Too many factors or not so mild flare anymore?

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

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).

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

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.

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).

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

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.

working on changing may approach thank you!

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.

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.

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.

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.

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?

about 600 mgs a day is fine, don't want to go overboard