L update--trialling off flagyl.

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GirlwiththeCurl

GirlwiththeCurl

Joined
Jun 26, 2015
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So after all my concern that L hasn't really ever been totally well, despite clean bloodwork, things seemed to settle down and I sternly told myself that I was going to stop blowing things out of proportion. At her last appointment the doc was very pleased with her weight and growth. I was originally told we would trial her off azathioprine after two years of normal liver labs, but this time (it's been two years now) doc said, no, aza is keeping her ibd under control so we're not stopping. But she said we would trial her off flagyl which I was happy about.

But...it's been three weeks and L is now having significant pain before every bowel movement, but it's brief. She usually has a bm when she gets up and either during dinner or right before bed--sometimes after she is in bed, but not in the middle of the night. She will double over groaning with stomach pain, deny needing the bathroom, then run for it. It usually takes her 20-30 minutes in the bathroom before she feels better. Her stool is getting mushier and really stinks. Do you guys think this could be 1) SIBO now that she's not on flagyl, 2) IBS, since the pain is usually relieved after using the bathroom, 3) the start of a flare? I'm going to leave a message with the nurse on Monday.

In the meantime, do you think probiotics might help? Probably I should have been giving them to her already.
 
How long was she on flaygl?
Max is 14 days
Sounds like a flare
When was her last scopes ?
Within the last year
If not scopes would be needed
Stool bloodwork first then scopes of infection is ruled out
 
my little penguin said:
How long was she on flaygl?
Max is 14 days
Sounds like a flare
When was her last scopes ?
Within the last year
If not scopes would be needed
Stool bloodwork first then scopes of infection is ruled out
Click to expand...

L was on flagyl as a maintenance med. She was on it about 1 1/2 years. I know there are serious adverse affects that can occur (as with most meds), but thankfully we never saw them. I was *very* excited to have her off, though.
 
Fewest and monitoring are different stories
Our GI will not go more than 2 years without scoping
Three years is not the standard of care
It’s there for a reason
Damage can’t be seen on the outside
Higher cancer risk
After 8 years yearly scopes are needed simple to catch cancer changes early
Inflammation left alone changes cells
And causes damage
 
my little penguin said:
Fewest and monitoring are different stories
Our GI will not go more than 2 years without scoping
Three years is not the standard of care
It’s there for a reason
Damage can’t be seen on the outside
Higher cancer risk
After 8 years yearly scopes are needed simple to catch cancer changes early
Inflammation left alone changes cells
And causes damage
Click to expand...

Yes, this is actually one reason I've worried about L. Doc makes decisions based on bloodwork, but L's inflammation markers have never been elevated, even when she was diagnosed and had multiple inflammatory diseases active. But I know some docs lean heavily away from invasive procedures unless there is clear indication of necessity. :/ I mean, in the one hand I don't want to put L through a bunch of medical procedures, but on this other hand, I don't want the docs to miss anything that might be creeping up.
 
Scoping year few months or every year even is very different from waiting over three years to do surveillance

It seems like your child’s GI respects her liver disease
And that’s her focus
Woth ibd as a minor thought or concern

Can you get a second opinion at children’s in Denver ?
Even if it’s a scope they can tell you kids need minimum scope inaging every x number of years
So it not just”the mom” thing

Go with you gut
Having a second GI back you up
Helps a lot

We are taking Ds to a second opinion for arthritis
Because like you concerns are there but as a mom you don’t want to push if it’s not needed
 
L is seen at Children's Colorado (the major regional center). I do wonder about her doc. She is a GI and sees two populations at the hospital, liver patients and GI patients. I think that's why L got assigned to her. But she's so very low-key and hands off about it all, I usually feel like I'm overly concerned.
 
Your just asking for standard of care
Which is a scope to Monitor
Could you get a fecsl cal done ?
Not invavasive
But might help you push for scopes
 
Yes - I'd ask for fecal cal and definitely push for a scope. Three years is ok for a child in stable remission, but once she's flaring, then you need a scope.

Most docs will go 2-3 years only if the child is in remission. But it does seem like each doc has a different practice.

I'm also kind of surprised about Flagyl being a maintenance med - I have never heard of that. It can cause neuropathy or something like that if used long-term (my little penguin will correct me if I'm wrong ;) ). We were only allowed to use it for 2-3 weeks.

Generally, if Aza isn't enough, then your child is put on a biologic. It might be her liver disease that requires different treatment but from an IBD perspective, you don't stop maintenance meds unless they are failing and Flagyl is not really used as one (as far I know anyway). It sounds like that's what your GI was saying when you asked to stop Azathioprine - you can't really, without her IBD flaring.

I would definitely ask for the Fecal calprotectin since it is very accurate for almost everyone. If it's going up, then you have evidence for scopes.

For what it's worth, my daughter has gone 2 years without scopes - her GI said she will be scoping her this summer. We have never gone more than 2 years so far.
 
I've read a couple of articles that talk about flagyl as a maintenance drug, but agree that the positive effects are modest. L had to be on the azathioprine for her autoimmune hepatitis. I thought maybe she would come off that and find another drug for the ibd, particularly with the lymphoma risk associated with azathioprine. We initially had a hard time getting L off prednisone, even after she had been on aza for sixth months, so we added flagyl and that seemed to keep the ibd under control with the azathioprine that she had to have anyway for the AIH. So it's all kind of a tangled web.
 
I see - you are right about the lymphoma risk. Most GIs will not use Imuran for IBD anymore unless it is absolutely necessary.

Her GI may think it is still needed for her autoimmune hepatitis. If not, then I'd ask about other options for the IBD - Methotrexate is used in place of Imuran now, but that's hard on the liver so it might not be allowed for your daughter.

But biologics should be an option - Remicade or Humira for example. I'd ask about those and say you are worried about the risk with Azathioprine.

It may be time to get a second opinion...you'd have to travel but generally they are worth it.
 
The doctor's reply is...restart flagyl. Call if the diarrhea doesn't go away. :( I talked to one of the other nurses this time and she seemed totally confused about the length of time L has been on flagyl. "This is usually only a 14 day course..."
 
I agree...I think you need a second set of eyes looking at this situation. There are some hospitals which will do a record review, so you don't have to travel. Otherwise, if you're willing to travel, then you have a lot of options.

I don't know where is best for autoimmune hepatitis, but I do know that for IBD, Cincinnati Children's, Boston Children's and CHOP (in Philadelphia) are considered the best. On the west coast, I think Seattle Children's and Stanford have good pediatric IBD programs.

I'm to tag crohnsinct, because she may know of other good pediatric IBD programs closer to you.
 
Hey there!

If you could swing the trip to Stanford, I would definitely try to get in there. They have the countries top ranked pediatric liver center and their IBD center is great. No matter what your diagnosis are all departments are wonderful about working with each other.

You could also try UCSF as they get a lot of accolades. I only have experience with their IBD center. We are at Lucille Packard in Stanford now so I will let you fill in the blanks. But UCSF is highly regarded in their field and the GI there is well known throughout the country as being a leader.

Good luck! I think you might remember my mom had AIH and it is a tough one.
 
Hey, all. I wanted to let you know what L's experiences have been since restarting flagyl. First, when she started the flagyl again, the abdominal pain disappeared almost immediately, like within two days. The diarrhea was gone within a week. I thought...well, this is what we're aiming for, right? Symptoms resolved really fast.

L seemed fine for most of May, but started having some minor abdominal pain again. She started having nausea that would wake her up at night, but she never threw up. She's had chest and throat pain which she says feels like it's choking her, but it's really brief episodes, maybe 10-60 seconds, and only once or twice a week. No diarrhea, though. I called the nurse last week and she said it sounded like reflux and to take her to her ped (scheduled tomorrow). But this morning L woke with intense stomach cramps and when I checked her stool there was a significant amount of blood in it (not like, "We're headed to the ER right now" amounts, but enough that I was kind of shocked). I pointed it out to L, who said, "Oh, I've seen blood in my poop before," like it's a normal occurrence for her. (We had another little talk about what is normal and what she should be concerned about and tell someone about.) So now I've got another call in to the nurse. I know you all have (repeatedly) suggested getting another opinion, and I think how this episode gets dealt with may be the deciding factor.

I think it's hard for the doctor to take my concerns seriously when L is pretty high energy, happy, and doesn't appear sick whenever they see her. Well, that and her bloodwork is always good. Anyway, we'll see what happens.
 
Inside doesn’t not need to reflect the outside
Your GI should know your child
Please get a second opinion asap
They can never hurt and any good GI welcomes a second set of eyes and should not be upset
Our GI was thrilled when we got a second opinion
It confirmed what he thought to be true

Flagyl is NOT a long term option
Scopes and imaging are the standard of care every 2 years max for kids
 
The main trouble is that I will have to assert myself to both my husband (who vacillates between thinking L is in serious trouble and that she should just buck up already) and the doctor (who has been talking down to me in the kindest way since L was diagnosed). There are lots of other reasons, but that is honestly the main one.

I seem to have the backbone of a jellyfish.

If L were in acute trouble it would be easy to show the doctor that there is a problem. Since it's just small things that don't add up it's difficult for me to explain what I am seeing that isn't right.
 
Also, there are a few people in the PSC/IBD community who are on Flagyl as a maintenance med, but not many. It has seemed to be fairly effective as an adjunct to the azathioprine for L, at least until recently.
 
Her GI seems more concerned and addresses her pbc
But not the standard of care for Crohns
You need to see a doc who addresses all of L issues
Period
You are her advocate
Type your concerns and see a second opinion
Since your part history with GI is to not “hear” your concerns and downplay them
Which would be fine if L was getting the normal standard of care for Crohns
I assume she is for pbc
But she does have another disease which can reak havoc all on its own if it’s ignored
Which seems to be the case

A second opinion will give you a voice
Go to another hospital
It’s the only way to get a true second opinion
The local docs will never contradict each other ever
 
Try EEN! There are a number of things about your daughter's case that are similar to my son's, and EEN has been highly effective for him. I made a thread recently about it.
 
Pangolin
Een is NOT. A long term solution
It is only used for 8-9 weeks for a reason
It is psychologically extremely difficult for a growing child
Ds has done een multiple times for 8/9 weeks at a time

Before you put a child on een
Try it as a adult
No solid food at all
At work
At parties
At home
Watch others eat
Smell food cooking

The body is designed to eat and chew
The longer you go without food the harder it is

Much better than steriods
But not a long term option

Drugs are needed in most cases

Ds drinks 50% elemental formula as a supplement
To help keep
Things calm in addition to meds plus solid foods
Been doing this for almost 8 years now (started at age 7 )
So I understand when we first started I thought een would be it
Boy was I wrong

It has its place but short term only
 
Penguin, it may not be an option for everyone long term, but starting out with 8-12 weeks of it to see how it goes is a great strategy. It's gone very smoothly for us (the kid has never even liked food that much for that matter), and right now I consider it a long-term option for my son.
 
Pangolin, EEN is a great strategy to induce remission. But it is not generally used longer than that. It is psychologically very tough on kids. It may work fine on younger kids and some younger kids are able to do EEN for months or even years.

But eventually, as they grow up, they will want to fit in and "be normal." It is VERY tough to be without food completely. Everything is food centric. While your child may be fine with it now, as you reach the teen years, it's going to get much more difficult.

There are some hospitals that are testing diets. Boston Children's and CHOP come to mind. We go to one of the two and there are certain requirements to be in the diet studies. One - your child must have mild to moderate disease. It is not an option for severe disease.

And two, your child has to be monitored very carefully with FCP and blood work and scopes.

Three - if it doesn't work within 6 weeks, you have to move on.

These diet studies are not EEN usually. They may start out with a period of EEN but that does not last more than 8 weeks usually. Then they do a "semi vegetarian diet," which means only chicken and fish and no red meat. No processed food etc.

crohnsinct will know more about the diet studies. There are also studies where they will cycle EEN and food. But there are no long term EEN studies, as far as I know.

We saw a presentation at CHOP about these diet studies. One of the things the doctor and dietician who were presenting said was that not all children can tolerate restrictive diets. They said many children get depressed and stop eating and lose weight. They specifically said that they do not like the SCD because most kids lose weight because it's so restrictive. They thought the IBD AID diet was better.

So you do have to think about the psychological aspect.

Many kids do continue with supplemental EN for the long-term though. Until quite recently, my daughter got about 50% of her calories from formula. She was unable to keep her weight up without the tube feeds.

GirlwiththeCurl, I am sorry for hijacking your thread! I would agree on the second opinion. Flagyl can cause side effects in the long-term but even if you take that out of the equation because she needs it for her PSC, her IBD clearly is not controlled on Imuran. She probably needs a biologic.

I do understand that your GI is focusing on the PSC. But IBD can be very serious if left untreated. So a second opinion is important.

As for your husband, why don't you show him studies of what uncontrolled IBD does? She has Crohn's, right? Not UC?

Long-term inflammation can cause strictures. Strictures can cause obstructions which can lead to perforations and even sepsis. She is also at risk for abscesses and fistulae. If the IBD remains uncontrolled, it could eventually also impact her growth and development.

So it is REALLY important to treat the IBD. We've had more than one member whose asymptomatic child had to have surgery because of damage to their intestine. You don't want that for L!
 
Girlwithacurl: has she been tested for SIBO? SIBO can mimic Crohn's and IBS with pain being an important symptom so it is very difficult to differentiate between the two and Flagyl is used to treat SIBO. So I would wonder if maybe that could be the problem? But SIBO does not cause blood in the stool. How much blood are we talking? Could it be from a fissure or hemmie? Is you GI aware of the latest developments?

A second opinion is not a bad idea. I would also want a fecal calprotectin test run. Often kids have perfectly norma blood labs and the inflammation shows in fcp. With an elevated level the GI may pay closer attention.

:ghug: It is hard trying to mage the two diseases. I also still think you need a pediatric AIH specialist and a pediatric IBD specialist. True they are both GI's but not all GI's are specialist in both areas.
 
Pangolin--L's been diagnosed for three years now. We never even considered EEN because L also has autoimmune hepatitis and primary sclerosing cholangitis. We went straight to prednisone to knock the AIH into remission, and that also did a great job on her IBD. At this point, we could possibly consider it (if I can even get her doctor to recognize there's a problem), but the main issue is finding a maintenance med that is going to be effective since azathioprine doesn't appear to be cutting it. I think the doc wants to hang on to the aza because that is also a drug that maintains remission with AIH (though I understand that once AIH is in remission, a certain number of people can totally come off meds and do okay).

Maya--We don't know if L has Crohn's or UC. People with PSC typically have IBD and it's typically UC--but there are plenty of PSCers with Crohns, too. The original biopsies were inconclusive about type and primarily showed high eosinophils (I think her actual written diagnosis might even be eosinophilic colitis, but I'm not totally sure there--her doc said she was absolutely confident L had early onset IBD given it's strong association with PSC and the ulceration in her colon). And since we knew we were going to treat her AIH with meds that also generally treat either type of IBD, it didn't matter at the time.

Crohnsinct--I wondered if L might have SIBO when we stopped the flagyl and she immediately started with pain and diarrhea, because logically that seemed like a great time for bacteria to get out of control. But I don't think what she's having now is that. She's having a lot a nausea, some abdominal pain, some throat/chest pain, lots of joint pain and I've seen blood in her stool twice now. There was quite a lot of visible blood, but not so much that I wanted to take her to the ER or doctor that second. It was interspersed with her stool so I'm pretty sure it wasn't a fissure. I don't know how blood from hemorrhoids presents. I called the nurse and left a message, so hopefully she'll talk to the doc and I'll hear something back today.

L's got an appointment with her Ped today and I'm going to ask if they think it's okay for us to request an appointment with an IBD specialist at Children's or if we should look elsewhere and whom else they might recommend. They might not be able to say, though, as our office is associated with Children's.
 
Our ped office is associated with out kiddie hospital
And there is no way they would recommend us going else where (in fact they are not permitted too neither are the specialists)

The only way to get a true second opinion
Is to go else somewhere else
Then if they agree she needs xyz
Then depending on how your current GI responds you can decide if your child needs two GI specialists. ;)

Some just need a nudge from outside
 
Ask the ped to order a fecal calprotectin test. This way you can get the sample in and hopefully have results by the time you get in with GI or second opinion. If elevated the current GI will be forced to take action.

I get the GI wanting to hold on to aza for the AIH but she could be on aza for AIH and an anti tif for her IBD. In fact, most kids are on dual therapy to start to prevent antibody formation.

FWIW - my mom who has/had AIH went through a weird bout of very bad joint pain. She went to a doctor (not sure if it was GI or primary). They prescribed some antibiotic. She got better and her AIH went into remission and she has stayed in remission and off AIH for years now.

Good Luck figuring out what is going on. I wish you had more help from a. physician.
 
The ped did order a fecal calprotectin (after asking what it was). Also she ordered a bunch of stool tests to rule out infectious stuff (again) and gave me the name of another ped GI not associated with Children's.

I haven't heard back from L's GI nurse yet, though.
 
Glad they are checking everything, especially FCP. I also wanted to add that if her joint pain continues, another avenue to get her on a biologic would be to see a rheumatologist. The rheumatologist can work with the GI to come with a plan for the joint pain and the IBD.

Joint pain with IBD can be arthralgia (so just joint pain without inflammation). Or it can be arthritis (caused by inflammation).

IBD associated arthritis/spondyloarthritis has several forms. Sometimes, when the Crohn's is treated (or UC), the arthritis goes away. That is the most common for of arthritis associated with IBD. This usually involves peripheral joints (joints other than the spine) and tends to affect large joints (knees, ankles, wrists), though the pain can migrate from one joint to another.

But other times, especially if the SI joints or spine are involved, the arthritis will require separate treatment. Generally, biologics would be used in someone who has both IBD and spondyloarthritis.

There are also certain types of peripheral arthritis, usually the ones that affect the small joints of the hands and feet (fingers and toes), that flare independently of the IBD.

CCFA has a good explanation about the types of arthritis and IBD: http://www.crohnscolitisfoundation.org/assets/pdfs/emr/arthritiscomplications.pdf

My daughter's arthritis and her IBD flare at different times. She has Ankylosing Spondylitis, so spinal involvement. They are treated separately. For example, for a while she was on Imuran (aza) for the IBD and a biologic for the arthritis.

We have considered seeing two GI specialists. My daughter has Gastroparesis and IBD. We saw a GI when her Gastroparesis was very bad and she was trying to avoid an NJ tube. We considering switching at that point because her GI would not consider any other options - said an NJ tube was the only option and M hated it.

The new GI we saw was a big name in IBD research and was really great. But she didn't treat Gastroparesis or other motility issues. So she referred us to someone else. The motility specialist did not have appointments for months, so in the end we just went back to our old GI.

But all I'm saying is that seeing two GIs does happen occasionally. My daughter did not want to but she has about 16 other specialists and was just sick of doctors.

But if your daughter mostly just sees Gastroenterology for both her IBD and liver issues, then having two GIs who are experts in their areas might help.
 
Can you guys remind me what the turn around time for a fecal cal test is?

As I expected, all her blood tests are lovely and normal. Infectious causes are ruled out. The hemoccult was negative, too, which kind of surprised me.

If her fcal comes back normal I'm going to be tearing my hair.
 
Get a second opinion
Just go
Kids present normal
But still have stuff going on
Our GI looks at the whole kid not just the labs

Go get um mama bear
It’s notin your head
 
My guess is that the Fecal Cal will be elevated, since you have seen blood. Have you taken pictures of her bloody stool? If the doctor actually sees it, it might reinforce the point that your child needs either med change or adjustment.

My kiddo had a fecal cal done in January. It was 75, which is "borderline" according to Labcorp (below 50 is normal, 50-120 is borderline). Her symptoms were belly pain and diarrhea - no blood. My daughter, who is 21 now, insisted it was not Crohn's.

Eventually we figured out that at least some of the diarrhea (most of it, I think) was caused by a medication (so in that sense, my daughter was right that it wasn't all Crohn's).

But anyway, when we did scopes this summer, while her colon looked great, her TI showed small healing ulcers. Nothing terrible and her GI was quite pleased with how everything looked, but clearly she did have active Crohn's this winter/spring even though her FCP was not what I would consider high at all.

However, we know that when she is doing really well, her FCP can go down to the 20s, so I guess if you look at her trend, 75 was not exactly normal for her (her highest has been 480 or 490).

Anyway, my point is that while FCP is very reliable, you have to know your child's normal and watch the trend.

Also, we have done MANY second opinions with rheumatologists because my daughter's arthritis is severe. They have always been helpful and our rheumatologists have never minded and have even encouraged a second opinion.
 
Yep! About a week for fcp here to...no matter what lab you use.

If fcp comes back normal maybe insist on a SIBO test? SIBO is a bear to get rid of. Has she been tested for celiac? That could be another cause of pain and diarrhea etc.

Occult blood coming back clear is surprising. How many samples did t hey take? In order to rule out blood in the stool they usually ask you to provide a swipe from there separate bowel movements.
 
Huh...did not expect that. Where is the blood coming from them? I would definitely consider a second opinion...
 
Wow! I wasn't expecting such a low fop either. How is she feeling? What are her BM's like? Frequency? Consistency?

I am still wondering about SIBO but she has been back on flagyl for a while now...although when they treated O for SIBO they used both Flagyl and Cipro. It could be IBS anti is possible but not probable that she could have IBD inflammation with a low fcp but honestly in all the studies I have seen t is very, very rare to have inflammation that would produce symptoms and such a low fcp.

You would be surprised at how much blood an internal hemmie could produce so it could be that also. Or even a fissure can produce a good amount but I would think there would be more pain with that.

Either way, if she is still feeling poorly and has disordered bowel movements you are well within your right to ask the GI to figure this thing out. Fine if they want to call it IBS or SIBO or whatever but then they have to treat the it, diet changes, meds etc. Although since it has been awhile since scopes (and we have a GI who relies on fcp heavily as he is not a fan of frequent scopes) were done, I might like another scope to make sure the insides match up with the fcp before assuming IBS...also a breath test for SIBO is easy.

OH! One other thought...gastroparesis (motility issues). Quite a few kids on here have been diagnosed with it and it can cause pain, nausea and bowel changes. There is a test for it also so it is relatively easy to rule it in or out.
 
My kiddo has Gastroparesis. It causes nausea, abdominal pain, early satiety (my daughter would take a few bites of her meal and say she was full or nauseous), weight loss etc. It can even cause constipation because often when you have delayed gastric emptying, that means you have poor motility elsewhere too.

But I have never heard of it causing blood in the stool.

I would also think that will blood in her stools you need a scope. It could be an internal hemorrhoid. A fissure would hurt - my daughter said it was like pooping glass. And if she'll let you look at her bottom, you may see it. My daughter had a fissure once which bled quite a bit - more blood than we've ever seen from higher up in her GI tract (she is not really a bleeder). Her fissure was dripping blood and there was blood in the toilet bowel, on the TP and on her stool.

Suppositories were very painful to insert but took care of it.

I don't know much about PSC or autoimmune hepatitis. Is she on any meds that could cause bleeding in her stool?

At this point, a second opinion might be the way to go...especially since this is an odd presentation.

And do keep in mind that while FC is generally very reliable, there are outliers. Also, it can change quite a bit. I think crohnsinct can talk about that - her daughter's FC has been bouncing around - been up to 2500 and down to 16 within 4 weeks and then back up if I am remembering correctly.

crohnsinct...want to weigh in (again ;) )?

Also remind me, has CDiff been ruled out?
 
Thanks, Maya and CIC. I haven't seen blood since last Monday. L is mostly okay, but she has episodes where she feels nauseous or has lower abdominal pain. It's often at bedtime or early in the night or first thing in the morning. She typically seems fine during the day. She's lost a little weight (just over a pound in the last three weeks) and she's not eating well (e.g., I offered the kids ice cream cones and she got upset when I put too much ice cream in--probably less than two tablespoons. She is very picky anyway but this seems unusual).

I'm dreading talking to the nurse because I already feel like she thinks I'm nuts, and now we have more normal test results.

But I have been wondering about whether this is just functional and the blood was an aberration (from an internal hemorrhoid maybe? I'm pretty confident she doesn't have a fissure). I'm wondering about slow motility. I'm wondering about food allergies.

L's pediatrician did warn me that getting *all* her medical records for a second opinion might be time consuming and difficult and we should start that process soon if we wanted one.
 
For sure get started early. But in order to do that you need to know where your second opinion will be and what records they want. I had one place ask for actually biopsy slides...what a nightmare! Usually, if you have them send the records directly to the second opinion hospital there isn't a charge but if they release them to you there will be and with multiple dx's and a long history it could get costly.

As for fcp...it could vary pretty wildly and my daughter has gone from 1000 to 2500 in 4 weeks and then down to under 100 another 4 weeks later. BUT she was on steroids...hmm...this makes me wonder if the Flagyl was actually treating something? I wonder what the fcp would have been if you tested it before she started Flagyl again.

Constipation could lead to a hemmie and then blood...hmm. Now I am wondering if the flagyl treated inflammation and this is why the bleeding stopped.

Ugh..so much wondering. I really wish the GI took the fcp before adding the Flagyl so we had more to go on.

Have you ever asked the GI why they are so comfortable with long term Flagyl use and told then what concerns you about it?

I get what you are saying about looking like a crazy mom. I have felt the same way the past three years with O. But she isn't acting normal so something is up. You aren't necessarily blaming IBD just yet but something must be making her nauseous and giving her pain, that just isn't normal. Even if they test for everything and come up with anxiety, it still needs to be treated. No kid should be left to feel nauseous and in pain.

You could go at this from another angle. You could try to get her in with a registered dietician well versed in GI issues. They are well aware of IBS, SIBO, IBD and gastroparesis. They may have an educated opinion about what is going on and try various things and if they approach the GI/ped etc they will have more clout. I have actually done something similar when O's hip was hurting. Orthopedist kept saying over use injury but we knew something wasn't right. Went for physical therapy and they felt there was a mechanical issue that needed surgery and sent this opinion to orthopedist. This got her an MRI and low and behold the kid needed hip surgery to correct a problem with how her hip was formed.
 
Hi, all! I just wanted to say that L is going to back to see the GI at the end of Aug when I will hopefully have a productive discussion about meds, monitoring L's disease, and getting another opinion from a second doc (our ped encouraged laying it out to the current doc and then going for it).

In the meantime, I've been keeping a diary of L's abdominal pain and bowel movements. She usually has a bm once or twice a day, usually first thing in the morning, usually Bristol 6, which is accompanied by 15-20 minutes of abdominal pain (before and after, not just before). Then she feels and acts fine the rest of the day. I haven't seen any blood for a while. I'm really confused how she could have had as much blood in her stool as she had that one time and then have it peter out and completely disappear. A hemorrhoid, I guess?

I may ask to talk to a dietician, thanks Maya. L is greatly restricting her diet and is eating primarily breads, corn, potatoes, milk, and a few fruits and not very much of any of them. I'd be interested to hear what a dietician had to say about IBS and SIBO (though she's on Flagyl--I'd hate to think what could be growing in there after two years on that).

Also--L was a late bedwetter. She stopped wetting for real about 10 months ago, but this last month started again. I took her to the ped where we had two inconclusive urinalyses (one had leukocytes, but not enough to scream infection, the second had nitrites, but leukocytes were absent) We did a culture and it grew nothing. Could abdominal inflammation cause bedwetting? Could bladder inflammation cause bowel problems? L has had daytime bladder spasms for years, but I never worried about it before because originally her doc said it wasn't uncommon in young girls.

Ugh, I'm just chewing everything over in my head trying to have all my questions straight for L's appointment.
 
I think I have heard parents say that constipation can cause bedwetting because a very full colon can press on the bladder. But I am not 100% sure on that.

I would also be interested to see what the dietician says on what she is eating. Those are foods my daughter naturally gravitates to, too (except she ate certain veggies and would not eat fruit). I had a very hard time with her when she was young - she was an incredibly picky eater and I honestly think it was because some foods caused pain. Nothing I did got her to eat more. It was only after her Crohn's and Gastroparesis were under control that she started liking food (and that was only two years ago).
 
Yes, I talked with her ped about constipation, but her ped was pretty certain she's not constipated (she has large mushy stools daily and the ped thought we'd see more liquid stools less regularly if we were dealing with constipation). She'll order an x-ray if we want one. Maybe I should ask for that just to rule it out for sure. If she has a faecolith I suppose that actually be the root cause of several things.
 
As has blips If bleeding
Meaning 1-2 days of blood
Then nada
His GI feels it’s mini flares
Where things are not all the way where they should be
Good luck
 
When H has inflammation brewing she does get episodes of frequent urination. Nothing shows in her urine...so I always get a question mark.
There is a condition called interstitial cystitis (if I remember correctly) which could be related to IBD. However, it seemed to me that for H it was Crohn's inflammation.
 
L had her appointment last week and it was fairly productive. Her doc was aware this time that her inflammatory markers have never been raised. Because L's fcal was normal in July she wants her to try omeprazole for two weeks and see if it reduces her pain after eating. If nothing changes we're going to schedule scopes. In addition to pain L has only gained two pounds over the past year. Interestingly, the doc really took notice when she talked to L and L said she was hungry all the time and I didn't feed her (!!!). I protested that I just wouldn't make pancakes three meals a day (which is the main thing L wants to eat anymore) and L said with great annoyance that that was the only food that didn't hurt her stomach. The doctor took that more seriously than my telling her L was restricting how much and what she ate. I was really happy that L advocated for herself, even if she didn't quite realize she was doing it. Anyway, the doctor said it was possible that both bloodwork and Fcal may not be good measures for her disease and scoping was the next step.

In the meantime, the bloodwork results from her appointment came back and a couple of her liver enzymes, which have been normal for the last two years, are notably up. So now doc wants to maybe add another liver biopsy and I'm wondering if the pain after eating (and mushy stool) has to do with something there and has nothing to do with the ibd. Only her abdominal pain has been going on since before the enzyme jump.

I guess we'll see what happens.
 
Really glad L advocated for herself - she sounds like my girl, who is quiet but can get pretty feisty ;).

Really sorry to hear her liver numbers are up :(. It does kind of make sense, since her FC is down. How hard is a liver biopsy for her (I mean, is it painful or does she tolerate it well)? Poor kiddo.
 
FWIW - O currently has normal FC and blood labs but is very symptomatic. For many IBD patients the gut micro biome gets pretty upset and about 50% of patients end up with some form of IBS also. Another cause of pain could be SIBO (Small Intestine Bacterial Overgrowth). Many symptoms of IBS or SIBO are the same as IBD which makes it hard to distinguish what is causing the problems. If the PPI doesn't help fix things I would also run the IBS and SIBO past her.

When she had her last scopes, were you able to get a fecal cal pro around the same time to see how they correlated? I don't think another scope isn't a bad idea either since assuming you are dealing with IBS and having it actually be IBD would be bad. SIBO has a simple breath test.

Blood however, is NOT a symptom of IBS so I would watch it and if the blood is darker and significant then it is likely IBD.

Send L to my house because I love pancakes! :rof:
 
Maya--L is not afraid to tell grown ups what she thinks. It's a great quality some of the time. LOL

They do the liver biopsy while she's under anesthesia. The hard part is that she has to lie on her right side for 4-6 hours afterwards to reduce the likelihood of bleeding and they do blood draws every half hour or so to check platelet levels. She'll have a sore side for a couple of days, too. Last time she handled it well but this time she's more aware of things and may have anxiety. We're going to recheck her liver labs in a week, though, too see if this is maybe just a blip, though she's at double the upper limits so it's a notable blip.

Cic--L would be happy to visit anyone who would feed her pancakes! Doc talked about whether this might just be functional pain, but the doc agreed that it's not clear that it is and we need to check. I told her I wished we'd gotten an Fcal at the beginning and she agreed but said insurance tends to give them trouble over it except in specific circumstances. I haven't seen blood (L hasn't reported any) since that few days back in July (?--I already can't remember), but it was quite a bit that time. Very strange.
 
Quick update: L's liver enzymes were normal at her second draw. Yay! Probably just a blip.

Also, since starting omeprazole, her stomach pain after eating has totally stopped. She's still not eating a lot, but she's not leaving the table doubled up with stomach pain. Yay, again! Only now doc doesn't think we to scope. Maybe we don't? I still feel like we don't have a good way to monitor her disease.

A sort-of unrelated weird thing happened, though, which is that L has strep throat. Her only symptom is lower abdominal pain. She said the pain was different from "usual," so I called our ped's office and talked to a nurse who insisted we test for strep (since two of my others had it recently). I was confident she didn't have it--no fever, no sore throat, no nausea, only lower ab pain. But she does. She was very excited to get to stay home from school when she essentially felt fine. I'm not very excited about this presenting in a way that is confusing with all her other gut issues, though.
 
Can you get a second opinion?
Not scoping isn’t an option
Even if it’s just to monitor
It’s required as standard of care for ibd patients.

The fact her doc never wants to scope ever
Is scary
 
Yep! Both of my girls have had strep with the same symptom...just belly pain. Weird.

FWIW - if labs are normal and patient appears well...no scopes. Not saying I agree with it or like it but there are GI's who are like this.
 
I think the distinction is a doctor who does not ever scope and not scoping for now. I'm not quite sure which is the situation you're in GirlwiththeCurl. Did you mean your GI does not usually scope, even to monitor or did you mean she wants to hold off for right now since L's stomach pain is better?

Fwiw, our GI says she scopes every 2 years or so, though if a patient is doing really well, she is willing to spread it out further.

However, she says once your kiddo has been diagnosed for 8 years, they do scopes every year for colon cancer. M has only been diagnosed for 5.5 years, so we are not there yet.
 
Her doc was ready to scope if we added the omeprazole and she was still having pain, and she's really not now. In general, I think her doc has seemed slow to be concerned about L's off and on, low-level gut issues. I spent some time pretty frustrated with having her point out L's good lab numbers as an indication of health. Since I pointed out, both to the nurse and her, that L's crp and sed rate have always been normal, the doctor has seemed a lot more inclined to take my concerns seriously (and, as I related before, since L spoke up for herself).


We got one last lab result back today, for the azathioprine metabolites 6 tgn (which typically shows efficacy at maintaining remission from ibd at certain levels) and 6 mmp (which can indicate liver toxicity above certain levels). L's 6 tgn is quite low, well below typical levels of efficacy. Her 6 mmp is not concerning, but it's half again higher than it was in the past. This is interesting since we doubled her aza dose in April. I suspect I'll get a call from the nurse about it.
 
So when was she scopes last ?
More than two years ?
If so even if she is doing great
She needs another scope to make sure she stays that way
 
Has she gained/grown since her dose was doubled? Sounds like she definitely needs a higher dose of Aza. If her 6MMP increases a lot once you increase the dose of Azathioprine, then you could consider adding Allopurinol.

My daughter has similar but somewhat different issues with Azathioprine. Her 6TGN level was VERY low but her 6MMP was close to the upper limit. Her GI thought if we just increased the dose, then we'd have to deal with liver toxicity.

So we added Allopurinol and it worked - her 6TGN levels were in the therapeutic range! And her 6MMP level was much lower! But it worked a bit too well - she started getting infections a lot more. Sinus infections and throat infections mostly, but also random things like ingrown toenails (which she has often) that got very infected very quickly (which had never happened before). Each infection would be treated with antibiotics, so M was on abx a LOT while on the combination of those two drugs.

We eventually stopped Azathioprine + Allopurinol after she got a staph infection in her throat. Staph. infections in the throat are not common.

And to make matters worse, we treated her staph infection with Cipro and that promptly caused CDiff...not our best year :ybatty:. Anyway, we stopped both meds after the CDiff!

I don't mean to say that you should not try it, just wanted to say that if she does up her Aza dose and/or if you add Allopurinol, you should watch carefully for infections.
 

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