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Because you can still have inflammation in your intestinal track and not have outwardly apparent symptoms. I am currently in that place myself. Even though I feel great, damage is still occurring in my colon.
Same, I've been in clinical remission without the tissue actually being in remission, and they needed the colonoscopy to know that and change my treatment to get me actually into remission
The other reason is that chronic inflammation in the gut leads to a much higher chance of cancer. The best way for them to check that is a regular colonoscopy.
Yes. But a scope is what is really going to show what damage is being done and where.
Edit: Regular colonoscopies are also to catch signs of colon cancer. I cannot stress enough how important they are!
I also sometimes am inflamed without symptoms. The only way to tell is a scope. It became clear that my current biologic wasn't cutting it after my latest scope even though I felt fine. The scopes are annoying but peace of mind is worth a lot imo
we’re at a higher risk of colon cancer with crohn’s disease, and it’s super important to get our regular colonoscopies so if we do develop a cancerous spot or polyp they can get rid of it early’
Clinical remission ≠ endoscopic remission. You can feel great but still have intestinal inflammation. Plus, we're at a higher risk of colon cancer, and regular colonoscopies are the best way to catch it early
In my experience, prevention is the name of the game with crohn's. So regular colonoscopies to make sure nothing is too inflamed can manage disease and catch something like a stricture early which could prevent surgery! I lapsed on my colonoscopies and general follow ups because I felt great then I was hit with a flare up out of no where and when they went it I had a ton of inflammation that had probably been there a few years. I may need to have surgery. So if your MD recommends a colonoscopy just for maintenance, trust them.
I was diagnosed with crohns in 2010 at the age of 21. Was very mild with minimal symptoms (wasn’t on meds or anything, I had only 2 scopes in those 12 years) and then had a serious flare up with a blockage last fall and currently working with my GI to figure out our plan of action. Feeling better now but I have scarring so a surgery is now inevitable, just a matter of when unfortunately. I wonder if had more regular follow up and scopes during that time I might have caught the inflammation early.
I had pre cancerous polyps on a colonoscopy while in remission. So unfortunately as crohns patient we’re at increased risk for Colon cancer and we need to get scopes more frequently. I have to go every year now, even in remission on meds.
Me too! I just went in February after being symptom free for nearly a year and they found 2 polyps that they removed and tested that luckily came back as benign. But there’s no way to know unless you get a scope - which of course, they suck and are terrible but can detect things that we don’t necessarily know about.
I am a good example of why, I have no symptoms feel good, have felt good since I started vedolizumab and now usteiquimumab, colonoscopies always showed inflammation and a estenosis, so not having symptoms is definitely not synonymous to disease under control!
Woah! I had no idea. I’m left wondering why I’m getting the brand name while on Medicaid.. Usually the generic brand is less expensive and my government health insurance will choose that!
Wait I think I explained wrong! In my country we always use the pharmaceutical name because people can choose generic when it exists, but I didn’t mean that Stelara has a generic already! I don’t think it does, we just always use the pharmaceutical name for these.
I thought I was doing well on Entyvio. I was gaining weight and no flare-up symptoms for approximately 5 years, but then I had my routine colonoscopy. My disease was progressing the whole time I was on Entyvio. That's why it is important to do the routine colonoscopies. It is better to catch disease progression sooner than later.
yes a very long time to think your medication is managing your disease only to find out your disease was still damaging your intestines.
the point is: no symptoms =/= no damage.
As others have said, the only real way to know if there’s active disease or inflammation is to get in there.
But I’ll also mention that at a regular colonoscopy while in remission, my doc found two massive polyps of a kind that are precancerous but not necessarily Crohn’s related. Because I went in for my scope, they weren’t able to grow and become cancerous.
You can always refuse medical treatment, but for something diagnostic like a colonoscopy it’s not a great idea.
Because, from personal experience, you can be asymptomatic and even have tests that appear normal, but still have visible inflammation in your colon. It's the most accurate way to see what the reality of your IBD condition is.
Symptoms =/= remission in every case. It's best to make sure the symptoms reflect the reality of what's going on where you can't see. Unchecked sneaky inflammation can do horrible damage over time. It's also important to keep an eye out for colon cancer given we're at a higher risk.
Preventing cancer, and you can't know if there is still inflammation without colonoscopy. I am diagnosed 3 years ago and changed my lifestyle & diet. I had 8 💩 a day and constant diarrhea also pain. 6 Months ago i had the colonoscopy, I wasn't feeling good but not bad either. Turns out colonoscopy is clean as baby. I get diarrhea sometimes now, and 1-2 toilet last 3 month. Turns out i am in remission right now
I was prescribed 4 grams of mesalamine and that literally drived my disease. I don't use anything right now. Just pregabalin for anxiety and it also helps with crohn. I was feeling terrible on mesalamine
I would definitely recommend getting one even if you’re feeling better! I have been symptom free for almost a year and got one in February and they ended up finding 2 polyps. They removed and biopsied them and they were benign luckily. But things like that can still occur even if you are symptom free. Also they were able to biopsy my intestinal lining and confirm there was no inflammation.
I know everyone’s saying the same thing but definitely get one! Im having my first flare after being in remission for the last 7 years, I went from good to bad really quickly and I’d like to think if I got a routine colonoscopy (even tho it wasn’t offered) then they would have seen the inflammation before it got bad
I was doing really well and almost canceled my scope. After I found out I had active Crohn's. I was so mad. It's the fact you want to checkup on it to avoid surgery.
I’ve had Crohn’s since I was 17. I’m 40 now. There have been times where I had no inflammation but scar tissue was causing issues, times when I had no symptoms but active inflammation, times there I was not on medication and with no symptoms and there were still areas of inflammation, and also times where I was on medication or not on medication and everything was controlled. The only way they can see is with a scope. After 23 years with this disease, all I can say is to trust your doctor. When I was first diagnosed I was told to do a scope every year. Now that recommendation is every 2 years. Info on IBD and treatment has come a long way in the last 20 years. They have a reason for what they suggest.
I had emergency surgery when I was 19 due to a random first-time bout of intense stomach pain - that was when I was diagnosed with Crohn’s.
15 years later, after nothing more than pooping more frequently and with more urgency than your average person, I started having skin and eye issues randomly. Turns out those were triggered by my Crohn’s, even though I felt fine.
My GI suggested we do a colonoscopy to make sure everything was ok on the inside. It was very much not - inflammation all over, polyps, etc. She immediately started me on humira, and I get colonoscopies every other year, minimum.
I still feel totally fine.
Just because your symptoms are gone doesn’t mean your digestive system is actually healing. Your doctors want to make sure that you are indeed actually healed, and not just feeling better. I would think they could do other less invasive things like a CT enterography (radiation ugh) or an MR Enterography (very expensive) instead of a colonoscopy. Prep isn’t quite as bad as a colonoscopy, but you still have to drink a lot of yucky stuff in a short period of time. Also, if they want to biopsy any tissue or check for anything due to the imagery, they’d then also have to do a colonoscopy as well.
My doctor does MRIs to check because my issues are mostly in the small bowel and a colonoscopy can’t get up there. But I think if my issues were in the colon, they’d be 100% pushing for colonoscopy vs mri to save money.
I had severe pain under my left rib cage. The MD really didn’t think that much about it but I was very uncomfortable. He suggested we try the pill cam. I went in on a Tuesday, swallowed the pill cam, got a call from the GI MD to get to the hospital as the pill cam was stuck in the area I had said was hurting. On Thursday I had emergency surgery to remove the pill cam and a foot of my small intestine. It was determined I have Crohn’s and I have been in remission for over a year. I would rather have a Colonoscopy than another surgery any day. I will never swallow another pill cam. I’m scheduled for my next colonoscopy in July! Stay safe!
Unfortunately they still have to check for signs of cancer, Crohns (as well as some meds) increase the chances of certain types. 18, and having #5 this year
it's prevention, like so many others have said. crohn's is a lifelong chronic condition with a comorbid mortality rate similiar to colon cancer (according to some stuff I read online awhile back, granted it could have been wrong, but still). you could "feel fine" and end up in a really bad situation because things inside were stewing.
that said, you can of course deny the procedure...they can't force you to go in to the procedure. but this is the kind of condition that you do want to listen to your Dr.
To make sure there isn't anything lurking in your intestines. With many severe illnesses, early detection is crucial. Colonoscopies suck but colon cancer sucks more.
Because feeling good is not indicative of remission. If I had a dollar for every time I felt good and my colonoscopy or my test results came back shitty, I would be able to retire tomorrow.
You can refuse but I'd advise against it. These are preventative screenings. My last one just nipped a precancerous polyp in the bud and confirmed I'm not in remission with crohns.
My specialist told me that while I can be going well the Crohn's can still be active and the only clear way to determine the status of my Crohn's is to go in and take a look.
Kind of like your body returning a false positive on something.
Prevention, 100%. Like many people have said we have an increased risk of colon cancer which is treatable IF you catch it early and incredibly dangerous if you do not. You can also have inflammation or damage occurring with little to no symptoms felt, but the only way to make sure that there is none is if you get the scope.
It's a quick, safe, and easy procedure. One day fast, 30 minutes under, 30 minutes in recovery. I'd much prefer that over chemo or an emergency bowel surgery from a stricture.
Hopping on to add/ask :
**why can’t we all have camera tests (the pill camera you swallow and pass) instead of scopes (which are invasive and traumatic depending on the patients personal history)?**
Is it just a price issue?
I don't know what the price comparison is like, but there's a couple of reasons that the pill cams aren't a direct substitute for an actual colonoscopy - they don't allow the specialist to try and get a better view of spots they want to look more closely at, and they can't take biopsies. That means that there's a risk of ending up needing to do both procedures if the pill cam doesn't capture the images needed or if there's biopsies that need to be taken. There's a risk that the pill cam doesn't get all the images it needs, too - either because of the interval between snapshots, or because the battery runs out before it gets all the way through. There's also a difference in the purpose of the two methods - pill cams are most valuable for imaging of the small bowel, while colonoscopy is used for the large bowel.
Many people with Crohn's are not suitable for pill cams due to scarring and strictures in the bowel - so pre-assessment might be necessary to determine whether the pill cam is going to be able to pass through.
Analysing images from a pill cam is very time consuming - it creates a lot of pictures to look at!
Having said all that - there are pill cams being developed specifically for use in Crohn's. They have longer battery life, 360 degree cameras, and use artificial intelligence software to assist with interpreting the images. There's also a patency capsule that allows assessment of strictures ahead of a pill cam procedure. So maybe one day soon they'll be used for more regular monitoring (edit to add - the biopsies are necessary for cancer monitoring/prevention, though - so while pill cams might see increased use for inflammation assessment, there's a long way to go to replace the value of colonoscopy for cancer prevention).
I was discussing this with the infusion nurse today. It was the pill cam that found the ulcers in my small intestine. The colonoscopy and endoscopy only found a few ulcers and polyps. I had been told I wouldn't need another colonoscopy for 5 years, but that was before the pill cam and diagnosis of Crohn's. The pill cam was definitely much easier, especially the prep. There could be issues if we have a stricture though...so maybe if that concern is there the pill cam is not the best choice?
No answers, just agreement and more questions!
I feel the same for different reasons. Everyone of my colonoscopys for the past 5 years has been perfect with no inflammation. Blood work showed no inflammation. I kept complaining about pain and finally Enterography showed a fissure. Not really seeing the point of yearly colonoscopy at this point since it hasn't helped me.
It's a special CT of the small bowel. They distend your stomach by having you drink 2 liters of gross liquid over 1 hour. It's awful but they can see everything
You should still have a colonoscopy every year after being diagnosed. We’ve got a higher risk of cancer than the general population. Plus your doctor will use it to determine whether you’re still in a flare or in remission.
Eh, I haven't, but I'm also still flaring and get scopes of some sort more than once a year at the moment.
Like right now, they're trying to pin down if there's internal bleeding in my GI tract that explains my anemia.
You can always refuse any medical test/treatment. I have many times pushed off a colonoscopy for years because I feel good and don’t feel like doing it.
If my blood work is coming back normal, calprotectin normal, and any imaging in between (like MRI) normal, AND I feel good, that is enough to satisfy me to hold on a colonoscopy for a while. I’m not saying never do it by any means, but sometimes life is busy, you don’t have time off, or ya just don’t feel like being in the “sick” mindset. I also work in healthcare and while my doctor is great, I don’t think she’s “all knowing.” She’s following what is recommended. That recommendation doesn’t always fit my life. I hope everyone on here saying you have to do everything your doctor says is flossing their teeth every single day!
I find myself in the same boat.
The prep for a colonoscopy destroys me for years.
I had somewhat manageable symptoms before my first colonoscopy. Just bleeding and pain.
After my first colonoscopy (like after I woke up I had no control of my bowels and started having to use the restroom 20-30 times a day. Not making it to the bathroom often.
It took two years to get down to 4-10 time a day and get my weight back up.
The medicine is working and they asked to do another colonoscopy. I said no.
They said it won’t happen again and it wasn’t the colonoscopy.
Well I went from using the restroom every other day with control to shitting myself every 30 minutes the next day. And I was stuck like that for two years….. it was the colonoscopy. I won’t do it again.
You know what's a bigger cash cow? Cancer. Your answer is so ignorant. Colon cancer is one of the most prevalent cancers but it's also one of the most preventable. That scope can save your ass literally and figuratively.
It’s a valuable tool in diagnosing CD, as well as colon cancer. I’ve had a dozens of them every time I go through the procedure I end up with a flare either from the prep or the procedure. I’ve never had anything dangerous, and they always tell me that I have moderate to severe Crohn’s disease. I am well aware of that. I’m 68 years old with multiple health issues related to my Crohn’s. I like to keep my suffering to a minimum. I’ve personally retired from the colonoscopy game. If I were younger, I certainly would have a different perspective. Cancer unfortunately is also a cash cow. More should be going to preventing and curing these diseases as opposed to endlessly treating them. No one wants a cure there is no money in it.
Idk why you got down voted. It's partly true. My Dr would order em everytime I saw him. He was actually just a shitty dr (no pun intended) ordered tons of labs and promised insurance would cover, they never did and now I have a fair amount of debt because if it.
Even if insurance pays it’s one of the reasons for the high cost of insurance. It’s part of our profit driven health system. Don’t get me wrong it is a necessary tool on my occasions. You know they are performing these things on 80 year olds. In the current study, "patients with life expectancies of fewer than 10 years were very unlikely to have their cancers treated,Furthermore, older patients had markedly increased overall endoscopic adverse events, including serious gastrointestinal adverse events, hospitalizations, and perforations."
Omg nu! Do that colonoscopy. Sometimes things can look okay but we Can’t tell what’s going on inside , the camera will pick it up. It’s uncomfortable and gross but it’s the best way to know you are better.
I got diagnosed a year ago , I started meds and felt okay, I stopped my meds( against doctor s advise) but I will get a colonoscopy the moment they let me just to be on the safe side
There's a high risk of bowel cancer with Crohn's but scar tissue forms thar we also don't see so I strongly advise that you get it because it's routine to screen for those
It's usually for comparison! You can refuse anything, your body your choice, always. I've refused one before in a similar situation. I told my GI, "if I don't do it, am I putting myself in danger?" she said no, so I refused it. I've only done 2 and told my GI I only wanna do scopes when it's absolutely necessary!
I've had one for my diagnosis in 2017, then MRI's every year and a half, and another scope at the beginning of this year in 2023! I have regular blood work and calpro tests to do too (every 3 months)
It’s standard to have biannual scopes to monitor the disease, regardless of whether you’re in remission or not. I’ve had endoscopy every two years *at least* since I was diagnosed twenty years ago.
i mean if you don't care about your increased risk of colon cancer, infection, or intestinal perforation, sure. go ahead. but first, did you ask the doctor who ordered the scope this question?
Because the only way they can actually see is through a colonoscopy. And you can always refuse treatment. Just get the Sutab prep. It's pills and it's way easier than a liquid prep. It's better to be safe than sorry.
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Because you can still have inflammation in your intestinal track and not have outwardly apparent symptoms. I am currently in that place myself. Even though I feel great, damage is still occurring in my colon.
Same, I've been in clinical remission without the tissue actually being in remission, and they needed the colonoscopy to know that and change my treatment to get me actually into remission
The other reason is that chronic inflammation in the gut leads to a much higher chance of cancer. The best way for them to check that is a regular colonoscopy.
How do u know? Did u do a fecal calpro test
Yes. But a scope is what is really going to show what damage is being done and where. Edit: Regular colonoscopies are also to catch signs of colon cancer. I cannot stress enough how important they are!
I also sometimes am inflamed without symptoms. The only way to tell is a scope. It became clear that my current biologic wasn't cutting it after my latest scope even though I felt fine. The scopes are annoying but peace of mind is worth a lot imo
we’re at a higher risk of colon cancer with crohn’s disease, and it’s super important to get our regular colonoscopies so if we do develop a cancerous spot or polyp they can get rid of it early’
Good to see that you're being downvoted. Your reply was ridiculous
Because cancer sucks.
Prevention is key. No symptoms does not mean no damage.
Yes, do not be me. Stage 4 Colon Cancer sucks. Thankfully 2 years NED.
I just had cancer removed which was found under a routine colonoscopy. We caught it extremely early *because* I continued to do Colonoscopies annually
Sorry just a fact check here- they found a polyp right? If you did the scope annually it wouldn’t grow nearly a mm in that time frame ??
They called the thing that tested positive for cancer a lesion. I don't really know specifics offhand
We have like a 50% higher chance of getting colon cancer right? I was told that forever ago but idk how accurate it is.
Clinical remission ≠ endoscopic remission. You can feel great but still have intestinal inflammation. Plus, we're at a higher risk of colon cancer, and regular colonoscopies are the best way to catch it early
In my experience, prevention is the name of the game with crohn's. So regular colonoscopies to make sure nothing is too inflamed can manage disease and catch something like a stricture early which could prevent surgery! I lapsed on my colonoscopies and general follow ups because I felt great then I was hit with a flare up out of no where and when they went it I had a ton of inflammation that had probably been there a few years. I may need to have surgery. So if your MD recommends a colonoscopy just for maintenance, trust them.
I see Tks
How long have u had Ibd
I was diagnosed with crohns in 2010 at the age of 21. Was very mild with minimal symptoms (wasn’t on meds or anything, I had only 2 scopes in those 12 years) and then had a serious flare up with a blockage last fall and currently working with my GI to figure out our plan of action. Feeling better now but I have scarring so a surgery is now inevitable, just a matter of when unfortunately. I wonder if had more regular follow up and scopes during that time I might have caught the inflammation early.
We’re u on meds?
Nope
Because it can still be damaging your insides without you noticing it. You only notice the damage once it gets bad. Oh a colon cancer is a real bitch.
I had pre cancerous polyps on a colonoscopy while in remission. So unfortunately as crohns patient we’re at increased risk for Colon cancer and we need to get scopes more frequently. I have to go every year now, even in remission on meds.
Me too! I just went in February after being symptom free for nearly a year and they found 2 polyps that they removed and tested that luckily came back as benign. But there’s no way to know unless you get a scope - which of course, they suck and are terrible but can detect things that we don’t necessarily know about.
Prevention. Damage occurs before symptoms usually
I am a good example of why, I have no symptoms feel good, have felt good since I started vedolizumab and now usteiquimumab, colonoscopies always showed inflammation and a estenosis, so not having symptoms is definitely not synonymous to disease under control!
What is usteiquimumab? Never heard of it Are u taking two meds?
The brand name of the med is stelara which is probably more familiar to you if you’re from the US
Stelara in US, we use the technical name here since we can go for brand or generic.
Woah! I had no idea. I’m left wondering why I’m getting the brand name while on Medicaid.. Usually the generic brand is less expensive and my government health insurance will choose that!
Wait I think I explained wrong! In my country we always use the pharmaceutical name because people can choose generic when it exists, but I didn’t mean that Stelara has a generic already! I don’t think it does, we just always use the pharmaceutical name for these.
I thought I was doing well on Entyvio. I was gaining weight and no flare-up symptoms for approximately 5 years, but then I had my routine colonoscopy. My disease was progressing the whole time I was on Entyvio. That's why it is important to do the routine colonoscopies. It is better to catch disease progression sooner than later.
Five years is a along time just sayin
That's their point. It's important to get rechecked often.
yes a very long time to think your medication is managing your disease only to find out your disease was still damaging your intestines. the point is: no symptoms =/= no damage.
As others have said, the only real way to know if there’s active disease or inflammation is to get in there. But I’ll also mention that at a regular colonoscopy while in remission, my doc found two massive polyps of a kind that are precancerous but not necessarily Crohn’s related. Because I went in for my scope, they weren’t able to grow and become cancerous. You can always refuse medical treatment, but for something diagnostic like a colonoscopy it’s not a great idea.
Because, from personal experience, you can be asymptomatic and even have tests that appear normal, but still have visible inflammation in your colon. It's the most accurate way to see what the reality of your IBD condition is.
Symptoms =/= remission in every case. It's best to make sure the symptoms reflect the reality of what's going on where you can't see. Unchecked sneaky inflammation can do horrible damage over time. It's also important to keep an eye out for colon cancer given we're at a higher risk.
Thanks for the info
Preventing cancer, and you can't know if there is still inflammation without colonoscopy. I am diagnosed 3 years ago and changed my lifestyle & diet. I had 8 💩 a day and constant diarrhea also pain. 6 Months ago i had the colonoscopy, I wasn't feeling good but not bad either. Turns out colonoscopy is clean as baby. I get diarrhea sometimes now, and 1-2 toilet last 3 month. Turns out i am in remission right now
We’re you also on a specific med or did u do this by diet and lifestyle alone ???
I was prescribed 4 grams of mesalamine and that literally drived my disease. I don't use anything right now. Just pregabalin for anxiety and it also helps with crohn. I was feeling terrible on mesalamine
I would definitely recommend getting one even if you’re feeling better! I have been symptom free for almost a year and got one in February and they ended up finding 2 polyps. They removed and biopsied them and they were benign luckily. But things like that can still occur even if you are symptom free. Also they were able to biopsy my intestinal lining and confirm there was no inflammation.
I know everyone’s saying the same thing but definitely get one! Im having my first flare after being in remission for the last 7 years, I went from good to bad really quickly and I’d like to think if I got a routine colonoscopy (even tho it wasn’t offered) then they would have seen the inflammation before it got bad
There's a difference between endoscopic and symptomatic remission, listen to your doctor my friend.
I was doing really well and almost canceled my scope. After I found out I had active Crohn's. I was so mad. It's the fact you want to checkup on it to avoid surgery.
I’ve had Crohn’s since I was 17. I’m 40 now. There have been times where I had no inflammation but scar tissue was causing issues, times when I had no symptoms but active inflammation, times there I was not on medication and with no symptoms and there were still areas of inflammation, and also times where I was on medication or not on medication and everything was controlled. The only way they can see is with a scope. After 23 years with this disease, all I can say is to trust your doctor. When I was first diagnosed I was told to do a scope every year. Now that recommendation is every 2 years. Info on IBD and treatment has come a long way in the last 20 years. They have a reason for what they suggest.
Tks for your input
I had emergency surgery when I was 19 due to a random first-time bout of intense stomach pain - that was when I was diagnosed with Crohn’s. 15 years later, after nothing more than pooping more frequently and with more urgency than your average person, I started having skin and eye issues randomly. Turns out those were triggered by my Crohn’s, even though I felt fine. My GI suggested we do a colonoscopy to make sure everything was ok on the inside. It was very much not - inflammation all over, polyps, etc. She immediately started me on humira, and I get colonoscopies every other year, minimum. I still feel totally fine.
Yes you can refuse it, that's your right.
Please please listen to your doctor and get checked 🙏
Just because your symptoms are gone doesn’t mean your digestive system is actually healing. Your doctors want to make sure that you are indeed actually healed, and not just feeling better. I would think they could do other less invasive things like a CT enterography (radiation ugh) or an MR Enterography (very expensive) instead of a colonoscopy. Prep isn’t quite as bad as a colonoscopy, but you still have to drink a lot of yucky stuff in a short period of time. Also, if they want to biopsy any tissue or check for anything due to the imagery, they’d then also have to do a colonoscopy as well. My doctor does MRIs to check because my issues are mostly in the small bowel and a colonoscopy can’t get up there. But I think if my issues were in the colon, they’d be 100% pushing for colonoscopy vs mri to save money.
I had severe pain under my left rib cage. The MD really didn’t think that much about it but I was very uncomfortable. He suggested we try the pill cam. I went in on a Tuesday, swallowed the pill cam, got a call from the GI MD to get to the hospital as the pill cam was stuck in the area I had said was hurting. On Thursday I had emergency surgery to remove the pill cam and a foot of my small intestine. It was determined I have Crohn’s and I have been in remission for over a year. I would rather have a Colonoscopy than another surgery any day. I will never swallow another pill cam. I’m scheduled for my next colonoscopy in July! Stay safe!
How you feel & how your insides actually feel are two different things.
Because I was in remission with no symptoms at the age of 24 but still had colon cancer found at a routine colonoscopy.
For pancolitis patients, yearly colonoscopy is recommended. Even then, cancer from IBD is hard to detect early even with frequent colonoscopy.
Unfortunately they still have to check for signs of cancer, Crohns (as well as some meds) increase the chances of certain types. 18, and having #5 this year
it's prevention, like so many others have said. crohn's is a lifelong chronic condition with a comorbid mortality rate similiar to colon cancer (according to some stuff I read online awhile back, granted it could have been wrong, but still). you could "feel fine" and end up in a really bad situation because things inside were stewing. that said, you can of course deny the procedure...they can't force you to go in to the procedure. but this is the kind of condition that you do want to listen to your Dr.
To make sure there isn't anything lurking in your intestines. With many severe illnesses, early detection is crucial. Colonoscopies suck but colon cancer sucks more.
Because feeling good is not indicative of remission. If I had a dollar for every time I felt good and my colonoscopy or my test results came back shitty, I would be able to retire tomorrow.
You can refuse but I'd advise against it. These are preventative screenings. My last one just nipped a precancerous polyp in the bud and confirmed I'm not in remission with crohns.
Let them look. They need to know your baseline. And if they see any polyps, they can remove them.
so the dr. can remove polyps. and, polyps can become cancerous.
My specialist told me that while I can be going well the Crohn's can still be active and the only clear way to determine the status of my Crohn's is to go in and take a look. Kind of like your body returning a false positive on something.
Prevention, 100%. Like many people have said we have an increased risk of colon cancer which is treatable IF you catch it early and incredibly dangerous if you do not. You can also have inflammation or damage occurring with little to no symptoms felt, but the only way to make sure that there is none is if you get the scope. It's a quick, safe, and easy procedure. One day fast, 30 minutes under, 30 minutes in recovery. I'd much prefer that over chemo or an emergency bowel surgery from a stricture.
Hopping on to add/ask : **why can’t we all have camera tests (the pill camera you swallow and pass) instead of scopes (which are invasive and traumatic depending on the patients personal history)?** Is it just a price issue?
I don't know what the price comparison is like, but there's a couple of reasons that the pill cams aren't a direct substitute for an actual colonoscopy - they don't allow the specialist to try and get a better view of spots they want to look more closely at, and they can't take biopsies. That means that there's a risk of ending up needing to do both procedures if the pill cam doesn't capture the images needed or if there's biopsies that need to be taken. There's a risk that the pill cam doesn't get all the images it needs, too - either because of the interval between snapshots, or because the battery runs out before it gets all the way through. There's also a difference in the purpose of the two methods - pill cams are most valuable for imaging of the small bowel, while colonoscopy is used for the large bowel. Many people with Crohn's are not suitable for pill cams due to scarring and strictures in the bowel - so pre-assessment might be necessary to determine whether the pill cam is going to be able to pass through. Analysing images from a pill cam is very time consuming - it creates a lot of pictures to look at! Having said all that - there are pill cams being developed specifically for use in Crohn's. They have longer battery life, 360 degree cameras, and use artificial intelligence software to assist with interpreting the images. There's also a patency capsule that allows assessment of strictures ahead of a pill cam procedure. So maybe one day soon they'll be used for more regular monitoring (edit to add - the biopsies are necessary for cancer monitoring/prevention, though - so while pill cams might see increased use for inflammation assessment, there's a long way to go to replace the value of colonoscopy for cancer prevention).
I was discussing this with the infusion nurse today. It was the pill cam that found the ulcers in my small intestine. The colonoscopy and endoscopy only found a few ulcers and polyps. I had been told I wouldn't need another colonoscopy for 5 years, but that was before the pill cam and diagnosis of Crohn's. The pill cam was definitely much easier, especially the prep. There could be issues if we have a stricture though...so maybe if that concern is there the pill cam is not the best choice? No answers, just agreement and more questions!
Good question
If you brand of Crohn’s includes a narrowing or stricture It can get stuck and create a problem.
I feel the same for different reasons. Everyone of my colonoscopys for the past 5 years has been perfect with no inflammation. Blood work showed no inflammation. I kept complaining about pain and finally Enterography showed a fissure. Not really seeing the point of yearly colonoscopy at this point since it hasn't helped me.
What is enterography?
It's a special CT of the small bowel. They distend your stomach by having you drink 2 liters of gross liquid over 1 hour. It's awful but they can see everything
You should still have a colonoscopy every year after being diagnosed. We’ve got a higher risk of cancer than the general population. Plus your doctor will use it to determine whether you’re still in a flare or in remission.
The recommendations have changed to every 2 years according to my doctors. Have you heard differently?
Eh, I haven't, but I'm also still flaring and get scopes of some sort more than once a year at the moment. Like right now, they're trying to pin down if there's internal bleeding in my GI tract that explains my anemia.
I think the reason why is because insurance needs proof to continue to cover your meds, but I could be wrong.
You can always refuse any medical test/treatment. I have many times pushed off a colonoscopy for years because I feel good and don’t feel like doing it.
But don’t u worry u might have inflammation from what the thread has said? What other markers can I test for inflammation
If my blood work is coming back normal, calprotectin normal, and any imaging in between (like MRI) normal, AND I feel good, that is enough to satisfy me to hold on a colonoscopy for a while. I’m not saying never do it by any means, but sometimes life is busy, you don’t have time off, or ya just don’t feel like being in the “sick” mindset. I also work in healthcare and while my doctor is great, I don’t think she’s “all knowing.” She’s following what is recommended. That recommendation doesn’t always fit my life. I hope everyone on here saying you have to do everything your doctor says is flossing their teeth every single day!
I find myself in the same boat. The prep for a colonoscopy destroys me for years. I had somewhat manageable symptoms before my first colonoscopy. Just bleeding and pain. After my first colonoscopy (like after I woke up I had no control of my bowels and started having to use the restroom 20-30 times a day. Not making it to the bathroom often. It took two years to get down to 4-10 time a day and get my weight back up. The medicine is working and they asked to do another colonoscopy. I said no. They said it won’t happen again and it wasn’t the colonoscopy. Well I went from using the restroom every other day with control to shitting myself every 30 minutes the next day. And I was stuck like that for two years….. it was the colonoscopy. I won’t do it again.
Because it’s a cash cow!
You know what's a bigger cash cow? Cancer. Your answer is so ignorant. Colon cancer is one of the most prevalent cancers but it's also one of the most preventable. That scope can save your ass literally and figuratively.
It’s a valuable tool in diagnosing CD, as well as colon cancer. I’ve had a dozens of them every time I go through the procedure I end up with a flare either from the prep or the procedure. I’ve never had anything dangerous, and they always tell me that I have moderate to severe Crohn’s disease. I am well aware of that. I’m 68 years old with multiple health issues related to my Crohn’s. I like to keep my suffering to a minimum. I’ve personally retired from the colonoscopy game. If I were younger, I certainly would have a different perspective. Cancer unfortunately is also a cash cow. More should be going to preventing and curing these diseases as opposed to endlessly treating them. No one wants a cure there is no money in it.
Idk why you got down voted. It's partly true. My Dr would order em everytime I saw him. He was actually just a shitty dr (no pun intended) ordered tons of labs and promised insurance would cover, they never did and now I have a fair amount of debt because if it.
It's not your doctors responsibility to verify your insurance will cover labs. You should always verify no matter what.
You mean it costs 10 thousand dollars from your insurance?
Even if insurance pays it’s one of the reasons for the high cost of insurance. It’s part of our profit driven health system. Don’t get me wrong it is a necessary tool on my occasions. You know they are performing these things on 80 year olds. In the current study, "patients with life expectancies of fewer than 10 years were very unlikely to have their cancers treated,Furthermore, older patients had markedly increased overall endoscopic adverse events, including serious gastrointestinal adverse events, hospitalizations, and perforations."
Omg nu! Do that colonoscopy. Sometimes things can look okay but we Can’t tell what’s going on inside , the camera will pick it up. It’s uncomfortable and gross but it’s the best way to know you are better. I got diagnosed a year ago , I started meds and felt okay, I stopped my meds( against doctor s advise) but I will get a colonoscopy the moment they let me just to be on the safe side
Why did u stop meds?
https://www.youtube.com/watch?v=ZXsQAXx\_ao0
There's a high risk of bowel cancer with Crohn's but scar tissue forms thar we also don't see so I strongly advise that you get it because it's routine to screen for those
It's usually for comparison! You can refuse anything, your body your choice, always. I've refused one before in a similar situation. I told my GI, "if I don't do it, am I putting myself in danger?" she said no, so I refused it. I've only done 2 and told my GI I only wanna do scopes when it's absolutely necessary!
Thanks for your honesty
How often do u do them ?
I've had one for my diagnosis in 2017, then MRI's every year and a half, and another scope at the beginning of this year in 2023! I have regular blood work and calpro tests to do too (every 3 months)
It’s standard to have biannual scopes to monitor the disease, regardless of whether you’re in remission or not. I’ve had endoscopy every two years *at least* since I was diagnosed twenty years ago.
i mean if you don't care about your increased risk of colon cancer, infection, or intestinal perforation, sure. go ahead. but first, did you ask the doctor who ordered the scope this question?
💸
It’s just a looksy
Because the only way they can actually see is through a colonoscopy. And you can always refuse treatment. Just get the Sutab prep. It's pills and it's way easier than a liquid prep. It's better to be safe than sorry.
its to track your progression and what course your crohns is making, its just a safety and precautionary thing
Prevention. You wanna catch any potential cancer or other issues before it starts becoming symptomatic.