*supposed* remission but many symptoms

[Mallory's Mum]

So I haven't been posting on here in a long while...just a lot of searching and lurking

Mallory (my 9 year old and soon to be 10) has been on Remicade since July (I think). We just past our one year anniversary of diagnosis. Pretty sure it isn't anything to celebrate. After her second treatment, they said "technically" she is in remission if you look at her numbers. We are now getting infusions every 6 weeks as her arthritis has had 3 flare up since July and her rheumi thinks that 6 weeks is best to prevent the arthritis flare ups. So we are fine with that.

Though we have been given the term remission, it's hard to swallow since she is never really symptom free.

HEADACHE: She has had a headache almost constantly since starting 6MP. Currently we are set to visit the headache clinic April 15 but I do wonder if it is related to stress of not feeling well. Who knows.

GUT: She used to only have minor pain around her navel. Since about Oct/Nov, she started having significant tummy pain (right above pubic area) that they chalked up to constipation. She's always been "constipated" but now to the extreme of always needing miralax. So she's gotten used to the norm of tummy pain which was never there at diagnosis. 6 weeks ago, we got remicade and she felt great minus the headache. No tummy pain or joint issues for 2 weeks. About 4 weeks ago, she started with diarrhea. I put up with it for about a week before calling the docs. Her blood work was not really different. Then she flipped to the other side of one or two days with miralax and 2-3 days of diarrhea. In the last week, she started complaining of increased pain (right under the navel) when she stands up in the gut. She had remicade today and her rheumi came to check on her. She noticed that Mallory's gut was bloated, which is not like her...she's a tiny little bean and she is very tender right under her navel. And of course...her numbers...completely normal.

So her rheumy emails our nurse to wonder if they are going to run any stool tests to see about infections in the gut. Her nurse basically said that she thinks this is all due to constipation and I should do another clean out. Why do a clean out when she had diarrhea 2 days ago and still always the pain. She wanted me to do one last monday but I opted not too since she had diarrhea on her own. Our rheumy takes the route that with meds, sometimes your numbers do not reflect what is going on.

I guess I'm frustrated because first of all, diarrhea for us is not the norm. We've only had it once before Crohn's and only once since diagnosis (before remicade). She's not gaining any weight. She eats like a horse and we are just barely hanging on at 60pds. We once were up to 64 but that seems like forever ago. Over the last week, she's also been experiencing chest pain and some weird shortness of breath or something like that. She is also STILL tacacardic which I suppose is her new normal. I just hate all of the belly aches. I swear she is not making it up. She said "why would I want to feel like this." At one point her doc (when she was constipated in oct/nov) insisted she had IBS as well but none of the meds worked so I just stopped using them.

My mom radar says something isn't right since she just seems more in "pain" if you will since remicade started though it made her numbers good. Her under eyes are all dark. It's just frustrating because I miss the "old" life of just shooting her to school and not waiting for them to call. We seemed to have less belly issues when we had bad numbers...just more joint issues. I'm babbling but just wondering what your thoughts are ... am I crazy for wondering. If your numbers are normal finally, aren't you supposed to be symptom free?

 

[Jmrogers4]

Sorry she is going through all this I would be asking about scopes again or maybe in MRE to check for narrowing, partial obstruction.
Keep pushing you are doing the right thing and there are so many kids here whose blood and everything look great but doesn't tell the whole story until scopes or MRE is done.
My son was not gaining any weight either and we started supplemental EN about 3 weeks ago and he has gained weight on it. But based on the lack of weight gain we did scopes 3 weeks ago as well and those looked great so we have an MRE on Monday to look and see if we have narrowing/thickening of bowel walls.
The answers are out there remission would mean - no symptoms but clearly she is having symptoms keep pushing till you find out the answers.
You are a great mom and advocate for your daughter

 

[my little penguin]

remission means symptoms free.clincal remission means numbers are good.
Ds had a similar tale including the fact his Rheumo was the one to push for remicade even though his numbers were good but still felt horrid ( headaches, stomach aches, joint pain, mouth ulcers)
We were also told it must be ibs as well and none of the meds stopped the pain.
Must be a constipation thing since that was his problem.
I don't understand why so many gi's insist constipation is not a sign of active crohns when so many on here have constipation and Active ibd.


I can say after 6 weeks of remicade all the symptoms that were"IBS" went poof ...
Including constipation provided he drinks 20oz of water , a glass of juice , and a cup of pears a day

Now he does still get the occasional stomach cramping bout -last a few data with D.
This has happened twice so far.
Both times levsin stopped the cramping right away. Since we figured out he was suppose to dissolve it under his tongue and not swallow it whole (opps)

Some docs only look at the numbers unfortunately.
It wasn't until ds started with vasculitus did the docs realize the Rheumo was right and the stomach pain, joint pain etc... Were coming from REAL inflammation.

Nothing but hugs
Have they done a fecal caloprotectin recently?

 

[Mallory's Mum]

We had a flex sigmoidoscopy (spelling could be wonky) in November (I think) but that obviously doesn't go far and he wanted to really just check inside the rectum due to her having tenesmus. The tenesmus went away for some but it's been back since 4 weeks ago.

My Rheumy sort of wants them to do the fecal calprotectin to see where she is exactly. At diagnosis, she was 2500+, 1400 around June, and I think that's been our last one.

It feels like such the silent battle we fight here because I often start questioning myself if I'm babying her or if she's blowing it out of proportion. She questions having to take meds because she said they don't make her feel any better.

We had an MRE but it was way back last May maybe...not fun and I'm sure M would just love to have another

We have Bentyl but it is just like taking a sugar pill because it rarely helps the tummy issues.

On constipation, would that cause a tender spot under the navel or wouldn't it be tender everywhere? I get confused because if she's having diarrhea, how could you use the excuse of constipation and the pain is there whether its one or the other.

Maybe I need to send an email to the doc so he really knows whats going on. Most communication goes through the nurse but I wonder how much gets to him word for word rather than a short summary that's often inaccurate.

Ever feel like that crazy parent that pesters the doc to be felt like it's in your child's head?

 

[Mehita]

If you don't pester the doctor, who will? Keep advocating for her! You're doing a good job! Based on what you've said there is obviously something going on. Poor thing... I hope she gets some relief soon.

Things that popped into my mind... like JMRogers4 said, stricture. Constipation as food tries to get through and then diarrhea when it does get through? That could cause pain in that area.

With the mention of headaches and dark circles under her eyes, maybe Celiac disease? I've known so many Celiac kids who've had those dark circles disappear after going gluten free, mine included.

And remember, there is that small area of the intestines that is beyond the reach of a colonoscopy and endoscopy. We've dubbed it Mystery MRE Land. If I have my anatomy correct, that area would also be right around where her pain is.

Just some thoughts...

 

[CarolinAlaska]

Since when does the nurse diagnose the problem? Pain around the belly button often indicates small bowel. Diarrhea can mean diarrhea, but it can also mean obstruction (blockage) that only the liquid part of the stool can get through. Poor weight gain often means small bowel disease too... I think it is time for the docs to re-evaluate.

 

[Sascot]

To me it sounds like she is not in remission! I realise docs use blood tests to keep track of things, but it doesn't always show problems.
My son has had normal blood tests - before diagnosis, during treatment and even now. We cannot use blood tests as a check for inflammation/flares. Our GI nurse has decided to do the faecal calprotectin test every 3 months to check how things are progressing on meds because it is the only test that ever showed anything.
My son had pain around his belly button before diagnosis. We did the 8 weeks exclusive EN and the pain went away. It might be worth trying the EN along with the Remicade to get rid of the inflammation and allow the Remicade to keep it under control.
Keep nagging the docs - I totally understand your reluctance. I had trouble with my daughter for a long time dealing with chronic pain - the hospital wanted to send her to a psychiatrist :ywow: without treating the pain. I pushed and pushed and after she had her appendix out she has been great.

 

[my little penguin]

Ask for another fecal cal we were told they should be run at least every 6 months.
Second the severe constipation can have leakage of liquid around hard stool.
Miralax takes three days to work since fresh stuff has to get out three days worth of old stuff .
Cchmc has a pain management clinic which is very good.
You could ask about a tens unit.
Med less way to help abdominal pain.
DS has one it helps.
When is your next Gi appt?
If not soon I would request an appt soon staying you are concerned and want to have a talk with the GI.

 

[Twiggy930]

We have had the same run around with symptoms persisting but blood work and fecal calprotectin coming back normal and docs saying my son is in remission. It is VERY frustrating. In fact I'd say it is downright devastating. I had a near breakdown on the phone with the GI nurse about it all back in September which got my son an appointment with a GI doc that we hadn't seen before. At that appointment we were told that it was IBS or possibly abdominal migraines in addition to Crohn's. The GI doc instructed us to start my son on a probiotic called TuZen and our pediatrician told us to try giving my son high doses of vitamin B2 to prevent the abdominal migraines. I was completely skeptical that either would work but after about 3 weeks of taking them he was 80% better. It was amazing.

I remain unconvinced that the cause of the symptoms was IBS/abdominal migraines and not Crohn's but the probiotic and vitamin B2 seem to be doing the trick so I'll go with it for now. Recently we tried stopping the vitamin B2 and he started having symptoms again after about 10 days so we have started the B2 up again.

Interesting that we have also found rheumatology to be more sympathetic to reports of symptoms then GI. It seems like GI docs LOVE their test results and will ask you about symptoms but if they don't match the test results they just dismiss them. :angry-banghead:

I hope you find a solution soon. I know all too well the feeling of missing the old days of dropping them off at school and not waiting for the call to come get them because they feel horrid. It is a horrible sinking feeling. It will get better but unfortunately it takes a whole lot of trial and error to get there. :ghug:

 

[Mallory's Mum]

Twiggy930...so funny that the kids seem to be paralleling each other. Even the same diagnosis date. Mid you don't mind me asking the b2 des and if the probiotic can be found in stores. I will try anything to get her feeling normal. It's sad when your kiddo doesn't remember what it's like to not have a belly ache. We never had this bad of belly issues at diagnosis. How is that possible?

We are going in for an MRE on Monday. If that shows stricturimg, we go from there. If no issues, then upper and lower done. I finally said a fat NO to Elavil for their guesstimated diagnosis of IBS or functional abdominal pain on top of crohns...not without everything pointing to remission including biopsies. I've read too that some say that you can't have IBS and crohns...that they are related. Guess that's a "what comes first? The chicken or the egg?" conversation. I'll keep you posted.

 

[Patricia56]

Any new symptoms including presentation of diarrhea in a child with Crohn's, particularly in one whose presentation has historically been constipation, should be investigated prior to treatment or in conjunction with treatment depending on the GI's thinking about the cause.

NEW symptoms should be a big deal. They certainly are to my son's ped GI who's head of one of the leading ped GI IBD clinics in the country.

Investigation in my book means:

A doctor of some kind, preferably the GI but pediatrician would be OK too, lays hands on the child personally. Phone diagnosis by nurse is not acceptable in these circumstances.

Stool tests to rule out intestinal infection esp. C. diff are essential

Comprehensive labs are run. For us that includes:

CBC w/diff
ESR
CrP
Comprehensive Metabolic Panel
Ferritin
Liver panel
Amylase
Lipase
GGT

Time to put on the big girl pants and give the GI a kick in the rear. Or get a 2nd opinion ASAP.

 

[Patricia56]

Also you would do yourself and the docs a favor if you could keep a journal of her symptoms, daily activities, food intake, medication use, fever, # and quality of stools, blood in stool, belly pain and anything else that you feel represents a symptom like her arthritis sx.

Having a concrete record to take with you to GI or fax to them can make a huge difference in how seriously they take you and your information. It also just makes it easier for them because it is quantified data they can use to look for patterns that will help them diagnose what's going on.

Best wishes

 

[ellie]

Just wondering if the tachycardia/chest pain, discomfort/shortness of breath could be costochondritis?


HD

 

[Mallory's Mum]

@patricia56: I've always got my big girl pants on and am a huge advocate for my daughter. Though I talk often with the nurse, obviously our GI doc does put his hands on her as does our rheumy. We too have the head of the GI program as our doctor in a leading Pediatic GI clinic. He is very through but also hates to put the kids through rigorous testing if not necessary. Since my original post, and with the help of some other ideas on here, we (the go team and us parents) are taking a look with all the testing coming up to see what might be going on. We do get blood tests all the time as she gets remicade and those are standard draw practice with infusions. She has always presented with differemt symptoms compared to some and thism eason is why her diagnosis was difficult in the beginning prior to scopes. I do calendar many of your suggestions but not all of them as some do not apply and I cannot be overtaken with complete logging of her life. Might work for some but for me, it boarders on obsessive behavior and my world just can't only revolve around it. I did it in the beginning of diagnosis and all I could think about was trying to figure it all out.

@ellie...I will look up the costochondritis. She did have chest pain at one point last year and the Prevacid did take care of it. Currently, she just has this weird little dry cough. She has awful allergies and I chalk it up to that for now. Their original thought on tachycardia is its relationship to inflammation going on. Her numbers have gone down but not alway forever. It sort of comes and goes. They did evaluate her for Graves' disease due to a high thyroid numbers that ended up being a false positive.

 

[Farmwife]

@ I do calendar many of your suggestions but not all of them as some do not apply and I cannot be overtaken with complete logging of her life. Might work for some but for me, it boarders on obsessive behavior and my world just can't only revolve around it. I did it in the beginning of diagnosis and all I could think about was trying to figure it all out.

I feel very much the same now. I can't do the symptom journal much any more because it was becoming an obsession. I was starting to see things out of fear instead of reality. I still will take note of her labs and things that become troublesome.

HUGS

 

[CarolinAlaska]

Just wondering if the tachycardia/chest pain, discomfort/shortness of breath could be costochondritis?


HD

I'd wonder more about GERD, bronchitis, palpitations, anxiety or a pulmonary embolism... Costochondritis is reproducible if you press on the area of pain... For my daughter it was mostly anxiety and some reflux...

 

[Twiggy930]

I too had to take a break on the whole logging of symptoms a while back. It was making me massively obsessed and depressed. After months of logging all food in take and symptoms I found NO correlation between food and symptoms. I also found that docs were not so interested in my notes, really I think it has at times made them think I am a hysterical mother. I have started logging bad days again (it's easy at the moment as everyday is bad) and I always take note of when certain persisting issues start (i.e. heel pain and stopped weight bearing on foot) and all med changes.

We had an interesting incident back in October with constipation... My son had gone to school and as I was picking him up my daughter came running out of the school saying that her brother needed an ambulance. I went running into the office to find him doubled over and shaking with pain. I had never seen him like this. Apparently it had come on fast right at the end of the day and the office was moments away from calling an ambulance. I decided to nix the ambulance and just take himself to the ER at the Children's Hospital (he had no bleeding, no fever and was not having trouble breathing). It took two teachers to lift him into our van as he could not walk due to the pain. He screamed/groaned in agony all the way to the hospital. I was SURE we were headed into a bowel resection surgery. When we got to the hospital he was whisked into the ER and given morphine. Morphine only slightly dulled the pain. They x-rayed him and concluded he was constipated. I was super skeptical. The ER doc said they would give him an enema and he would feel instantly better. Still skeptical... They gave him the enema and about 3 minutes later he had a BM and felt better right away (my son to this day refers to it as the "magic" enema). It was CRAZY. And the crazier thing was he had had a BM the day before!?!?!?! This has never happened again and I can find NO REASON why it happened that day. GI was not terribly interested in the event.

Mallory's Mum the probiotic (TuZen http://www.tuzen.ca/) and the vitamin B2 can be purchased at the pharmacy here in Canada and no prescription is needed. Now that his abdo pain is back, and he was taking both these things the whole time, I am even more skeptical they did anything for him. However, they are both very benign so they might be worth a try. We also tried Iberogast http://www.iberogast.ca/.

Good luck with the MRE on Monday. My son had one about a year ago and it did not show much. No strictures. Back in September I asked for another scope but the GI doesn't want to do one unless the fecal calprotectin suggests inflammation. I plan to ask again at our next appointment but I expect I will be turned down, I will ask for a pill cam too but that is going to be even more unlikely to be granted. All my son's lab work comes back normal (and yes we get the full blood work done monthly) and 3 fecal calprotectin tests have come back normal (two of them were <50 and one was about 300 which is often quoted as "normal" for a Crohn's kid). His BMs are normal for the vast majority of the time. He as no urgency. He has no blood in BM. Also he is currently on 40mg of prednisone for his enthesitis and he still has the abdo pain (enthesitis is much improved though). I really have to admit that it does look like my son has IBS on top of Crohn's. I fully think the IBS was caused by Crohn's but I do have to concede that the pain now looks to be functional. I think we will be trying Amitriptyline (Elavil) because I don't know what else to do.

 

[Patricia56]

Mallory's Mum -

I sense you took my "big girl pants" comment differently than I intended it. I meant that your post made me feel that the GI needed a powerful (thus big girl) and perhaps rude kick in the butt - not as a criticism of your attempts to advocate for your daughter. My apologies if it came across as anything less than supportive.

I don't like to second guess too much when people post that their child is having new or different symptoms than they have had in the past. In our experience that means something new and different is happening and it needs to be viewed in that light. For a nurse to say it's a new permutation on an existing problem that can be dismissed over the phone is completely inappropriate.

As for the exam, if the Rheumy physically examined her belly (which wasn't clear from your post) and felt GI needed to see her and they couldn't/wouldn't then, if it were my son, I would then take him to his pediatrician.

Based on your post, it sounds like a lot of decisions are being made without a physical exam and without even running any stool tests, both of which I would see as critical steps in formulating a diagnosis and treatment plan. In the presence of diarrhea a C. diff test seems to me to be a given. It doesn't always make you deathly ill but it has to be treated if it's present.

And I think I didn't make myself clear about the sx record. I intended to convey the idea of tracking symptoms when they were different from normal. And I wouldn't encourage any of us to obsess over them. Not good for us or our children. But when something different is happening it can be helpful to have a somewhat more concrete record, particularly when it's a symptom that is appearing and disappearing like that.

I applaud your pursuit of good care and am relieved to hear she is scheduled for an MRE so soon. Hopefully it will bring some answers. If it does not then doing stool testing would seem to me to be a very logical next step.

Best wishes