Is Follow-Up Colonoscopy Necessary

[Rich Pell]

Hello Everyone.
Went in for my initial screening Nov 2015 at 51 y/o and found out in my follow-up visit that I have an ulcer in my ileum and was diagnosed with CD.
For someone who has exercised their entire life and have always been a healthy eater, Paleo last 4 years I was a little stunned. Since I have no medical problems I was surprised to learn about my diagnosis to say the least, particularly since I am asymptomatic.

I agreed to take Entocort for 60 days. Positive experience, I could not tell I was on a medication, no signs or symptoms.
As most do, I started seeking as much information as I could to better understand what it means to have CD.
The other thing I have done since my diagnosis was to further improve my diet by increasing my fish and chicken intake and decreased my pork/beef intake.
I love to cook and have found an abundance of vegetable soup purees and my vegetable intake is higher than it's ever been.

To my question:
I do not understand why a follow-up colonoscopy is warranted.
Since I am asymptomatic and have transitioned my diet to SCD, what would I be willing to do from a treatment standpoint at this time?

Doesn't seem like I should be exposed to medication until I really need them!

Thanks Guys,

Rich

 

[Clash]

You don't treat according to symptoms as there are a number of people with CD that are asymptomatic. The point of treatment it to strive for a healthy bowel with full mucosal healing in an effort to prevent permanent damage to your bowels.

My son was asymptomatic yet had simmering inflammation in his TI at the ileocecal valve. Within 1.5 years this simmering inflammation that created no symptoms had damaged the bowel to the point of requiring surgery.

Also, continuing active inflammation leads to a higher risk of bowel cancer.

A follow up colonoscopy would determine if you have reached clincial, endoscopic and histological remission and determine if mucosal healing is starting to occur.

Short of a colonoscopy you could utilize lab tests such as inflammation markers like CRP (although it isn't an accurate tool for everyone), imaging which can determine thickening of the area or fecal calprotectin stool test which can determine if inflammation is present. Unfortunately none of these can give the detailed results that a scope can give like endoscopic (mild inflammation not uet thickening the bowel), histological(biopsy) info or that mucosal healing is starting.

Maintenance meds do help with symptoms but that isn't the point of taking them. You just want to keep your bowel as healthy as possible.

Even if you choose to treat with diet alone it is important to get regular labs and testing to ensure what your feeling on the outside matches up with what is going on inside.

 

[ronroush7]

Hi. There could be damage that you might be unaware of that is going on inside of your body. I am glad that you are making dietary changes. Please keep us updated how you are doing.

 

[RNGirl]

Hi Rich, my story is a lot like yours. I had a random screening colonoscopy in 2011. I had 10 cm of mild to moderate inflammation in my terminal ileum. Wasn't actually diagnosed with crohns so we decided to wait on meds and do a follow up colonoscopy in 3 years. I had another colonoscopy in 2014. Same inflammation seen in the terminal ileum. Still no symptoms, diarrhea, pain, bleeding etc. The pathology report was exactly the same word for word. My doc decided to start me on Budesonide and wean me off of it while starting me on Pentasa. I am not at all trying to convince you to not move forward with starting meds. Everyone is different and I DO believe you can have silent inflammation and need to keep on top of things with a GI doctor. Personally, my inflammation had not changed in 3 years and in retrospect I think I would have held off taking the Pentasa. I had a horrible reaction to it (very uncommon) and I am still trying to get my body back. I feel like it stripped my gut flora and I am trying to rebuild my gut again. Plus, Pentasa really doesn't work in that part of the intestine either. I now have many food intolerance issues which I never had before.

I had to change my Gastro doc due to insurance and asked for another colonoscopy and she refused. She is pressuring me into an MRI (Enterography) or CT scan Enterography both of which contain artificial sweeteners which I now react horribly to. Like bloody diarrhea, body aches and systemic reactions for a couple of months. I would welcome another colonoscopy. In your case, in my opinion, I would continue to have follow up colonoscopies to monitor inflammation etc. before they start doing more risky procedures, injecting chemicals and prescribing more drugs. I currently take no drugs. I take supplements and eat a very very clean diet. I totally changed my lifestyle and eat no junk foods, processed foods and decreased the chemicals I put on my body. I feel really good most days until I eat a food that I don't tolerate. I am quite certain I will at some point require meds.

Good luck to you. I hope you get things figured out, but do continue to have GI follow up and screening colonoscopies even if you try to manage without meds for a while.

 

[ImDan]

I can relate to much of what you are guys are saying.

I found out via a Colonoscopy and have no symptoms apart from Night Sweats.

I've been on Pentasa for 4 months and went on Budesonide for 2 then tapered off. The Night sweats stopped during the Budesonide but have started again even though I'm still taking Pentasa - not sure if that means I'm flaring or not.

Currently still trying to figure out what tests are available to me in the UK to track inflammation as well as what medication course to commit to.. Big life decisions really

 

[ronroush7]

Do you have the fecal calprotectin test available? It is a stool test that measures inflammation. You might check with your doctor.

 

[pb]

I went 23 years un-medicated with my crohn's because I was either allergic or unresponsive to traditional oral meds (prednisone only worked for a few days the very first time I went on it) and I ended up developing an RV fistula as a result of decades of damaging inflammation. The difference is, I suffered daily for 23 yrs and there was nothing they could give me until I developed the fistula, then they put me on Humira which cleared up the fistula (tract will remain forever so next time I flare my fistula symptoms will return...I'd rather die before that happens and I'm not exaggerating) it also put my CD in remission....

what happened though, was about 12 yrs into flaring with my CD (it was always moderate to severe never mild like yours is) I ended up developing IBS as well and now I'm trying to deal with that, so here I am finally in remission with my CD only to be dealing with IBS....those are the risks you're taking (not to mention bowel cancer increased risk) by not treating your inflammation.

Of course everyone is different but the risks I mentioned above that I actually live with are very real possibilities for leaving inflammation untreated.

 

[chata]

For someone who has exercised their entire life and have always been a healthy eater, Paleo last 4 years I was a little stunned. Since I have no medical problems I was surprised to learn about my diagnosis to say the least, particularly since I am asymptomatic.

I've been reading this a lot here. People who've had great luck with their bodies, especially if they're young, tend to think that'll always continue. Moreover, those who exercise and watch their diets believe they're preventing bad health outcomes. They are - heart disease, for one; but not Crohn's, Sjogren's, and the other 80 or so autoimmune diseases. You did nothing wrong, and the good things you did couldn't have prevented it.

I agree with what everyone here has said. My doc has refused to allow me any more Remicade until I have another colonoscopy. He's right to do that, too - I'm an idiot. The colon cancer that CD patients get isn't the slow-growing type others get. It's aggressive and must be caught early.

Do the right thing. You've taken care of yourself for a long time, so why stop now?

 

[Rich Pell]

@clash
Thanks for sharing your knowledge and putting things in better perspective for me, helps with my understanding!
Appreciate your time.

 

[Rich Pell]

@RNGirl
Your feedback does suggest our approach to healthy eating is close to the same, good job!

I have always tried to eat healthy, wasn't raised on eating out or sodas. Regardless of where I worked people always talked about my eating habits (mostly the canned fish) because they were much better than the average person but I always knew they could be better.

When I started Paleo 4 years I could tell that I was improving the quality of food I was putting in my body. If you can't pronounce it, don't eat it.
Since transitioning to SCD I feel like my dietary intake is healthier than before, to me it makes clean since to eat this way. At 5'9" I went from 175lbs on Dec 1, 2015 to 169lbs today, which will be less tomorrow since I an on a clear liquid diet prepping for tomorrow's colonoscopy.

When I go for my post colonoscopy visit I will be better prepared to ask specific questions regarding my results, and my doctors philosophy regarding diet - because of the information and feedback I am receiving from this site.

As @Clash pointed out what everyone's goal and mine should be, is to prevent permanent damage.
I feel like I am a dedicated and disciplined enough individual to be able to control what I can to accomplish this result, but genetics may have other ideas.

I appreciate your feedback and insight.

My username should be:
ParamedicBoy

 

[Rich Pell]

@ImDan
I wish you well, hopefully your journey will allow you to eat the proper foods and get the best treatment available.
As I look back on different presentations along the way it is difficult to pinpoint how long I have had CD.
About 15 years ago I went to a Dermatologist for a persistent rash and all test results came back inconclusive. At the time he ordered an HIV test, to bad he didn't consider a colon screening, I would have had a jump start in my quest to prevent permanent damage.
I suspected a food allergy so I discontinued eating oatmeal and flax seed, the rash went away.
Over the years I had night sweats on occasion, but not enough for me to see a physician for it, guess I should have.

Best of Health!

 

[Rich Pell]

@ronroush7
I am a little perturbed at this point that my Doc has not ordered any test.
The only reason I know I am anemic is from my annual blood work up from my GP last year.
I am compiling a list of questions for my Doc regarding additional test to better understand the current state of my gut, and based on his response will determine if I change doctors.

Thanks for pointing this test out to me, I appreciate it.

 

[Rich Pell]

I went 23 years un-medicated with my crohn's because I was either allergic or unresponsive to traditional oral meds (prednisone only worked for a few days the very first time I went on it) and I ended up developing an RV fistula as a result of decades of damaging inflammation. The difference is, I suffered daily for 23 yrs and there was nothing they could give me until I developed the fistula, then they put me on Humira which cleared up the fistula (tract will remain forever so next time I flare my fistula symptoms will return...I'd rather die before that happens and I'm not exaggerating) it also put my CD in remission....

what happened though, was about 12 yrs into flaring with my CD (it was always moderate to severe never mild like yours is) I ended up developing IBS as well and now I'm trying to deal with that, so here I am finally in remission with my CD only to be dealing with IBS....those are the risks you're taking (not to mention bowel cancer increased risk) by not treating your inflammation.

Of course everyone is different but the risks I mentioned above that I actually live with are very real possibilities for leaving inflammation untreated.

@pb
I appreciate your response, I have so much to learn.
Could you elaborate on what you said you would "rather die before that happens", I am not understanding what you are referring to, thanks.

I have worked hard my whole life with plans to begin traveling in a few years and do not want to be one of those statistics where you die just before or after retirement.

Colon CA is certainly a concern.
My dad and uncle each had Prostate CA, and my uncle now has bladder CA so I am certainly at risk for CA.

Thanks for sharing, I am glad to hear you are experiencing some relief.

 

[ronroush7]

@ronroush7
I am a little perturbed at this point that my Doc has not ordered any test.
The only reason I know I am anemic is from my annual blood work up from my GP last year.
I am compiling a list of questions for my Doc regarding additional test to better understand the current state of my gut, and based on his response will determine if I change doctors.

Thanks for pointing this test out to me, I appreciate it.

I hope the best for you. My wife has wondered if the paleo diet might help me with my Crohn's Disease.

 

[Rich Pell]

@chata
You are so right, why stop now.
I have done cardio and strength training nearly 5 days a week for the last 35 years, if I hadn't invested in myself all this time my initial screening may have revealed CA with CD.
Growing up my parents who were always obese and did the yo-yo dieting thing over and over. I committed to myself years ago I would not be overweight and that I would eat properly/exercise.
-Annoying that I am now faced with malnutrition even if I swallow the right stuff.

Thanks for pointing out the aggressive nature of CA that CD patients have a tendency to acquire and motivating me to continue to take care of the only body I have.

*Had a great 10 mile interval session on my bicycle yesterday, racing cars in town, etc.
I can't imagine not being able to exert myself that way, along with the mental tension that gets relieved during and after exercise.
Takes my Type-A to a B+

Take care, thanks again for sharing!
-I have to be at the GI lab tomorrow at 11:45, one information gathering session at a time to assist in good decision making.

 

[Rich Pell]

I hope the best for you. My wife has wondered if the paleo diet might help me with my Crohn's Disease.

Hi Ron,
My doctor told me, the fact that I have been eating Paleo probably is the reason I am asymptomatic.

My dad had depression and did not have the discipline to change his eating habits for any significant period of time, he ate large meals of the wrong foods and suffered dearly for 25+ years.

My dad died on 3/27/2015 from metastatic CA originating in the Prostate.
When my doctor came into the room to inform me that he was diagnosing me with CD, he asked me if my dad was Richard. He didn't put it together since I didn't indicate I was a Jr. on my paperwork.
This was JUST my colon screening for turning 50, didn't plan on developing any type of relationship with my dads physician.
-I live in a town of 35,000 so there aren't too many GI's to choose from.
When he discovered who my dad was he was CONCERNED.
Indicating my dad had the worse case of CD he and his partner ever treated.

I do know my dad cheated all the time and he paid an agonizing price for it.
-My moms Cajun cooking was too much for him ;-)

Based on the response I received from my Doc and my personal experience you should seriously consider it, I would!

Rich

 

[ronroush7]

Hi Ron,
My doctor told me, the fact that I have been eating Paleo probably is the reason I am asymptomatic.

My dad had depression and did not have the discipline to change his eating habits for any significant period of time, he ate large meals of the wrong foods and suffered dearly for 25+ years.

My dad died on 3/27/2015 from metastatic CA originating in the Prostate.
When my doctor came into the room to inform me that he was diagnosing me with CD, he asked me if my dad was Richard. He didn't put it together since I didn't indicate I was a Jr. on my paperwork.
This was JUST my colon screening for turning 50, didn't plan on developing any type of relationship with my dads physician.
-I live in a town of 35,000 so there aren't too many GI's to choose from.
When he discovered who my dad was he was CONCERNED.
Indicating my dad had the worse case of CD he and his partner ever treated.

I do know my dad cheated all the time and he paid an agonizing price for it.
-My moms Cajun cooking was too much for him ;-)

Based on the response I received from my Doc and my personal experience you should seriously consider it, I would!

Rich

On the way home from church, I mentioned to friends that they found blood on my father's bed sheets. My friend said I wonder if your dad has Crohn's like you do.

 

[ncman]

I found out via a Colonoscopy and have no symptoms apart from Night Sweats.

I've been on Pentasa for 4 months and went on Budesonide for 2 then tapered off. The Night sweats stopped during the Budesonide but have started again even though I'm still taking Pentasa - not sure if that means I'm flaring or not.

Currently still trying to figure out what tests are available to me in the UK to track inflammation as well as what medication course to commit to.. Big life decisions really

I think the night sweats are a sign that the CD is active, and wouldn't advise you to just stay on Pentasa, it's too weak...I personally didn't find it did anything for me.

Check the following @ 1hr 21min mark, where they talk about how Pentasa was never officially approved for Crohn's, only for UC!!

https://www.youtube.com/watch?v=Icrb4mYLD8Y

 

[Rich Pell]

Speaking of active CD:

Periodically over the last 10 years or so I would get an unexplainable rash, allergy test were determined to be nonspecific dermatitis.
When I eliminated ground flax seed and oatmeal back then the rashes were gone, not sure which one was the culprit.

Two weeks ago I switched my liquid multi-vitamin slightly.
I went from taking Nature's Plus Source of Life Ultra, to Nature's Plus Source of Life Gold.
After a few days I developed a rash on my left elbow, stopped taking the Gold.

What I am curious to know is if I consume a substance that my body does not agree with and it results in a rash, is my CD being affected at the same time as well?
I realize this may not be an easy question to answer as everyone is different.

 

[ronroush7]

I have a nutritionist who has told me that flax would not be good for me and I have read that for some with Crohn's seeds can be bad.

 

[Clash]

It would depend on what you are calling a rash. There are some extra intestinal manifestations (EIMs) that can occur with CD, most prevalent involve the skin, eyes and joints. Though I believe most of the skin manifestations would not be said to look like a rash. A couple are erhthema nodosum and pyoderma gangrenosum.

My son, for instance, has both an eyes extra intestinal manifestation which is episcleritis and a joint EIM which is juvenile spondyloarthropathy. The episcleritis has flared concurrently with his CD flares whereas the JSpA (juvenile spondyloarthropathy) flares independent of active CD flares.

As far as flax seeds or seeds in general (as well as popcorn) it's not advisable for those with CD since the seeds can get caught in the ulceractions of the GI tract.

Now if the rash is caused by a food allergy that doesn't necessarily mean that it also affects your CD.

 

[Rich Pell]

@clash and All
Prior to undergoing Propofol today for my scope I showed my Doc the erythemic rash posterior to my right shoulder and he thought it was EIM.

Since the EIM is new I then asked him if the outside would be an indication of what he might expect to find on the inside, and he said no.

Does your experience tell you otherwise?

My Doc found my ulcer was worse, deeper, and the Entocort had little to no affect, I have been off of it for two weeks. He took a biopsy and I am to see him in 2 Mondays for a follow-up.

 

[my little penguin]

Each EIM is different
Some mirror disease activity
Son are just "extra" bonus prizes that tag along with crohns
Glad you scope is done
Hope your Gi has a good plan to move forward


http://online.ccfa.org/site/DocServer/Kim.pdf?docID=25687

Explains

 

[Rich Pell]

I was able to get information regarding dermatitis in the EIM sub forum, thanks for the feedback.

So the answer to my original post was clearly, yes a follow-up is necessary.
Since I assumed the Entocort worked, tricked by Crohn's again.

Now a waiting game to see if the biopsy reveals anything that will guide us on the proper medication path and if possible give me some insight as to what I may be consuming that my body doesn't like.

In the meantime I will continue to follow an SCD and continue with my stress reliever, exercise!

 

[Cat-a-Tonic]

Good to hear that you're continuing with exercise - there have been some studies done that have suggested that regular exercise can help keep IBD in remission, and can also lessen the severity of the flares when you do have flare-ups. I definitely consider exercise to be a component of my treatment - it can't keep me in remission by itself, but it sure helps me feel better!

 

[ronroush7]

Good to hear that you're continuing with exercise - there have been some studies done that have suggested that regular exercise can help keep IBD in remission, and can also lessen the severity of the flares when you do have flare-ups. I definitely consider exercise to be a component of my treatment - it can't keep me in remission by itself, but it sure helps me feel better!

I used to work out on an elliptical and my GI was pleased with that.

 

[pb]

@pb
I appreciate your response, I have so much to learn.
Could you elaborate on what you said you would "rather die before that happens", I am not understanding what you are referring to, thanks.

I have worked hard my whole life with plans to begin traveling in a few years and do not want to be one of those statistics where you die just before or after retirement.

Colon CA is certainly a concern.
My dad and uncle each had Prostate CA, and my uncle now has bladder CA so I am certainly at risk for CA.

Thanks for sharing, I am glad to hear you are experiencing some relief.

Just me being dramatic kinda lol, I've gone through so many awful pains with having crohn's that I honestly don't think I can mentally/emotionally handle anymore of that and it's depressing to boot! That's why I'd rather die then live through the pain of my fistula issues reappearing.

The good thing is, with having IBD we get more attention with scopes so likely more often than not, IBDers that do get any kind of GI cancers are often caught early enough for intervention....sorry about your family that have suffered with cancers, it does slightly increase your risk and that's a scary fact but the risks aren't going to necessarily jump way up and you're monitored well with having IBD and getting scoped.

All you can do is continue with a good healthy lifestyle and pay attention to anything your body's telling you.

 

[Rich Pell]

@pb
Thanks for your candid response, motivates asymptomatic people like myself to continue to treat our condition as best we can, so we stay away from the types of experiences you have encountered for as long as we can.

 

[Rich Pell]

Now that I have had time to consider my preliminary results I am perplexed about the current state of my gut and what I should do.

As soon as I was dx. with CD I did the following:
- 60 days of Entocort
- Stopped eating raw rough vegetables, now only in smoothies or purees
- Stopped drinking alcohol, 4 bottles/week of red wine
- Stopped drinking daily Black Tea due to tannins slowing absorption of iron, Anemic
- Continued eating Paleo, using legal foods from SCD
- Loss 8 lbs, now weigh 168 at 5' 9"
- Eat nut butters instead of whole nuts
- Eating less red meat and pork, eating more fish and chicken

And the result is a worsening of my lesion.

I won't get details of the biopsy until 2/29.

The other change is what appears to be EMI on various locations that I didn't have before.

The way I see things is for me to continue to do what I have been doing because it is what I know, and hope to be appropriate.

Any suggestions?

 

[ronroush7]

Where is the lediom? Remind me what meds you are on?,

 

[Rich Pell]

Terminal Ileum, no meds for 3 weeks.

 

[my little penguin]

Diet is wonderful addition but honestly in most cases it is just not enough to fix crohns by its self
Entocort only works on part of the Gi tract and not the whole tract
As I said before you can decide med xyz is what you want to do based on risk
But crohns doesn't work that way
The med chooses you
No two meds work the same for the people

Which is why my kiddo had mild to moderate disease
But way too many EIM and was only fixed by biologics plus immunosuppressants
Hope you find the right med soon

 

[Rich Pell]

Yesterday's follow-up visit revealed increased inflammation from my initial scope (11/15/2015) to my second scope on 2/15/2016.
Best we can tell I have probably had CD for 6-8 months, based on the annual blood work I have been getting since turning 40.
I had blood drawn on 11/09/2015 and it was the first time my levels came back consistent with Anemia.

Following dx I took Entocort for 60 days without success.

Biopsy confirmed CD, other than that Doc didn't provide any additional details.

I began taking 4 Apriso 0.375g/day today at my doctors recommendation.

Asked if we should perform fecal test and he declined.
Drew blood with a CBC and CMP panel.

I am considering a different physician, there is another recommended Doc 25 miles away that I am considering making an appointment with. One of his degrees is in Zoology, he may be more progressive.
I feel like if I stay where I am I would not be treated unbiased because this group treated my Dad for 20 years and are already relating my condition directly to my Dad's.

 

[ronroush7]

Wish you best.

 

[smt]

Now that I have had time to consider my preliminary results I am perplexed about the current state of my gut and what I should do.

As soon as I was dx. with CD I did the following:
- 60 days of Entocort
- Stopped eating raw rough vegetables, now only in smoothies or purees
- Stopped drinking alcohol, 4 bottles/week of red wine
- Stopped drinking daily Black Tea due to tannins slowing absorption of iron, Anemic
- Continued eating Paleo, using legal foods from SCD
- Loss 8 lbs, now weigh 168 at 5' 9"
- Eat nut butters instead of whole nuts
- Eating less red meat and pork, eating more fish and chicken

And the result is a worsening of my lesion.

I won't get details of the biopsy until 2/29.

The other change is what appears to be EMI on various locations that I didn't have before.

The way I see things is for me to continue to do what I have been doing because it is what I know, and hope to be appropriate.

Any suggestions?

May I ask the actual blood results, especially of the inflammatory markers such as ESR and CRP?

 

[cdnrose]

I find this interesting. I had my first and only colonoscopy in May 2015 and received my CD dx shortly thereafter ( GI felt the CD was the cause of my Rheumatoid arthritis which I was diagnosed with in 2012 so obviously have had CD for quite a while).
I was put on Entocort but had a bad reaction so went off it and started Remicade in Sept 2015 and was told I'm in remission in Jan 2016. I asked about a colonoscopy to check on the inflammation and was told that I won't need one for 10 years. Seems strange that I won't need one for 10 years but others get them when they are asymptomatic.

 

[ronroush7]

Hi. I am 59. I forget the exact number but it is like every 2 or 4 years that they require a colonoscopy of me.

 

[Rich Pell]

May I ask the actual blood results, especially of the inflammatory markers such as ESR and CRP?

@SMT
I would have no reservations sharing my test result, if I had these results.
My inflammatory markers were not ordered.

Do you suggest I request this test?

 

[Rich Pell]

I find this interesting. I had my first and only colonoscopy in May 2015 and received my CD dx shortly thereafter ( GI felt the CD was the cause of my Rheumatoid arthritis which I was diagnosed with in 2012 so obviously have had CD for quite a while).
I was put on Entocort but had a bad reaction so went off it and started Remicade in Sept 2015 and was told I'm in remission in Jan 2016. I asked about a colonoscopy to check on the inflammation and was told that I won't need one for 10 years. Seems strange that I won't need one for 10 years but others get them when they are asymptomatic.

The way my physician plans on evaluating whether or not the 30 day regiment of Apriso reduces my inflammation is to perform blood work. He indicated he ways to draw some blood 90 days after I stop taking the meds, to determine if I am still Anemic.

I agree with you, when I become symptomatic I would hope I can get scoped at least once a year. Take Care, Rich

 

[CavsFan]

Any update on how things are going? I am in a similar situation and am debating on getting a second colonoscopy or if I should wait a few more years.