6 months of symptoms - colonoscopy results

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StillAnxious
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6 months of symptoms - colonoscopy results

Postby StillAnxious » Sun Feb 11, 2018 10:57 pm

Hi all. I find myself here in the midst of another battle with anxiety, hoping for some kind of guidance, whether it be for colonoscopy or counseling for this madness.

Last July, I came down with an upper respiratory issue. Fast forward three weeks of various antibiotics and resulting severe constipation, and I suddenly experience this stabbing, cramping catch in my left side. It evolved overnight to an even worse cramping pain in my side, directly under my ribs, so that it sent me to the ER. CT scan done, x-ray done, no diagnosis. No blood in stool, no diarrhea. A week later, I’m back again with a similar pain in the right. CT scan again but with contrast on suspicion of colitis. Again, no results.

This pain has been with me since August. It’s not crippling- I dare say it’s tapered off some since those ER trips. But it’s there. I’ve been to a gastroenterologist twice, who thinks it’s musculoskeletal and “slight IBS” and doesn’t see the benefit to a colonoscopy because I have no weight loss, nausea/vomiting, diarrhea, or thin stools. I’ve been to my regular doctor countless times. I’ve had 2 more x-rays that showed nothing more than full bowels/constipation. In this time I’ve had occasional spots of bright red blood on the outside of stools ( which are usually very large, typical for my pre-antibiotic norm ) when they’re harder to pass.

I’ve had a strange pulling sensation in the lower left side of my abdomen, right above my hip bone, that started with all this. Almost like a stretched muscle. It comes and goes, but I feel like I’ve brought it on once by straining hard to go. No particular foods seem to trigger any issues. One doctor in January gave me Linzess, and after a week, I thought there was improvement. Now here I am again with this weird pulling sensation and intermittent pain.

I’m 31. No family history of colorectal cancer. Four full CBCs since August with steady, good numbers. One ESR in January with a 14 on a scale of 0-29. I’m scared out of my mind that this is colon cancer and we’ve just lost 6 months because no one thinks my symptoms warrant the colonoscopy. I even requested one for peace of mind, but the gastro won’t schedule it without seeing me again, despite an order/referral from my PCP. My step-uncle has been battling stage IV for 4-5 years now and the man is an absolute powerhouse, but I don’t think I have that kind of strength in me.

Does this sound familiar to any of you? I’m so sorry to be here, when all of you are dealing with such very very real problems. But I don’t know where to turn.
Last edited by StillAnxious on Mon Feb 19, 2018 1:14 pm, edited 1 time in total.

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O Stoma Mia
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Re: 6 months of symptoms - colonoscopy or counselor?

Postby O Stoma Mia » Mon Feb 12, 2018 2:33 am

StillAnxious wrote:...no one thinks my symptoms warrant the colonoscopy. I even requested one for peace of mind, but the gastro won’t schedule it without seeing me again, despite an order/referral from my PCP...

Does this sound familiar to any of you? ...

Welcome to the Forum and I'm sorry you find yourself here.

Yes, this sounds familiar because it is a common complaint of young folks who have persistent bowel problems. Recent research has shown that, on average, young adults who have persistent bowel problems have to see two to three different doctors before they can find one that will prescribe a colonoscopy:

O Stoma Mia wrote:Colon Cancer often Misdiagnosed in Young Patients
https://www.healio.com/gastroenterology/oncology/news/online/%7B647a0d2d-0ba6-44ad-9369-84834ff0dede%7D/colon-cancer-often-misdiagnosed-in-young-patients

http://go.ccalliance.org/2017youngonsetsurvey

    "The results showed that 82% were initially misdiagnosed, and 73% presented with late-stage disease. Additionally, 71% received a colon cancer diagnosis, 20% received a rectal cancer diagnosis, 67% saw at least two doctors before receiving a cancer diagnosis, 62% had no family history of CRC, and 15% said an ER visit led to a colonoscopy and their CRC diagnosis."

In my opinion, if you can find a doctor to prescribe a colonoscopy you should go for it, because you have had symptoms since August and these symptoms deserve a proper diagnosis. If the problem is indeed inside your colon/rectum, then a colonoscopy will find it. If it is something else, then it might require an MRI or something different to look elsewhere.

EDIT

If your problem is indeed Musculoskeletal IBS, then apparently there are physiotherapy routines to address the underlying muscle imbalances. You might have to see another kind of doctor (Doctor of Chiropractic) to fix the problem.

Irritable Bowel Syndrome and Musculoskeletal Pain Problems
http://richmondchiropracticsolutions.com/blog/irritable-bowel-syndrome-and-musculoskeletal-pain-problems

StillAnxious
Posts: 12
Joined: Sun Feb 11, 2018 10:32 pm

Re: 6 months of symptoms - colonoscopy or counselor?

Postby StillAnxious » Mon Feb 12, 2018 8:00 am

Thank you for your reply. So many times on this journey I’ve heard that it would be very rare for someone my age to receive a CRC diagnose. While I don’t want to be that unicorn, everything I’ve read makes me believe that it really isn’t that rare anymore. It’s certainly frustrating to feel like I’m not being taken seriously because of my age.

I appreciate the second link as well. Very interesting, and does give me a bit more hope that that’s really what it could be.

Deb m
Posts: 431
Joined: Tue Jan 14, 2014 10:08 am

Re: 6 months of symptoms - colonoscopy or counselor?

Postby Deb m » Mon Feb 12, 2018 8:54 am

You need to have a scope done now!

DarknessEmbraced
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Facebook Username: Riann Fletcher
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Re: 6 months of symptoms - colonoscopy or counselor?

Postby DarknessEmbraced » Mon Feb 12, 2018 10:20 am

I'm sorry you're going through so much and welcome to the board!*hugs* I would find a doctor who will perform a colonoscopy.*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

StillAnxious
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Re: 6 months of symptoms - colonoscopy or counselor?

Postby StillAnxious » Mon Feb 12, 2018 10:44 am

Thank you for replying. *hugs*

After a particularly bad, sleepless night last night (not pain-wise: all I have right now is that pulling sensation. The only pain today seems to be that same old spot under the ribs, close to the surface, when pressed. ), I called first thing this morning and told them I was scared and just couldn’t wait til my March gastro follow-up.

I’m scheduled for the colonoscopy next Monday morning. Funny thing, found out my PCP just sent request for eval, not a test.

I hope with all my heart to have only good news. So many things have lined up like IBS-C, but I can’t live with just guesswork.

StillAnxious
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Joined: Sun Feb 11, 2018 10:32 pm

Re: 6 months of symptoms - colonoscopy or counselor?

Postby StillAnxious » Tue Feb 13, 2018 9:47 am

Forgot to mention, my newest round of bloodwork in January was normal except for elevated liver enzymes - 40 on a scale up to 33. Dr said it was likely due to meds that I was on, but I’d been off that med for two weeks.

If both of my August CT scans were clear, could I have developed liver mets that fast?

This is going to the longest week of my life, I think. I’m struggling. I can’t find anything with similar symptoms to mine - it’s slight pelvic soreness but only when pressed, and that weird pulling feeling that came back. I can’t sleep at night for thinking it’s a massive tumor.

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Bev G
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Re: 6 months of symptoms - colonoscopy or counselor?

Postby Bev G » Wed Feb 14, 2018 12:39 am

I think the chance that you have cancer, particularly metastatic cancer, is next to NONE. I have about 10 reasons for this opinion, but you've already heard several of them. Have you had issues with any health anxiety in your life? The fears that go with that are huge, and hearing "it's probably nothing" doesn't help, I know, but it's probably nothing. I was in nursing school 40 years ago, and I diagnosed myself with a new disease every week. While I don't imagine the colonoscopy will show anything, it's good you're having it done for your own peace of mind. Do your best to not focus on this until you get your results back, then please be sure to tell us what the results are. Take care and hang in there.

Best wishes,

Bev
8 year stage IV survivor
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

StillAnxious
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Re: 6 months of symptoms - colonoscopy or counselor?

Postby StillAnxious » Wed Feb 14, 2018 8:44 pm

Bev G wrote:I think the chance that you have cancer, particularly metastatic cancer, is next to NONE. I have about 10 reasons for this opinion, but you've already heard several of them. Have you had issues with any health anxiety in your life? The fears that go with that are huge, and hearing "it's probably nothing" doesn't help, I know, but it's probably nothing. I was in nursing school 40 years ago, and I diagnosed myself with a new disease every week. While I don't imagine the colonoscopy will show anything, it's good you're having it done for your own peace of mind. Do your best to not focus on this until you get your results back, then please be sure to tell us what the results are. Take care and hang in there.

Best wishes,

Bev
8 year stage IV survivor


Just in the last year, yes, health anxiety is the bear I can’t escape. It reared its head in July, when part of my face went numb over serious sinus inflammation. I couldn’t sleep. I was barely eating. Not because I wasn’t hungry, but I was too tense and terrified to even think about it. I was constantly on edge, having meltdowns frequently. I cried for most of a weekend over my ENT ordering a CT scan, as an example. Then came the wide variety of antibiotics. I got constipated, and ( TMI sorry ) was often straining way way too hard to go. I keep trying to tell myself that the sudden pain I developed had to have something to do with all of that ( it was a month into it all), that Amoxicillin has triggered IBS in people before or just simply jacked up my insides, but I go so far out into left field when I self-diagnose.

Sending all the good thoughts and prayers your way. Thank you, Bev.

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O Stoma Mia
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Re: 6 months of symptoms - colonoscopy or counselor?

Postby O Stoma Mia » Thu Feb 15, 2018 2:48 am

Illness anxiety is a known disorder and has its own diagnostic code under the DSM-5 system

Illness Anxiety Disorder DSM-5 300.7 (F45.21)
https://www.theravive.com/therapedia/illness-anxiety-disorder-dsm--5-300.7-(f45.21)

This disorder also has an insurance billable code under the 2018 ICD-10-CM system
... F41.1 is a billable/specific ICD-10-CM code that can be used to indicate a diagnosis for reimbursement purpose

StillAnxious
Posts: 12
Joined: Sun Feb 11, 2018 10:32 pm

Re: 6 months of symptoms - colonoscopy or counselor?

Postby StillAnxious » Thu Feb 15, 2018 9:35 pm

O Stoma Mia wrote:Illness anxiety is a known disorder and has its own diagnostic code under the DSM-5 system

Illness Anxiety Disorder DSM-5 300.7 (F45.21)
https://www.theravive.com/therapedia/illness-anxiety-disorder-dsm--5-300.7-(f45.21)

This disorder also has an insurance billable code under the 2018 ICD-10-CM system
... F41.1 is a billable/specific ICD-10-CM code that can be used to indicate a diagnosis for reimbursement purpose


I wonder if my doctor has been billing my insurance this way for the last couple months when I turn up. Because if that had been a checklist, I’d have nearly all of it filled in. Just a few days from adding invasive diagnostic procedures to that list too.

I appreciate this.

StillAnxious
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Re: 6 months of symptoms - colonoscopy results

Postby StillAnxious » Mon Feb 19, 2018 1:22 pm

Well, had my scope done today. Removed a 5mm polyp but didn’t see any other areas of concern. No cancer, to quote. He thinks the pain is muscular.

Doctor also took a biopsy of an inflammation area near the rectum though. He said it could’ve just been caused by the prep but sent it off for pathology. The nurse who was doing my discharge said it looked like broken blood vessels to her.

So now I wait. I didn’t realize inflammation could be precancerous. And can polyps be cancerous? I was hoping this exam would be a relief but now I’m just left with more questions.

The doctor simply left it at that the pathology would determine whether I needed to come back in 3-5 years or start regular screening at 45, which gives me hope that he wasn’t concerned about what he saw.

Lee
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Joined: Sun Apr 16, 2006 4:09 pm

Re: 6 months of symptoms - colonoscopy results

Postby Lee » Mon Feb 19, 2018 7:10 pm

[quote="StillAnxious"]
So now I wait. I didn’t realize inflammation could be precancerous. And can polyps be cancerous? I was hoping this exam would be a relief but now I’m just left with more questions.
[quote]

Inflammation can lead to cancer. Yes a polyp can be precancerous. These doctors are very good when they think they have found cancer. I was told during my procedure that they had found cancer in me. The fact your doctor did not say this, please breath easy and try not to worry.

Yes they want to wait for the pathology report, that will tell you everything (be sure to get a copy of that report). Inflammation is not cancer, butt again it can lead to cancer. If your polyp turns out to be precancerous, simply by removing it, it's gone, no worries.

If you do have inflammation, getting scoped every 3-5 is probably a good thing to prevent possible cancer.

Relax, try not to worry,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

StillAnxious
Posts: 12
Joined: Sun Feb 11, 2018 10:32 pm

Re: 6 months of symptoms - colonoscopy results

Postby StillAnxious » Mon Feb 19, 2018 7:28 pm

Lee wrote:

Inflammation can lead to cancer. Yes a polyp can be precancerous. These doctors are very good when they think they have found cancer. I was told during my procedure that they had found cancer in me. The fact your doctor did not say this, please breath easy and try not to worry.

Yes they want to wait for the pathology report, that will tell you everything (be sure to get a copy of that report). Inflammation is not cancer, butt again it can lead to cancer. If your polyp turns out to be precancerous, simply by removing it, it's gone, no worries.

If you do have inflammation, getting scoped every 3-5 is probably a good thing to prevent possible cancer.

Relax, try not to worry,

Lee


Thank you, Lee. This was a little shock today, with no family history of the same. I’m 31 and now suddenly I feel like I’m going to be constantly on edge for the rest of my life, wondering what’s growing in me, if it turns out to be precancerous. Or worse, what if the report comes back and says the polyp is already cancerous...

The story your signature tells is seriously inspiring. All of you here are so strong.

Lee
Posts: 5678
Joined: Sun Apr 16, 2006 4:09 pm

Re: 6 months of symptoms - colonoscopy results

Postby Lee » Mon Feb 19, 2018 7:53 pm

StillAnxious wrote:
Thank you, Lee. This was a little shock today, with no family history of the same. I’m 31 and now suddenly I feel like I’m going to be constantly on edge for the rest of my life, wondering what’s growing in me, if it turns out to be precancerous. Or worse, what if the report comes back and says the polyp is already cancerous...

The story your signature tells is seriously inspiring. All of you here are so strong.


You can't let fear control your life. One thing about those scopes, you are being proactive against getting colon/ rectal cancer. If it turns out to be "precancerous" means just that. It's NOT cancer, just PRE. There is a big difference between 'pre" and "cancer". I was in my 20's seeing a Dr for something. He noticed the mole on my back, could he remove it. Sure. Next time I saw him, he told me it was precancerous, and could have turned cancer in about 10 years, Jaw drop!!!! Mole gone, problem solved. That was 40 years ago.

There is no history of colon cancer in my family either. My PCP figured my bleeding hemorrhoids were my excuse for getting my baseline early in life. That referral probably saved my life as I had no symptoms.

Butt again, if you have inflammation in your colon, followed your Dr advice. If they recommend scopes every 3 years, DO IT!

Between now and your pathology report, try not to worry.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!


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