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Thanks for the fab update Mehita. May it keep on keeping on! :):):):):):)

Onwards and Upwards!

Dusty. xxx
 
I hate Crohn's.

DS has been constipated. I optimistically attributed it to the iron sulphate, but deep down had "a feeling". You all know that feeling.

He's on a super low dose of Aza and his AST liver number keeps creeping up. Today it was above the normal range. Not by much... it was a 38 and the normal range tops out at 35. What kinds of numbers do you need for the plug to be pulled on Aza? His ALT was still in the middle of the normal range, but that too is creeping up with each blood draw. Sed and CRP are elevated above normal as well.

Could is be a mini flare? I'd hate to give up on Aza so soon. So frustrated right now.
 
for Ds they pulled at 3X the normal limit. They let it creep for two blood test but by the third it was way above normal ( I think 90 - ish ) for both AST/ALT. It had been barely above 35 for the other two.
 
Sorry to hear the numbers are creeping up. Same for us - 3x the normal limit is the top end of what they will allow. Hope things stabilize again.
 
What do you think about the CRP and Sed being elevated? I just read that inflammation can cause AST to rise also. Maybe that's the cause?

And with the inflammation... now what? Would they put him on pred again? Increase Aza? Add something else?

Too many questions running through my head and, unfortunately, it's the nurse's clinic day so I won't hear from her for awhile.
 
Stephen was never on 6mp or Aza, however, his ALT and AST levels were always a bit high (this was while he was on supplemental EN only, no meds). Our normal levels seem to be a bit different from yours but, last May (2012), Stephen was at his 'usual' ALT 55-60 (norm high is 50) and AST 40 (norm high is 36), then between his May and July bloodwork they both almost doubled! There were no changes in treatments, nor diet nor symptoms (not even CRP or ESR). And then, since last July, they've both just gradually dropped to normal levels (even before he started on Remicade in Feb.)???

Have no idea what caused them to go up so suddenly??? One suggestion that came up when I questioned it was a connect with exercise... I looked into it and found a study that showed a connection between weight-bearing exercise and ALT/AST (and S had started lifting weights at the gym at that same time) but the impact on ALT/AST was supposed to be transient... so as it took six months to return to normal, still really have no idea if that could have been the cause. GI wasn't overly concerned at the time.

:( Sorry you have this worry now. :ghug:
 
Mehita said:
And with the inflammation... now what? Would they put him on pred again? Increase Aza? Add something else?
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Hopefully things will settle Mehita, but from our experience I'd say all 3 of these are possibilities maybe even at the same time! Sometimes I swear they're just guessing!!
 
Ah yes! Time for another round of our favorite game "Out guess the GI". I'll take Prednisone for $300.
 
A has only had 1 set of labs since starting 6-mp but her numbers were a little off too. Her AST was normal, but her ALT was 43 (8-24 norm). Her GI thought that was fine initially, but did pull the med for 2 days while she was in the hospital just to be sure it wasn't making her sick. It wasn't. I hate that we have to worry about this stuff.....
 
In the game of "Outguess the GI"...

Not concerned about the AST.
Stopping the iron sulphate.
Status quo on Aza.
Stick with the Miralax another 3-4 days. If no improvement, hello pred... or Flagyl, but Flagyl didn't go so well last time.
 
Did he at least say they would keep an eye on the numbers? What did he say about the CRO and SED rate? Was he concerned about those at all?
 
kimmidwife said:
Did he at least say they would keep an eye on the numbers? What did he say about the CRO and SED rate? Was he concerned about those at all?
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He said we'd watch it (another appt in Aug) but right now he's "not ready to modify the long term plan based on this". But this makes me a little nervous and is essentially why we fired GI #1 and GI #2 who also allowed simmering inflammation... which I believe is how DS ended up with a scar stricture/surgery.
 
Will he be doing blood tests again before his next apptmt? If tests are not scheduled before the GI apptmt, can you ask to have them done? This way you and GI can discuss recent tests, not those done a month earlier.
 
Yes, I will schedule labs a couple days before. I have to see what his current standing orders are.

So, why would they be thinking Flagyl? Just because of its anti-inflammatory properties? What is it typically used for?

I'm still keeping my fingers crossed that this is all just a blip from the darn iron.
 
A is on a short course of Flagyl too. She was initially started on it in case she had c-diff, but when that came back negative the GI felt it was still beneficial because of the anti-inflammatory properties.

It did stop her diarrhea fairly quickly but now it has returned. She also has bloody stools now and didn't prior to starting Flagyl. Not saying the Flagyl caused the blood, just saying it hasn't completely helped the situation.
 
When Stephen was in hospital, while being tested pre-diagnosis, he was put on IV flagyl for a week. It dropped his CRP huge - went from 136 to 4 in that week.

I don't think he had any side effects (ie diarrhea) from the flagyl specifically but hard to say as he was in the hospital because he was already sick. Also, keep in mind, he had it through IV.
 
Flagyl is used for both it's antibiotic and anti-inflammatory properties.

When you are flaring doctors often believe that there is a degree of infection present, hence the Flagyl. As you know Crohn's causes inflammation that attacks the lining of the bowel wall. When that attack takes place it breaches the lining, now the intestine is not a sterile environment but beyond that wall it is, so when it is breached it is very likely that that an infective process will take place. So it often prescribed as a first line treatment, with or without other meds, to bring things back into line as it treats the infection and the inflammation.

Matt was on Flagyl for 6 months. 3 months pre op and 3 months post op. Pre op was to keep him stable in the lead up to surgery and post op as the Crohn's specialist is of the belief that it helps to establish and maintain and longer remission.

Matt did not appear to suffer with any side effects from it. He did much prefer the brand over the generic due to the taste issues.

Dusty. xxx
 
Very interesting on the infection thought. Up until DS started the Aza his WBC has always been just a tad above the normal range, even when feeling great.

Six days of Miralax and BM's are still a mess, but the visits are getting shorter. DS says its helping...?
 
And he's back to having accidents at night. Doesn't make it to the bathroom in time. Last night even pooped while asleep. Woke up and there it was. Nice, huh?

Waiting for a call back. Any one want to take bets?

I have no proof, but my gut is telling me that if we run labs today we're going to find the inflammation markers a little higher still, not alarmingly high, because they never are, but higher. Again, no proof, but I think something is going on in his colon. He hasn't had a normal, solid BM since early June.

He's been going to the bathroom 5-8 times a day. Sometime productive, sometimes not.

This week is three months on Azathioprine. He's been at therapeutic levels since the first month. I really don't want to give up on Aza, but it doesn't seem to be working. Just in the last month, two weekends of night time pooping?

Just bummed...
 
Not to confuse the situation further but....
Miralax can cause stool leakage. It did for my DS but once he was on it for a prolonged period and we got the dose right that stopped.

It also has something to do with retraining the bowel to "learn" not to get overly full before emptying. Stool can also leak if it moves around a large impacted stool but that would not be a regular size BM it would just be a bit.

6mp didn't work overnight for Johnny, the pred handled the inflammation quickly but any healing after that took a long time. Probably a year before we hit good solid remission. But, things never got dramatically worse either, just slow improvement overtime.

((((hugs))))
 
Thanks, Johnnysmom. Going to drop to 1/2 a capful of Miralax today and see how that goes. Fingers crossed. This retraining of the bowel... the Miralax does that over time?

Maybe we just haven't found the perfect balance yet.
 
It was explained to us like this...

The large stools actually cause the nerves in the rectum that 'signal' they need to be emptied less and less as they stretch and the bowel expands. Constipation can be a vicious cycle because having large stools and a stretched rectum makes it more difficult for them to tell if they have to go, and to have the pushing strength to get the stool out. If you start miralax the loose stool can leak through around the harder large stool. The retraining is actually just the amount of time it takes for the bowel to shrink back to its normal size and for those nerves to start working properly again. It took several months for johnny but his stools where huge. He could go 8 days without a BM. If we didn't stay on the miralax consistently everyday he had the leakage and things didn't stabilize. Johnny does one tablespoon, which is less than normal amount. He is 5'11" and 140 lbs.

Also, don't have him drink it at the same time as taking oral meds. The miralax will inhibit the absorption. This was something our Pediatrician talked to us about, she hadn't seen any studies but if you read about how it works, it makes sense to avoid taking it with other meds.

Hope it works :)
 
Oh man...you guys are bringing back my nightmares. I had this with my older non IBD daughter. I don't remember so many of the specifics but yeah it was about a year before we were able to get my daughter completely off the Miralax. The GI had her on a dose that kept everything nice and soft for a long while until her body retrained itself and she regained muscle control. It is quite the balancing act at the beginning though to find the magical dose and she didn't have the complication of IBD. I feel for you!
 
Have I ever told you guys I love you? The retraining makes sense. The change in dosage makes sense.

MLP reminded me that it needs to be taken daily too, which we weren't doing consistently. If we knew we weren't going to be near bathrooms cuz we were out having fun, we'd skip the dose that day. I didn't know.

DS is only 4"11, 85 lbs and been doing the full 17 mg of Miralax. Think it's better to underdose and work our way up? Or the other way, and work our way down?

What dose worked for your daughter, crohnsinct? I know everyone is different.

He's been doing the M at 6pm and Aza at 8:30pm. Maybe that's not ideal. We could switch the Aza to the morning.

Thanks for calming me down :)
 
I think the M at 6pm and the Aza at 8:30 pm is fine. I just wouldn't take the glass full of Miralax with the Aza. That spacing should be fine.

I would try the 1 tablespoon, which is up to the first line on the cap. If he is soiling, the dose is probably too high. But, when I had my colonoscopy I had to drink the whole large container so I know it won't hurt him to take too much. I think the starting and stopping is what causes the most problems. I only know this because we did it for years before Johnny was diagnosed. We occasionally miss a day (we never miss 6mp) and it doesn't seem to make a difference but you want to be pretty consistent. If you see loose stools just lighten up on the dose. My son would know the next day if he had too much the day before.

I am sure you will get there!
 
As far as dose DS takes 1.5 capfuls at 76 lbs. right now we are lowering that dose I think
..... He had D x4 today so far and its early .

Always a balance.
I will say if there is inflammation in the rectum
Miralax daily will not retrain the bowel .
Btdt for over a year - no difference .
 
GI nurse said she thinks it may be a flare, mostly because of the BM while sleeping and that we were having the same issue 3 weeks ago before starting Miralax. The BM at night is a red flag in their book. She's checking with the GI to see what he wants to do and will call back.

My bubble has been popped :(
 
We are in the same boat, yet again. Stooling accidents....waking to have BMS......

Let me know what your doc says. I haven't harassed mine yet this week, lol.
 
He's back on pred :( 20mg for five days. If the pred fixes things, then we'll know it's a flare. Also dropping to 1/2 a cap of Miralax.

They seem pretty determined to keep him on Aza as long as possible, which I get. It's just frustrating. If I'm putting these poisons in my baby, is it too much to ask for them to actually work?

Sorry, bit of a pity party going on here.
 
Oh:hug: we thrown many a pity parties around here.

I'll bring the cookie dough and some punch. (I found that I have to bring my own beverages because crohnsinct spikes everything else.:stinks:)

:smile:Well back to the point...When Grace did Pred we were able to stop the Miralax and everything went back to normal, for awhile at least.
 
A is on 40 mg and things still aren't great. What the heck does that mean for her?

And I totally get you on the "poisons" bit. A is taking 13 pills a day now plus the liquid Bentyl and I don't feel like we're making much progress. It is frustrating. I'm still waiting on that magic pill.....
 
Maybe a little Pred is all he needs to get that inflammation settled and then the Aza can do its magic?

Then you can return to your bubble with the rest of us!!
 
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Cookie dough and fruit punch:stinks:...I will bring the chocolate and wine! Now we are talking pity party!

Mehita: I was thinking this was all down to flare. So sorry the road has been so long and hard. Two steps forward one step back. The key is to keep on stepping!

Dancemom: chocolate, wine and hugs for you too!
 
Oh Mehita, I am so sorry to hear this. :ghug:

Unfortunately for many with Crohn's nocturnal diarrhoea is a sign of flaring. :(

I hope more than anything the Pred is able to pull things back into line for your lad, bless him. :heart:

Dusty. xxx
 
Thanks for your support everyone. I just wish DS could catch a break. He tries really hard not to let it get him down. It sure would be nice to go more than 3 months without a round of pred though!

I'm just flat out exhausted having to keep my guard up all the time. Just when I think I can relax and breathe... boom.

We were watching Star Wars the other day. You know the line "The force is strong with this one"? Well, under his breath DS says in the same tone, "Yes, the inflammation is strong with this one." He glanced at me and just burst out laughing. God bless him.
 
Mehita said:
We were watching Star Wars the other day. You know the line "The force is strong with this one"? Well, under his breath DS says in the same tone, "Yes, the inflammation is strong with this one." He glanced at me and just burst out laughing. God bless him.
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LOVE IT! Just proves to you how resilient kids are!:hug:
 
:hug: Mehita and Dancemom.. Really hope you get your guys sorted soon :(. Hope the pred works for both and quickly!

(((HUGS))) to you both xxx
 
Argh! Neighborhood block party. Gluten free lemon bars right next to regular ones. Guess which one my Celic boy ate?

Ever have one of those weeks?

Boom!
 
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Welcome
Join the merry go round
They let you on
But you can never ever leave .......( insert evil laugh)
 
Finished five days of 20mg pred today. It kind of worked...? But not quite well enough. Of course the gluten exposure didn't help. No more nocturnal diarrhea, fewer bathroom trips overall during the day, a couple of semi-formed stools but the lose ones still outnumbered good ones, and still has cramping and decreased appetite. Since he did respond positively to the pred, they're calling this a flare. The nurse, GI and I are all thinking it's his colon that's not happy right now. So...

They bumped him up to 35mg for the next three days to fully knock out the inflammation and then I'm supposed to call with an update early next week and we'll go from there.

I asked the nurse how many flares before we decide that Aza isn't working for him. She said typically one to two once at therapeutic levels and he's been therapeutic for two months now. She said I shouldn't be surprised if the GI starts talking about Remicade at our next appt on the 20th. I took that as my hint to start researching and putting together my list of 20 questions.

She also said the GI's immediate goal is to get DS in a good place for the start of school (which, unfortunately, means the pred and taper) because the GI knows how important school is to DS. I was happy to hear this! At our last appt the GI had asked DS what is the worst part of Crohn's is and DS said missing school. He obviously listened and made a note of it!
 
Mehita said:
The nurse, GI and I are all thinking it's his colon that's not happy right now. So...
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I hope he doesn't need a full pred taper and things get sorted quickly! Just wondering why you all think it's the colon?? When was he last scoped?
 
Dexky said:
Just wondering why you all think it's the colon?? When was he last scoped?
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He was just scoped in mid-May and out of everything they saw his colon was the area in the worst shape. He hasn't had a formed stool since shortly after his last pred taper in June. The nurse said something about water in the colon and if his colon is inflamed, stools don't form.

It's also the area where he complains of cramping.

Think we're missing something?
 
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Glad you're seeing a bit of an improvement. Hopefully, the higher pred dose will knock out the inflammation!!

And, it is good that the GI has obviously kept in mind that your son doesn't like to miss school, nice that he seems to be remembering the 'whole' person, not just treating the disease. :)
 
Sorry he's flaring again and had to go back on pred. I hope the new dose settles him back down and you can find a more successful solution... How long has he been on AZA all together? I've heard it can take up to 6 months for some to reach therapeutic levels.
 
Mehita said:
He was just scoped in mid-May and out of everything they saw his colon was the area in the worst shape.

Think we're missing something?
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With scopes that recent, I'd say they'd have a pretty good handle where the problem is. Has there been any discussion of budesonide since they believe it's in the colon? For some like Claire, it does the good of pred w/o the outward side effects. My son still gets the facial swelling with it but it does have him doing well otherwise. If they mention a full pred taper, I'd at least bring it up and see what they say.
 
Carol, he's been on Aza since May 10. Surprisingly, he was at therapeutic levels on June 10, so it's been a good two months since being therapeutic, yet things haven't gotten better. Worse, even. He tested in the intermediate range for TPMT, so I've wondered if that has any impact on how well Aza is (or isn't) working.

Dex, I'll bring up budesonide when I call this week. Thx.

Went to a wedding last night. DS spent most of it in the bathroom. On a positive note, after spending the weekend with him, my family and extended family got a taste of what living with Crohn's is like. I didn't really care for the looks of pity, but I'm glad they saw it firsthand. I'm not making it all up, folks! Really, this is our life!
 
And now we've got blood in the stools. This is new. Bright red and sort of "attached" to the stool and also on the toilet paper.

We've been doing 1/2 a capful of Miralax every day for two weeks. He's been on 35mg prednisone for two weeks. Things seemed to be improving, but very, very slowly. Tonight he had a massive, though soft and mushy, BM and now he's on the toilet again with more and there is also blood.

I checked his bottom. There is nothing unusual on the outside, so I presume the blood is coming from the inside.

We have an appt on Tuesday and I have no idea what to expect. Up the pred? Up the Aza? Give up on Aza? Overall, things are getting worse.

And if I'm allowed a little mommy moment here... I'm just sick to my stomach about all of this. I'm so frustrated and mad and sad and urgh! The last two years have been a constant battle with this stupid disease with only very brief respites. A year and a half with that stupid stricture and now these stupid flare ups that just don't stop. I don't think I can do this much longer, which makes me even angrier because I HAVE to keep going. I have to keep the brave mommy face on and it all just sucks. Sucks, sucks, sucks.

Okay, done now *sniff*.
 
I'm so sorry you've had such a bumpy road! You're certainly allowed to have a mommy moment! :ghug: :ghug: I know the nurse has suggested that remicade might be suggested but do you think the GI is ready to move onto to something else?? Stephen's never used aza or 6mp so no experience here but, I'm sure I've read that it can take up to as long as 6 months to show results. Do you think the GI wants to wait longer?

I can only imagine how frustrating it must be when remission just isn't coming :( but, hopefully, it is coming soon!!! My aunt had a terrible time getting into remission when she was diagnosed, I don't know all the details as it was so long ago and in another country but, suffice it to say that she tried lots of treatments and, for a long while, nothing worked. She was finally put on remicade (was actually one of the first patients on remicade in her country) together with imuran (plus a low dose of steroid). This put her into remission! She was taken off remicade after two years and has stayed with imuran and low dose steroid and has been in remission for well over 10+ years! She travels regularly, eats out, feels good, etc.!!! Not suggesting her treatment is the right one for your son, just that it did take a couple of years to find what worked for her but, once the right treatment was found, it has worked wonders for many years!

I hope you get some answers and reassuring guidance on Tuesday! :ghug:
 
Just wanted to send my support. :hug:Sorry to hear about symptoms rearing their ugly head. I know it's easy to say but You will get there, it's so hard when it's your child you seeing go through this. But you are doing a fantastic job and need to remember to give yourself a break too. Maybe you could stand at the bottom of the garden and let it all out.
I would if I wasn't in a built up area in the middle of town :lol:
I hope things settle down real soon and it's just waiting for the Aza to kick in.
 
Sending hugs :ghug:

Really hope your GI has a new plan tomorrow, will be thinking of you xx
 
So sorry to hear things aren't improving! At least you can vent on here to your hearts content so he doesn't see it. Good luck for the appointment, hope they come up with a good plan to make all this better.
 
Oh Mehita, I am so very sorry to hear that your lad is still having issues, bless him. :heart: And such a worrying and heartbreaking time for you...:ghug:

Sending you loads of luck and well wishes for the appointment on Tuesday. :goodluck:

:hang:

Dusty. xxx
 
Thinking of you Mehita, sorry things are not improving. Hope all goes well at tomorrow's appt. and you can get some answers/a plan in place.
 
Mehita said:
And if I'm allowed a little mommy moment here... I'm just sick to my stomach about all of this. I'm so frustrated and mad and sad and urgh! The last two years have been a constant battle with this stupid disease with only very brief respites. A year and a half with that stupid stricture and now these stupid flare ups that just don't stop. I don't think I can do this much longer, which makes me even angrier because I HAVE to keep going. I have to keep the brave mommy face on and it all just sucks. Sucks, sucks, sucks.

Okay, done now *sniff*.
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I hear ya sister!! If it helps at all...we're ALL with you. It does SUUUCK!!!!!

Sending HUGS your way!! I hope things get better soon :) And you get some answers and a plan tomorrow.
 
We went to the GI appt this morning and DS was really tired, a little moody. Typical of late. Laid on the exam table the whole time yawning. We chatted with the GI, discussed all that's been happening, and decided that the Aza isn't working. He's been therapeutic for two months and the GI said it should be working for him by now. We decided to switch to Remicade and the nurse started making the calls to get it all set up. We ran the basic labs plus the extras for starting Remicade (tb, titres, etc). Great, we have a plan. A fresh start.

On the drive home, the GI calls and says that ALL of DS's labs came back normal. ALL of them. Everything. Not even a speck of inflammation. WBC, RBC, neutrophils, everything. Normal. He said because of this, he thinks the bathroom issues are two things. One, IBS and to stick with the Miralax and two, anxiety. DS is anxious in general and he said especially in kids who've had surgery and have cyclical diseases like IBD, whether they know it or not, they get anxious about when the next flare will hit, where the bathrooms are, what new meds are like, and if they'll have to have surgery again. He said it's actually quite common and thinks that's the core of our current issues.

Since Remicade doesn't treat anxiety or lack of inflammation (note the sarcasm here!), the revised plan is to stick with the Aza at the same dosage, start tapering pred, and call child psych.

And I'm thinking that darn boy has me wrapped around his little finger. He says poop and I jump. Am I the only one who does this? I don't mean to belittle his feelings and situation, but I wonder how much I'm contributing to it all? The helicopter needs to land.

This is where you guys all jump in and say this is what you were thinking all along... she's totally off her rocker.

I'm off to look for an anxiety forum :ybatty:.
 
Crazier then a long tail cat in a room full of rocking chairs. :) but then aren't we all. I think the same thing, always on pins and needles waiting for the next flare. Jack has had a few days of "soft" BM's 2-3 a day which is different then his 1 solid every day or so. So I'm trying NOT to helicopter and sit back and see if it is just school starting (at a new school) and the random little stresses that come with it but it is SO HARD not to keep asking how he is feeling, watching with an eagle eye every morsel that goes into his mouth (appetite is dropping again!). Can I build my bubble out of concrete so it doesn't Pop?
Glad all labs came back normal! That is great! and at least it is giving you some kind of answers but one little thing to remember not that I'm saying it is the case. Things can be going on inside that are not reflected on labs.
 
OMG, that's such a tough to call to make!!! Ugghh!

Did he mention what might have caused the blood in his stool? And, I'm sorry if this has been brought up and discussed before but, how about fecal calprotectin? Can you ask to have one more test done just in case inflammation is not showing up in his bloodwork?

I'm a big believer in positive/negative thinking and its impact and do think there may be 'some' value in what the GI said, HOWEVER, I also think this very often is the answer given when nothing immediately shows up (ie in labwork). :ywow: With or without the FC, for now I would go along with the GI, as the alternative is giving up on a med that 'may' be working, and to rule in or out his theory but I would keep an eye out for things that are symptoms that cannot be 'controlled' by negative/anxious thoughts (ie blood in stool).

As far as that helicopter... BTDT... still there and doing that! :lol:
 
Fecal cal has crossed my mind. The GI nurse is supposed to call with a psych referral so I will ask then, just to dot the i's and cross the t's.

I showed him a picture of the BM with blood and he said it was likely from the massive BM that day. Just irritated things.

It's just sinking in now... Labs are NORMAL!!! Woohoo!
 
Mehita. I am very late in this conversation so I don't know the whole story. My son was prescribed miralax for constipation, 1/2 a cup every day, but it gave him loose stools for days and he complained about pain down there and inside. He has internal hemorroids so all the going to bathroom made it worse, he had bright blood once and I believe was from hemorroid. I give him miralax every other day or if he has loose stools I stop miralax until he gets better. It just occurred to me that miralax may be causing the problem for your son. I have plans to take my son to a pain clinic that includes evaluation from a psychologist. Sometimes when he tells me about his pain I wonder if it is real or is just that he is anxious or afraid. So I guess that visit will be good for him and for me. I hope your son gets better soon.
 
A's labs were ALWAYS normal prior to starting meds. Now they are a little wonky but nothing to be outrageously concerned about. The GI explained it to me like this...."A child can be in a flare and have inflammation that is not reflected in blood work. If there is blood in the stool - there is a problem. If the labs look okay then maybe it isn't a huge problem. But still a problem that needs to be dealt with."

That being said, both of the GIs A has seen lately think she has IBS and IBD. She is an anxious kid at times, though I think she is learning some coping skills and doing better with that. Honestly, being vocal about her illness and joking about it with others seems to have relieved a lot of stress and anxiety for her. But from what I'm told many kids with IBD also have IBS and it can be difficult to differentiate which one is acting up. In your son's case I hope it truly is the IBS so you don't have to move up the medicine ladder just yet!
 
Out of the mouth's of babes...

DS just said maybe he's getting hidden gluten from something. While we're pretty strict here since he has Celiac, I suppose it's possible. Time to tear apart the kitchen, I think.
 
He's pretty scared of gluten (anxiety problem, ya think?!) and he's been a homebody all summer so I'm pretty sure he's not sneaking. Not his personality either.

GI emailed back and said fecal cal isn't going to tell us much. Yes, he likely has calprotectin, but with his improved labs, the info won't be useful. He did ask the lab to run a celiac panel at the last minute. The only thing I can think of that he's eating every day is his Aza pill so I'm going to have the pharmacy call the manufacturer to check ingredients again. The answer is always the same though. There are no gluten ingredients but we can't guarantee anything. Maybe in ten years we'll have a labeling law?!

I cringed at hearing IBS after all I've read here on the Forum, but it also kind of fits too.

In the past his labs have indicated inflammation, but it's always been just slightly elevated. Nothing that any doc has ever gotten excited about. That's why we've always struggled to get treatment and we're on our third GI. He said fecal cal, Sed, CRP are the only ways we're going to know the difference so if this doesn't work itself out soon, we'll just do regular monitoring. Also mentioned low dose Elavil for IBS? Confused on that one.
 
Elavil works to relieve stomach pain in Ibs. It is also a mild antidepressants .
We tried it for DS a while back . It did nothing.
 
Our GI mentioned elavil but we never tried it. Bentyl does seem to help a bit though. Maybe you could look into that? A takes it as needed.
 
I read these last posts and thought they had changed his dx to IBS!! IBS caused by anxiety over IBD and celiac...hmmm! So all stress related symptoms of IBD are really just IBS?? Personally, I'd be happy to follow the docs advice here for a bit to see if he can stick with the aza but I never want to change meds. I hope things settle soon. Are you going to try the therapist?? Elavil?
 
I woke up at 2am wondering how the heck am I supposed to tell the difference between IBD symptoms, IBS symptoms and Celiac symptoms? They're all the same.

We're going the child psych route hoping talk therapy will be helpful. Best of luck to the new doctor... moody, male, introverted, anxious teen with a chronic illness. Those will be lively conversations! Not. Hope he's well versed in Star Trek, Clash of Clans and MadTV.
 
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:rof: I can just imagine those conversations! :eek: Maybe they'll hold the apptmts over instagram or twitter! With a max of 140 charac per post, it must have been designed by a teen boy!!

I think I mentioned it on another thread but, my daughter had lots of anxiety with school, tests, etc. She finally asked to see a psychiatrist to learn how to deal with it and it truly was the best thing ever (wish I'd done it sooner)!! She only saw her for a short time but, whatever she said to her, helped tremendously.

But as for challenging patients :redface:... I had to see a child psychologist when I was quite young... and, boy, did that poor doctor have a challenge! I had juvenile osteoporosis at 5-7 years. Hard to diagnose (especially way back! :lol:) and very rare so not on the radar at all. On top of it, my best friend had something wrong with his legs and couldn't walk... so easy to understand why doctors thought it was 'all in my head' when I said I couldn't walk. So, nothing on test results = send to a psychiatrist. By this point, I'd met with LOTS of doctors and was fine with all of them BUT I understood that they were sending me to his doctor only because they didn't believe me and I wasn't happy about that. :ymad: At that age, few people will really take you seriously (although, credit goes to my mom because she always insisted it 'wasn't just in my head').

So, in I go and throughout EVERY appointment I would ONLY speak Portuguese to him (even though we spoke fluent English at home, school, etc.)! :lol: My parents would watch through a two-way mirror and my mom said it was so frustrating because eventually I did begin to answer all his questions BUT only in Portuguese! :devil: I was mad that they didn't believe me and was determined to not make this easy for them! This poor doctor, I remember he brought out every toy imaginable to try to engage me and I think I do remember 'playing' with him but every response was in Portuguese. :ybatty: After a number of apptmts, his final report was that he didn't know what was physically wrong with me but that I knew exactly what I was doing so, in his opinion, it was NOT in my head. :D Smart a-s that I was, I probably said "good-bye" in English! :D
 
Some other time I'll tell you about my hunger strike while I was inpatient. :lol: (I feel for my mother now... :yfaint:)
 
Well, I'm gonna ask the obvious question here...

Why do you speak Portuguese?? Brazilian??
 
We've been sitting at a gas station in the middle of no where Wisconsin waiting for DS to work out almost 3 days worth of poop. We went camping this weekend and he decided he didn't want to use the campground bathrooms because of spiders, so... he hasn't gone (even with daily Miralax) and here we sit. We are still three hours from home and he's pretty miserable. Tempted to just rent a hotel room for the night :(
 
"On the road again. Just can't wait to get on the road again..." - Willie Nelson

We've gone an hour and a half now with no stops. We might make it!

Someone please tell me that your lives are like this too. That you have moments and stories like these.
 
We got the where to wee app
It rates bathrooms
And find all of them near where you are currently at
It saved us

For our last big trip
We have learned to just laugh about it
I tell DS everyone goes that is why there are bathroom there to use.
 
Soooo... been a month now. DS seems to be holding steady. Almost afraid to say that! Seems like eveytime I report good news it goes down the toilet the next day, KWIM?

He has two more days of 5mg pred and then he's done. Still doing Aza at the same alternating dose and been on it for five months now. Labs look good. Poop is improving. I'm starting to wonder if the gluten exposure in early Aug was really the source of his problems. Saw a child psych in mid-Sept and is going to go in every other week to work on anxiety, poop training, and his fear of pain/medical things. Hoping for a growth spurt once the pred is done. Next appt is in early Nov. It's funny because we never make it to the next appt. Always seem to have issues and need to go in earlier. I should just schedule them at two months instead of three.

Okay, fingers crossed for tomorrow. Knocking on wood, salt over the shoulder, worn out the rabbits foot, and waiting for 11:11pm to make a wish.
 

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