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Why do I see improvement when I am on antibiotics and worsen when done with antibiotics?

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Ulcerative Colitis
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Posted 8/27/2019 2:55 PM (GMT 0)
Hi all. Hope someone can help here or share their experience with me.

My 10 yr old daughter was diagnosed with UC pancolitis Dec 2018. she always showed improvement in symptoms when put on a course of antibiotics. She has taken Flagyl a few times and recently, Cipro as well. For her most recent hospitalization, they put her on IV antibiotics followed by oral upon discharge from hospital. Also started on 40mg oral pred. A about a week after completing the oral antibiotics, her diarrhea and mushy stools came back, frequency up to 5x now. She is still in 35mg of Prednisone. Why is this happening? How do I stop this endless diarrhea? She has not been able to go into remission since the diagnosis. We are also very careful with her diet and currently following the IBD-AID. Please help.
Posted 8/27/2019 3:31 PM (GMT 0)
I don't think anyone really knows why antibiotics help some of us yet. My guess is because they are wiping out all the bad gut bacteria our bodies are fighting against (also wiping out the good bacteria though).

What does her doctor say to do? What is IBD-AID? I'm not familiar with it? Is she on any meds besides prednisone? Was she given the antibiotics specifically for her UC or for an infection (just curious)? I am sorry that she has not achieved remission yet.
Posted 8/27/2019 4:49 PM (GMT 0)
Why is your daughter not on any of the first-line 5ASA meds?

q
Posted 8/27/2019 5:12 PM (GMT 0)
Yes she has been on oral Pentasa 500mg twice a day. We have tried rectal salofalk foam 1g as well. It made her symptoms worse which resulted in our last hospital stay.
Posted 8/27/2019 5:24 PM (GMT 0)
A minority of UC patients report antibiotics helping with their UC symptoms. It's possible that there is a secondary, opportunistic gut infection that the antibiotics are helping with.
Posted 8/27/2019 5:38 PM (GMT 0)
Hmmm. The hospital has done a stool test to check for Cdiff and other bugs...but can't find anything.

IBD-AiD is a special diet for UC and Crohn's. Diet developed by a medical school, UMass.

One of the GI told me that antibiotics has anti inflammatory property as well.

What can I do to stop this from going downhill further? She's already taking probiotics like florastor and vivomixx.
Posted 8/27/2019 10:12 PM (GMT 0)
Have you tried her on the SCD diet, which purports to change the gut microbiome?
Posted 8/27/2019 10:52 PM (GMT 0)

Abcjdj said...
Hope someone can help here or share their experience with me.

Please see my post here: https://www.healingwell.com/community/default.aspx?f=38&m=4144681 This just might help explain it...
Posted 8/28/2019 1:28 AM (GMT 0)
Hi Bruce J. I've read your post. Yes in my experience antibiotics calmed down her guts. Now the issue is how to rebuild her gut lining and repopulate with good gut bacteria. She has been taking probiotics, florastor and vivomixx (aka visbiome in USA). Am I missing something in her diet? Should she consumed more bone broth, glutamine etc? I have no idea. Our GI isn't familiar with using dietary treatment but they are not against it either.
Posted 8/28/2019 12:09 PM (GMT 0)
What UC medications and dosages is your daughter currently on, and what has she previously tried/failed?

As far as alternatives (supplements and diets) there are no hard-and-fast rules on what to try, what order, or what might have the best results. Rather it is all trial-and-error, with no guarantees of success from any one thing. A lot of self-experimentation, but this is a lifelong illness so many of us have tried many things over the years. As this is such an individual illness, my solution is not hers, hers is not mine, etc etc.

If you think it is something gut bacterium based, some have tried Fecal Microbiota Transplantation, which has a lot of clinical trial interest within the last few years. As typical for UC, some claim miracles, others it did nothing, and some even had their symptoms get a whole lot worse. It's approved for reoccurring C Diff but anything else is experimental.
Posted 8/30/2019 1:27 PM (GMT 0)

chocotofu said...
Have you tried her on the SCD diet, which purports to change the gut microbiome?

IBD-AID and SCD are essentially the same diet. IBD-AID is a derivative of the original SCD with a few tweaks like allowing oatmeal, occasional sweet potato, and tamari (soy sauce). This was based on research done by UMASS.

OP, how long have you been doing IBD-AID? I would say you can back off a bit on it if she is not seeing any improvement after a month or two. Journal everything (diet/medication/symptoms) if you can manage it. You may stumble upon a symptom trigger. There are some "legal" foods that are not tolerated by some people. Unfortunately, childhood IBD tends to be aggressive and there are not currently a lot of answers. I have UC and have been through a scare with my 8 year old which (hopefully) was nothing. Sorry your family is dealing with this. Diet may play a role but that has not yet been firmly established. Trial and error is all we have. General consensus is that fiber and prebiotics are beneficial (if tolerated) and processed foods are probably not good. Animal protein has been linked fairly strongly to IBD but this contradicts the benefits reportedly fro SCD/IBD-AID. Most dietary studies are poorly designed.

Dig through the posts here and you will find various supplements etc that may be worth trying. This is also worth a read:

https://www.dietvsdisease.org/ulcerative-colitis-diet/
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