What could I expect from the colonoscopy? I've been lead to believe by one GP I had IBS, diagnosed 6 years ago at 14. Now at 20, after developing symptoms (not IBS related), but possibly a lymphoma or leukaemia, which I though was possible considering my fatigue. After 3 weeks of waiting and getting some test, a new GP (obviously...) which we had an arranged phone appointment, he informed me my calprotectin level was over a 1000. I briefly read what the levels should be when I was asked to give a sample for this kind of test... And my GP was kind of straining to tell me about how much he didn't want to be telling me his exact thoughts... My mum recently had one for blood in her stool and obviously to rule out bowel cancer, she was fine, didn't even have one polyp at 58... She told me I was suspecting having IBD, that her colonoscopy took 15 minutes and it didn't hurt. I've read that a score over 250 mean there will be a visible presence of ulcers, which I can say yes I've been having a mild flare up for almost 6 years with very minimal remission and spikes of crippling pain, but never had a lot of blood.. My stool has almost never been not too wet. I've not had a personal experience with levels yet, only what I've got now, so what does a 1000 mean for you other people with IBD? thank you in advance.
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Newly diagnosed, calprotectin >1000
- Thread starter lee97
- Start date
A fecal calprotectin level of over 1000 very probably means that there is some sort of significant inflammation going on in your gut. It may or may not be IBD, and if it is IBD it may or may not mean serious visible ulcers, although the odds of visible ulcers are probably pretty good
The best way to find out what is going on down there is for the gastroenterologist to take a look via colonoscopy. It's not the only tool for assessing IBD, but it's the first and best one to try. If the colonoscopy looks clean then you can explore other procedures with your doc.
In the US it's common medical practice to heavily sedate the patient (not full general anesthesia) for a colonoscopy, so there is usually no discomfort at all for the patient, and often even no memory of the procedure either. I have the impression that in the UK some docs use rather less sedation (NHS rules?), increasing the risk of some discomfort, but British forum members can advise you about that better than I can. Whatever the case, the colonoscopy is well worth it in order to find out what's going on in your gut and thus consult with your doc to determine a path forward and get your disease under control.
The best way to find out what is going on down there is for the gastroenterologist to take a look via colonoscopy. It's not the only tool for assessing IBD, but it's the first and best one to try. If the colonoscopy looks clean then you can explore other procedures with your doc.
In the US it's common medical practice to heavily sedate the patient (not full general anesthesia) for a colonoscopy, so there is usually no discomfort at all for the patient, and often even no memory of the procedure either. I have the impression that in the UK some docs use rather less sedation (NHS rules?), increasing the risk of some discomfort, but British forum members can advise you about that better than I can. Whatever the case, the colonoscopy is well worth it in order to find out what's going on in your gut and thus consult with your doc to determine a path forward and get your disease under control.
scottsma
Well-known member
- Location
- Tynemouth,
Hello and welcome.In the UK a calprotectin level of 50-60 is deemed as normal.Your result of 1000 def.indicates inflammation and I'm sure IBS doesn't have inflammation.A colonoscopy will allow your GI to see what's going on.If there are ulcers etc.biopsies will be taken and sent for testing.The test is fine and you will be offered sedation,but I doubt it will be enough to put you under.You can ask for a top up if you need it.The prep can unpleasant but I expect your mum will have explained it all.Results usually take 4-6wks.
Lynda Lynda
Member
Lee : Thanks for sharing. I live in the USA and I have had 3 colonoscopies and 3 endoscopies ( three different doctors / locations.) I had no problems and each procedure was pain free and I was 100% "asleep" during the procedure. The "prep" is the worst part ! Take Care.
hi my son journey started since 2014 he is 20 yrs now , his calprotectin always changes up and down , normal and over 1000 and always no symptoms
in march 2018 symptoms of weight loss and mild cramps and fatigue and slight fever start and all that was under his stress of graduation hard studies and he did colonoscopy and it was severe ulcers allover the track , we refuse to give him humira and we raised the imuran dose from 100mg to 150 mg and add budosenide extended release , and he started modulen shakes for 6 weeks , calprotectin reduced to 194 , then he started to eat and keep 2 modulen shakes daily till now, he finished his exams just before 10 days and his calpprotectin today is again over 1000 and no symptoms any suggestion
in march 2018 symptoms of weight loss and mild cramps and fatigue and slight fever start and all that was under his stress of graduation hard studies and he did colonoscopy and it was severe ulcers allover the track , we refuse to give him humira and we raised the imuran dose from 100mg to 150 mg and add budosenide extended release , and he started modulen shakes for 6 weeks , calprotectin reduced to 194 , then he started to eat and keep 2 modulen shakes daily till now, he finished his exams just before 10 days and his calpprotectin today is again over 1000 and no symptoms any suggestion
hi my son journey started since 2014 he is 20 yrs now , his calprotectin always changes up and down , normal and over 1000 and always no symptoms
in march 2018 symptoms of weight loss and mild cramps and fatigue and slight fever start and all that was under his stress of graduation hard studies and he did colonoscopy and it was severe ulcers allover the track , we refuse to give him humira and we raised the imuran dose from 100mg to 150 mg and add budosenide extended release , and he started modulen shakes for 6 weeks , calprotectin reduced to 194 , then he started to eat and keep 2 modulen shakes daily till now, he finished his exams just before 10 days and his calpprotectin today is again over 1000 and no symptoms any suggestion pls help me
in march 2018 symptoms of weight loss and mild cramps and fatigue and slight fever start and all that was under his stress of graduation hard studies and he did colonoscopy and it was severe ulcers allover the track , we refuse to give him humira and we raised the imuran dose from 100mg to 150 mg and add budosenide extended release , and he started modulen shakes for 6 weeks , calprotectin reduced to 194 , then he started to eat and keep 2 modulen shakes daily till now, he finished his exams just before 10 days and his calpprotectin today is again over 1000 and no symptoms any suggestion pls help me
Your son needs a new maintenance med. Has he tried MTX? Any reason not to try Humira? Honestly, if he has already failed Imuran, on two doses, one with a steroid, chances are that he needs a biologic.
Biologics are actually very safe drugs. I'm going to tag my little penguin - she can give you statistics. My daughters have been on biologics for 8-9 years or so and have had NO side effects.
On Imuran though, my daughter had a LOT of side effects including increased infections.
Honestly, of the two,I consider Imuran to be less safe. It comes with a higher risk of cancer and has been associated with cases of non-melanoma skin cancer, lymphoma and a very rare kind of cancer called hepatosplenic T cell lymphoma. Now pediatric doctors try not to use Imuran WITH biologics. Instead they use either biologics by themselves or combine them with Methotrexate.
Biologics are actually very safe drugs. I'm going to tag my little penguin - she can give you statistics. My daughters have been on biologics for 8-9 years or so and have had NO side effects.
On Imuran though, my daughter had a LOT of side effects including increased infections.
Honestly, of the two,I consider Imuran to be less safe. It comes with a higher risk of cancer and has been associated with cases of non-melanoma skin cancer, lymphoma and a very rare kind of cancer called hepatosplenic T cell lymphoma. Now pediatric doctors try not to use Imuran WITH biologics. Instead they use either biologics by themselves or combine them with Methotrexate.
thank you so much maya, we are not going to humira due to side effects and as i know biologics are injection and my son has panic to injection and refuse also to take it , i will ask his doctor about methtraxate and he never use Prednesilone . His doctor called before 1 hr and he said as he started to gain weight and he saw him yesterday better and no symptoms he prefer to let him relax for a while and repeat the calprotectin after 2 weeks from now. and really i dont know if it will be down in 2 weeks . from 4 yrs experience my son calprotectin is coming only when he is only using modulen IBD shakes and stop food totally
Are you in Europe? Because they have the new version of Humira, which does not burn. You can get the pen and he wouldn't even have to see the needle.
Since he is likely going to need infusions or injections at some point, he should see a psychologist who works with teens and young adults with chronic illnesses. He needs to learn how to cope with shots and infusions - that is just the reality of having Crohn's. Besides Imuran, not a lot of the Crohn's medications are in pill form. Methotrexate is, but that's really it.
The other option would be Remicade, which is an infusion. It's an IV usually every 6-8 weeks, though it can be given as often as every 4 weeks.
What side effects are you referring to? Humira actually did not cause ANY side effects at all for my daughters. It worked like magic for both of them. There are many kids on the forum who have been on it and it's used in kids as young as 2 years old. It was also recently studied - they studied a large population of kids and teenagers who had inflammatory diseases - IBD (both Crohn's and UC), juvenile idiopathic arthritis and psoriasis, I think.
What they found was that biologics (anti-TNFs like Remicade and Humira specifically), do NOT increase the cancer risk. These kids have an increased risk of cancer because of their diseases (their malfunctioning immune systems). Inflammation can cause all sorts of complications, including colorectal cancer, if left untreated.
With chronic inflammation, your son is at risk for fistulae, abscesses, strictures, obstructions, perforations which can lead to sepsis and even death. Untreated Crohn's can be very serious.
But the good news is that we have very effective drugs now. There are lots of biologics. There are the anti-TNFs: Humira, Remicade, Cimzia and Simponi. There is Stelara, which is an IL-23 and IL-12 inhibitor. Then there is Entyvio, which works specifically in the gut and so has a lower risk of infection.
Exclusive Enteral Nutrition (formula only - what your son is doing now with Modulen) works really well to INDUCE remission. The problem is, once you add back food, patients tend to flare. That's why they usually start a maintenance medication at the same time.
In your case, he is on a steroid and on a higher dose of Imuran, which suggests that Imuran is not working. So you really do need another maintenance med. Your choices are Methotrexate or biologics. I think most parents on the Parents' forum will tell you that biologics are easier to tolerate and have fewer side effects.
My younger daughter, the one who has Crohn's as well as arthritis, was put on Remicade at diagnosis. She had already been on Methotrexate for her arthritis, but clearly it wasn't enough to control the IBD too. So we added Remicade + MTX. She used Entocort (Budesonide) till they kicked in. It took about 3 infusions of Remicade and she went from being in a lot of pain, dealing with constipation and dealing with nausea, fatigue and mouth ulcers, to feeling NORMAL.
8 months later, her colonoscopy was greatly improved. Her colon had healed so well, the doctor said it looked "perfect" - like she didn't have Crohn's at all!! There was still very mild microscopic inflammation in her terminal ileum, but even that had improved a LOT.
I'm going to tag a few parents, so they can tell you about their kids' experiences with biologics.
my little penguin
crohnsinct
pdx
Tesscorm
Farmwife
Pilgrim
Clash
Jmrogers4
Since he is likely going to need infusions or injections at some point, he should see a psychologist who works with teens and young adults with chronic illnesses. He needs to learn how to cope with shots and infusions - that is just the reality of having Crohn's. Besides Imuran, not a lot of the Crohn's medications are in pill form. Methotrexate is, but that's really it.
The other option would be Remicade, which is an infusion. It's an IV usually every 6-8 weeks, though it can be given as often as every 4 weeks.
What side effects are you referring to? Humira actually did not cause ANY side effects at all for my daughters. It worked like magic for both of them. There are many kids on the forum who have been on it and it's used in kids as young as 2 years old. It was also recently studied - they studied a large population of kids and teenagers who had inflammatory diseases - IBD (both Crohn's and UC), juvenile idiopathic arthritis and psoriasis, I think.
What they found was that biologics (anti-TNFs like Remicade and Humira specifically), do NOT increase the cancer risk. These kids have an increased risk of cancer because of their diseases (their malfunctioning immune systems). Inflammation can cause all sorts of complications, including colorectal cancer, if left untreated.
With chronic inflammation, your son is at risk for fistulae, abscesses, strictures, obstructions, perforations which can lead to sepsis and even death. Untreated Crohn's can be very serious.
But the good news is that we have very effective drugs now. There are lots of biologics. There are the anti-TNFs: Humira, Remicade, Cimzia and Simponi. There is Stelara, which is an IL-23 and IL-12 inhibitor. Then there is Entyvio, which works specifically in the gut and so has a lower risk of infection.
Exclusive Enteral Nutrition (formula only - what your son is doing now with Modulen) works really well to INDUCE remission. The problem is, once you add back food, patients tend to flare. That's why they usually start a maintenance medication at the same time.
In your case, he is on a steroid and on a higher dose of Imuran, which suggests that Imuran is not working. So you really do need another maintenance med. Your choices are Methotrexate or biologics. I think most parents on the Parents' forum will tell you that biologics are easier to tolerate and have fewer side effects.
My younger daughter, the one who has Crohn's as well as arthritis, was put on Remicade at diagnosis. She had already been on Methotrexate for her arthritis, but clearly it wasn't enough to control the IBD too. So we added Remicade + MTX. She used Entocort (Budesonide) till they kicked in. It took about 3 infusions of Remicade and she went from being in a lot of pain, dealing with constipation and dealing with nausea, fatigue and mouth ulcers, to feeling NORMAL.
8 months later, her colonoscopy was greatly improved. Her colon had healed so well, the doctor said it looked "perfect" - like she didn't have Crohn's at all!! There was still very mild microscopic inflammation in her terminal ileum, but even that had improved a LOT.
I'm going to tag a few parents, so they can tell you about their kids' experiences with biologics.
my little penguin
crohnsinct
pdx
Tesscorm
Farmwife
Pilgrim
Clash
Jmrogers4
maya you are so great , thank you for this detailed explanation and good info
we are living in UAE and my son studying in UK and I will read more about humira and I know very well that at one stage he should use it. I will read more about it as i am also a pharmacist and will discuss this option with his doctor in the coming appointment after we retest him after 2 weeks. thank you again you are really wonderful and wish all the best for your kids
we are living in UAE and my son studying in UK and I will read more about humira and I know very well that at one stage he should use it. I will read more about it as i am also a pharmacist and will discuss this option with his doctor in the coming appointment after we retest him after 2 weeks. thank you again you are really wonderful and wish all the best for your kids
I was also very worried and hesitant about my son starting remicade. He was diagnosed at 16 and his only maintenance treatment was supplemental Enteral Nutrition. While this seemed to keep things 'steady', it was not enough to eliminate simmering inflammation.
At 18, when we transferred to an adult GI, his new GI was adamant that the simmering inflammation would eventually lead to complications, even surgery, and that treatment was necessary. He very much preferred biologics over immunosuppressants. And, while I didn't want any of the meds, if I had to choose, I preferred the biologics. He's now been on remicade for approx. 5 years and all has been good. His crohns has remained under control and, actually, tests after beginning remicade have shown no inflammation present.
He has had some issues with skin rashes (ie molluscom??) here and there but that has been the only side effect (and, even that, I can't confirm with certainty that it's a result of the remicade). And, he had a couple of winters where he caught bronchitis and had a bit of a tough time getting rid of it. But, it has all been treated and managed and all is good now.
Good luck. As parents (and patients), we are not given easy choices with IBD. But, treatments are safer and better than ever before. :ghug:
At 18, when we transferred to an adult GI, his new GI was adamant that the simmering inflammation would eventually lead to complications, even surgery, and that treatment was necessary. He very much preferred biologics over immunosuppressants. And, while I didn't want any of the meds, if I had to choose, I preferred the biologics. He's now been on remicade for approx. 5 years and all has been good. His crohns has remained under control and, actually, tests after beginning remicade have shown no inflammation present.
He has had some issues with skin rashes (ie molluscom??) here and there but that has been the only side effect (and, even that, I can't confirm with certainty that it's a result of the remicade). And, he had a couple of winters where he caught bronchitis and had a bit of a tough time getting rid of it. But, it has all been treated and managed and all is good now.
Good luck. As parents (and patients), we are not given easy choices with IBD. But, treatments are safer and better than ever before. :ghug:
So is his doc in the UAE or the UK? Because if he's in the UK, I think your son would get the Humira that does not sting or burn. It's still a shot, but it's really easy to give once you get used to it. I would definitely do some research but remember that MANY people have no side effects at all. They have to list them all and I can guarantee most parents on here agonized and worried about our kids taking them. I lay awake night after night worrying about it.
But at some point the disease becomes scarier than the meds...then your biggest fear becomes running out of biologics or treatment options!!
hi maya what you said is totally true and we will discuss it in our next visit, my son doctor is in UAE and not uk
Remicade kid here (he will be 19 next month) He has been on remicade for almost 5 years now and has no side effects and has been in remission the entire time even through university finals, working and playing a sport at the university. (and I'm sure not eating the best).
The only issue for him is the time involved for remicade as it's an infusion and even though he is on rapid infusion it is still 2 hours of time every 6 weeks.
You have already been given some great info. I think one of the biggest things we look at is his medicine should be able to sustain him through stress situation.
The only issue for him is the time involved for remicade as it's an infusion and even though he is on rapid infusion it is still 2 hours of time every 6 weeks.
You have already been given some great info. I think one of the biggest things we look at is his medicine should be able to sustain him through stress situation.
hi my son started humira and before 2 days he took the second loading dose and we took this decision after 6 months of high calprotectin more than 1000 , I would like to ask when you think calprotectin will start to come down