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NED since 2009 - Now have stomach pains nightly & unable to sleep

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Just wondering if this sounds familiar to anyone who is NED? I have had stomach pains for over a week mostly at night. I get up and take something to help me sleep. I know I am going to have to see a doctor but should I go to the colorectal surgeon, Internist, or GI?
My first colonoscopy since 2008 is scheduled on Oct 18. I can't wait that long. Sure would appreciate any advice.

Thanks,
Lizzy

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

Hey Lizzy

I'm thinking not the colorectal surgeon, because what's he want to do but "cut." GI would be good, but only if you can move your scope date up.

Internist would be a good recourse to consider first and get their take. Maybe it's stress from your upcoming scope that gots you a little "queasy" at the moment. That could effect sleep too, because maybe your subconsciousness is already "acting out" with your underlying concern about what the test would reveal.

I'm speculating of course...could be something else...but the process of elimination sounds in order here. If internist yields no results, see about the scope earlier than the 18th.

I'm hoping for a quick resolution. I've never been 'clear' enough to comment from that angle, but I've got all kinds of pains - all the time - and even on Sundays:)

-Craig

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Thanks, Craig! I appreciate your response.

It is really strange that during the day - I have no pain. At night, the pain is so uncomfortable that I cannot sleep. I have tried changing my diet - no nuts, no popcorn, no broccoli - still have this nagging bad pain at night. I have not called the doctor yet.

Thanks again, Craig. I will update you.

Hugs and love to you,

Lizzy

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

....wish I could have been of more help, but I'm just not sure what it could be. But I want to know when you know:)

-Craig and Big Billy:)

mom_2_3's picture
mom_2_3
Posts: 937
Joined: Nov 2008

Seems strange that you have discomfort only at night. Does it happen anytime that you lie down?

If I was going to the doctor I would go right to my GI doctor or the one that had the most experience with my case. My own internist or PCP is not very useful for much other than getting a prescription for antibiotics for earaches.

Amy

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Hi Amy,

Thanks for your response. It does happen when I lie down only. When I get up in the middle of the night - it does not hurt. When I lie back down - it is awful.

My mind is thinking all sorts of things. I just hesitate to go to the Doc but I may have to do it anyway.

Thanks,
Lizzy

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

May I suggest you go to your GP and request a CT scan (virtual colonoscopy).

1. You won't have to wait till the 18th

2. If there is something there it will see it

3. If it has nothing to do with the colon, it should still pick it up (something a colonoscopy would not do)

Better for your peace of mind to get this resolved as quickly as possible, and I would lay a bet that it is not CRC related.

Blake

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Thanks, Blake!

I do appreciate your Good advice!

Lizzy

herdizziness's picture
herdizziness
Posts: 3388
Joined: Apr 2010

Why, so can't help there, but have you tried a heating pad to lessen the pain until you get a dx from a doc?
Winter Marie

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Heating pad - yes!
I can't live without it! Thanks for your response, Winter Marie!

Lizzy

herdizziness's picture
herdizziness
Posts: 3388
Joined: Apr 2010

I hope it's helping you!!
Winter Marie

marqimark's picture
marqimark
Posts: 242
Joined: Jun 2011

Some days my in sides feel like they are over active.
It's like waves of acid and or bile through out the GI.

Mark

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

I went to the internist yesterday. He ordered a CT (STAT) which I also had yesterday. The results were back yesterday afternoon. I asked for a copy which has my husband and I a little upset. From the looks of the report, it doesn't sound good but we are going to hold on until we meet with the Doc. We have an appt with the Internist this morning at 10:45 am.

My suggestion --- If you have pain, do not wait - go to the Doctor.

Lizzy
NED since Dec 2009

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

I have found it best to let those who interpret the scan reports do their job. I've read them in the past and most often come to an incorrect conclusion. Best of luck today, think positive.
Phil

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Let doctors interpret the reports and keep us informed please!.
Will pray for you and for a good result!
Hugs!

maglets's picture
maglets
Posts: 2396
Joined: Jun 2006

you are brave to ask for the scan.....I would never be able to do that....but i think maybe it is best to let the docs interpret.....good luck lizzy....praying for good stuff

maggie

herdizziness's picture
herdizziness
Posts: 3388
Joined: Apr 2010

With you there in spirit, hoping for nothing bad.
Hugs.
Winter Marie

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Phil, Pepe, Maggie, Winter Marie, and others

-- I met with the Internist today who glossed over the report and referred me to my colorectal surgeon. My colorectal surgeon saw me today at 4:00 pm. The fast moving I am glad about but makes me nervous too. The Colorectal Surgeon is referring me to my Oncologist for a PET scan and to compare the prior CTs with the present.

My colorectal surgeon is wonderful and took a long time with us. He said he couldn’t say what it is until the PET results are completed. He said the worse case scenario is Pancreatic Cancer which he said is very unusual for colorectal colon to lead to that. He said normally it would go to the liver or lungs. He said it could be a variety of things including pancreatitis. It is the wait and see time.

I agree with you about letting the docs read the report to me. I will not ask for it again! Learned my lesson after shaking up my hubby. :(

I will have a colonoscopy on Tuesday, Oct 18 and see the Oncologist soon to schedule the PET.

Thanks for all your comments. I makes me feel so good to hear from you.

Hugs,
Lizzy

maglets's picture
maglets
Posts: 2396
Joined: Jun 2006

oh lizzy....so really nothing bad.....don't go with the worst case scenario...I understand pancreatitis hurts like crazy....

hang on darling girl.....glad you are on a discovery path

so good to hear from you tonight

maggie

mom_2_3's picture
mom_2_3
Posts: 937
Joined: Nov 2008

I have been checking this thread all day looking for an update so I am really glad that you posted this evening.

My mom had pancreatitis last year and it was very painful. In fact, she had problems sleeping in her bed and slept in a LazBoy for a couple of nights until it became too unbearable for her. A week of antibiotics and the removal of her gall bladder got her back to normal with no subsequent pain or issues. I googled pain lying down with pancreatitis and found that it is a symptom of pancreatitis.

I hope that you have a simple case of pancreatitis. In all my reading of CC I haven't ever read of any case where it went from the colon to the pancreas. Please keep us apprised of your upcoming PET results.

Thoughts are with you,
Amy

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Amy & Maggie,

Thanks for you kind words. I appreciate your posting. I will let you know what comes up next.

Hugs,
Lizzy

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

cancer I'm sure you would have others symptoms beside your pain ! so be optimistic probably is nothing important , hope you find the solution very soon . I pray for nothing important!.
Hugs Lyzzy!

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Thanks Pepe! I am staying optimistic - what else can I do. Right?

I feel better today.

Hugs to you,

Lizzy

ron50's picture
ron50
Posts: 1262
Joined: Nov 2001

Everything after ca seems to be suspected of being ca. I went thru the pain of acute pancreatitis a few years after crc . It turned out to be a small gallstone blocking my pancreatic duct. They treated me with oxygen and non stop saline infusion till it flushed out. Then removed my gallbladder. They initially suspected pancreatic ca. I had the same deal with kidney stones. After the third attack my doc took a urine sample. Naturally it contained blood. He immediately suspected bladder ca and I underwent a series of unpleasant tests for nothing. The formation of stones seems to be fairly common after crc ca and chemo. I am hoping that this is the case for you.None of it is pleasant ,I hope they resolve it quickly for you and it is nothing nasty. Hugs Ron.

John23
Posts: 1832
Joined: Jan 2007

Awwww, Jeeeezuze...

Listen, Adhesions from surgery do not rear their ugly heads until
around three or four years post-op. The pain is commonly felt while
laying down, not while standing or sitting (mileage will vary).

They will not find an adhesion with a CT or PET, they use a
common sonogram (ultra sound) to locate and "see" adhesions
that may be causing pain.

Ask your colorectal surgeon about the possibility of adhesions
before you get into the "PET" garbage. An adhesion that is
forming and advancing may "light up" as if it is cancer, since
it's using more glucose that surrounding cells, to grow.

This is all part of the very basic medical diagnostics involving
long-term periodic pain after surgery..... and again,.. it often
takes years for adhesions to grow large enough to cause the
type of pain you are describing.

(I swore I wasn't going to post anymore here.... but good grief....
Tell them to look at the simple things first!)

Be well!

John

janie1
Posts: 753
Joined: Apr 2011

Good advice. But un-confuse me. You say a pet won't pick up an adhesion, but then it may "light up". Sooo...it may or may not? But, yea...look for the simple things first.

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

JOHN & RON

THANK YOU! THANK YOU! THANK YOU!

I GREATLY appreciate your postings!!!

JOHN - PLEASE do not stop posting. You are so wise and we all need your sound advice!

You two guys have taken me from the lowest low to a very higher place.

I APPRECIATE BOTH OF YOU. Yes, my doctors will be informed with this information from those who have been there.

Hugs and love to you - Ron & John,

Lizzy

John23
Posts: 1832
Joined: Jan 2007

Re:
"a pet won't pick up an adhesion, but then it may "light up".

Since a "PET" scan uses radioactive glucose, the uptake of that glucose
by normal, healing tissue can appear to be cancer. The issue is discussed
in many medical journals at great length; it is a problem and concern
regarding misdiagnosis when/if relying on a PET scan alone for the
diagnosis.

PET Scans:

Interpretive pitfalls commonly encountered on FDG PET images of the body obtained 1 hour after
tracer administration can be mistaken for cancer.

averting misdiagnoses in PET/CT

Nuclear Medicine/Molecular Imaging

Ultrasound:

Detection of peritoneal adhesions using ultrasound examination

Ultrasound and the locating of adhesions

the accuracy of transabdominal ultrasound (TAU) in identifying intra-abdominal adhesions

For the location of my adhesions, they used ultrasound to visualize the adhesions
within the intestinal tract. A "CT" can provide a good picture also!
But.... why would any physician prescribe a PET initially? The healing tissue will
uptake the radioactive glucose...A misdiagnosis would encourage chemo treatments
where it may not be necessary.

just sayin'...

OH, by the way.... Ron made a great point regarding Gall and Bladder stones!
There are many things that can create abdominal pain; looking for the
"worst case scenario" (cancer) is very, very counterproductive!

Best of health!

(I will now re-hermatize)

John

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