Signs of Stricture?

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Pilgrim

Pilgrim

Joined
Jul 24, 2014
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Signs of Stricture? Update

Things are changing. Besides noticing signs of joint pain and fatigue creeping in, bowel patterns are changing.

Notably, less regular BM's still formed but develop into a heap of thin lines.

Does this mean she is developing a stricture? Anyone see this?:confused2:

Sorry for the TMI.
 
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DS has had thin ( pencil thin many times )
No issues

Increased abdominal pain, doubling over , hearing her tummy from across the room, etc...
Anytime there is any changing symptoms fatigue #bm etc I give the give a call - they can decide if it's worth looking into or watching :waiting ...

Hope she feels better soon
 
What MLP said.

I'd say strictures are more commonly indicated by nausea (and sometimes vomiting), abdo pain (yes to the doubling over, I spent my childhood doubled over after eating) and distension and when more severe with loud bowel sounds (may be associated with increased gas production as well, depending on location)

Thin stool can be caused by strictures (depending on location) but could certainly be something else or nothing at all.

Hoping it's nothing at all.

p.s. I think there's no TMI with this! Better to share and figure out the right course of action!
 
You are still new at all this and until you and the GI can figure out what her regular warning signs are I would say go ahead and call the GI. I got an email address for our GI's nurse. This way if it wasn't super urgent, I just pop her an email saying, "hey, this is what's going on" and leave it in their lap. 99% of the time I get a "don't worry, if this, this or that start happening give us a call". This way, you can stop worrying because you know the powers that be know the goings on and you get educated about what to look for.

P.S. also O has also had pencil thin stool from time to time here and no worry..her warning sign is diarrhea and blood.
 
P.P.S - fatigue is a hard one and I know your GI is far from you. Could you bring her in to the ped for a quick finger prick to check hgb? A lot of the kids here go anemic pretty easily. Our old ped would finger prick anytime I wanted...haven't had a chance to train our new ped yet.
 
M has also had pencil thin stools many times. No strictures. Her GI said they could have been caused by inflammation in her colon.

Hope she starts feeling better soon :ghug:
 
Yeah, pencil thin.

CIC - I wish I could do email with the GI team. No go.

I won't freak out about the bm's but I guess looking at it all as a package (change in stools, fatigue, joint pain, abdominal discomfort when eating small amounts of food) then I should give a call.

Come to think of it, I've seen her gag a few times (but not vomit) over the past week and that is odd for her.

Anyone who's dealt with this would there be some pain if I palpitated her abdomen?

Thanks again.
 
I'd say maybe and then maybe not to the pain. Sadly symptoms only tell us so much (pretty much just that we need to pay attention and possibly investigate further) as they can correspond to multiple causes. My mom always said I should have been made with a see-through inspection panel - would have made her life easier ;) Also when you add in a child who is used to pain, that certainly makes the feeback that you get more difficult.

The only sure way to tell about strictures is with a scan. When was your daughter's last MRI? Any findings there?
 
DS lived with a stricture in his small intestine for a good two years. Ribbon like, thin stools, nausea after eating, got full right away and then would vomit it all up because the food couldn't push past the stricture. He did experience pain, but it came and went and was not really concentrated in one spot or ever hurt to touch. The weekly, then daily vomiting is what finally prompted out old GI to take action.

Like 24601 said, the only way to really identify it was through an MRE. How are her labs? Does she typically present well with ESR and CRP?

I'd at least give the GI a call and report the symptoms.
 
She's never had an MRI/MRE. She had upper and lower scopes to diagnose, SPFT last August, and ultrasound in Sept. Her labs don't show much. She was quite poorly off by the time her ESR went up significantly. CRP doesn't elevate.
 
Given her age they may do a CTE since it's quicker
But more radiation
MRE takes an hour of sitting still so they would probably have to sedate her
Some will let you do it without sedation between ages 4-6
DS was 6 for his first mri so no sedation needed
 
Grace had an mre at 6 and they said she was the youngest that didn't need sedation.
She did have to have a cte at 4 for this reason.

As to the pencil thin stool, yes she's had that.
Hers is because their was built up hard stool in her rectum that the softer stool was pushing its way around and coming out pencil thin.
 
You could ask for labs and fecal calprotectin. If I recall correctly her fecal cal is a good indicator for her eh?
 
Fecal Cal is great for her but I have to hand deliver it to Children's Hospital 4.5 hours away. I do have 3 month labs for Humira due in June, so maybe I'll just ask to have those moved up. They should tell me something (or maybe nothing which would be great.)
 
Well, I finally put a call in and am waiting to hear from the GI office. I started this thread a month ago. Obviously, I've been vacillating. She also had her labs done a few days back so they should be getting those too.

She's moved away from ribbon stools and now they are just very small, but not hard looking. She also has many times where she tries to go but can't produce. She said she was up in the night last night trying but nothing. Sometimes it's straight D. But she feels fine otherwise. Eating fine. No pain or tenderness.

Anybody have a kid who feels the urge to go, but then can't produce? I am having trouble connecting the dots.
 
Is it Crohn's inflammation or related to something else? Her rectum looked not too bad on scopes last year.
 
DS had that too... not proctlagia, per se, but the urge to keep pushing and feeling like he wasn't done. He would sit on the toilet for hours. In his case, getting his disease under control solved the problem.

Did the GI respond?
 
Not yet, still waiting.

She's doing well otherwise. And we're 6 months into Humira now with the fecal calpro dropping like a stone last we checked (April). So I think treatment is working well. But this change is odd.
 
Things change quickly in crohns so what is happening now would not be represented by last years a scope also kids tend to morph with this disease it moves from one area to next for no reason
That said DS has crohns in the rectum but didn't have it there on his initial scope .
Also crohns guys are sensitive so it could be just irritated from something else
For DS most of the time this is the case ( sometimes even food )
 
She was just back in the bathroom. Ran in because it was urgent and then Mr. Tiny B.M. was there.

MLP - Nothing is allowed to change. I agreed to Humira, and that better keep everything from morphing, darn it.

I have been watching her food to see if anything jumps out at me. I had to cut back out any fluid milk, but maybe will go back to the basics. I'm wondering if a round of EEN would help. But she loves the summer food, and would hate to go there.
 
For DS we tried every type of diet to get rid of his extra stuff .
Coukdnt see any pattern
Now he is EEN with limited foods and doing great
I add only one thing at a time and am
Slowly figuring out his foods
Chicken is a surprising no go for him
But once he gets a good diet the EEN with be drastically decreased .
His GI is determining what should and shouldn't be in his diet
Not a random
Thing
 
How is GI making the decisions? Are you keeping a chart w/observations?

I would go back and do this again (dietary restrictions) if it will save her from perianal disease or delay.

Did you start with a full round of EEN?
 
http://www.ncbi.nlm.nih.gov/m/pubmed/24983973/

Used this one above
There is a thread on here a few pages in I started as mlp on it

Combined with Ibd aid diet

So all fresh no additives no packaged stuff
No gluten no dairy limited meat ( chicken -which he can't eat ) no grains limited sugar
But we are modeling it to fit DS
We did two weeks of only EEN
Then the diet
But this was after two hospital admissions and numerous ER visits and months of uncontrolled abdominal pain /rectal pain urgency etc but no sign of active disease
Gi said based on what he saw it wasnt Ibs but something so we tried this after trying flagyl ( two rounds ) levsin etc ...,
DS has a history of severe atopic response and food allergies so GI believes it's ds version of egid or allergic /food intolerance in the gut
 
Doesn't stop rectal disease btw just seems to have fixed DS rectal issues after three years of trying it all but the kitchen sink
 
We've had this issue too. M's GI prescribed hydrocortisone enemas which M promptly refused to use. Eventually, the symptoms went away on their own (thankfully).

On a separate note, Pilgrim, you have the most gorgeous little girl! Love the picture!
 
Well, our call back came. They figure she's probably constipated. I hope they're right because I have that t-shirt already and don't want another one. :)
 
Pilgrim, my son has this sensation too. On occasion he feel like he has to go, but then can't (maybe constipation?). But he has always had the feeling like he's not quite finished after he has a BM. And unfortunately, the feeling has been getting worse over the last couple months. We see the GI next week to follow up the MRE that was done. Like you, I'm hoping it's just constipation and not perianal disease.
 
She also has what you describe - that feeling like there's more in there. She can sit for 20 minutes (common now) have liquid D, and then tell me that she's done but there's one that won't come out. She also told me after D that she had to push it out (the description was like the effort for constipation).

I don't know what to think. Her GI is supposed to get in touch with me tomorrow to offer an opinion. I hope he moves up her visit and schedules some imaging.

I will be watching to hear what you learned from the MRE. What treatment is your son on?
 
Make sure they check her for rectal prolapse .
It will show when she pushes to have a BM then retract
That can inflame and make it feel
Like there is more but not
 
Grace a year plus ago had the same feeling. She would push and push ( like constipation) but soft stool would come out. Her GI thought it could be inflammation inside the rectum. She prescribed rectal suppositories(sp?). It worked after 2 weeks!. Grace also had a prolapse early on ( about 3 yrs old). I hope I never see one again!:confused2:
 
Pilgrim, my son is on MTX injections. Has been for almost 2 yrs now. Was in remission, but started having symptoms in March. I'll let you know what our GI says. Keep me posted your daughter too.
 
Pilgrim, my son had his GI appt today, a follow up to the MRE done 2 weeks ago. Apparently there is no prolapse, perianal disease, etc, so I'm a little lost as to why he would have the sensation that he has not fully emptied his bowels when he has a BM. He does have an anal fissure due to constipation, which is healed now, but still gives him a little discomfort. Maybe that's it. We have bigger fish to fry now anyway, but I'll ask those question in a new thread.

Any news from your GI?
 
Thanks so much for letting me know. I'm really glad for you and him that none of those particular issues are present.

No news here. I keep getting told I'll get a call X day and the day rolls around and no call. Her symptoms are not going away, so I guess I have to keep trying.

I am off to search for your new thread.
 
We are doing a round of stool and blood tests and we got in for an appointment next week.

Looking forward to getting some answers.
 
Well it looks like she is into a disease flare. Her labs showed anemia and while it is not too far below the level, it all adds up to things working in the wrong direction. She started out this way before diagnosis too.

So, we wait on the calprotectin results and if they are high we escalate treatment. I should know next week.

Those options are: Humira weekly, or add MTX.

Meanwhile she goes to 70/30 EN/Food

I have an inquiry into using the IBD-AID diet for her 30% food.

I feel like it would make sense to go with the Humira weekly. She'd hate it, but we already know that she is tolerating it, and adding another med (MTX) comes with a whole separate set of side effects and labs.

Any thoughts from the Parents in the Know?
 
Humira weekly made a big difference to my daughter. The shots are painful, of course, but like you said, no surprises since it's not a new med. That said, we did have to add MTX eventually.

Going to Humira weekly was actually easier on my daughter than adding the MTX but that is because she reacts pretty badly to MTX (though her reaction is quite extreme - most kids have pretty mild side effects.

Does your GI have a preference?

Really sorry to hear she is flaring. Hope you can get her back into remission SOON :ghug:
 
His preference would be to go to Humira weekly.

I understand that nausea is a common side effect of MTX and I would be happy if she didn't have to add that to her list of things to deal with. Also, like your daughter S, we could have that med still in reserve for when we need it.

How long did the move to weekly help before you had to escalate to adding MTX?
 
Ds added Mtx and upped humira to every 10 days ( arthritis flaring issues not ibd)
No issues with the Mtx since it's such a small dose .

Fingers crossed for fast results
 
Oh man! I really really hope this is just a blip! O has had anemic on a number of occasions without being in a flare. But she is older so not sure that makes a difference.

We added mtx and it has worked great. Not yo mention all the research coming out recently about the immunosuppressants role in preventing antibodies to any tnf's.

Here is my big question. If a simple flare why not treT with steroid or een? If humira not at right level then definitely change dosing. I think in your case (still early in dx) it has more to do with humira but just confused as to when they treat as flare and when change therapy... Of course my question is because of our experience with t.

Sending lots of fast and low fc vibes your way
 
We saw an improvement with making Humira weekly but it wasn't enough - M's joints were still stiff and swollen. It took maybe 3 shots of weekly Humira to make a difference but after 3 months of weekly Humira, when we still weren't seeing enough improvement we added MTX.

Weekly Humira plus MTX took another 2 months to work - but once it did, it was magic.

All this was before M was diagnosed with IBD. After she was diagnosed with IBD, when she tried Humira for the second time, we went straight to the weekly shots because of her experience before. It worked in about 6 weeks - again like magic! It only lasted for 4-5 months before we had to try something else sadly.
 
Wanted to add that there is a Humira levels and antibodies test (just like the Remicade one) - a simple blood test to check if she is metabolizing Humira too quickly and needs it more frequently.

It wasn't available when my daughter was on Humira which is why we went straight to increasing the dose.

MTX doses are based on weight but can vary quite a bit. My daughter has been on anywhere from 7.5 to 25mg (but by injection). The needle of the injection is tiny and it's not a painful shot like Humira (but of course, it is a poke). My daughters did not mind the actual injection at all - both were able to inject on their own.
 
CIC - He didn't even mention steroids and I'm ok with that. I think he prefers EEN but he didn't even mention going 100% except in saying that there have been some info out of CHOP to show that 70/30 works pretty well without cutting them totally off of food.

I think the change in her bowel habits + anemia in labs showing up = flare but he is waiting on f. cal to be sure. I would go to scopes to verify but he didn't bring it up.

Not sure as to your last question. It was probably rhetorical, eh?

If the FC is low I'll be really confused, but it would still be better.
 
Maya - I remember reading that the antibodies test is expensive, but will ask about it just in case.
 
Ds started at 7.5 mg orally ( so not as much absorbed)
And then moved to 12.5 mg oral Mtx plus humira every 10 days
 
In the US the test is expensive and insurance often denies it. I think someone on here posted that you can negotiate the price with Prometheus labs if your insurance does not cover it (crohnsinct I think?). We've only done the Remicade test but thankfully our insurance paid for it.
 
MTX made a big difference for my daughter. She started MTX just before her 4th Remicade dose, when Remicade and 3 weeks of EEN weren't controlling her symptoms. She takes 15mg orally, and it seemed to help her pretty quickly after starting it. She has almost no side effects from it either. She takes a zofran at 8pm, the MTX at 10pm, and then goes to bed. Her appetite is a little lower the morning after, but no other problematic side effects.

That said, we've had to increase Remicade dose too; E is at 6 week intervals now, and her dose will probably go up at her next infusion.

So you might have to do both things in the end anyway. But I think I would try MTX first, since it might also delay the formation of antibodies. (I'm also influenced by the fact that my daughter HATES shots.)

I hope that whatever you decide on puts an end to this flare quickly!
 
Yeah pilgrim. The question is 't whether or not something is going on but why. Is it a loss of response to med due to too low a level or an actual flare that just needs a short term hit then back to plan.

As maya pointed out with the biologics you can look at levels and antibodies first. The test is expensive but before I would change anything ie increasing dose or assuming flare and hitting it with steroids or een, I would want that facts so we are doing the right thing.

I only have experience with Prometheus and the remi test but I would assume humira is similar. They are great to work with but not sure if healthcare system in Canada changes things
 
OK, CIC. That makes sense. When he calls next week I will ask about the "why".

We do have fewer private options available here because of our healthcare.
 
Sorry Pilgrim but this is a sore topic with me and the insurance here. I know I ranted on FW's thread but I will rant here also lest you feel left out and ignored:ylol:

Our insurance doesn't cover levels or antibody testing. They used to but then the docs learned how useful it is and started using the test more and then Prometheus pulled the test in house and the cost soared and insurance put the stop on it saying it is not clinically significant.

They would prefer you treat using symptoms. So you could potentially have a child showing symptoms and assume that they just need more meds and up the med dosing. This assumes the child metabolized the drug too quickly and while this happens often it is not always the case. Unless you check levels you don't know if the child had a sufficient amount of the drug in their system but just lost response. If you go with the assumption we started with you continue to dose with no response and leave a child unprotected until you finally decide to throw in the towel. All the while inflammation is causing it's damage and you are putting the patient at increased risks.

The other scenario could be that the child built antibodies to the med but again if you go with the assumption we started with then you continue to increase dose and risk an allergic reaction!

Both scenarios potentially cost the insurance companies a lot more than the testing. Especially when the testing really allows the docs to optimize anti tnf use and extend time in remission.

So what do you do if you test and find sufficient levels and no antibodies? That is when our doc assumes flare and treats with EEN or steroids. If said "flares" continue then add a med (if you haven't already) and if you have already added a med, declare non responder and move on.

This is why I am so frustrated with T's case. No test to know whether or not she is simply a non responder to mtx. Just treat as flare for a few months, withdraw steroid and see what happens..I am used to the science and facts with anti tnf...don't like the art of mtx.
 
CIC - THANK YOU.

I'm going to call and leave a message about this tonight. I'll tell you what they say next week when they call.
 
Pilgrim - I'm sorry she is flaring. I'm sure you are in agony seeing all of this, waiting on new results, and trying to figure out what to do next.

You and the drs will figure it out. I'm sure. I hope that time comes very quickly.
 
We're pretty lucky because she seems to become unwell very gradually. This time it is way easier to cope with than before scopes and diagnosis last year. It's funny how it all becomes a little bit normal.
 
Something else you may want to ask about... S has had the prometheus test twice (actually three times because one test result went elsewhere!). Cost has never been discussed. I think it is because, immediately after S started on remicade, he was asked and he agreed to participate in a remicade study. Other than the odd extra vial of blood at GI apptmts, he hasn't had to do anything more for the study. I think the prometheus testing is part of the study??? I suppose it could just be covered by the hospital but I've never heard that hospitals cover that cost. I know it isn't covered by OHIP because a friend who's daughter has crohns and is at Sick Kids has had to personally pay for the test twice (private insurance didn't cover it).

Totally conjecture on my part but might be worth asking if there are any remicade studies in which she could participate and what benefits there might be to you/her???
 
She's taking Humira, but I think what you said would apply to Humira as well as remi. She is being treated at a research linked hospital. Personally, I think because of her age - there is a lot of interest in her response to treatment. That is a good angle to try and get the testing for her. I will mention that as well to the GI and see if it would work to get the testing done. She is below the approved age for Humira in Canada (which is 13!) so they would still be doing much research to push the age down to where it is in the states. 6 yrs old, I think, down South.
 
Our GI said the same as Crohnsinct - they used to use the test a lot but then insurances started refusing to pay for it. Totally ridiculous.

It's definitely worth asking about, in my opinion. The more info the better, right?! For Remicade we did it right before an infusion so I assume with Humira you would do it right before a shot but I'm sure someone who has actually done the test will chime in.

Hope she starts feeling better soon!!
 
Yes, sorry I knew she was on humira :blush: and, yes, I would imagine the same could apply to humira. As you said, given her age, perhaps there are studies being conducted??
 
So, I was told that up here Humira used to offer levels testing but quit doing so at some point because it wasn't correlative? That really doesn't make sense to me, but I'm not getting anywhere with the inquiry.

GI uses labs, symptoms, and f.cal to determine change in treatment. I wish we could have that extra info for an educated decision.

Anyway, her f.cal came in at 980. So we are definitely trending up from about 250 a few months ago (she was 1800+ before starting Humira 6 months ago).

He's moving her to Humira weekly. She's recently gotten really good at mentally coping with the injections so I think we don't have any real unknowns with this move. I'm feeling ok with it for now. I just hope it does the trick!
 
Sounds like a plan to me. With Humira being a weekly shot you don't have to wait as long as say a 7 week interval with Remicade to assess the effectiveness of the therapeutic change.

I hope this is the ticket! Now maybe the next time you call doc with some concerns they won't be so quick to blame constipation from the beginning...a mother always knows. Not that the doc made a bad call...you are new to all this and both figuring each other and your pumpkin out but you knew something was off. :ghug:
 
Weird to hear about the Humira test - I feel like we were just told that it could be done for M if we were to try Humira again. I'll ask next time we see M's GI.

Hope the weekly shots work like magic!! Way to go H for dealing with the shots - what a tough little girl.
 
MLP yes, I believe she was tested for CGD at the beginning because of the VEO.

Maya, in Canada it may be that because it isn't funded we just can't get it.

CIC Darn straight they should listen to me. But yes, it is a building relationship.
 

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