Occasional blood in stool has returned, frequent BM and false alarms persist

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Still don't know if DS has Crohn's, but he did have small ulcers and erosions in illeum (found through capsule endoscopy) and the occasional blood in stool disappeared once he was on entocort. He was also on high dose PPIs at same time for significant reflux/GERD damage. He finished entocort by December. Still no blood. Had follow up EGD mid December and esophagus damage had reversed. Just one very small swelling. Biopsies normal. He was slowly weaned off PPIs (which are very difficult to get off in high doses due to acid surges) and was completely off by mid February. Finally acid surges stopped by March-that was challenging. The only symptoms that have persisted throughout steroids and PPIs is frequent bowel movements (well formed) and false alarms-even at least once after he goes to bed.

March 1st had a little bright red blood in stool for first time since before steroids-only once-just a few drops. Normally wouldn't worry about bright red, but long before this journey shade of red varied. Today, just had some dark red in stool and light red another time. Inspected by doctors a number of times for fissure/hemorrhoid and never had. I am wondering if going off PPIs and subsequent acid surges caused some erosion again. We do repeat calprotectin next month and meet with doctor a few weeks later. Will message her if red in stool continues. He also does sometimes have undigested vegetables in stool, but I read that can be normal for things like carrots? Not sure what to ask when we meet, but if he does need an acid blocker I will find out if the non-PPIs might be an option. Really hoping he won't need another colonoscopy for a long time since the prep made him so ill. Current doctor mentioned if he shows signs of Crohns once off steroids we might need to start treatment. She isn't a fan of the milder meds like mesalamine and she only sees results with biologics, but her patients tend to have more severity of symptoms so if it got to that she would want a second opinion.

Thoughts? Questions I should ask? Should I have DS take a photo of any BMs at home with blood or is that TMI? I still post here because former doctor thinks we are never out of woods for Crohn's and the doctor at BCH who did second opinion over summer said he has seen kids with similar presentations develop Crohn's, but not every kid.
 
Definitely TMI. Hope he’ll be better with biologics. Also nutrition like modulen works very well for children. Could worth a try till things normalize.
 
Honestly, I have always been told that gastric bleeding would be very dark - tar-like stools. If it's bright red or dark red, I suspect the blood is coming from somewhere further down - not from his stomach. I would tell your GI and would keep track of bleeding (how many days you see blood, how much blood, whether he has diarrhea etc) since you may need to see a second opinion GI.
In terms of meds for acid reflux, PPIs are generally used, though they could try something like Pepcid if you want to stay away from them.
 
Just got back follow up Calprotectin which was in mid 80s. In December, while still on PPIs was I think 150. Constant trips to bathroom both for complete, healthy bristow BMs and false alarms continue. There is periodically a tiny bit of blood-varying in color. It has been over 2 years of this though some months better than others. (Frequent urination as well-not sure if related to GI issue, but diabetes was ruled out, though that might have been over a year ago). Messaged Dr. through portal and she is happy to see calpro decreased and would expect much higher to call this Crohns...so we are still in the at risk for Crohns, but no Crohns yet category. Will be setting up motility testing started with analrectomamometry or something like that. He's not thrilled, but he would like answers and to not spend so much time in the bathroom. I recall the 2 KUBs last year did show more stool than expected, though not enough stool to be constipated. So, despite getting lots of fiber and exercise and having good size BMs, things may not move optimally. (Sorry if this is TMI).

We have next GI appointment in a few weeks. If anyone has suggestions for questions or thoughts on results, please share. We are currently doing an anti-inflammatory diet which I've always done to an extent, but really trying to avoid processed food even more and we are using tumeric more often (as well as ginger and other herbs that seem promising for helping GI issues). I give him tumeric as a supplement once a week since supplements aren't regulated and I don't want to over do it, and I try to make mild curries 1-2x a week. I figure I'll try to incorporate what I can from the latest literature about Crohns and diet since we don't need Crohn's meds at this point. I understand people do all this and kids still get Crohn's, but he seems to like it and it's good for our health too! I know there are other diets researched for it as well (like SCD), but this one we don't mind following along with him.
 
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Check with the Gi about the ginger and tumeric supplements.
We tried ginger once
Even though these are food sometimes when given as supplements they can cause unwanted Gi side effects
For my kiddo ginger was a disaster as was peppermint
This was under Gi guidance for abdominal cramping etc…made things much much worse .

Frequent urination can be cause by constipation
Also keep in mind rectal inflammation does not show on fecal caloprotectin studies since it doesn’t have much time with the stool

Proctitus can cause frequent urgency issues /false alarms and tiny bits of blood in my kiddo
Might be worth asking
Rectal suppositories and vsl#3 probiotics are things that have helped my kiddo in the past
 
Check with the Gi about the ginger and tumeric supplements.
We tried ginger once
Even though these are food sometimes when given as supplements they can cause unwanted Gi side effects
For my kiddo ginger was a disaster as was peppermint
This was under Gi guidance for abdominal cramping etc…made things much much worse .

Frequent urination can be cause by constipation
Also keep in mind rectal inflammation does not show on fecal caloprotectin studies since it doesn’t have much time with the stool

Proctitus can cause frequent urgency issues /false alarms and tiny bits of blood in my kiddo
Might be worth asking
Rectal suppositories and vsl#3 probiotics are things that have helped my kiddo in the past


Thank you. This is very helpful! I do think proctitus is definitely a possibility and will ask the Dr about that. Unfortunately, our next visit is virtual because I could not get an in person. How is it diagnosed? Is inspection by Dr. enough or so they need to undergo a procedure to see everything?

Yes, peppermint was not helpful for DS either. Our doctor suggested it since they capsules are coated in a way it is only supposed to be released into the small intestine, but I still think it set off a little reflux and after over a month there was not a significant change in frequency. I think he can handle the ginger and tumeric but will track it. We have him keep a journal and I note in it when he starts a certain med or supplement and ends it so I will look at that again. Luckily he doesn't ever get cramping, but I will see if frequency varied. Is it the old VSL or the new one you used? The old one is now Visbiome. We did try out the new VSL some before I knew about the whole split, but probably not for long enough. Our doctor is open to anything supported by research, but the only non-medicine she actually suggested herself was the peppermint capsules.
 
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Visobiome is what we use (which technically is the same as the original vsl#3 -same owner same formula )
We use the prescription double strength version packets
Has to be used at least 30 days before any difference can be seen

The new vsl#3 was put on hold by fda for a while since the statements were no longer true -they changed the formula /owners and no longer had milk in it
We used that as prescription strength but never saw any improvement in rectal symptoms

Only with visobiome (and original vsl#3)
 
Turmeric with black pepper (many capsules combine both) can also cause gastritis. We learned that the hard way!!

Sorry to hear you don't have answers. Manometry testing can be hard on kids, just FYI. I know yours is a teen, but have heard it can be pretty miserable, even for teens. Unfortunately, it's not a test they can sedate for.
 
Turmeric with black pepper (many capsules combine both) can also cause gastritis. We learned that the hard way!!

Sorry to hear you don't have answers. Manometry testing can be hard on kids, just FYI. I know yours is a teen, but have heard it can be pretty miserable, even for teens. Unfortunately, it's not a test they can sedate for.

Yeah, I noticed in the studies I found they had quite a bit of non-compliance and drop outs. He is motivated to get answers so that should help.

Good to know about the tumeric with pepper. DS already has chronic inactive gastritis or something like that according to the last EGD, so that's the last thing we need. Sorry you had to learn the hard way. Thanks for passing on the lessons.
 
So apparently the prep they use for analrectal manography is similar to colonoscopy, just not as intense.I had read it would just be an enema. They know our history (son had projectile vomit with Miralax and dizziness with everything else tried) and the alternatives suggested to me sounded awful including hospitalizing him overnight beforehand and something about an NG tube? They will get back to me regarding whether we could just do an enema prep, but regardless I am not even sure this is the right path based on what I read about why people get this procedure.

I went back to the remote second opinion report we got from BCH and the doctor had mentioned treating the mild non-specific inflammation found during colonoscopy with mesalamine and seeing if that reduces frequency and urgency. He said even with mild inflammation you can be symptomatic like this. I am asking our Dr. about this. The nurse mumbled something about how insurance might not cover. I think there is a dx of terminal ileitis, but it sounds like Crohn's and UC are the only dxes covered usually. I am hoping current doctor can collaborate with Dr from BCH. Wanted to get input from you all about questions I might ask or your child's experience with mesalamine. I would assume with patches of acute inflammation found on colonoscopy and a now borderline calpro it would just be a short course of treatment and we would see if bowel urgency and frequency decreases. I am not daunted by battling my insurance. I've had to do it for our son's early intervention therapies. I just need to do a literature search and make sure I can back up my appeal.
 
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There are lots of preps. There is one called Golytely and that's the one they often hospitalize kids for and use an NG tube for because it's hard to drink. My daughter has used it multiple times because she has severe motility issues. I have no idea how it tastes or if it's possible to drink because she has a feeding tube (both a G tube and a J tube) and so we just used that. It cleaned her out much better than the Dulcolax/Miralax prep.

In terms of mesalamine, we had trouble getting our insurance to cover Pentasa, even with a Crohn's diagnosis. And honestly, I'm not sure it even did anything - we did get it covered for a while, but it didn't seem to make any difference. Our insurance would have covered Balsalazide but that is for UC and our GI wanted my daughter on Pentasa since she had inflammation in her terminal ileum as well as her colon. But really, I'm not sure it did anything at all.
 
Mesalamine is the go to drug for run of the mill, non IBD proctitis. They could also use prednisone or budesonide. They might do it as a suppository. You could also do enemas or rectal foams. There are a few options.

There are other conditions that could explain his symptoms. There are forms of IBS that would cause these symptoms and SIBO could sometimes have the same symptoms. Especially with a FC of 80, they should really be looking at those things but really also looking at the entire small bowel.

O had the anal manometry test. She didn't have to prep for it although come to think of it, it was the day prior to surgery and she had already prepped for the colonoscopy the day prior and was NPO for 4 days so maybe that is why? I wonder if the tests are similar. O found it tolerable and it was over pretty fast. Like less than 15 minutes. I guess they are looking for technical issues rather than organic issues. Hmm.
 
There are lots of preps. There is one called Golytely and that's the one they often hospitalize kids for and use an NG tube for because it's hard to drink. My daughter has used it multiple times because she has severe motility issues. I have no idea how it tastes or if it's possible to drink because she has a feeding tube (both a G tube and a J tube) and so we just used that. It cleaned her out much better than the Dulcolax/Miralax prep.

In terms of mesalamine, we had trouble getting our insurance to cover Pentasa, even with a Crohn's diagnosis. And honestly, I'm not sure it even did anything - we did get it covered for a while, but it didn't seem to make any difference. Our insurance would have covered Balsalazide but that is for UC and our GI wanted my daughter on Pentasa since she had inflammation in her terminal ileum as well as her colon. But really, I'm not sure it did anything at all.

Yes, it was Golytely they suggested with an NG tube! If I had read enough to convince me we must explore motility issues before trying other things, I would figure out how we can make this work knowing he may react poorly to prep. So far the remote second opinion was on the mark for 2 things where 2 different Drs. here disagreed with eachother-BCH Dr felt strongly our son needed the CE (we did it and found the small ulcers and erosions) and he said it was fine to decrease PPI to 60mg-one Dr. insisted we could not go below 80mg ever, the other said we could go to 40mg. BCH Dr. has worked with enough cases that looked like our son, that in his experience the minimum was 60mg or we had to try another PPI. The damage healed, so he was correct! I guess I want to give his idea a try before we go the motility route. He had not even mentioned motility in his report. I am sad to read that even with a Crohn's dx insurance didn't want to cover Pentasa/mesalamine. If that is the only thing holding our doctor back, I will find out how long a course she thinks he needs and what it would cost. If she thinks it's worth a shot too and we can afford it, I might just pay out of pocket and keep appealing our insurance. We also set aside more for flex spending this year anticipating for medical costs.
 
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Mesalamine is the go to drug for run of the mill, non IBD proctitis. They could also use prednisone or budesonide. They might do it as a suppository. You could also do enemas or rectal foams. There are a few options.

There are other conditions that could explain his symptoms. There are forms of IBS that would cause these symptoms and SIBO could sometimes have the same symptoms. Especially with a FC of 80, they should really be looking at those things but really also looking at the entire small bowel.

O had the anal manometry test. She didn't have to prep for it although come to think of it, it was the day prior to surgery and she had already prepped for the colonoscopy the day prior and was NPO for 4 days so maybe that is why? I wonder if the tests are similar. O found it tolerable and it was over pretty fast. Like less than 15 minutes. I guess they are looking for technical issues rather than organic issues. Hmm.

He was on a course of entocort pills for the ulcers in small intestine and that did stop bleeding. I assume the other forms of entocort address inflammation in the large intestine? His inflammation is mild in the colon, but regardless we want to treat it to see if it helps the symptoms. I'm thinking maybe the suppository or foam version is what they would use?

I asked about just doing an enema prep for the anal manometry since I read that is what adults do, but they don't allow it. I do think our son could tolerate the actual test, but I am thinking we may want to delay trying it until we see what else works, so I don't put him through that prep for nothing.

Yes, we should explore SIBO. Thanks for bringing it up. The current Dr. here agreed with me we should explore that when I asked last summer, but by that time our son was already on PPIs and you are not supposed to test for it while on PPIs. His former doctor promised me he would do it during upper endoscopy, but he forgot! At the current hospital they don't offer the test during upper endoscopy. The other issue, was the test they order for at home uses lactulose which makes our son dizzy. I read there is one with glucose and it has fewer false positives. I am going to ask if they can order that one instead and also if they get at different parts of the small intestine. They won't do it in office so I will be the one having him do it. The Dr. had mentioned just trying a round of antibiotics if the testing might make him ill. I had been reading so much about the gut microbiome that I declined that right away. Now I may be more open to it, especially if we first try mesalamine and that doesn't work, because these symptoms have gone on so long and there is always a chance the SIBO test would give us a false positive where we put him on antibiotics without him needing it. Plus PPIs can increase SIBO so it does seem possible it's an issue.
 
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Pentasa is a maintenance med
Meaning if it works you take it for years .
Most folks it works within 30 days
Or it does nothing
Using it for crohns per most Gi is equivalent to giving aspirin for a brain tumor not going to help too much but not going to hurt either which is probably why bch recommended it

it’s a aspirin derivative which treats the surface layer of the intestine
This is great for UC since it only affects the top layer

crohns affects the full thickness so Pentasa leaves the lower layers to simmer with inflammation

this is why testing is so important
Theses are not treatments for a week or two
But typically a lifetime

ask bch for options on prep and testing
They have seen it all

OR chop
 
Pentasa is a maintenance med
Meaning if it works you take it for years .
Most folks it works within 30 days
Or it does nothing
Using it for crohns per most Gi is equivalent to giving aspirin for a brain tumor not going to help too much but not going to hurt either which is probably why bch recommended it

it’s a aspirin derivative which treats the surface layer of the intestine
This is great for UC since it only affects the top layer

crohns affects the full thickness so Pentasa leaves the lower layers to simmer with inflammation

this is why testing is so important
Theses are not treatments for a week or two
But typically a lifetime

ask bch for options on prep and testing
They have seen it all

OR chop

I did not know any of this about mesalamine. Thanks. I will definitely ask our doctor about whether mesalamine is ever used short term. I know she isn't a fan of mesalamine for actual Crohn's. She said she only sees real results with biologics. Unfortunately, the remote second opinion with BCH only allows 8 questions which have already been answered. If I have more questions I can start the process again, but it's expensive and it goes through a company and red tape. I can't just call and ask for more info. This particular doctor wasn't even accepting new patients at the time. I don't think I can just call CHOP when we don't have a physician there. Also the doctor from BCH never recommended motility testing. It's our current doctor who suggested it. She also suggested throwing antibiotics at it as an option if the lactulose is an issue for SIBO testing. I got the sense the doctor from BCH sees this sort of presentation much more often and I think he just suggested a trial of the med, but I didn't know if it works, you need to stay on it.
 
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MLP is right about mesalamine for IBD but for run of the mill proctitis it is used episodically and shorter term and is more successfully…assuming it is not IBD.
 
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For CHOP, you could get a second opinion (well, third opinion there). I don't know if they do remote opinions though - @my little penguin do you know?

I want to be clear - our insurance would not cover Pentasa but did cover Balsalazide and Sulfasalazine. They just release in different parts of the bowel. So your insurance may cover one and not the other. We did try appealing once but insurance denied it and her GI had her on Remicade and MTX by that point, so we didn't go further than that.

In terms of steroids, there is Uceris, which is Budesonide, but releases in the colon instead of the TI as Entocort does.

My daughter also has had success using proctofoam. She said it was much easier to use than suppositories - she's also used hydrocortisone suppositories for fissures and while they worked very well, because of the fissures, it hurt to insert them. We've never used any sort of mesalamine enemas or suppositories though.

Yes, it was Golytely they suggested with an NG tube! If I had read enough to convince me we must explore motility issues before trying other things, I would figure out how we can make this work knowing he may react poorly to prep.
If you do decide to do the motility testing, given his reaction to past preps, being inpatient for prep may not be a bad idea. They can give fluids and IV Zofran if he starts vomiting. The NG tube is very thin - it's an infant sized tube (6Fr usually) and it's usually inserted while drinking water, so you don't gag and it goes right down. It's really not as bad as it sounds.
 
For CHOP, you could get a second opinion (well, third opinion there). I don't know if they do remote opinions though - @my little penguin do you know?

I want to be clear - our insurance would not cover Pentasa but did cover Balsalazide and Sulfasalazine. They just release in different parts of the bowel. So your insurance may cover one and not the other. We did try appealing once but insurance denied it and her GI had her on Remicade and MTX by that point, so we didn't go further than that.

In terms of steroids, there is Uceris, which is Budesonide, but releases in the colon instead of the TI as Entocort does.

My daughter also has had success using proctofoam. She said it was much easier to use than suppositories - she's also used hydrocortisone suppositories for fissures and while they worked very well, because of the fissures, it hurt to insert them. We've never used any sort of mesalamine enemas or suppositories though.


If you do decide to do the motility testing, given his reaction to past preps, being inpatient for prep may not be a bad idea. They can give fluids and IV Zofran if he starts vomiting. The NG tube is very thin - it's an infant sized tube (6Fr usually) and it's usually inserted while drinking water, so you don't gag and it goes right down. It's really not as bad as it sounds.

Thanks, this is all very helpful. I will discuss with DS's doctor when we meet with her in mid May. I am definitely going to see if the proctofoam is an option. Zofran helped prevent throwing up the stuff he had to drink for MRE, but I need to be convinced he needs the motility testing to move forward. I will see what the Dr. here says. I didn't get a sense she strongly felt there was a motility issue, it was just something she mentioned as an option to explore, and I was all for trying anything thinking the prep would be simple. A lot of people from the local Crohn's group here go to CHOP for in-person second opinions, but those are complex cases where there is a definite case of Crohn's. The virtual/remote second opinions program we used takes a long time due to red tape. We may go that route again if we try a few things already suggested and still don't see improvement with the symptoms that remain, but I think our first step is discussing things further with our doctor to see if she thinks it's worthwhile to explore SIBO, meds to target large intestine. You all have given me great ideas for questions to ask and things to research before the follow-up.
 
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