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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 7/25/2019 12:32 AM (GMT 0)
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 7/25/2019 1:07 AM (GMT 0)
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 7/25/2019 1:35 AM (GMT 0)
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 1:28 PM (GMT 0)
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 2:56 PM (GMT 0)
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 2:58 PM (GMT 0)
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 3:39 PM (GMT 0)
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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