Another question…WWYD medical question

[Scarlett]

I am 57. I had my first colonoscopy 3 years ago.  I had a lot of diverticula but no infections. One polyp which was removed and benign. But….they discovered my colon was extra long and twisted.   I guess most colonoscopies are  20 min, mine took an hour.  I was told to eat a high fiber diet and I have worked hard on that.  I don’t really have any trouble at all.  
 

Doc told me to come back in 3 years. They called today and I let them set me up for April something. But I don’t want to and I think there is more risk to my extra long colon than there is benefit. 
 

Am I being super foolish if I refuse it for now?

Edited March 9, 2023 by Scarlett

[Shoeless]

Could you do cologuard instead of the scope? 

[Scarlett]

1 minute ago, Shoeless said:

Could you do cologuard instead of the scope? 

I am sure.  

[EKS]

I'd be interested to know why they said 3 years.  Isn't it normally 10?

[Jaybee]

4 minutes ago, EKS said:

I'd be interested to know why they said 3 years.  Isn't it normally 10?

When you have polyps removed, they usually ask you to come back in 3.

[Scarlett]

7 minutes ago, EKS said:

I'd be interested to know why they said 3 years.  Isn't it normally 10?

Before the first one he told me if all was well I wouldn’t have to have another for 10 years.  I guess his findings made me high risk.  That is how he is getting insurance to pay for it after 3 years. 

[EKS]

3 minutes ago, Scarlett said:

Before the first one he told me if all was well I wouldn’t have to have another for 10 years.  I guess his findings made me high risk.  That is how he is getting insurance to pay for it after 3 years. 

Then I think you should do it. 

[Junie]

I would do it.  I don't know that you're at any higher risk than anyone else and if the doctor thinks that because of your previous findings you should be evaluated after three years, than I would trust him.

[Shelydon]

I would definitely do it.

[Jean in Newcastle]

You had a polyp. 3 years is normal and is what is advisable in that situation.  

[Storygirl]

DH had polyps found during his colonoscopy, and he was told to come back in three years. So it is standard. Some people are more prone to polyps, and some polyps can develop into cancer. I would not skip it.

[kristin0713]

In the past few weeks, I have heard of one young person die of colon cancer that was missed and another one diagnosed stage three. I’m 44 and considering getting screened. I would definitely go in your case. 

[Corraleno]

I just had a colonoscopy a couple of months ago, they found 1 small polyp, and said to come back in 5 years. And I even have a family history of colon cancer (2 brothers diagnosed in their 40s, one died). I should ask my PCP at my wellness check next month if she thinks I should go more often.

ETA: I guess it depends on the size and type of polyp. From Mayo Clinic:

"If your doctor finds one or two polyps less than 0.4 inch (1 centimeter) in diameter, he or she may recommend a repeat colonoscopy in 7 to 10 years, depending on your other risk factors for colon cancer. Your doctor will recommend another colonoscopy sooner if you have:
More than two polyps
A large polyp — larger than 0.4 inch (1 centimeter)
Polyps and also residual stool in the colon that prevents complete examination of the colon
Polyps with certain cell characteristics that indicate a higher risk of future cancer
Cancerous polyps

Edited March 9, 2023 by Corraleno

[Scarlett]

Ugh.  

[Scarlett]

Just now, Corraleno said:

I just had a colonoscopy a couple of months ago, they found 1 small polyp, and said to come back in 5 years. And I even have a family history of colon cancer (2 brothers diagnosed in their 40s, one died). I should ask my PCP at my wellness check next month if she thinks I should go more often.

See this is my point.  How do they decide all this stuff?

Also if you ever see what a person goes through with a perforated bowel you might rethink the risk/ benefit,  

[Corraleno]

2 minutes ago, Scarlett said:

See this is my point.  How do they decide all this stuff?

Also if you ever see what a person goes through with a perforated bowel you might rethink the risk/ benefit,  

I just edited my post with the guidelines from the Mayo Clinic — it may be that your polyp was larger, or they were concerned that there were areas they couldn't see on the previous colonoscopy?

[Happy Camper]

Cologuard is for people at low risk, so not advisable in your case. What I don't know is if your next colonoscopy is clear, does that change you to low risk, making you eligible for Cologuard? Or are you always going to be considered high risk? Perhaps that info is out there, but I haven't looked yet. (I'm in the same boat, btw, so I'd like to know!) 

[Scarlett]

26 minutes ago, Corraleno said:

I just edited my post with the guidelines from the Mayo Clinic — it may be that your polyp was larger, or they were concerned that there were areas they couldn't see on the previous colonoscopy?

Here is the size

Size: 0.9 x 0.8 x 0.4 cm in aggregate

 

[Scarlett]

So I am assuming mine is considered large?  Ugh

Also I noticed the biopsy said precancerous……is that a step above benign?

[Scarlett]

39 minutes ago, Scarlett said:

See this is my point.  How do they decide all this stuff?

Also if you ever see what a person goes through with a perforated bowel you might rethink the risk/ benefit,  

I just realized this sounded accusatory toward @Corraleno….but I meant the general You. 

[Katy]

You need to go now. You’re high risk and if you don’t go and end up with an aggressive colon cancer that could be totally prevented with this small procedure you’ll be kicking yourself for not going now. Seriously. We have a 40 year old friend, a single mom with two middle school boys who ho just got diagnosed with stage 4 colon cancer. She had no symptoms, she only went in because someone in her family made her high risk. 

[Shoeless]

Oh yeah, you need to have it done. Sorry! They probably won't agree to cologuard for you since you've already had a polyp removed and the anatomy of the colon is atypical. 

It's not fun, but it's better to have it done. 

[Scarlett]

2 minutes ago, Katy said:

You need to go now. You’re high risk and if you don’t go and end up with an aggressive colon cancer that could be totally prevented with this small procedure you’ll be kicking yourself for not going now. Seriously. We have a 40 year old friend, a single mom with two middle school boys who ho just got diagnosed with stage 4 colon cancer. She had no symptoms, she only went in because someone in her family made her high risk. 

But…..I mean, sad as that is……I had one three years ago .  Soooo….I just struggle wondering if it is just slightly overkill. 

[Scarlett]

1 minute ago, Shoeless said:

Oh yeah, you need to have it done. Sorry! They probably won't agree to cologuard for you since you've already had a polyp removed and the anatomy of the colon is atypical. 

It's not fun, but it's better to have it done. 

Ugh.

[Scarlett]

Ok, well, my husband wants me to do it and the consensus here is to do it,  

Ugh and double ugh.  

[Katy]

24 minutes ago, Scarlett said:

But…..I mean, sad as that is……I had one three years ago .  Soooo….I just struggle wondering if it is just slightly overkill. 

No, it is not. This is the only cancer that is preventable with this small procedure. Don’t risk it. 

[Laura Corin]

Do you have the option of a stool test  for occult blood instead? The US is an outlier in the developed world in using routine colonoscopy. 

[Pawz4me]

33 minutes ago, Laura Corin said:

Do you have the option of a stool test  for occult blood instead? The US is an outlier in the developed world in using routine colonoscopy. 

Those are used here for people without any known risk factors. But if you've had a colonoscopy and a polyp (or polyps) has been found then colonoscopies are always recommended going forward. I've had two colonoscopies. Non-cancerous polyps were found during both. My understanding is that "non cancerous" means the cells in the polyp are of a type that aren't likely to ever become cancerous. But I'm on the five year plan because we know my colon tends to grow polyps. I believe "pre cancerous" means that the type of cells found in @Scarlett's polyp were likely to eventually become cancer had they not been removed early. So yes, she needs to go for a colonoscopy as scheduled.

[Bambam]

I would do it. I have family history on both sides, so I have to go every 5 years. I *think* I'm due to go this year, and not looking forward to the prep, but I also don't want colon cancer. 

I hope the prep is easier for you than last time. I hope they find nothing when they scope so you can go longer between sessions. 

ETA: Seeing this made me realize I needed to check when my last one was. 2018, so I need to contact doctor and arrange for another one. Fun, fun, fun. 

Edited March 9, 2023 by Bambam

[SKL]

Interesting - I was told 5 years after finding 2 polyps.

3 years, 5 years, not a big difference.  Maybe I'd go for 4 years, but not much longer than that.

I'm not sure what the risk (of going more often) would be to your colon though.

[Kassia]

I think you should do it too.  It's too risky not to.  I have a long twisty colon and it's about impossible to get colonoscopies done.  I have to have extra long preps and still don't always get cleaned out enough.  It's no fun but you'll be glad when it's over.

 

 

[SKL]

Yeah my mom waited too long and has serious lifelong effects ... and had she waited much longer, she would probably have died.  Colon cancer is pretty unforgiving.  It's worth the prevention IMO.

[Scarlett]

39 minutes ago, SKL said:

Interesting - I was told 5 years after finding 2 polyps.

3 years, 5 years, not a big difference.  Maybe I'd go for 4 years, but not much longer than that.

I'm not sure what the risk (of going more often) would be to your colon though.

Probably because my one polyp was big and precancerous.

37 minutes ago, Kassia said:

I think you should do it too.  It's too risky not to.  I have a long twisty colon and it's about impossible to get colonoscopies done.  I have to have extra long preps and still don't always get cleaned out enough.  It's no fun but you'll be glad when it's over.

 

 

Prep was not too terrible last time.  I remember the doctor said I was clean out well. 
 

I think what has me so so freaked out is my poor aunt after a surgeon perforated her colon (not during a colonoscopy).  The ICU nurses said it was the worst thing they had ever encountered.  But I have to remember that 1) surgeon is not a good doc.  Because 2) he left on vacation the day after her surgery 3) had no restrictions on her diet 4) This surgeon has already done one colonoscopy on me so knows what to expect as to my extra long twisted colon.

[Scarlett]

38 minutes ago, SKL said:

Yeah my mom waited too long and has serious lifelong effects ... and had she waited much longer, she would probably have died.  Colon cancer is pretty unforgiving.  It's worth the prevention IMO.

I guess the same with my aunt.  Although she was younger than I am now when she got colon cancer and had ignored warning signs for years. 

[Kassia]

4 minutes ago, Scarlett said:

I guess the same with my aunt.  Although she was younger than I am now when she got colon cancer and had ignored warning signs for years. 

This happened to my neighbor - ignored the signs and ended up dying young from colon cancer.  Only in his early 40s with four kids.  😞

[Scarlett]

22 minutes ago, Kassia said:

This happened to my neighbor - ignored the signs and ended up dying young from colon cancer.  Only in his early 40s with four kids.  😞

Your post made me Google warning signs…..and apparently once you get the main symptoms it has already advanced.

[Scarlett]

3 years ago doc said eat a high fiber diet.  So I have focused on that pretty good for three years.   When I calculate how much fiber I need I come up with 25 grams per day.  
 

But is ‘high fiber’ more than that?  Very confusing. 

[Pawz4me]

Just now, Scarlett said:

3 years ago doc said eat a high fiber diet.  So I have focused on that pretty good for three years.   When I calculate how much fiber I need I come up with 25 grams per day.  
 

But is ‘high fiber’ more than that?  Very confusing. 

I think 25 grams is recommended for women. To me "high fiber" would have to be more than that.

[Corraleno]

12 minutes ago, Scarlett said:

3 years ago doc said eat a high fiber diet.  So I have focused on that pretty good for three years.   When I calculate how much fiber I need I come up with 25 grams per day.  
 

But is ‘high fiber’ more than that?  Very confusing. 

I think 25 grams is the recommended "normal" level of fiber — most people eating a standard American diet get much less than that, but the SAD is a very fiber-deficient diet. So I would aim for 30g or more. I usually get around 30-35 g/day.

[Selkie]

20 minutes ago, Scarlett said:

3 years ago doc said eat a high fiber diet.  So I have focused on that pretty good for three years.   When I calculate how much fiber I need I come up with 25 grams per day.  
 

But is ‘high fiber’ more than that?  Very confusing. 

Dr. Michael Greger (of How Not to Die fame, who analyzes every single nutritional study that comes out) says that humans are meant to consume up to 100 grams of fiber per day, but the average American only gets 16 grams. His recommendation for a bare minimum is 25-29 grams per day.

[Corraleno]

5 hours ago, Kassia said:

This happened to my neighbor - ignored the signs and ended up dying young from colon cancer.  Only in his early 40s with four kids.  😞

Both of my brothers had colon cancer in their 40s. One ignored the symptoms for way too long and by the time he was diagnosed at 48, it was too late and he died in less than a year. That prompted the rest of the family to get tested; my sister and I were clear but my other brother was diagnosed with stage 2 or 3 at the age of 45 and he was totally shocked since he didn't have any symptoms at all. He had a large section of colon removed and now has frequent colonoscopies, but he is only alive today because it was caught when it was — if he'd waited until he had symptoms it would have been too late for him, too.

[Scarlett]

19 minutes ago, Pawz4me said:

I think 25 grams is recommended for women. To me "high fiber" would have to be more than that.

 

10 minutes ago, Corraleno said:

I think 25 grams is the recommended "normal" level of fiber — most people eating a standard American diet get much less than that, but the SAD is a very fiber-deficient diet. So I would aim for 30g or more. I usually get around 30-35 g/day.

 

2 minutes ago, Selkie said:

Dr. Michael Greger (of How Not to Die fame, who analyzes every single nutritional study that comes out) says that humans are meant to consume up to 100 grams of fiber per day, but the average American only gets 16 grams. His recommendation for a bare minimum is 25-29 grams per day.

None of these recommendations seem to account for the difference in weight.  A person who weighs 150 surely needs less fiber grams than a person who weighs 300. 

[AmandaVT]

One of my dear friends passed away from colon cancer at 50. Diagnosed at 49. His only symptom was occasional constipation that got worse. I just had 2 colonoscopies 6 months apart, and it was fine. I'd rather go monthly than go through what he did with his treatment and death. He was in so much pain and went through hell during the last 9 months of his life after diagnosis. 

[lauraw4321]

12 minutes ago, Scarlett said:

 

 

None of these recommendations seem to account for the difference in weight.  A person who weighs 150 surely needs less fiber grams than a person who weighs 300. 

I don’t think a persons weight has anything to do with their need for fiber. 

[Pawz4me]

16 minutes ago, Scarlett said:

 

 

None of these recommendations seem to account for the difference in weight.  A person who weighs 150 surely needs less fiber grams than a person who weighs 300. 

Weight matters for some things, but I don't think this is one of them. Plus the 25 g recommendation is for women--the recommendation for adult men is higher. I'm not sure what the average weight of an adult female in the US is, but I'm guessing it's a lot closer to 150 than 300. I weigh significantly less than 150 and aim for way more than 25 g of fiber a day.

[cintinative]

My husband had this test which I jokingly called the "magic school bus" test. He had to do a cleanout, and then he swallowed a little camera which traveled down through his intestines taking pictures.  The negative is it is expensive and takes forever for them to review all the pictures.  But if you are worried they are going to puncture something while they do your colonoscopy, maybe an alternate procedure is a possibility? 

 

 

[Corraleno]

1 minute ago, Scarlett said:

None of these recommendations seem to account for the difference in weight.  A person who weighs 150 surely needs less fiber grams than a person who weighs 300. 

The level of fiber needed is a function of the total food/calorie intake more than body weight. The recommendation of 25-30 g/day is for an average woman at a healthy weight consuming ~2000 calories/day.

A 250 lb sedentary person on a diet who is eating 1500 calories/day may not need as much fiber as a 150 lb marathon runner who is eating 4000 calories/day — although higher levels of fiber have been proven to help people lose weight, so more fiber is nearly always a good idea.

And the higher the percentage of the diet that is processed and fiber-less foods (animal products, oils, refined flours and sugars) the more fiber is needed to compensate for that.

Also make sure you're eating a good balance of both soluble fiber (to feed the good gut microbes and keep the bad guys from taking over) and insoluble fiber (to move things along).

[Selkie]

2 minutes ago, Pawz4me said:

Weight matters for some things, but I don't think this is one of them. Plus the 25 g recommendation is for women--the recommendation for adult men is higher. I'm not sure what the average weight of an adult female in the US is, but I'm guessing it's a lot closer to 150 than 300. I weigh significantly less than 150 and aim for way more than 25 g of fiber a day.

I just read the other day that the average weight of an adult female in the US is now 170 pounds.

[Kassia]

33 minutes ago, Corraleno said:

Both of my brothers had colon cancer in their 40s. One ignored the symptoms for way too long and by the time he was diagnosed at 48, it was too late and he died in less than a year. That prompted the rest of the family to get tested; my sister and I were clear but my other brother was diagnosed with stage 2 or 3 at the age of 45 and he was totally shocked since he didn't have any symptoms at all. He had a large section of colon removed and now has frequent colonoscopies, but he is only alive today because it was caught when it was — if he'd waited until he had symptoms it would have been too late for him, too.

I'm sorry about your brother who died.  What a strange feeling for your living brother - to only be alive due to his brother's cancer.  

My MIL has Stage IV colon cancer and is doing remarkably well.  She's 85.

 

[Corraleno]

6 minutes ago, Selkie said:

I just read the other day that the average weight of an adult female in the US is now 170 pounds.

And the average BMI is now 29.6 — just a few tenths below obese.

In 1960 the average American woman weighed 140 lbs and the average BMI was 24.8, just below overweight. Average fiber intake in 1960 (men & women combined) was ~34g/day — more than double what most people get today.