Unexplained stomach pain

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tarajohns

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Nov 14, 2012
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Hello all, Im new to this site but not new to IBD. My son was diagnosed with crohns at the age of two, he is now eight. We have had a really long road as all of you seem to have experienced. Its exhausting and heartbreaking to watch such tiny children go through such pain. Until now I have tried to continue to do this on my own (with the help of the doctors of course) but have realised that I need the support and knowledge of fellow sufferers. i realise doctors are not gods, they don't know everything and that within a forum such as this, brainstorming and listening to other peoples stories may just broaden my knowledge of this horrible disease.

My son is suffering at the moment and the doctors seem stumped so I thought I would put it out there to see if anybody had a similar story or perhaps even some answers. For five weeks my son has been suffering from unexplained pain, nausea, weight loss from not eating. The pain happens every 20 minutes it is short and extremely sharp, so much so that he screams out and doubles over. The pain is still there afterwards and is constant but he says that pain is a two and the other a ten. He is not eating or drinking very much either and has lost two kilos in this time.

His bloods look OK, crp down, esr only slightly raised as opposed to when he was first admitted to hospital five weeks ago where his esr was at 20 (still not that high) four weeks ago he had his two monthly dose of infliximab in the hospital and has continued to have his weekly injections of methatrixate.

He was scoped the other day and this showed nothing superficially we are just waiting on the biopsies. The doctors are now saying to me that they think the pain is functional pain caused by damage done in previous flare ups and they want him to start pain management therapy and meds. ( I'm not too happy about adding these meds to his already potent cocktail) They even offered the helpful advice that he may be depressed. ( who the hell wouldn't be after five weeks of constant pain, but I know my child and he is not losing weight and having constant nausea because he is depressed...Has anyone else experienced this, where superficially all is fine but microscopically through the biopsies they may find a source for the pain.

Im at my wits end, he can't go to school, he is so pale and thin, constant nausea ( even on zofran), reflux (even after omeprazole) and this pain is so horrible it just comes on so fast his face goes bright red and he drops to the ground. After six years with this disease he has such a high tolerance for pain that I know it must be excruciating.

Has anyone experienced this sort of pain without showing any science based signs of inflammation. Docs are telling me one thing but the anecdotal evidence, that is the state of my boy is saying another. If its just functional pain why would he have all these other horrible symptoms and be wasting away before my eyes.

Sorry for such a long post but Im totally at my wits end and just don't know how long he can carry on this way. Any advice is totally welcome.

cheers tara
 
I am so sorry your child is going through this. Keep on pushing this with the doctors & don't be fobbed off. They don't live with him, you do & see this all the time.
I am sure a parent will be along soon to advise you further.

Take care, my thoughts are with you.
 
Hi and welcome!:)

My Grace is undiagnosed at the moment, so keep that in mind but YES, my Grace suffered from that. Comes in waves and is horrible to watch. We started zantak and that got better. Has he been on ulcer meds? I wish I could share more but Grace's journey has just started. We're getting a second opinion soon. Hopefully more will be done.

Again welcome!:hug:
 
:hug:
That would have been DS we were told it was functional pain.
Scope looked " angry "
First pathologist read biopsies as clean
So we were told functional
Second opinion read biopsies as inflammation still present
In TI and had moved to rectum.
My DS is also 8 but was dx at 7.
Thankfully ( or not) my DS developed vasculitis and mouth ulcers so they knew he was still inflamed somewhere even if they couldn't see it on the scope.
So he was moved from Mtx injections to remicade.
It took a while 3 infusions before he was back to almost normal .

As far as pain management he was given a tens unit
I highly recommend it .
No drugs it works to break up the pain.
Also ask about cognitive behavioral therapy
They use hypnosis to help the children
We have not tried that yet though since his pain is gone except when the remicade wears off.
 
Sarah doesn't have much pain from her crohn's but when she does it is severe.
Sarah's crohn is higher than where a colonscopy can see. Maybe the pain is comming from further up. Maybe an MRI.

Thinking of your boy.
 
I Agree with Catherine about the possibility of the pain being from higher up. Definitly ask about an MRI. Our first doctor kept saying our daughters continued pain was depression as well. We ended up firing him and finding a new doctor. Keep pushing them! I do agree with the pain management though it has helped a lot of kids on this site. Also what about the possibility of doing some enteral nutrition to give him some extra calories and help slow down his weight loss?
 
I'm surprised doctors are diagnosing functional pain when there is nausea and weight loss. Depression can cause decreased appetite but not nausea. Blood work doesn't always correlate with inflammation. I agree with others that there could be inflammation or other abnormality in the intestine not seen by scoping.

Ask the doctor if functional pain causes nausea and weight loss, and if it doesn't, then, what's causing those symptoms. I hope you can get some answers soon and your son is feeling better.

Hugs and Best wishes!
 
Hi Tara and :welcome:

I'm so sorry to hear about your boy and all he is going through...:hug:

I agree with the suggestions of looking at the areas that the scopes don't reach. Has any imaging been done to rule out inflammation and/or stricturing as being the problem?

Where was your son's disease located when he was diagnosed?

Where exactly is the pain located?

What is happening with his bowel motions?

Is he having any extra intestinal manifestations?

Do you think a second opinion is required?

Sorry for all the questions Tara!

My daughter was one of those in which bloods never matched what was going on so now unless what I see in front me matches them I take them with a grain of salt.

Good luck hun, I hope you get solid answers soon and your son finds lasting relief, bless him. :hug:

Dusty. xxx
 
Also - has his gallbladder been checked? Hopefully the doctors will keep looking and not just fob you off with pain meds and telling you to deal.....
 
Wow, Thanks everyone, gosh I feel less isolated through this already.

Your responses are invaluable. I will push for cognitive behaviour therapy before meds if docs insist on the pain being functional. And I agree he needs to have some more scans. Just wondering when you guys say the pain could be coming from higher up, what did you mean by that. Do you think it may be something unrelated to his crohns? He did have an endoscopy and a colonoscopy so presumably apart from areas further down they would be able to see most areas higher up.

In response to your questions Dusty (and thanks so much for your lovely support) Maxies disease was pretty much found throughout his intestinal tract but mostly in his ileum, oesophagus and some other place I cant remember now. His pain is around his bellybutton just below and above and is quite sore to touch. He is opening his bowels once a day and they seem pretty normal to me. He doesnt seem to have any mouth ulcers or fissures at the moment just no apetite, nausea, reflux, pale colouring and this god awful pain still coming and going all the time.

As max is with the childrens hospital at randwick its hard to get a second opinion without treading on toes..but do you mean I should perhaps look paying for a private GI on the sly...

Do you feel an MRI should be done at this point? Are there any other tests out there that I should be looking at?

Again thanks so much, your suggestions have at least given me some direction. Often the doctors wind me up so much and can be so patronising I begin to feel neurotic and think maybe what max goes through is normal. Then I see healthy children and think wow so thats how normal kids look like.

cheers to all, taraxx
 
There is stool test called faecal calprotection? which measures inflammation.. It can be order by a gp. It is not covered by medicare. Cost between $40 -$75 in Melbourne.

The colonscopy can only see the large bowel and first part of the small. My daughter crohn is now 5-10 cm past where the colonscopy can see in small bowel.
 
yes, most of the small bowel cannot be seen by scopes. An MRE would provide some imaging of the small bowel areas.

Also, second the EN suggestion... if it is inflammation, EN is as successful at attaining remission as steroids and has no side effects other than nutritional benefits! However, this treatment means that for a period of approx. 6 weeks, all that is consumed is the EN formula - no food. But, EN can also be used as a supplement, with meds, to help him get his nutrition and help gain some weight.

Good luck!! :ghug:
 
Hi tess,

yes En has helped my son in the past. We have done two months worth EN three times now and the first time worked great second time not so great and third didnt work at all.
It is a great suggestion though and i will order some yummy osmolite to boost him up a bit, if he can handle it with the nausea..Thanks for your advice.

And thanks Catherine I will look into the stool test as well. Its going to be a big push for answers this week..

taraxx
 
In your case, Dusty would know the NSW system better. I think upsetmom daughter is treated at the children's in Sydney.

As you properly know each state medcal system is slightly different.
 
Hey Tara,

With an endoscopy the scope is only able too visualise the oesophagus, stomach and the first part of the duodenum. With a colonoscopy it will visualise all of the large bowel, the caecum, the ileocaecal valve and into the terminal ileum. This then leaves part of the duodenum, all of the jejunum and just about all of the ileum untouched, so most of his small bowel.

Since you son's disease was primarily focused in the ileum to start with this is what I would do...

- Firstly pursue further testing of the small bowel. An MRI Enterograph would be the way to go at this point.

- Faecal calprotectin would be worthwhile although it is more sensitive for disease in the colon.

- Repeat blood tests if the previous tests did not include Iron studies, Folate, B12, Vitamin D, Zinc, Magnesium and calcium.

The reasons I would start with these is...

- His initial disease, although somewhat diffuse, seemed to be concentrated in his ileum and I am assuming this was terminal ileum. Hence why it would be advantageous to rule out disease further up in the small bowel.

- How long has your son been on Infliximab? This drug can be very effective at inducing remission but in doing so can heal inflammation a little too quickly and so cause scarring. So another reason to see if that may be a cause. It may explain the pain and also if scarring is the cause then inflammatory markers (ESR & CRP) may well be normal.

- The reason for the blood tests is to gauge if there is perhaps some malabsorption happening that could also help create a link to inflammation and/or scarring.

Do you know if they have done blood tests for pancreatic enzymes? Pancreatitis may be another thing to rule out and as Paso suggested, his gallbladder as well.

I hear you loud and clear about the docs where you are and treading on toes. ;) So I would have them rule out an obvious physical cause for the pain before moving onto a diagnosis of functional pain. I don't wish to suggest that this isn't the cause but I do feel that more could be done before arriving at that conclusion. If it does indeed come down to that then I would seek a second opinion either privately or perhaps at Westmead. In the interim I don't think it would hurt to consult with the pain management clinic the hospital. They can and often do have very helpful suggestions and methods of dealing with chronic pain.

Good luck!

Dusty. xxx
 
Hi Tara and welcome.

I'm sorry your son is suffering....:hug:
I agree with Tess and Dusty he needs to have an MRE done to see whats happening in the small bowel ...i'm surprised they haven't suggested it.

Take care and all the best

PS: my daughter also gets treated at randwick
 
Hi there,
Thanks for your welcome. Its great to connect with another randwick kids mum. I hope all is going well for your daughter at the moment.

Am going to ask for an MRE next week, Im not sure why they havent done one as we have been in and out of hospital for weeks. I think they feel that with the scope and the bloods its enough to rule out inflammation so therefore the pain must be functional. In their defence he is already on methatrixate injections and infliximab two monthly so Im guessing adding steriods into that mix would make it all a very toxic combination.

I just want to make sure that whatever we do that nothing is missed. Either way he cant continue in this amount of pain.

all the best, Tara
 
Thanks for asking for about my daughter.... She's good at the moment.
A few weeks ago she started to get diarrhea and pain.... She was put on flagyl which took a while to settle things.....we were told that any flare she has from now on would be treated with antibiotics as they didn't like to treat it with steriods.

I find it very hard to get in touch with the nurse when we have a problem....she doesn't return my calls so i have to keep ringing....:voodoo:

Also i don't understand why they haven't done an MRE on your son....that was the first thing they wanted done when we first attended the clinic....Now she's looking at having another one done because the MRE wasn't done at their hospital...they apparently don't trust anyone else..:yfaint:

I hope they figure out what is wrong with your son...there's nothing worse than watching your child suffer and not being able to help them.

Take care
 
Upset mom: It is sooooo frustrating when nurses or doctors don't return your calls, especially after they tell you to call them with problems. I would definitely give the doctor and nurse feedback on this.

Tarajohns,
Dusty wrote " I don't wish to suggest that this isn't the cause but I do feel that more could be done before arriving at that conclusion." While the pain could be functional, it is a difficult diagnosis to make in the setting of Crohn's and weight loss is a "red flag" that requires an investigation (or at least an explanation). I speak from experience as someone who worked with specialists to sort out similar issues in children in a tertiary care center some years ago.
 
Hi Tarra, so sorry to hear all the pain your child is going through! Dusty mentioned my first thought, reading your thread, in her first response. Pain around the belly button is classic crohns pain, which is prob why the doc guesses functional. BUT....nausea and very severe pain in that area at the same time, are classic partial obstruction symptoms. Which would mean a stricture in the small intestine, where a scope may not reach. If your child has been diagnosed for 6 years, and is having weight loss and such intense pain now, then it's surprising your gi isn't pushing for MRI or ct scans. You can have normal inflammation markers, as strictures are caused during flares, but scar tissue remains in the bowel after inflammation has been treated. So best wishes getting an MRI, and if it dosnt show anything, I'd ask for a ct. if pain is that severe, a left stricture can cause abscesses, and full obstructions. Good luck with everything xoxo
 
hi Irene,

Thanks so much for your reply. We are meeting with the gastro team at clinic on Wednesday so Im hoping for something to come from that. My son is still in so much pain, worse when he eats and severe spasm pain every fifteen minutes or so. The pain is sometimes constant and he says that it rates a 6/10, the spasm pain is an 11/10. He looks terrible and Im really worried.

Would a stricture cause spasm pain? he is still constantly feeling sick and apetite still low.Doctor said they dont want to radiate him with the MRI and are still following the pain management course. It just doesnt seem right to me. Functional pain coming on that suddenly after six years. And what of all the other symptoms?

Feeling helpless, do you think I should push again for an MRIscan, would this show any strictures etc?

Thanks again everyone,
tara
 
I would push for an mre .
There is no radiation with the mre only with a ct scan.
So I am puzzled why they wouldn't order the scan.
Hope your meeting goes better on Wednesday .
 
Tara keep pushing for the MRE...your son shouldn't be suffering like that.

Good luck with your appointment.
 
Last edited:
I'm be push for an MRE as well.

Sarah second one in 10 months, was done due to a high faecal calprotectin, also her other result and are normal.

Good luck.
 
You know your son best.
Make them explain what you see in front of you.
If they can't move on to another that can.
Hugs to both of you.
I hope it gets better.
 
Tara - I had a stricture last year, the "spasm pain" that your son is having sounds similar to the type of pain I was having. It hurt all the time, worse after eating, and I was vomiting everything. My (former) GI also tried to convince me I was depressed.

I've had pancreatitis, and gallbladder pain. Both can take your breath away and bring you to your knees. Hoping your son gets some answers soon.

Best of luck.
 
SarahAnne,

How long did you have the pain and the vomiting before the stricture was diagnosed- days? or weeks? Do you remember if you went to the bathroom normally during that time or did you have constipation? I'm trying to get a handle on the symptoms of partial obstruction and strictures.

Thanks!
 
My situation was a little different, which is why I don't see that GI anymore. I had a bowel resection when I was 19, and years of inflammation and scarring left me with a stricture at my TI, where I had surgery. My GI knew about the stricture, I had it for 3 years. It was discovered at my yearly colonoscopy. My GI opened the area with balloon dilation while he was in there. The dilation helped, it lasted most of the year. At my next scope, he dilated the area again. I was on Humira (didn't work), and the dilation only lasted about 6 months before I was in severe pain again. I kept taking my meds and losing weight. I had to quit my job because I couldn't stand up. A month later I had another scope and another dilation, didn't even last 2 months.

I kept calling, I was losing weight, vomiting everything. My GI had the nerve to order a pelvic exam and tried to increase my zoloft (I refused). He was sure it was female problems or depression. I ended up seeing another GI, and having surgery. I was vomiting everything because the stricture had narrowed to less than 2mm. Nothing could get through.

I have shortened bowel, so diarrhea is always my problem. A stricture can make it difficult for things to get through, but the intestines may still spasm, making your son feel as if he has to go. That could cause a feeling of constipation if the urge is there but there is nothing present to come out.
 
How are things going Tara?

How did the appointment go?

Thinking of you! :hug:
Dusty. xxx
 
Hi, I'm not entirely sure how I managed to miss your entire thread, sorry! I hope your appointment went well and you managed to get some proper help. Your docs sound like my daughter's - they are offering her help from a psychiatrist to "help her deal with the pain" (fixing the pain would work better I think :ybatty:) and I can see them thinking "non-specific pelvic pain" as they roll their eyes at my nagging them to help her again!
 
OK well its been a while but I wanted to get back to all you wonderfully helpful people with an update on my son.

What a road. Finally we had an MRE scan. This showed constipation and absolutely nothing else. His bloods are still good (as of several weeks ago) biopsies from scope pretty clear. but PAIN still persists. Docs had him on large doses of osmolax to clear constipation but to no avail.

The pain still persists, the nausea, not eating, reflux all still there but today at clinic we finally may have found a cause.

Docs think he has neuralgia. A new pain pathway has been created in his brain that causes his belly to spasm, apparently it comes with all the other mentioned symptoms as well. Possibly caused in part from the many years of living with his IBD. Has anyone else heard of this happening in kids?

The doctors are referring him to the pain management clinic and want him to start a new drug called endep. That would mean he will be on methatrixate, infliximab, anti nausea drugs, omeprazole, osmolax and now they want to add anti depressant drugs to block his pain receptors. He is eight..

Has anyone else had kids who have taken endep. Im so worried about putting him on this drug but whats the alternative, chronic intense pain racking him every fifteen minutes. Thats no quality of life.

We have another three weeks till pain clinic but they want him to start this drug straight away. Does anyone know how long it will take the pain clinic to train his brain to not listen to this new pain receptor? Will he be on these new meds forever? would love to hear from anyone who has been on this drug re side effects, did it work/not work?

Sorry for the long update. Ive been waiting to post again until Ive had something solid to go on and its been a long road to get here. Still not sure that this is what is causing this pain but have nothing else to go on. Though this seems the most plausible scenario to date.

Thanks for all your support, tara:)
 
Hugs ..
They told us something similar for DS about three months ago.
Pain clinic put him on a tens unit and wanted us to add gabopentin or neurotin .
We decided to give remicade a little more of a chance , use the tens unit, and switch out his ppi ( Prevacid) with Zantac / Zyrtec - h1/h2 blockers since they control mast cells which degranulate and send pain signals to the brain.

Gi is not sure what fixed him or what he fixed since blood work was normal / as was the MRE but everything stopped- no more constipation( even with miralax at a high dose), vomiting , joint pain, vasculitis etc...
All gone. Until right before the next remicade infusion.

Hope the drugs work for your son.
My son is 9.
 
thx little penguin (we sound like super spies)

I really appreciate the speedy reply.Just wondering, is gabopentin and neurotin similar drugs to endep? and did you say that drugs like zantac/zyrtec can be used to block the pain signals? how did you find the tens unit, should I try that before the endep perhaps tax
 
Tara,
my daughter's last hospital visit was because of pain, had nausea, constipation, stomach spams, she had rectal pain as well. she couldnt poop, felt the urge but couldnt go. the doctors kept pushing miralax and suppositories, nothing helped. she eventually threw up the miralax and was in so much pain i thought she was going to faint, when she begged me to take her to the ER i knew she was hurting. like your son, her blood work was fine, no fever. A few days later they ordered a MRE, it showed a large ball of stool and "possibly" a fissure. i begged for a rectal steriod, i knew if she just pooped the pain would go away, finally after days of suffering they gave her the rectal steriod foam. within 10 mins she pooped, the stomach spasms disappeared as well as the rectal pain immediately. she was put on the flagyl for the possible fissure and is still on that. hope this little bit of information helps. i hope your son feels better soon, hugs to you both.
 
Hey tara,

I have no personal experience with neuropathic pain but have seen antidepressants, Endep (Amitriptyline), used to treat it but in my line of work they have tended more toward the anticonvulsants.

If you put SSRI's into the search you should bring up come old threads about antidepressants and Crohn's pain and I will also tag kimmidwife into this, IIRC her daughter may have been advised to go down the neurontin path.

Good luck!

Dusty. xxx
 
I wish I had some proper advice for you, but unfortunately I can just send my best wishes. I know when Amy had her bad pains it was Gabapenton they wanted to put her on, but it does have quite a few side effects. I guess, it depends on the trade off - if the side effects are worth getting rid of the pain. Good luck with whatever path you end up taking. I really hope it helps get rid of the pain.
I gather they have definately ruled out the gallbladder? Just rang a bell when you said it was really bad 20 mins after eating.
 
My son also had pain (right around his belly button too) without any clear positive test results. He tried amitriptyline for a couple of weeks but found it contributed too much to his fatigue. There are some folks in the Undiagnosed club that take it and find it does help with some of the pain. Good luck!
 

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