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Too many factors or not so mild flare anymore?

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Ulcerative Colitis
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Crazydad
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Joined : Sep 2017
Posts : 67
Posted 12/31/2019 9:51 AM (GMT -7)
My son and I have been fighting with his then mild flare for more than a month. Initially it was just red spotting on TP, not every day. We left California for 2 weeks and first went to Tel Aviv to do some sightseeing and see a prominent GI doctor there. Our CA-based GI prescribed us a week of hydrocortizone enemas instead of Rowasa and oral Uceris with idea to stop an early flare. It looked like cortenemas were working, but at the end they did not move the needle significantly. We had worse symptoms on Friday and Saturday last week with some mushy stool with some blood. Maybe it was caused by too much humus and falafel, or maybe it just a flare. Now, we have 5-6 bms, either totally formed with some blood on TP, or 1-2 times we just saw red mucus. So, things are definitely worse than they were few weeks ago. My son also got a cold in Tel Aviv due to too much rain.

Can his symptoms be caused by wrong food (fresh humus and falafel)? Cold?

I managed to buy European version of Uceris here and we started it 2 days ago. We also started Turmeric today, 1500mg in the morning and 1500 mg will follow at the evening. Got back to Rowasa enemas and today did Canasa supp during day.

Any comments/recommendations?

Not in NY mood at all sad
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iPoop
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Posted 12/31/2019 9:59 AM (GMT -7)
Food or a cold will not cause a flare to worsen.

Any new insight/ideas from this Tel Aviv doc?

Really a tough call. If oral and rectal route steroids will not touch it (uceris oral, hydrocortizone enemas) then you're generally talking about trying oral prednisone which packs a much stronger of a punch than those weaker meds do.

There's always adding azathiopurine/Imuran/6MP as well, but that'd take 3-months for results and require regular blood draws.

You could certainly try rowasa and also hydrocortizone enemas (one in the morning and one at night) as his inflammation sounds rectal in origin (alternating between 1-2 and 5-6 bms).
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Crazydad
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Posted 12/31/2019 10:10 AM (GMT -7)
The doc form Te Aviv recommended to do a colonoscopy/sigmoidoscopy asap to see where the inflammation is. We talked to him when symptoms were mild though. His hypothesis was that if inflammation is very low in rectum, then Canasa may do the work better than Rowasa. Other than that he liked Entyvio and mesalamine as these are the safest meds according to him. He also recommended few minor modification to our pescatarian/Mediterranean diet. Eliminate sulfites and emulsifiers (we are probably there already), reduce saturated fat to minimal (reduce cheese, fish other than wild, reduce/eliminate seafood, add chicken/turkey breast). Everyday food - apple, broccoli, avocado, baked potato put into freezer and then reheated, rice/oats/buckwheat are ok).
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Crazydad
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Posted 12/31/2019 10:15 AM (GMT -7)
So, food or cold could not have caused a bit of mushy stool and a bit more blood due to irritation?

I assume Uceris and Turmeric take more than few days to work, right? Anybody with experience with these two?

As I wrote in one of my previous post, 6MP really worked well for us (no symptoms), but my son's liver enzymes got too high and we had to stop. He was 15 that time and less than 100 pounds, and now his is 17+ and around 150 lb. Is it possible to try 6MP again? Did anybody succeeded from the second attempt? Did anybody failed 6MP, but went fine on Imuran?
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iPoop
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Posted 12/31/2019 10:48 AM (GMT -7)
Food choices are not going to suddenly make something dramatically worse/better. It might mean one extra bm, or a slightly looser stool but it isn't going to explain dramatic swings, by any means.

Yes, I would give any new treatment at least 4-weeks to work before measuring results. Sorry, I do not remember his whole history, know you've been posting a lot lately smile

If his liver enzymes skyrocketed once, then they would likely do so again. The only way you could, in theory, take 6MP without the liver enzymes is this. Start 6MP at a low dosage concurrently add Allopurinol. It's a potent immunesuppressing combination that has worked for some of us, in the same liver enzyme issue. Keep that one on the back burner, I would not leap at it now.
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Crazydad
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Posted 12/31/2019 11:00 AM (GMT -7)
Thanks, iPoop!

Anybody tried Imuran after failing 6MP?
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iPoop
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Posted 12/31/2019 11:48 AM (GMT -7)
When you take a Imuran/azathiopurine pill, your liver metabolizes it into 6MP. So, taking 6MP directly saves a step, means a smaller pill, and lower dosage (6MP dosages are 1/2 the dosage of Imuran). So taking Imuran is no different than taking 6MP, and I would not expect a different result from it.

The other option within that class of medications is methotrexate, which is different enough than the above. MTX is more common with crohn's patients but is sometimes used with UC. So, given your 6MP troubles, MTX is another choice that could be inquired about with his pediatric gasteroenterolgist. MTX is available as an oral pill and also as an IV infusion. MTX is known to be fast working, unlike 6mp/Imuran. I do not believe liver enzyme problems are at all applicable to MTX, but I would certainly quiz a gasteroenteroligist on this very point to verify its accuracy (as I could be wrong).
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Sara14
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Posted 12/31/2019 2:36 PM (GMT -7)
I started my most recent flare a few days after getting a cold, but I think it could have just been a coincidence because that doesn't usually happen to me when I get colds. My GI seemed interested in that though and seemed to notate it in my medical record.

I don't think hummus or falafel would hurt his gut. I eat those two items all the time. Falafel can be pretty greasy if it's fried so that could cause an upset stomach if he doesn't eat many fried, fatty foods and isn't used to it, but that wouldn't last long. Sounds like the flare has just gotten a little worse. Sorry.
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ld2186
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Posts : 33
Posted 1/2/2020 4:35 AM (GMT -7)
Hi Crazydad,
I tried Uceris during a mild flare. My memory is that my doc said to at least give it at least a week to work. I've been on Turmeric a while, but again my memory is that my doc said to wait for weeks, not days to see results. I agree with iPoop that I would wait for 4 weeks. So my best advice is to be patient. I know it can be hard. Wishing you both well!

Best,
Lisa
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Sara14
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Posted 1/2/2020 9:01 AM (GMT -7)
Is your son doing any better yet?
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Crazydad
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Joined : Sep 2017
Posts : 67
Posted 1/2/2020 11:11 AM (GMT -7)

ld2186 said...
Hi Crazydad,
I tried Uceris during a mild flare. My memory is that my doc said to at least give it at least a week to work. I've been on Turmeric a while, but again my memory is that my doc said to wait for weeks, not days to see results. I agree with iPoop that I would wait for 4 weeks. So my best advice is to be patient. I know it can be hard. Wishing you both well!

Best,
Lisa

This is hard, but I have to learn how to be more patient. Sometimes I get in a trap of comparing symptoms day by day, or even bm by bm.
He's only been on Uceris for 4 days and turmeric for 3. His symptoms are slightly better than a week ago - 4-5 bms, some are totally fine, one is only red mucus and some are fine but with blood on TP. It is worth than a month ago, but better than a week ago. I hope adding Uceris, turmeric and supps during the day (some days) will work.
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iPoop
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Posted 1/2/2020 11:31 AM (GMT -7)
Important to take the long-view. Compare week-to-week for the most accuracy. Totally inaccurate with way too much white noise when you look at day-to-day, and bm-to bm.
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Crazydad
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Joined : Sep 2017
Posts : 67
Posted 1/3/2020 2:54 AM (GMT -7)
working on changing may approach smile thank you!
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kchw496
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Joined : May 2017
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Posted 1/3/2020 9:21 AM (GMT -7)
One other thing to note about turmeric is that there are often challenges with absorption, and supplement forms that are hydro-soluble absorb better.
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Crazydad
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Joined : Sep 2017
Posts : 67
Posted 1/3/2020 10:50 AM (GMT -7)
We are currently taking 1500 mg Qunol (enhanced absorption), but I see some similar ones by the same producer with explicit "hydro-soluble technology" note. Somebody recommended Pure Encapsulations brand. So, we may want to try it.
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Rosiedays
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Joined : Jul 2017
Posts : 313
Posted 1/5/2020 4:04 PM (GMT -7)
You’ve convinced me to make baked potatoes and put them in the freezersmile
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Crazydad
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Joined : Sep 2017
Posts : 67
Posted 1/5/2020 11:51 PM (GMT -7)
Read an article recently with the same point:

Add resistant starch
Most of the starch in our diet - like white bread and pasta - is quickly broken down and absorbed. But a fraction of that starch is resistant to digestion and acts more like a fiber, feeding the bacteria in our gut. Resistant starch has been identified as particularly beneficial for supporting all of those healthy functions of the gut microbiome.
Some sources of resistant starch include potatoes and legumes. All sources of starch can also become more resistant after cooking and then cooling in the fridge. So those leftover potatoes and pasta, cold or reheated, may have some added microbiome-promoting punch.
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Serenity Now
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Joined : Jan 2009
Posts : 2400
Posted 1/6/2020 7:15 AM (GMT -7)
I drink potato starch mixed in water everyday. I do believe it is beneficial, but even if it doing nothing it is not doing any harm.
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Crazydad
Regular Member
Joined : Sep 2017
Posts : 67
Posted 1/27/2020 12:50 PM (GMT -7)
So my son's symptoms gradually got worse. It looks like Uceris was not enough to stop the flare and cortenemas did not work for him either. Our GI put us on 20 mg of prednisone starting Saturday. So far the situation looks like this: 4 bms before and after breakfast (prednisone), then silence till 8-9 pm, and then few more bms. My son had to wake up few times last night to pass lots of gas.

How long does it take for prednisone to work? when do you think about increasing the dosage? once or twice a day?

Really anxious... tried to stop the flare for 2 month only to see it got worse. still looks like left sided/rectum inflammation. Need some relive to think about the next step. Measuring Entyvio level tomorrow and next infusion is on Thursday.
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Sara14
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Joined : Mar 2007
Posts : 6235
Posted 1/27/2020 1:43 PM (GMT -7)
Sorry to hear your son got worse.

I've never had a GI start me at such a low dose of prednisone. Normally, UCers are started at 40 mg, you're on that for two weeks and then you taper by 10 mg every week thereafter (some GIs have you taper by 5 mg). Is this his first time ever on prednisone? It typically worked fairly fast for me (I would start to improve within 2-3 days) the first many times I took it. Now it takes longer (1-2 weeks). Normally, it is just taken once a day to help prevent insomnia but you can split it up if you want.

My symptoms are also worst in the mornings and then sometimes come back in the evening.
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iPoop
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Posts : 16180
Posted 1/27/2020 1:49 PM (GMT -7)
Sorry to hear your son is still struggling. Hang in there dad!

"How long does it take for prednisone to work?" Pred's known to work rocket ship fast. It can work in 24 hours, days, take a week, take up to 2-weeks. It really depends how severe the flare is, how extensive it is, and whether the pred dosage is enough.

"When do you think about increasing the dosage?" If no response within 2-weeks. Often 40-mgs of pred is needed, and 60-80 mgs is not unheard of for bad flares.

"Once or twice a day?"
Once a day for pred is preferred, as insomnia is terrible with split doses (that is taking med 1/2 in morning and 1/2 later in day). Take all of the pred shortly after waking up to reduce the odds of insomnia.

Just know, pred is colloquially known as the devil's tic tacs. Side effects are going to hit him on pred, one or more of the following: insomnia, night sweats, wild mood swings, insatiable appetite, moonface, etc.

Recommend him increasing his calcium, vitamin D, and Potassium intake while on pred. Recommend him decreasing salt intake while on pred, as that only increases bloating/water retention.
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Crazydad
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Joined : Sep 2017
Posts : 67
Posted 1/27/2020 1:51 PM (GMT -7)
Hi Sara!

We were on 40 mg 3 years ago when Remicade stopped working. At that time he was just on prednisone (no other meds) and urgency and blood disappeared in 1-2 days. He was 90 pounds then. He is 130 now.
I assume our GI assumed that his flare was still sort of average, plus he is non quite a few other medications, so she decided to go with 20 mg. There are improvements, but I wonder whether it is better to go more aggressive with prednisone and then tapper off, or wait till 20 mg do the work.
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Crazydad
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Posts : 67
Posted 1/27/2020 2:07 PM (GMT -7)

iPoop said...
Sorry to hear your son is still struggling. Hang in there dad!
Recommend him increasing his calcium, vitamin D, and Potassium intake while on pred. Recommend him decreasing salt intake while on pred, as that only increases bloating/water retention.

thanks! Was waiting for your response, actually and almost missed it as was responding to Sara. Do you know a desired calcium mg per day?
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Sara14
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Posted 1/27/2020 2:21 PM (GMT -7)

Crazydad said...
Hi Sara!

We were on 40 mg 3 years ago when Remicade stopped working. At that time he was just on prednisone (no other meds) and urgency and blood disappeared in 1-2 days. He was 90 pounds then. He is 130 now.
I assume our GI assumed that his flare was still sort of average, plus he is non quite a few other medications, so she decided to go with 20 mg. There are improvements, but I wonder whether it is better to go more aggressive with prednisone and then tapper off, or wait till 20 mg do the work.

I'm not sure either. Maybe wait another few days and see if there is improvement and if not, you could discuss with his doctor.

Yes, make sure he's getting enough calcium and Vit. D while on pred. Very important. 1,300 mg per day of calcium for teenagers. You can only absorb about 500 mg at a time. Getting it from food is preferred.
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iPoop
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Posted 1/27/2020 7:42 PM (GMT -7)
about 600 mgs a day is fine, don't want to go overboard
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