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Don's mysterious pain

JReed's picture
Posts: 463
Joined: Nov 2011

Hi Everyone:

Well, don had the EGD this morning and gatro doc says all looks good - no ulcers and no cancer. He is thinking it is possible scar tissue and something from the nerves being cut.

He wants to follow up with Don in his office soon. He told Don to take 1 tablespoon of miralax daily and 1 tablespoon three times a day of Equate fiber. He emphasized the equate brand - I don't know if he owns stock in Walmart or Equate or whatever, but that's what I went and got.

Don is to continue taking the pain medicine (Norco). I just saw that Shammi posted the same type of situation is going on with his dad. Don has had 2 CT scans within 2 weeks, and ultrasound of the gallbladder, numerous blood tests and now the EGD (scope).

While we are greatly relieved that there was no ulcer or tumor present, therefore, no need to take any biopsies, the pain remains a mystery and the gastro doc says it is not all that uncommon and may go away in a few months (or hopefully less). Don did not have this pain until about 4 weeks ago - started rather mild with a few sharp pains now and again, then gradually increased about 2 weeks ago to an all day, all night pain.

I am very relieved that nothing showed up but that doesn't help Don and his pain. We had the Bickersons visit us briefly on the way home. The Bickersons is what a male nurse used to call my mom and dad when dad was in the hospital for lengthy stay - he and mom would 'bicker' back and forth and because my dad was hard of hearing, practically everyone on the floor could hear them. Now when Don and I 'bicker' I say "The Bickersons are here!".

I know he's probably still frustrated not finding a cause for the pain - but I am happy nothing bad showed up. We'll continue this route until either the pain goes away or one of both of us get to the point that we can't take it anymore and he wants to pursue another opinion. Of course, we're hoping the pain goes away SOON - we want to take a trip out to Sturgis and it won't be much fun for him if he feels like this.

Just wanted to let you know what we found out - or didn't find out. I plan to return to work on Monday - I haven't been able to focus on that for the past two weeks and I don' know what else to do except give a try with the miralax and equate and norco.

Is it cocktail hour?


Posts: 179
Joined: Feb 2011


I hate that you and Don didn't get any real answers to the pain. Of course the good news is that there doesn't appear to be any cancer. Thank goodness for that!

I sure wish that darn pain would go away, and perhaps it will disappear just as mysteriously as it appeared--the sooner, the better! Until then, hang in there the best you can.

Happy hour will be here before long--enjoy that cocktail!!!

Meanwhile, as always, you and Don will be in my thoughts and prayers.

Hugs and FEC,

DX October 2009: T3N1M0
November and December 2009: chemo (Cisplatin and 5 FU) and radiation
February 2010: Ivor Lewis surgery

BobHaze's picture
Posts: 162
Joined: Sep 2011

Hi Judy:

I’m coming up on 10 months since my surgery, and I still have persistent pain in my right rib cage – actually, sometimes it’s pain and other times it’s just numb. It started about 6 weeks after the surgery, and at that time it hurt like hell and Carol took me to my PCP and we had a phone consult with the surgeon, who prescribed a CT scan and more Oxycodone. The pain lasted a few weeks, after which was less and now it’s sensitive but not really painful, like I haven’t needed any meds or anything for many months. What it is now, more than anything, is a constant reminder that I have cancer. Oh Joy!

I mentioned it to the surgeon again at my January and April follow-up appointments, and he said he can’t say for sure but it’s most likely just nerves that were damaged during the surgery. He said they may stitch themselves back together over time, but they may not. Don’s situation sounds a lot more painful than mine ever was, but I just thought maybe it’s something similar that will get better over time. mine did, for the most part, and I sure hope his does, too! Sturgis and the Black Hills are calling, after all!!

Dx 8/3/11
MIE 9/23/11

Posts: 39
Joined: Jun 2012

Judy & Don,

So glad to hear there is nothing serious going on other than discomfort from the pain. Sounds like scar tissue to me. I had painful twinges where my feeding tube was and went to a physical therapist for therapeutic ultrasound sessions. It helped a great deal.

I though about you and Don today as I was driving home from my 1 year follow up PET scan. A man passed me on the freeway riding a most excellent purple Harley trike.

Hope Don's pain goes away soon.

Thanks for the update and FEC,


PS When dealing with EC, it's always cocktail hour.

paul61's picture
Posts: 1260
Joined: Apr 2010


I am so glad to hear that the EGD showed all clear for any cancer related issues but frustrated for you both that they did not find anything to explain Don's abdominal pain.

Of course most of us that have had surgery have periodic pain and numbness on the right side around the rib cage area and under the right shoulder blade in the back. I am two years out and mine still crops up from time to time. And sometimes after I eat I have abdominal pain but mine gets better after a couple hours or so. It sounds to me like Don's pain is more severe and long lasting.

I hope things sort themselves out over the next few days. If not I would ask Dr. Reddy to at least review the last CT scan and assure himself that everything is as he left it post surgery. I have heard of things moving around after surgery that should not.

Best Regards,

Paul Adams
Grand Blanc, Michigan

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

JReed's picture
Posts: 463
Joined: Nov 2011

Hi Paul!

Right this moment Don is talking with Keith and I can tell by their conversation, that Keith is asking way more questions than these other doctors have. Keith has been through this surgery himself so it is always reassuring to speak with him. We'll see what he says and I think I will call Dr. Reddy on Monday and explain this whole deal to him.

Basically Don's pain begins just under the ribcage on the left side and if he doesn't take his pain meds - the pain shoots up to a "10". I think I mentioned it, but the gastro doc wants him to take 1 tbsp miralax once a day and 1 tbsp of equate (benefiber) 3 times daily.

This is quite concerning and I will not rest until this is resolved - I may piss every doctor off in Michigan - but thank God we've got 49 other states!

Thank you for checking in on us! Hope you are enjoying the little break in the weather we are having and they are teasing us by saying maybe some rain this weekend!

Hugs to you and Mrs. Adams,

TerryV's picture
Posts: 916
Joined: Jul 2011

Glad for no cancer, no ulcer, no apparent cause for the pain. But disappointed that some MINOR cause wasn't apparent in the Endoscope.

You know we are with you! Wouldn't be anywhere else.

As far as cocktail time? It's been cocktail time since 06/19 for me....

Love & Hugs, my EC sister!

PROUD wife of Nick, age 49
lost battle to FEC 06/19/12

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