Hi All - My 19-year-old son has been diagnosed with Crohns for a year now and has not really had many problems. We talk to his GI doc and tell him he has had a "flare." He says his ideas of flare and our ideas of flares are different, but can't pin him down on what his ideas are. My problem is son has been bleeding slightly for a few days and we are not sure if this is just normal and going to happen on occasion or something to be alarmed about. He is afraid for me to call doc and ask for fear he will be sent to have a colonoscopy the next day. He is on Pentasa, but I know he misses doses. I appreciate your help!
New here with probably a stupid question
- Thread starter Maverick46
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Hi and welcome.
Sorry not much advise here. My girl is 3 1/2. She's still of age where I can force her to take meds. :ybiggrin: We'll see how it goes when she's a teen.:shifty-t:
More parents will be on their way to answer your questions.:thumright:
Just wanted to say hi.
Farmwife
Sorry not much advise here. My girl is 3 1/2. She's still of age where I can force her to take meds. :ybiggrin: We'll see how it goes when she's a teen.:shifty-t:
More parents will be on their way to answer your questions.:thumright:
Just wanted to say hi.
Farmwife
Hi and welcome. this is totally NOT a stupid question at all 
I expect you will get some good replies. I do not think ocassional blood in stool should ever be considered normal/acceptable ... but I am not a doctor and hope you get some other replies. I would hope remission means normal ... and bloody stools is not normal. Is Pentasa the only medication your son is taking? Some other doctors do regular stool inflammation testing (fecal calprotectin or lactoferrin) or blood work (ESR, CRP) to monitor patients ... has your son had these test recently? (His guess of a planned colonoscopy may be right)
I expect you will get some good replies. I do not think ocassional blood in stool should ever be considered normal/acceptable ... but I am not a doctor and hope you get some other replies. I would hope remission means normal ... and bloody stools is not normal. Is Pentasa the only medication your son is taking? Some other doctors do regular stool inflammation testing (fecal calprotectin or lactoferrin) or blood work (ESR, CRP) to monitor patients ... has your son had these test recently? (His guess of a planned colonoscopy may be right)
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We have a 18yr old son that has had a terrible bout with Crohns. He used to bleed. We discovered it was internal hemorrhoids. We have 2 sons that had Crohns. The "had" I would have to explain. I would not be overly alarmed. But there are steps we took to send their Crohns packing. Diet, and Supplements. Please read our recent post. We would be happy to share with you our experiences.
crohnsinct
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My daughter is a bleeder from time to time and our doc does not get overly excited about blood especially if not accompanied ith diarhea, stomach pain etc. ..BUT I would think if that is not typically something that happens for your son it would be something the doc would want to know. When was the last time your doc saw your son? Did tests etc? I would call and report the blood and take it from there...your son might have to deal with worse than a colonoscopy if you let a flare go untreated for too log. FWIW our doc doesn't do colonoscopies often. He likes to rely on ho the child looks, reports from home, blood and stool tests and will only scope if what he sess in front of him and reports do not match blood tests so maybe just maybe he won't have to be scoped. Good Luck! I hope he is feeling better soon.
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Maveick46
I just wanted to say no question is a stupid question. We are here to help. I had a problem with my daughter remembering to take her meds so I bought her one of those daily pill reminders where you put the pills inside it weekly. (they happened to mention it on another post today). Since I bought it we have had great improvement in her pill compliance. Like some others mentioned Iwould definitely call the doctor for blood in the stool.
I just wanted to say no question is a stupid question. We are here to help. I had a problem with my daughter remembering to take her meds so I bought her one of those daily pill reminders where you put the pills inside it weekly. (they happened to mention it on another post today). Since I bought it we have had great improvement in her pill compliance. Like some others mentioned Iwould definitely call the doctor for blood in the stool.
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I don't entirely get the flare idea either. I think I can understand it in terms of an asthma attack: it's always possible, but something can trigger it, and it can vary in intensity. It seems their bodies are in a fine balance, medication keeping them there, but something can tip the balance for awhile. It's a gray area between flare and failing medication, though, not sure how long a flare is really defined as vs falling out of remission. Agreed tho, there are no dumb questions!
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Hi Maverick,
Welcome I'm with the 'confused about flares/remissions' crowd! :blush: However, if my son had blood, especially if it's not a typical symptom, I would call the GI.
But, I don't think blood necessarily means a 'flare' in the sense that inflammation is out of control. Depending on the amount and/or colour of blood, it could be from hemorroids or fissures (both of which may or may not be directly caused by crohns, ie people without crohns also get hemorroids and/or fissures).
My son periodically has constipation or 'harder' stools for 2-4 days, when this happens, he sometimes ends up with a fissure. But, in his case, a bit of prune juice takes care of the constipation quickly and, when necessary, a few days of sitz baths with epsom salts takes care of the fissure(s). As these symptoms disappear so quickly and simply, I don't really think they are 'flares' any more.
While I'm definitely not the most experienced in this, I believe that if it is brighter red, it is more likely to be from the 'end' of the GI system (i.e. rectum), if it is darker or mixed in the stool, the blood may be coming from further up (large or small bowel). Anyone, please jump in and correct if I'm wrong!!
As for the colonoscopy, as Crohnsinct said, if he doesn't have it checked, your son may have to deal with worse! But, a colonoscopy is not necessarily a given - GI may schedule an MRE or a pillcam (if a pillcam, make sure you're son is given a dissolveable 'dummy' pillcam first - I've read of instances where the real pillcam gets stuck, resulting in surgery!).
How often is your son being tested for Crohns activity? My son was also diagnosed just over a year ago and has been fairly stable but recently is showing signs that his crohns may be becoming more active. But, even though he has been 'stable' and feeling well, since his diagnosis May 2011, he has been monitored through blood tests approx. every 3-4 months and has had 3 ultrasounds and 2 MREs to monitor his crohns since diagnosis (only had a colonoscopy at diagnosis).
Let us know how he is :ghug:
Good luck!!
Welcome
I'm with the 'confused about flares/remissions' crowd! :blush: However, if my son had blood, especially if it's not a typical symptom, I would call the GI. But, I don't think blood necessarily means a 'flare' in the sense that inflammation is out of control. Depending on the amount and/or colour of blood, it could be from hemorroids or fissures (both of which may or may not be directly caused by crohns, ie people without crohns also get hemorroids and/or fissures).
My son periodically has constipation or 'harder' stools for 2-4 days, when this happens, he sometimes ends up with a fissure. But, in his case, a bit of prune juice takes care of the constipation quickly and, when necessary, a few days of sitz baths with epsom salts takes care of the fissure(s). As these symptoms disappear so quickly and simply, I don't really think they are 'flares' any more.
While I'm definitely not the most experienced in this, I believe that if it is brighter red, it is more likely to be from the 'end' of the GI system (i.e. rectum), if it is darker or mixed in the stool, the blood may be coming from further up (large or small bowel). Anyone, please jump in and correct if I'm wrong!!
As for the colonoscopy, as Crohnsinct said, if he doesn't have it checked, your son may have to deal with worse! But, a colonoscopy is not necessarily a given - GI may schedule an MRE or a pillcam (if a pillcam, make sure you're son is given a dissolveable 'dummy' pillcam first - I've read of instances where the real pillcam gets stuck, resulting in surgery!
).How often is your son being tested for Crohns activity? My son was also diagnosed just over a year ago and has been fairly stable but recently is showing signs that his crohns may be becoming more active. But, even though he has been 'stable' and feeling well, since his diagnosis May 2011, he has been monitored through blood tests approx. every 3-4 months and has had 3 ultrasounds and 2 MREs to monitor his crohns since diagnosis (only had a colonoscopy at diagnosis).
Let us know how he is :ghug:
Good luck!!
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I also think of a flare the way jenn said like an asthma attack. I wonder if we are correct on that? It really is a grey area.
Tess,
What you said about the blood in stool I think you are correct the way you explained it.:smile:
Tess,
What you said about the blood in stool I think you are correct the way you explained it.:smile:
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Our son was dx less than a year ago and we are still in a steep learning curve. If I understand the gi nurse some kids have ibs in addition to ibd. So what may appear to be a flare may not be ibd related, but be ibs. When I said son starts to have D when he is tired, was told that would not necessarily be a flare. Still very gray area for me too, but a little less stressed than I was
Where do I look for your recent post? I want to read about the supplements you used to get rid of crohn's??? Thankyou so much!
DustyKat
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@723crossroads. This is the post you would be looking for...
http://www.crohnsforum.com/showthread.php?t=39434
@markdmississippi. It certainly sounds like you have found a way to tackle your son's Crohn's! It is wonderful to hear that he is has responded so well. Just one thing though, is there any reason why the information regarding your son positive outcome can't be posted on the forum but has to be obtained via email?
Hi Maverick and :welcome:
I agree! No such thing as a stupid or dumb question around here! Believe you me, if we haven't asked it we surely have been thinking it! :lol:
You have been given fab advice already so that just leaves me to say good luck and I hope your boy is soon on top of things again!
Dusty. xxx
http://www.crohnsforum.com/showthread.php?t=39434
@markdmississippi. It certainly sounds like you have found a way to tackle your son's Crohn's! It is wonderful to hear that he is has responded so well.
Just one thing though, is there any reason why the information regarding your son positive outcome can't be posted on the forum but has to be obtained via email? Hi Maverick and :welcome:
I agree! No such thing as a stupid or dumb question around here! Believe you me, if we haven't asked it we surely have been thinking it! :lol:
You have been given fab advice already
so that just leaves me to say good luck and I hope your boy is soon on top of things again! Dusty. xxx
Thank you all so much! I'm sorry for the delay in getting back. It is nice to know that I am not the only one out there unsure of things. My son's first symptoms were just bleeding, and I guess I thought once he was on meds that this wouldn't happen. He says it does happen occasionally, though this bout had lasted a little longer. His initial workup included a colonoscopy with biopsy, which the biopsy did NOT return positive for Crohn's, then had a blood test, which did NOT return positive for Crohn's, yet GI doc insists he has Crohn's and these are false negatives . . . so I'm really confused!
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Hi Maverick,
Crohn's can have 'skip' areas - some areas may have inflammation, some areas fine, my understanding is that the biopsy may be taken from one of the 'good' areas and not indicate 'crohns' directly (although there would be other indications other than the 'biopsy' alone). As for the blood test, was it the Prometheus (spelling??) test? If yes, my son did not have this but, again my 'understanding' only, is that this test is not 100% accurate and gives GIs only one indication. Also, just to confuse you even more, some people do not reflect crohns activity in their blood results! Ugghh! I know there are a number of parents whose children's test results are 'normal' yet they have active crohns. Very, very frustrating!
You might want to have a look at Enteral Nutrition. It's a treatment that is commonly offered around the world but,for some reason, not as often in the U.S. It has a comparable success rate at inducing remission as steroids, has no side effects, provides easily absorbed nutrition and has anti-inflammatory properties. It can be used together with other meds. It is a formula that is either ingested overnight through Naso-Gastric tube (as my son does) or by drinking shakes. There is a subforum under Treatment for Enteral Nutrition and, as my son has used EN for the past year, I'm happy to share his experience with it.
Good luck! I hope your son finds that the bleeding has been only 'random' episode and clears up!! Let us know :ghug:
Crohn's can have 'skip' areas - some areas may have inflammation, some areas fine, my understanding is that the biopsy may be taken from one of the 'good' areas and not indicate 'crohns' directly (although there would be other indications other than the 'biopsy' alone). As for the blood test, was it the Prometheus (spelling??) test? If yes, my son did not have this but, again my 'understanding' only, is that this test is not 100% accurate and gives GIs only one indication. Also, just to confuse you even more
, some people do not reflect crohns activity in their blood results! Ugghh! I know there are a number of parents whose children's test results are 'normal' yet they have active crohns. Very, very frustrating!You might want to have a look at Enteral Nutrition. It's a treatment that is commonly offered around the world but,for some reason, not as often in the U.S. It has a comparable success rate at inducing remission as steroids, has no side effects, provides easily absorbed nutrition and has anti-inflammatory properties. It can be used together with other meds. It is a formula that is either ingested overnight through Naso-Gastric tube (as my son does) or by drinking shakes. There is a subforum under Treatment for Enteral Nutrition and, as my son has used EN for the past year, I'm happy to share his experience with it.
Good luck! I hope your son finds that the bleeding has been only 'random' episode and clears up!! Let us know :ghug:
i REALLY don;t have a clue how to ask questions on this website, \hoewever my son is been having cramps almost daily now, and it hurts when he poo's. Some time there is blood in his stool/. \\he was diagnosed over a year ago and is taking azathioprine 100mg. I was hoping some of these symthoms would eventually go away but seems to be on the increase. Does anyone else have these problems and is this now considered normal for my son\// Dennis
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I would definately make an appt. with his GI. I would not say that is normal. So sorry for the poor little guy. Am going to say a prayer for him.
I tend to take a very simple approach.
Mouth ulcers, mucus in poop = leading to flare
Blood in stool, fissure, cramping and vomiting = flare.
Sometimes also presents with crippling back and joint pain.
Intense cramping, vomiting + blood in stool = hospital.
I've always been far too reluctant to go to hospital.
Now I'm ready to check in at the first sign of trouble and I won't leave until it's resolved.
Mouth ulcers, mucus in poop = leading to flare
Blood in stool, fissure, cramping and vomiting = flare.
Sometimes also presents with crippling back and joint pain.
Intense cramping, vomiting + blood in stool = hospital.
I've always been far too reluctant to go to hospital.
Now I'm ready to check in at the first sign of trouble and I won't leave until it's resolved.
