side effects to expect?
Posted 1/13/2015 1:13 PM (GMT 0)
Lialda and Apriso are mesalamine drugs. If you were intolerant to them it is likely you will be intolerant to all oral mesalamines. In my mind if you are going to take the risks of Remicade then it darn well better put you into remission without having to do something else on top of it. But, I've never been in that predicament.
Posted 1/13/2015 1:34 PM (GMT 0)

garylouisville said...
Lialda and Apriso are mesalamine drugs. If you were intolerant to them it is likely you will be intolerant to all oral mesalamines. In my mind if you are going to take the risks of Remicade then it darn well better put you into remission without having to do something else on top of it. But, I've never been in that predicament.




Son, 15 diag with UC - moderate Pancolitis
Posted 1/13/2015 4:44 PM (GMT 0)
I've been on Remi for years. When I first went on it, I'd been on Azathioprine for a couple of years with no real results. I continued with both for a while, then reports of increased risk of lymphoma with dual therapy started appearing and my doctor discontinued the Aza. I do take an antihistamine before each infusion, but no immunosuppressant. So it's not a rule that you have to take both. Some doctors prefer to prescribe both "just in case."
Posted 1/16/2015 3:04 AM (GMT 0)
For me personally, I like Canasa. They are much easier to insert and hold in than an enema. I understand him being grossed out, but i's so worth it. It's like putting neosporin on a cut. It feels like it's healing the area right away. All that gurgling down there goes away. I would really encourage you doctor to prescribe it and for your son to get on board with the idea before the flare gets worse. Good luck to you both.
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