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Does salofalk foam rectal medicine increase urgency and frequency of stools

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Ulcerative Colitis
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Posted 7/24/2019 5:32 PM (GMT -7)
Hello everyone. I am new here. My daughter, 10 yrs old was diagnosed with UC in Dec 18 and was put on 500mg Pentasa, twice a day. She has pancolitis UC. Her calprotectin is still high at this point, 700+. It used to be 1000+. We also put her on the IBD AID diet. Her symptoms are soft to watery stools, waking up at night to go, urgency and sometimes soiling herself. Her BM is around 6 or 7 times a day.

Recently, the Dr increased her Pentasa dosage by another 250mg, and also introduced the Salofalk foam rectal med,1g. We have been using the rectal meds for about 2 weeks. I don't see any decrease in her symptoms. Now she goes at least 10 a day. Especially, after administering the rectal foam, she would retain meds for about 30 min. Then she would go poop 2 or 3 times more over the next few hours. She already went to poop just before administering the rectal meds.

I can't quite understand her symptoms. Is this a sign of intolerance to the higher dosage of mesalamine? Or is it a sign of the medicine working to get rid of inflammation before it progress to healing? I don't know how long more to carry on with the rectal med before calling quits.
Posted 7/24/2019 6:07 PM (GMT -7)
I'm sorry your daughter and you have to deal with pancolitis.
Salofalk is helpful to heal the rectal area, yes it can make BM's happen but as my rectal area healed I was able to retain enemas longer and BM's happened less. I used them at night (I used liquid type not foam). Some people are intolerant/allergic to the preservative in the liquid enema but I don't know if that is true of foam type.

2 weeks is not enough time to say the rectal foam isn't working, as long as she is not having a bad reaction to it. 30 days is better unless you really feels she's getting worse with it. Treating this area was the best thing I did because oral mesalamine RX did very little for me (oral RX helps other people however).

I'm not a believer that you have to get worse before getting better.
Diet modification helped me. Are you keeping a food journal of foods eaten on your AID diet?
Insoluble fiber caused lots of problems for me, when I eliminated it I started getting better, slowly, while consuming more resistant starch (potatoes, rice noodles). YMMV. Good luck.
Posted 7/24/2019 6:35 PM (GMT -7)
Yes I do keep a food journal. Her food list has been tried, tested and just kept to the safe ones. I don't make any changes to food list as I am afraid of making her symptoms worse.

Thank u for your response. We will continue with the rectal meds for a while more.
Posted 7/25/2019 6:28 AM (GMT -7)
Welcome to the forum, but I am sorry to hear your daughter is flaring. My assessment is your daughter is having a severe flare with 6-7 bms a day, and is being very under-treated for her flare. She needs stronger medication dosages, and maybe even stronger meds to recover from her flare. I would press this with her pediatric gasteroenteroligist.

With 6-7 bms a day, rectal meds might be hard to retain for long, expected. A steroid would heal that area faster, and enable you to then go back to the safer mesalamine.

I know pediatric dosages of mesalamine are lower, especially for a 10-year old. For an adult it would be 4,800-mgs a day of oral mesalamine, and 4,000-mgs a day of rectal-route meds. You are saying an oral dosage of 1,250-mgs a day, and 1,000-mgs rectal-route which still seems pretty low even for a child. I would ask your pediatric gasteroenteroligist if that dosage could safely be increased for a child of her age and weight. I would ask her doctor about stronger medications, as she is still suffering. Might be time for an oral steroid to control things faster.
Posted 7/25/2019 7:56 AM (GMT -7)
Thank you John to your response. When u said a steroid would heal that area faster, are u talking about rectal steroids or oral or combination of both?

I also think her symptoms are not controlled at all. It has been 7 months. Do you have any idea how long do people take to heal from pancolitis UC?
Posted 7/25/2019 7:58 AM (GMT -7)
Her body weight is 23.5 kg. Do u think her medicine dosages are still too low? I will discuss further with the doctor.
Posted 7/25/2019 8:39 AM (GMT -7)
I'll defer to your doctor on dosages, I am not one and cannot say what is a right dosage for a child. It jsut seems low to me, no harm in verifying she's at max dosage with her doc (and if not upping the dosage).

Yikes. If she's 7-months into this flare and still suffering I would ask about much stronger medications beyond what I said above. I would also ask about biologics, like remicade/humira. As prolonged flaring for a child can effect her growth.

For pancolitis an oral steroid would be preferable. It's not impossible to prescribe both at once, but rare. I'd say steroids plus biologics as a steroid would be my opening talk with this doc. With a backup of increasing the mesalamine doses. Maybe get a second opinion from another doc...
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