Fecal incontinence.. do others of you deal with this too?

[jess_mama]

:sign0085:I have yet another call into Evan's gi today regarding fecal incontinence. Evan had a bad episode of it a few minutes ago. It seems to be one of the signs he may be going into a flare? Anyways, he has such urgency and then before he can even get to the bathroom, it's all over him essentially. I put him in diapers again until it goes back under control, which at least the last few times only happened when he's back on prednisone.

He is already on Pentasa and now Methotrexate (Trexall) and I'm scared they are going to increase the Methotrexate yet again. He is now on 11.25mg/weekly. The Pentasa doesn't even begin to touch his colitis. He's also on VSL3 for juniors. How many more meds can we put into a 42 lb kid to make it so he can have normal bowel function? This just makes me so sad and frustrated with this disease. Will Evan have to deal with this the rest of his life?

Have any of you dealt with this problem? If so, any advice for me and my boy?

 

[Supermom]

My son, who just turned 13, deals with this more often than not. We went to the park last week and he had just gotten out of the car to head to the restroom and it went all down his leg. He was so humiliated and upset. He does wear Depends most of the time and if he is in deep sleep, he may have an accident during the night (and the bathroom is less than ten feet from his bedroom). My son takes Remicade, Methotrexate and the doctor just ordered the VSL#3 so he will be starting that in a few days. I feel so bad because he is so limited on activities he can do and having to know where a bathroom is at all times. I talked with his GI yesterday and she said drinking as many nutritional shakes, i.e. Boost, can help with not have so many bowel movements. Also my son takes Canasa suppositories and those are suppose to help with urgency as well. He actually slept all through the night last night! #ihatecrohns

 

[nogutsnoglory]

I wear adult diapers and have this issue. I definitely recommend diapers and pads. I don't know if Immodium is safe for children (I believe there is a child dose) but it is incredibly helpful at slowing down the bowels. I wouldn't recommend your child take it daily but if you know he has to go somewhere without easy access to changing and a bathroom it may be a good tool.

 

[Jmrogers4]

Second on the immodium we have used it on occasion but very sparingly like if we are going to be in the car for a long trip, airplane rides. We always pack an adult dose and kids dose when going on vacation just in case.

 

[Mylittlesunshine]

Lucy is still in nappies because of this
Problem.
It's so differcult I know what your
Going though.

 

[DanceMom]

A has had this problem in the past. I always brought a change of clothes and cleaned her up the best we could. Typically hers wasn't large amounts. She learned to laugh it off and accept it as part of her life. Not sure she will feel the same way as a teenager though. .....

 

[my little penguin]

Ds has had this problem prior to remicade when his prolapse is bad.
His prolapse is bad gain so he does use pads occasionally.
he is on humira, asacol plus canada which seems to help some.
Things have been better since they upped his humira dose.

 

[jess_mama]

This Canasa seems like it's a possibility to add on to his therapies. I'd rather try that and see if it helps than increase one of his other meds (neither of which I think are working at all). The only med so far that has kept his bowels regular has been prednisone. Unfortunately he can't stay on that one to maintain.

 

[my little penguin]

Canasa is a suppository. It only helps locally with the rectum and does not control inflammation in the rest of the colon.
OUr GI basically said for Ds it was a bandaid. It doesnt help alot but helps a tiny bit.
We will discontinue it once humira kicks in more at the higher dose.

FWIW MTX did absolutely nothing for my son.
Less than 6-mp
WE quickly moved to Remicade after 8 weeks on mtx since things got worse for him fast.

 

[Dexky]

Has your GI ever mentioned busedonide (Uceris). It is a steroid still but it targets the colon and has fewer side effects than pred. My son has just started it so I can't really sing its praises yet but AZMOM can. Her daughter has had a remarkable turnaround on it. Obviously, being a steroid, it's not ideal for long term but maybe it could get him over the hump and into remission. That's what we're hoping for!! Good luck!

 

[EthanClark]

I am sorry your son is dealing with this. I am almost 33 years old and have issues with making it to the bathroom quite often. Almost every bm is an emergency. It is very hard having to live your life around where is the closest restroom. My only advice is to try to not let it get him down and explain that it is a normal part of having this disease and he shouldn't be embarressed by it. I know that is easier said than done and I have to remind myself frequently. I can't even count the amount of times I have had accidents. Darn CD. :ybatty: