Another Colonoscopy For Me

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tommy

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Joined
Sep 7, 2003
Messages
1,715
Location
Dallas Area Texas
This is a "coumadin/colonoscopy" story and also a "pins and needles" story of living with a history of cancer. I've been cancer free for 2 1/.2 years, but the cloud never totally goes away.

Hopefully, this is just another "scare" that will renforce that life is precious and we need to live it to the fullest. (Like I really need the reminder.)

First a bit of history............ I've been getting annual full-body PET scans as follow up to 2002 Melanoma excision. The excision included a sentinal node biopsy (the nearest node is removed and disected). The SNB was normal. The Melanoma was very early stage.
PET scan Sep 2003 was normal.
Colonoscopy July 2004 was normal.
PET Oct 2004 showed some "activity" in intersection of the small and large intestine.
CT scan Oct 2004 scan showed it as well, but a small bowel series was normal. The oncologist thinks its an inflammation, but ordered a three month PET to track it.
Unfortunately the PET 2 weeks ago showed increased activity on that spot.

The good news is that Melanoma re-occuring in the colon is extremely rare. The bad news is that the recovery rate is very very very very poor (get my drift?). So last week I went back to the GE that did the colonoscpopy, and he refered me to a diagnostic GE specialist (a special specialist).

The GEspsp wanted to have me swallow a "capsule endoscopy", but after checking with St. Judes, decided against it. The capsulke is a camera that transmitts pictures to a computer for 24 hours. St Judes said there have never been tests on this camera/receiver apparatus with a St Jude valve, and so couldn't condone it. He would have liked to get picures of the entire digestive track.

He will do another colonscopy next Tuesday and go deeper than the last to see the spot and take a biopsy.

As an aside, the GEspsp's nurse used to be my Coiumadin nurse at the cardio's office. And since the GEspsp got tied up at the hospital for 3 hours, we had time to reminicse.

The GEspsp started to give me instructions for Lovenox bridge. I told him that I had experience in that. When he started giving me the number of days to hold Coumadin, I stopped him and told him that I home test and prefer to use 2.0 as the cutoff in both directions. He smiled and gave me a look of approval that he didn't expect me to know the details. It was a look of respect. He was not condescending or arrogant at all.

When he told the nurse to call in a prescription for 40 mg Lovenos, I told him my cardio prefers 100 mg. He says "that's way too high", that he does colonoscopies for valve patients all the time at 30-40 mg. He took off for another patient while I called the cardio's office on my cell phone and talked to the coumadin nurse. She freaked at 40 mg and double checked with the cardio. When the GEspsp came back in, I suggested the 2 docs talk to each other.............how about right now? In a flash the GEspsp nurse got the Coumadin nurse to run down the cardio again and handed my cell phone to the GEspsp. I can just imagine what the cardio told him. All I heard was, uh huh.....I see.....well if that's what you want, okay. No problem. After the docs hung up, the coumadin nurse hit #69 and called me back to be sure that it was settled and to determine who would call in the prescription. Gotta love her!

Then the GEspsp said to hold the Lovenox 24 hours prior to procedure and 24 hours after. He intends to be a bit aggressive with the biopsy. I told him I understood about the 24 hours after, but didn't like it. I surely didn't understand the 24 hours prior. He cut it to 12 hours prior, but held his ground on the 24 hours after. I agreed.

I don't want to leave the impression that the GEspsp is a jerk. He is sharp as a tack and was wonderful in the GE arena and attention to detail. I had a choice of going back to my other GE that did the previous colonoscopy, and chose to have the special specialist do it. I have great respect for him as a GE, but will always defer to my cardio in matters of Coumadin.

So I thanked God (again) for my friends in here that have raised this issue up and down the pole several times.

Oh, yes, one more thing. I asked the GEspsp about Virtual Colonoscopies. He said that they are worthless. They are not reliable and require prepping twice if something is found. I told him that we coumadin users are more sensitive about beeding and stroking than GI prepping, and find the idea of VC's atractive if/when they are reliable. He understood our perspective.
 
Tom, you are in my prayers. Please let us know how you are doing throughout this, OK? I just love hearing how by being informed patients we are active participants in our own care.
 
Tom,

Tom,

I had no idea you had all of this going on!! You are in my thoughts and prayers. Let us know ASAP how you are doing! I know you will be okay. After 40, it's all maintenance!

Christina L.
 
Thanks everyone. The scope time was changed today. I was scheduled for the #1 slot at 6:30 am. That would require that antibiotics be administered before that. But the staff doesn't show up until 6:30, so they pushed me to the #2 slot.

The NCAA basketball tourney is a good diversion for me.

God bless each of you.
 
Tom,
I thought I had replied to your post, but I guess I haven't. So, I'll tell you now that my prayers are with you, and they will be with you, however this situation turns out.
 
Thanks for your thoughts and prayers. The scope went without incident today. The GE and staff were excellent.

The diagnosis is not complete until the biopsy results are in (next weeK :mad: ), but the GE is quite sure that it is Crohn's Disease and not Melanoma. The biopsy should confirm one and rule out the other. I would rather Crohn's and Cancer. This is truly good news, but not without it's challenges.

From the brief Internet and brochure reading that I have done, the cause(s) of Crohn's are unknown. Crohn's comes under the umbrella of Irritable Bowel Syndrome (IBS). There is sometimes familial connection (though none in my family) and it is not contagious. It is a condition where the immune system does not function properly. Crohn's is manageable (success varies), but not curable. Several of the classic symptoms of Crohn's are absent in me, but it could explain the onset of arthritis, the back pain, and what I have thought is lactose intollerance. There's a lot more water yet to pass under this bridge.

The GE went 8" into the ileum (small intestine). I didn't think that that could be done. Yes I am a little uncomfartable, but not bad (I'll leave that typo in there :D ). The scope discovered numerous ulcers (color photos) that are consistent with Crohn's diagnosis. The ulcers concern me in conjuntion with anti-coagulants. He also removed 3 more polys. Go figure.....4 polys in 50 years and 3 more in 6 months? The GE took a special picture for me to show me how well he cauterized the biopsy site. It was a bit of a "dig" (pun intended) at me for being persistent about anticoagulation issues. He doesn't miss a thing. I like that. I thanked him.

The photos prove beyond any doubt that my head was not up there. :D No definitive diagnosis as to where my head actually is, but it is for sure not in that location.

Oh, that's right, this is a Coumadin thread............
My INR this morning was 1.1. My GE changed my post-procedure anticoagulation strategy. Instead of restarting Coumadin tonight and Lovenox tomorrow, I am to restart Lovenox tonight and wait three days to restart Coumadin. The net result is that I am unprotected for only 12 hours instead of 24 :) , but I start on the more temporary anti-coagulant in case there is a bleeding problem. It caught me by surprise, but makes sense. As soon as my Coumadin nurse calls me back I'll fill her in. Also, I'm going to stick to a soft, low-fiber diet until tomorrow just to avoid sending something rough through the system.

Thanks again for your concerns.
 
Tom, I hope it all works out for the best... and please keep us posted on your results. I'm be sending lots of prayers and well wishes your way. You a truly amazing person. Take Care

Best of Luck
Marilyn (runner)
 
Tom,

I am glad that you are finished with that test and that you have started Lovenox.

When will you get the results firmed up?

Thinking of you with positive thoughts.

Donna
 
Hi Tom,

That sounds good. I hope it isn't cancer again. Crohns is manageable but you are right about it also presenting challenges especially on anti-coagulation. Crohn's disease is considered an IBD but it stands for INFLAMMATORY BOWEL DISEASE rather than IBS which is Irritable bowel syndrome. they are two different animals. A year ago January I had ulcers in the same areas you have them in. Mine were diagnosed as having been caused by ischemia from a supposed clot from my mitral valve. I have had non-specific colitis off and on ever since but very manageable. Let's wait to get your bx reports back and see what is up (pun intended ;) ).
 
Tom:

Glad that it's apparently not a malignancy, but at least if it's Crohn's, it's a manageable condition.

Our godchildren's mother has Crohn's, has had it since a teen-ager. She's 55 now.
I think my youngest sister has it, a complication of her lupus.
 
Thanks for your words of encouragment. Got some work done today. IBD, not IBS. What's one letter between friends? :D Those TLA's will get us all in trouble.

Feeling a little punk and a little blue today. My belly was talking to me all night (louder than my valve).

A neighbor (30's) has developed Lupus. Could it be in the water?

My Coumadin nurse agreed with the anticoagulation. Picked up another box of Lovenox today.

Also, my antibiotics were endomyacine and unison (sp?). One was a shot in the hip just prior toprocedure, the other was IV. I meant to post that yesterday while it was still fresh in my mind. Also, augmentin by mouth at 5PM in the afternoon.
 
Glad you are on the other side of this experience. Also hoping that your biopsy proves your GE's observations.

Be kind to yourself and rest up.
 
Hey!

I've been watching this thread, and hoping to see results from your colonoscopy posted here.....unless I missed a posting elsewhere.

Been worried about ya - Marybeth
 
Tom,

Same here. Hope you are holding up during this most stressful time awaiting the bx. I think there are positive indications since you have been so diligent in keeping up with your health, Pet scans etc.

Do you think you may get the results tomorrow? Mine are due today.

Sending prayers and positive vibes your way.

Donna
 
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