:mad2: My son was diagnosed with Crohn's a few months ago. Since then he's been in and out of hospitals with frequent blockages! But today was the last straw with his current hospital. He went in with pain and blockage. Normally he gets NPO, pain and anti-flammation meds via IV til he's ready to come home then after he eats a solid meal he leaves At this point I believe he has a stricture at one point that might need to be resectioned. But today the no count arrogant internist tells us he's too dependent on pain meds ,needs to get his mind "right" and to find a job and get active. Meanwhile he's catching 5 or 10 minutes of sleep at a time and waking up moaning in pain his belly is distended and he has no appetite. I told her that wasn't right and he needs help!! She tells me his x-rays have come back normal and so has his blood work. I told her Crohns can be sneaky and there is something they're missing.
About to blow my stack!!!!
- Thread starter maxx445
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Trysha
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Hi Maxx
Sorry to hear you are having terrible problems
Is there another hospital you could take him for treatment?
Some of these docs can be woefully inadequate to say nothing of their arrogance
Could you perhaps find a good GI consultant?
Regular xrays and even cat scans do not always show the obstruction----this has happened to me,so you are right to persist in your efforts for him
Hopefully someone on the forum can help
Hope he feels better soon
Hugs
Trysha
Sorry to hear you are having terrible problems
Is there another hospital you could take him for treatment?
Some of these docs can be woefully inadequate to say nothing of their arrogance
Could you perhaps find a good GI consultant?
Regular xrays and even cat scans do not always show the obstruction----this has happened to me,so you are right to persist in your efforts for him
Hopefully someone on the forum can help
Hope he feels better soon
Hugs
Trysha
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Sorry to hear he is in pain.
Does he have a regular gi?
What maintence meds is he on?
Where is his disease located ?
Has he had a ct or mre scan recently ?
Does he have a regular gi?
What maintence meds is he on?
Where is his disease located ?
Has he had a ct or mre scan recently ?
He's on Pentasa, Prednisone, Mercaptopurine, Oxycodone, sometimes Percocet a multivitamin, fish pills and probiotics. I don't know the milligrams of each. He has a regular GI but he is too far away and sometimes has a flareup before the man or his assistant can be reached. The internist claimed she'd consulted his records but I don't believe her. He is also on a low residue diet. He has had a few bouts of depression which he is trying to get treated for. He's had CAT scans and a colonoscopy but they claim he has been diagnosed with "something like Crohn's but not quite. He's not allowed any more CAT scans or MRI due to cancer risk. We are trying to get him to go to Hopkins for a second opinion and another closer GI. I believe his is located in the large colon because he's prone to blockages and obstructions.
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maxx445,
My son has a severe case of stricturing Crohn's. VERY DIFFICULT TO LOCATE AND DIAGNOSE!!!!! Take heart, you are probably correct. When scans, scopes and xrays can't/don't locate the problem...the docs just don't know what to do with it.
I tell you, our biggest breakthrough came with our first pill cam study! Not because the images revealed anything useful...they did not. It was a breakthrough because the camera got stuck. They had to go in to remove it surgically. When they went in to get it...finally, for the first time in four years, they saw how bad his disease was. They saw why he was in so much pain. They realized all the meds they were using (same as you are using) were not working and we needed a drastic change.
They removed 35 cm of his small bowel and resected. He started Remicade shortly after that. That was his first 18 months of peace since the onset of his disease.
So, crazy as it sounds...I love the pill camera for its ability to get stuck and show the doctors where the real problem lies!!!
Hugs to you and best wishes.
Cheryl VT
My son has a severe case of stricturing Crohn's. VERY DIFFICULT TO LOCATE AND DIAGNOSE!!!!! Take heart, you are probably correct. When scans, scopes and xrays can't/don't locate the problem...the docs just don't know what to do with it.
I tell you, our biggest breakthrough came with our first pill cam study! Not because the images revealed anything useful...they did not. It was a breakthrough because the camera got stuck. They had to go in to remove it surgically. When they went in to get it...finally, for the first time in four years, they saw how bad his disease was. They saw why he was in so much pain. They realized all the meds they were using (same as you are using) were not working and we needed a drastic change.
They removed 35 cm of his small bowel and resected. He started Remicade shortly after that. That was his first 18 months of peace since the onset of his disease.
So, crazy as it sounds...I love the pill camera for its ability to get stuck and show the doctors where the real problem lies!!!
Hugs to you and best wishes.
Cheryl VT
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Has he seen a pain management doc?
Since the pain meds can cause constipation or make things worse they already are ...
Hope you can get in for a referral soon - regular docs are generally not equipped to handle crohn's .
If crohn's is under control then pain meds are generally not needed
MRI have no radiation so there is no limit on those
Only ct scans have radiation and X-rays of course
Since the pain meds can cause constipation or make things worse they already are ...
Hope you can get in for a referral soon - regular docs are generally not equipped to handle crohn's .
If crohn's is under control then pain meds are generally not needed
MRI have no radiation so there is no limit on those
Only ct scans have radiation and X-rays of course
She's talking about giving him a "regular lunch" and sending him home tomorrow or Monday. He says his kidneys feel odd and he has hot flashes. I asked her how can she send him home in pain?? We had the same problem with another hospital earlier so we decided not to use that one anymore. I thought we could trust these people at least. He can barely hold a conversation due to the pain and it's all in his head? I assured her that when he has good days he's quite active and how the heck can he hold down a job with moderate to severe Crohns?
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Once crohn's is under control there should be very little limitations
The problem is getting it under control.
You really need a GI your son Can visit regularly to get the disease under control.
The difference is night and day.
DS on 6-mp most days he was curled in a ball barely able to go to school etc..
On humira - he swims competitvely , attends school eats whatever etc... No real Gi issues .
The problem is getting it under control.
You really need a GI your son Can visit regularly to get the disease under control.
The difference is night and day.
DS on 6-mp most days he was curled in a ball barely able to go to school etc..
On humira - he swims competitvely , attends school eats whatever etc... No real Gi issues .
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Here's a thought...does the hospital have a GI on call? Rather than having the general internist make these evaluations, can you ask for the specialist to see him before he is released? Also, you may be able to plead your case with the hospitalist.
As far as the diet goes, if there are strictures, being able to eat a "regular" lunch will not mean that all is well.
My son also has had extreme constipation along the way. It is due to the stricture. Food cannot make it's way past the strictures in the normal amount of time, so more liquid is lost, causing the constipation. Miralax is useless. We've done mineral oil, which given in enough quantities, over a long enough period of time has helped to "lube" the GI tract enough to move things along...but it isn't fun.
Doctors tend to think constipation is a diet or holding problem. You're the mom. You know best. But, doctors need something they can relate to and understand. So, try keeping a journal of what he eats and his bowel habits. It may prove helpful in a future GI visit.
How old is your son?
Good luck.
Cheryl VT
As far as the diet goes, if there are strictures, being able to eat a "regular" lunch will not mean that all is well.
My son also has had extreme constipation along the way. It is due to the stricture. Food cannot make it's way past the strictures in the normal amount of time, so more liquid is lost, causing the constipation. Miralax is useless. We've done mineral oil, which given in enough quantities, over a long enough period of time has helped to "lube" the GI tract enough to move things along...but it isn't fun.
Doctors tend to think constipation is a diet or holding problem. You're the mom. You know best. But, doctors need something they can relate to and understand. So, try keeping a journal of what he eats and his bowel habits. It may prove helpful in a future GI visit.
How old is your son?
Good luck.
Cheryl VT
DustyKat
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I’m so sorry to hear about your son and what he is suffering through. 
With the repeated hospital visits he clearly isn’t under control at this point and until that happens the pain will remain an issue for him. I do think you need to get him referred on and I hope you can get him into Hopkins or at least in with a decent GI that is more accessible.
Blockages do occur in the large bowel but are more frequently a feature of small bowel disease. If your son’s Crohn’s is still not controlled then the longer this goes on the greater risk of scar tissue developing and once that occurs you run into other issues, namely medication won’t work to alleviate symptoms and the likelihood of surgery increases significantly.
As mlp has pointed out, MRI/MRE does not involve radiation so he is able to have as many as these type of tests as is needed. I would request that he have an MRE done as a starting point.
Do you know what bloods he has done?
Has he had a faecal calprotectin done?
Bear in mind this…the medication your son is taking may well have taken care of acute inflammation and is keeping him in a state that returns normal blood and FC results BUT that doesn’t mean he doesn’t have scarring that is producing the symptoms he has. Scarring won’t always produce elevated inflammatory markers.
How old is your son?
Sending warm wishes your way and welcome aboard!
Dusty. xxx
With the repeated hospital visits he clearly isn’t under control at this point and until that happens the pain will remain an issue for him. I do think you need to get him referred on and I hope you can get him into Hopkins or at least in with a decent GI that is more accessible.
Blockages do occur in the large bowel but are more frequently a feature of small bowel disease. If your son’s Crohn’s is still not controlled then the longer this goes on the greater risk of scar tissue developing and once that occurs you run into other issues, namely medication won’t work to alleviate symptoms and the likelihood of surgery increases significantly.
As mlp has pointed out, MRI/MRE does not involve radiation so he is able to have as many as these type of tests as is needed. I would request that he have an MRE done as a starting point.
Do you know what bloods he has done?
Has he had a faecal calprotectin done?
Bear in mind this…the medication your son is taking may well have taken care of acute inflammation and is keeping him in a state that returns normal blood and FC results BUT that doesn’t mean he doesn’t have scarring that is producing the symptoms he has. Scarring won’t always produce elevated inflammatory markers.
How old is your son?
Sending warm wishes your way and welcome aboard!
Dusty. xxx
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Liver and hot flashes are not connected to Crohn's. And if he isn't regularly seeing a GI regularly, forget getting pain meds regularly. Plus, oxycodone AND Percocet are too much for almost any Crohn's condition.
DustyKat
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There are liver conditions that are an EIM (Extra Intestinal Manifestation) of Crohn’s…
http://www.crohnsforum.com/showthread.php?t=9747
…plus there are the medication side effect related issues.
Which reminded me of you stating that he felt he had something going on with his kidney/s, has he said why he feels that? Is it pain related?
There are also conditions of the kidney that can arise as an EIM of Crohn’s. My children have had kidney involvement due to inflammation of the terminal ileum.
http://www.crohnsforum.com/showthread.php?t=9747
…plus there are the medication side effect related issues.
Which reminded me of you stating that he felt he had something going on with his kidney/s, has he said why he feels that? Is it pain related?
There are also conditions of the kidney that can arise as an EIM of Crohn’s. My children have had kidney involvement due to inflammation of the terminal ileum.
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If you aren't checking in regularly with a GI, you're most likely screwed in the ER. That's just the way it is.
pretty sad you couldnt meet a GI at the ER. Try to meet yours asap or if yours have a history of being hard to reach and get in touch, I suggest you get a new one. Its is really important to have a GI easy to reach within days or who works with a team that can relay when he/she is away.
He is 20 years old. We are searching for a closer GI this time in a different location. I asked that internist if anyone had called his GI that's when she made the snippy comment about looking at his colonoscopy records from his GI and the not quite Crohn's remark. Faecal calprotectin? My son said his kidneys were on fire and he had vomited in the hospital but it was bile. He passed a stool there but it took too long and it was hard and bricklike. The doctor claimed his painkillers had caused his constipation. They've got him on Flagyl, protonics and an IV for hydration. He gets a little Percocet here and there but she's adamant he get no painkillers via IV.
Your GI should be getting in contact with you. Is it because it's the weekend? Doesn't your GI office have "On call" GI's? So sorry to hear all this. I hope you get answers soon.
So sorry to hear of all you're going through with your son. Keep fighting on his behalf and don't lose hope. I hope he gets the medical support he so deserves soon.
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I am just figuring everything out. But, from my experience magnesium does a great job keeping stools soft. I have intense bleeding, pain, and firmer stools when I don't take my magnesium pills. I take between 4-8 (100 milligram) magnesium citrate capsules a day. Ask someone what they think in your son's case. Hope he feels better soon!
He was using the Natural Calm powders in his drinks for a while because the extra magnesium not only eased his bowels but helped him sleep. I will ask him if he's still using them Sunshine. I made an appointment for him to see a new GI closer to the house as well. I am beginning to calm down now though I am mulling filing a complaint against that doctor. :facepalm: I still can't believe her gall. He is now home though tired still in some pain and a little grumpy. They also have him on an anti-depressant though I don't know which one as of yet.
Yay he goes to Johns Hopkins tomorrow for testing and hopefully better treatment options. He's also been to a new GI who is closer to home and that follow up appt is 2 weeks from now. He seems to be able to eat but has gone from constipation to diarrhea though he's said he can now eat less dairy so we're experimenting with soy cheese to see if it is edible or can be passed by.
