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What else to do to stop a mild flare?

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Ulcerative Colitis
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Crazydad
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Joined : Sep 2017
Posts : 67
Posted 12/17/2019 7:32 PM (GMT -8)
It's difficult to live with UC. It is also tough to be a parent of a son with UC. My son was diagnosed in Oct 2016 when he was 14. Failed Remicade rather quickly and was switched to Entyvio. It took him more than a year on Entyvio and balsalazide, mesalamine enemas, VSL#3 to get into remission. Then we had some "good time" in remission, gaining weight and catching up on his height. Overall, 18 months in remission or so.

Few months ago his calprotectin results came out high (around 300) and the doctor switched him back to enemas from supps. There were no visible symptoms. His calprotection improved to 150 a month ago, but at the same time he started to see some diluted reddish spots on toilet paper once a day few days a week. This is where we are: daily enema, balsalazide, Entyvio every 6 weeks, VSL#3 and some vitamins and mild symptoms that sometimes disappear for 4-5 days and then reappear for 1-2 days. My son is 17 now and one day we will probably consider Xelianj or Stellara, but I do not want to rush as although Entyvio does not seem to be too effective, it is less harmful and it is also unnerving to give up on it as there are not too many options available.

Any ideas what we can do to get back into symptom free life?
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iPoop
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Posts : 16404
Posted 12/18/2019 5:45 AM (GMT -8)
Sounds like you're doing all of the right things.

One suggestion I have is to add a thiopurine to the mix: azathiopurine/imuran or 6-mercaptopurine. There's low odds of a lymphoma in adolescent males with thiopurines which is something to consider. There's metrotrexate which I believe is safer, but more often used in Crohn's. Something you can discuss with his pediatric gasteroenteroligist and see what you all thing of it.

The other is to verify there is not any peri-anal complications of an UC going on. We're much more prone to things like hemorrhoids (both internal or external), fissures (small tears just inside or outside the sphincter), and abscesses (small pimple like growths outside the sphincter within a few inch diameter of it). Not sure if he has a history if it. Could be as simple as trying an over-the-counter hemorrhoid treatment for a few weeks and see if it clears up the blood. We're much more common to having such complications, as we sit on the toilet repeatedly, strain, and sit on the toilet for long times (all things that make a hemi more frequent).
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Sara14
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Posted 12/18/2019 6:10 AM (GMT -8)
I can't think of anything else. He's really lucky to have a parent who cares so much though.
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DBwithUC
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Posted 12/18/2019 6:34 AM (GMT -8)
With things so quite, there could be benefit form a probiotic.It is a bit hit-n-miss unless you have a profile of the gut microbes, and some idea of what you want the probiotic to change. Then you have to find a probiotic that has the particular strains that will help foster that change.

Also some fibers, like oat bran, can promote byuterate fermentation, which is associated with mucosal healing. Don't take too much or there may be constipation.

good luck
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Crazydad
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Posts : 67
Posted 12/18/2019 6:49 AM (GMT -8)
To iPoop... thanks... we tried 6 MP 2 years ago. worked very well for his symptoms, but we had to discontinue in few month due to elevated liver indicator (do not remember the name).

Testing hemorrhoid-type of treatment may be a good idea. My son does not feel any pain or discomfort. Can he have a hemorrhoid or fissure and no pain at all?
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iPoop
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Posted 12/18/2019 8:19 AM (GMT -8)
Yeah internal hemis, like I have now, tend to randomly bleed without any pain or other symptoms. I've been confirmed in a Remission via endoscopy despite these random blood on toilet paper episodes. Flare bleeding tends to be consistent. Whereas hemi bleeding is random, nothing some days, slight other days, and a lot of blood some days.
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Crazydad
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Joined : Sep 2017
Posts : 67
Posted 12/18/2019 11:09 AM (GMT -8)
We did not have a lot of blood, but what you describe may be his case. will ask his GI if she is ok with hemorrhoid treatment. I assume the same treatment can work for fissures as well. Thanks for your ideas, iPoop!
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RocketMan12
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Joined : Jan 2012
Posts : 28
Posted 12/19/2019 5:27 PM (GMT -8)
Hi Crazydad,

As a pediatric UC veteran (diagnosed around age 7, now age 30), I don't have much to add. It sounds like you are doing everything you can and should!

While I'm keeping my fingers crossed for the internal hemorrhoid possibility (as that would be non-UC), I do think you are right to be on alert given the rise in fecal calpro. Do you have that tested at regular intervals, or only as symptoms appear? To my knowledge and from personal experience, a rise in calpro is very consistent with IBD activity... but it's great that you noticed that early and are being aggressive about resolving it. And getting down from 300 to 150 is no small feat.... it sounds like he's close to getting back into a clean remission!

Few things that you may want to consider:
- Short course of Uceris/topical steroids. These have less side effects than pred and are much easier to start/stop.
- Increase Entyvio to every 4 weeks or get a double dose (at least temporarily).
- Try some OTC options (my favorite is a short course of "mastic gum" supplement in situations like this, and/or some probiotics as others have mentioned. This is definitely more trial/error as there is less data around to inform these decisions, but they are generally low risk too).
- I personally use the product "Enteragam" from time to time (it's a Rx "medical food" like VSL3, except it is not a probiotic and has an interesting [supposed] mechanism of action). Not sure if it might be capable of tipping the odds in his favor to get over this small hump and possibly help to keep him in a more durable remission once things settle.

Just a question: when he failed Remicade, were levels checked? What dose was he on, and how quickly did things deteriorate?
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Crazydad
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Joined : Sep 2017
Posts : 67
Posted 12/19/2019 7:26 PM (GMT -8)
Hi Rocket Man,

Thanks for your questions and input.

We did not test his calprotectin for a year or so. It was 15 and then in a year 300, then in 2 months 150 (the latest one). Strangely, he did not have any visible symptoms while calprotecin was 300, but had some minor ones when 150.

Our doctor dismissed the idea of the hemorrhoid/fissure and she want us to go on Cortenemas for a week or two. I asked about uceris foam, but this is not a standard drug according to my insurance. Nervous about cortenemas as we tried them 2.5 years ago when tapering of prednisone. At that time it did not work much and my son got a moonface for quite some time. Last time we were far away from remission though.

We are doing the Entyvio today, few days earlier than in 6 weeks.

Never heard about Enteragam. Even more expensive than VSL sad Will do some reading. Thanks.

As for Remicade, it was 3 years ago. First dose early October, last one right before Christmas. The levels we checked, but I do not remember the numbers and dose (pretty high, I bet). At that time the doctor tried to control his UC with just Remicade, nothing else. Worked quite well for few infusions and then stopped. Looking back, I wonder if we were more successful with Remicade if we also attacked UC with some supps/enemas and 5-ASA.

Post Edited (Crazydad) : 12/19/2019 8:33:57 PM (GMT-7)

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RocketMan12
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Posts : 28
Posted 12/19/2019 8:20 PM (GMT -8)
No problem, thanks for the quick reply.

Symptoms can sometimes be less correlated with disease activity than you'd think. Many symptoms are caused by inflammation in the lower part of the colon/rectum, where stool spends most of its time. If that part is under control (sometimes achieved via enemas etc.), but there is still activity higher up, you can get into situations like you describe. If his calpro was normal a year ago, I think you should be aiming for it to do the same going forward, even if it feels like that isn't necessary from a symptoms perspective. We know that deep remissions are much more likely to be durable ones.

Uceris foam might be worth looking into, but I actually meant Uceris tabs (by mouth) earlier. They shouldn't give large steroid side-effects, though it is on the spectrum unfortunately. The good part is that it'll address the entire colon.

If you're open to trying some supplements (and your doc is OK with it), I would recommend that you try at least a few days of mastic gum. I buy the Jarrow brand at the local health food store. Not sure exactly how it works but it has been a small miracle for me and some other IBD friends of mine over the years. It's certainly not a cure-all or a replacement for Rx meds, but if I ever feel like things are starting to slip I've often had great success getting back to normal with a few days of mastic gum (2-4 500mg tabs/day) for a week or so. I do this along with everything else you are probably already doing (enemas, bland diet, maximize 5-ASA, minimize stress, etc.).
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Sara14
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Posts : 7543
Posted 12/19/2019 8:35 PM (GMT -8)
I think the cortenemas are a good plan. They shouldn't cause moon face.

I had a similar experience with Remicade. I was also on 5-Asa and enemas though and it did not matter.
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Crazydad
Regular Member
Joined : Sep 2017
Posts : 67
Posted 12/19/2019 8:47 PM (GMT -8)

RocketMan12 said...
No problem, thanks for the quick reply.

If his calpro was normal a year ago, I think you should be aiming for it to do the same going forward, even if it feels like that isn't necessary from a symptoms perspective. We know that deep remissions are much more likely to be durable ones.

Will try to test his calprotectin every six month no matter what.
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Crazydad
Regular Member
Joined : Sep 2017
Posts : 67
Posted 12/19/2019 8:53 PM (GMT -8)

RocketMan12 said...
Uceris foam might be worth looking into, but I actually meant Uceris tabs (by mouth) earlier. They shouldn't give large steroid side-effects.

Few years ago we tried Uceris when tapering of prednisone. Was not effective enough. Our doctor just recommended us to add Uceris tablets. I am a bit hesitant as do not want to increase steroid exposure, plus I am almost certain his inflammation is not too far of a rectum. Not sure if Uceris will bring any effect needed.

Will study the mastic you mentioned. I am totally open to any supplements/diets/probiotics. Thinking about starting curcumin (have not tried before).
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Crazydad
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Joined : Sep 2017
Posts : 67
Posted 12/19/2019 9:04 PM (GMT -8)

Sara14 said...
I think the cortenemas are a good plan. They shouldn't cause moon face.

I had a similar experience with Remicade. I was also on 5-Asa and enemas though and it did not matter.

Thanks, Sara! Is Humira working well for you?
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RocketMan12
Regular Member
Joined : Jan 2012
Posts : 28
Posted 12/20/2019 12:23 AM (GMT -8)
Uceris is definitely less effective than prednisone for most people. Like a squirt gun as opposed to a fire hose. But for a simmering and small flare it may be enough. I've always felt that any new/additional meds added should be commensurate with the severity of the flare, unless you have reason to believe that things are escalating quickly (which thankfully does not sound like the case). So I think that a time like this would be the right time to use Uceris (as opposed to during a bad flare up and expecting a miracle).

No great way of knowing where the little bit of inflammation is without a scope. Doctor could potentially do a short sigmoidoscopy without sedatives or much prep but that's probably overkill. Does he have a history of pancolitis or are things usually confined to the lower portion of the colon? Over time he may learn to roughly sense where the inflammation is by how it feels and how stools are (and of course based on flare history).

Cort enemas are definitely a good idea. Rowasa supposedly has similar rates of achieving remission (without the steroid exposure) but for many, myself included, the steroid ones seem to hit harder and definitely act faster. If they don't move the needle however you may want to revert to Rowasa and add in the Uceris; that duo is probably going to be more effective than anything short of prednisone or a new biologic. I believe that the overall exposure from a normal dose of uceris is almost equivalent to that of a cort-enema, but I could be wrong. They are both quite mild systemically.

Good idea to keep tabs on calpro going forward if insurance allows, at least for the next year or so. Testing every 4 months or so can help to catch mild flares before any clinical symptoms are even noticed. If it comes back normal it is pretty likely that the next few months will be smooth sailing symptom-wise -- and it's always good confirmation that you're on the right track!

Also worth mentioning that if you do decide to try Enteragam, they have a deal if insurance doesn't cover it for $100 for a box of 60 pouches. Not bad... better than VSL and in my experience it works better as well (though comparing them is like apples/oranges as they are in completely different categories).

Please keep me posted as you try these different approaches. Hopefully it all goes well -- will be waiting for good news!
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Crazydad
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Joined : Sep 2017
Posts : 67
Posted 12/20/2019 4:06 AM (GMT -8)
Started steroid enemas yesterday... we'll see.

Initially my son was diagnosed with pancolitis (Oct 2016), colonoscopy in May 2017 showed inflammation only in the left side. Since then we never had symptoms like pain, diarrhea, dark blood. It looks like it was only left side or just rectum+. This is his first flare since getting in remission. So, experience is limited. But based on his symptoms, it looks like it is still just lower part (3-4 normal bms per day (4-5 according to Bristol chart) and some blood spots on TP once out of 3-4 bms).

$100 for Enteragam is no issue smile need to learn a bit more. For whatever reason our GI never mentioned that and somehow I never encountered it in any resources I used. Maybe a hidden gem.

Did anybody have first hand positive experience with curcumin supplements?

Post Edited (Crazydad) : 12/20/2019 6:33:50 AM (GMT-7)

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Sara14
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Posted 12/20/2019 6:27 AM (GMT -8)

Crazydad said...

Sara14 said...
I think the cortenemas are a good plan. They shouldn't cause moon face.

I had a similar experience with Remicade. I was also on 5-Asa and enemas though and it did not matter.

Thanks, Sara! Is Humira working well for you?

I don't know if it's doing anything yet since I'm still tapering off of prednisone. I went down to 10 mg 3 days ago though and haven't had any symptoms come back yet, so that's a good sign, I think. Thanks for asking. smile I hope the steroid enemas help your son. They helped me a lot the first time I took them.
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Crazydad
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Joined : Sep 2017
Posts : 67
Posted 12/20/2019 12:04 PM (GMT -8)

Sara14 said...


I don't know if it's doing anything yet since I'm still tapering off of prednisone. I went down to 10 mg 3 days ago though and haven't had any symptoms come back yet, so that's a good sign, I think. Thanks for asking. smile I hope the steroid enemas help your son. They helped me a lot the first time I took them.

Will keep my fingers crossed for you!
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Sara14
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Posted 12/20/2019 12:32 PM (GMT -8)
Thank you! smile I will do the same for you and your son.
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TroubledTurds
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Posts : 8717
Posted 12/20/2019 2:29 PM (GMT -8)
"Did anybody have first hand positive experience with curcumin supplements?
Post Edited (Crazydad) : 12/20/2019 6:33:50 AM (GMT-7)"


if you do a search, yule find about 4 gazillion posts about curcumin supplements - but the short answer is ..... yes, some found they helped, and some found them worthless - happy hunting -
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ld2186
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Joined : Aug 2018
Posts : 44
Posted 12/20/2019 4:16 PM (GMT -8)
I take curcumin And Boswellia Serata — both supps were recommended by my doc and I believe that they help. The dose of curcumin that my doc recommended is pretty high — 1.5 grams twice a day.

I really like a brand called “Pure Encapsulations” which you can buy on Amazon.

Hope that helps!

Best,
Lisa
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Crazydad
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Joined : Sep 2017
Posts : 67
Posted 12/20/2019 10:24 PM (GMT -8)
Thank you, Lisa!

ld2186 said...
I take curcumin And Boswellia Serata — both supps were recommended by my doc and I believe that they help. The dose of curcumin that my doc recommended is pretty high — 1.5 grams twice a day.

I really like a brand called “Pure Encapsulations” which you can buy on Amazon.

Hope that helps!

Best,
Lisa

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ld2186
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Joined : Aug 2018
Posts : 44
Posted 12/23/2019 3:37 AM (GMT -8)
Crazydad,
I was in a rush when I responded on Friday and I wanted to post a few other thoughts about curcumin and supps in case they help you and your son. While I credit Humira for keeping me in remission, I do feel strongly that diet and supps help me. A couple of things to keep in mind:

--The quality of the supplement matters (Pure Encapsulations is a good brand)
--You need a need a high dose of curcumin to see results (my doc recommends 3g which works out to 6 pills a day, I've seen other studies that say 2g a day is enough)
--My doc recommended that I get the curcumin without pepper as he thought the pepper would irritate my gut. A common complaint of curcumin with pepper is that it causes more stomach upset.

I do really think it's helping me, however, I'll be honest in that it's an added expense and an added 6 pills a day which can sometimes feel like a burden. For me, it's worth it. I'm already on weekly Humira and watching my diet very carefully. I'm trying to do everything I can to prevent another flare and consider it part of my toolbox.

Let me know if you have other questions and good luck to you and your son!
Best,
Lisa
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Crazydad
Regular Member
Joined : Sep 2017
Posts : 67
Posted 12/23/2019 6:26 AM (GMT -8)

ld2186 said...
While I credit Humira for keeping me in remission, I do feel strongly that diet and supps help me.
I do really think it's helping me, however, I'll be honest in that it's an added expense and an added 6 pills a day which can sometimes feel like a burden. For me, it's worth it. I'm already on weekly Humira and watching my diet very carefully. I'm trying to do everything I can to prevent another flare and consider it part of my toolbox.

Thanks, Lisa!I think we'll give it a try. So far I only found one way to deal with me permanent anxiety - trying to find dietary or non-med ways to help my son. I turned pescatarian and eliminated almost all (I think) processed food from our kitchen. My son joined me and on top of that no sugar for him except honey and natural in fruits. If it is available in organic we do it. Adding a few $$ is not an issue, I am more concerned with mental part of taking a handful of pills every day. But, if it moves the needle, it is worth it.

One more question... We always had some doubts about Entyvio as it took us more than a year to get in remission with multiple other medications, etc. We did not have strong symptoms, but it was difficult to win over the lower part. Now, after 18 months in remission, mild symptoms are back and so far we cannot stop them. I am hesitant to give up on Entyvio as it is may be the safest biologic, but we may face this decision soon. I know Xelianj and Stellara were approved and insurance may approve it for my son (he is still 17), but my question is Humira. Were you on Remicade ever? We failed it less than 3 month on it and I wonder if we have a chance with Humira.
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ld2186
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Joined : Aug 2018
Posts : 44
Posted 12/23/2019 7:17 AM (GMT -8)
Yes, I would agree that the hardest part about it is the "pill burden" as my doc calls it. But I think it's worth it, and certainly worth a try for your son!

I follow a diet that is gluten-free and very low dairy and low sugar. I just got finished baking holiday treats from Danielle Walker's cookbooks (search for "against the grain") I recommend it if you're looking for treats made with honey, maple syrup, etc.

I certainly understand the need the need to calm the anxiety by searching for the next great thing.

Unfortunately I have no experience with Remicade. Originally my doc wanted my on Entyvio but the insurance insisted that I try Humira first. It hasn't all been smooth sailing, but thankfully it's gotten me into remission and I do appreciated the convenience of home injections (takes less than 5 mins, no pain). It took me about 2 months to reach a steady spot where I was able to taper from steroids. I did have to go up to weekly injections to get a good result.
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