Husband says No More

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   Posted 1/5/2008 1:08 PM (GMT -7)   
Hey there,
I am going to ask for help from you, the patients.
My hubby told me the other day "No more scopes".  He feels they are a waste of money plus  unpleasantness of going through the prep.  His last scope was positive for active Crohn's with narrowing.  He doe not believe doing another scope will make any differeence. He feels the Doc can treat him for symptoms without another scope and if he obstructs..........well more surgery.
I think he is just so afraid of hearing any thing else he wants to just not think about it until he gets into trouble.
How often are you having endoscopies and do you feel they help you in your treatment of the disease process?
Co-Moderator Anxiety ~ Panic Disorders
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*~* Not a mental health professional at all *~*
Dx: Anxiety/Panic, Depression, GERD, Osteoarthritis
*Wife of a Crohnie*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~

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Date Joined Feb 2007
Total Posts : 136
   Posted 1/5/2008 1:27 PM (GMT -7)   
Let's see, one day of awful prep vs. weeks and weeks of chemotherapy . . . Tell your husband he is not being fair to you and his family by not getting reglar scopes. I'm due for my 2-year colonoscopy - and I know from recent CAT scans that I have a narrowing, but I will still get the colonoscopy because I want to be sure there are no polyps - I'm 52, and my mother died from colon cancer - she had never had a colonoscopy, though the doctor tried to persuade her.  After she died, my brother had the scope and there was a polyp.  My father had a colonscopy a few months before my mother was diagnosed - and he had a polyp removed.  Thankfully, he is still alive and well today because of the scope.

gemini kiwi
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   Posted 1/5/2008 1:47 PM (GMT -7)   
My Husband said that to me yesterday, "No More" not about a scope though, we were out in the car and drove down a dusty road so put the air-con on re-cycle, must remember not to pass gas and try and get away with it when its on re-cycle.

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Date Joined Dec 2007
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   Posted 1/5/2008 2:08 PM (GMT -7)   
I will have to agree with oldcrohnie... my grandmother was dx with colon cancer. She did not realize it until, basically, it had grown to the size that it totally obstructed her bowels and she could not hold down food. Doc said that cancer had been growing 10+ years, but she never had colonoscopies although it was recommended to her. Luckily after surgery and chemo (very hard on her) she recovered. It's not worth the risk.

Now everyone in my family gets them, and I just had my 1st. We all talk about it, comisserate, it's unpleasant but necessary. I didn't think the prep I did (4 dulcolax then 2 liters miralax/gatorade) was so bad, but I'm not as torn up on the insides...and thanks to the drugs, I don't even remember the procedure! Compared to scopes, I've had far worse experiences, so I'll keep doing it as often as the doctor suggests.

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Date Joined Dec 2006
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   Posted 1/5/2008 2:16 PM (GMT -7)   
I get scopes whenever I have a drastic change in treatment or symptoms- so far that's been every 6 months or so. I hate them (obviously) and the prep gets worse every time. Last time my GI recommended a scope I said "we'll wait!" because I've been feeling well. However, I know that this is something I'll have to deal with probably yearly for the rest of my life (I'm 25) and I'd better get used to it. Besides monitoring the Crohn's, the risk of colon cancer makes it necessary. It could be much worse, right? Some people have to get spinal taps, bone marrow biopsies, other painful things involving big painful needles. At least with ours you get fun drugs.

If your husband is like any guys I know, he probably won't listen right away if you keep telling him how important it is, but hopefully he'll come to a realization on his own and just deal with it.

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   Posted 1/5/2008 5:37 PM (GMT -7)   
Frequency of colonoscopies really varies from GI to GI. I think there are some GIs that tend to scope more frequently so they can see for themselves what exactly is going on when there is a change in symptoms. My GI was content to let me go 2.5 years and then I had a sudden change in symptoms. Turns out I had developed some pretty good sized polyps. No polyps were ever found on my previos scopes. Now that I have developed polyps, I have to have a scope every 2-3 years according to my GI.

The CCFA has published a consesus paper on surveillance screening in IBD and for CRC in those with IBD. It has sections for those with UC, CD, and CD in the colon. The recommendations are different for the three groups. Read it heare:

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CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?

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Date Joined Apr 2006
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   Posted 1/5/2008 5:46 PM (GMT -7)   
my GI has said no more and so has my hubby. they are so hard on me that they both want to wait as long as possible.
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, Ultra Fiber Plus and vicodin as needed.

Regular Member

Date Joined Oct 2007
Total Posts : 289
   Posted 1/5/2008 8:40 PM (GMT -7)   
I'm about to have my third one this Wednesday since Sept.2006,my GI  likes to monitor how my inflammation is working with my current meds,incase he has to make adjustments. I HATE the prep,and I also tell my husband that I'm not having anymore scopes anymore,but I do,I complain the ENTIRE time,but I guess I eventually shut up,hahahaha.I do understand what he means when you say he's maybe afraid of hearing what the doctor says,that's exactly how I feel also,I go in feeling good,then BOOM,I hear how bad my colon looks,so in that respect I can relate.

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Date Joined Feb 2007
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   Posted 1/5/2008 9:08 PM (GMT -7)   
As far as being scoped is concerned, it depends on how long he's had the disease, how old he is and where in the bowel his crohn's is located how frequently he really needs to be scoped.

If he has crohn's colitis, is over 50 and has had crohn's disease for more than 10 years he really needs to have regularly scheduled scopes to screen for cancer. Bowel cancer is one of those that can really be prevented by screening. If the pre-cancerous polyps are detected and removed, the cancer will not develop.

On the other hand, sometimes colonoscopies are ordered to make the physician feel better, and may not be strictly necessary. If his condition is relatively stable and if he has crohn's primarily in the small bowel then repeated colonoscopies might not be necessary. I was diagnosed with small bowel crohn's in 1980 (stricturing type) and did not have a colonoscopy until 1998. Since then, I've had half-a-dozen more and will likely continue to have them every other year as a matter of routine and more frequently if necessary -- although my procedure of choice now (since my crohn's is in the small bowel) is the CT enteroclysis.

The key to working with your husband is to figure out whether his decision is based on sound, well thought-out reasons or whether he is responding to anxiety. As crohn's patients we sometimes feel that we control very little about our lives. Sometimes we take a stand against our medical team just because we can, at least, still exert control over what we consent to let them do to us.

30+ years living with Crohn's.

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Date Joined May 2005
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   Posted 1/5/2008 9:41 PM (GMT -7)   
I was scoped in August, September, and December. It's no fun, but I do it because we need to know what is going on in my gut because I am so close to surgery being my only option to control the disease. It's only a couple hours worth of discomfort to me. Other people feel differently. Hopefully your husband was just frustrated at that particular moment when he said it. Sometimes I say stuff like that too just because it makes me feel better to think of never having to do it again. Take care.
"Of one thing I am certain, the body is not the measure of healing - peace is the measure. ~George Melton~"

Current Meds include:Colazal, Prednisone, Nexium and Remicade

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   Posted 1/6/2008 10:52 AM (GMT -7)   
Well I am one who can no longer have C-scopes. The left side of my colon is adherred to my body cavity by adhesions and they can't get around the corner to view my reconnection site because they are afraid I might perforate. So now it is CT scans and SBFT for me. I am sure there are other tests they can run. Kitt one test I do refuse is the Barium Enema. I get so sick from those tests, I refuse them now.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

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   Posted 1/6/2008 10:59 AM (GMT -7)   
I have had 14 and 1 virtual scope CAT scan 1 Barium done no big deal to me I wanna know what going on in my butt.
Confucius say : He who goes to bed with itchy butt wakes up with stinky finger.

Words of wisdom: Never trust a fart

:) Sugarmarie A.K.A. Poopy Pants :)

Post Edited (Sugarmarie) : 1/6/2008 11:45:10 AM (GMT-7)

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   Posted 1/6/2008 11:17 AM (GMT -7)   

Great answers. Thanks and he too will never consent to a barium enema.  He will take the scope first.

He was diagnosised in 1976 with Regional enteritis.(Anyone remember that terminology) Had his first resection that year, another one in 1981 and the third one in 1993. The third surgery involved small bowel and large bowel. He had a fistula and an abcess the last time and we dealt with that first before he could have surgery. He has had colonoscopy every 2 years and knows he has narrowing. He has done very well and if you ask him on diet he will tell you vension.  He eats a lot of vension. Ground venison.  He is a hunter and eats what he hunts.

The last 2 years I have had trouble keeping his weight up and he has been more fatigued.  He does have the arthritis with the Crohns.

I will drag him kicking and screaming for his colonscopy as the Cancer concern is a major reason to keep scoping, thank you for that info. I focus on the Crohn's and sometimes forget the other issues. He is 60 years old.

Co-Moderator Anxiety ~ Panic Disorders
Co-Moderator Crohn's Disease Forum
*~* Not a mental health professional at all *~*
Dx: Anxiety/Panic, Depression, GERD, Osteoarthritis
*Wife of a Crohnie*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~

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Date Joined Apr 2006
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   Posted 1/6/2008 11:19 AM (GMT -7)   
I have a horrible reaction to versed, so until my GI will do it with no meds or find an alternative I am taking a break.
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, Ultra Fiber Plus and vicodin as needed.

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Date Joined Mar 2006
Total Posts : 2739
   Posted 1/6/2008 12:07 PM (GMT -7)   
Well I can't blame him honestly. The prep is down right awful, and some of us have had bad experiences during the scope (I woke up in pain during my second one). So I'm quite leary of having another. Even though I know at some point I will. I'm not terribly worried about cancer, they have never found any polyps yet, and my disease is not really in my colon. While I realize I still have an increased risk, I don't feel it's high enough for me to have one every 1 or 2 years. In March I see my GI again, and it will be 2 years ago since my last scope. Since I'm doing quite well I'm not looking to have it done this year. My symptoms will play a role in when I want to have another one. For regular screening I wouldn't mind going every 3-5 years in between scopes. Of course my doctor will probably think otherwise!
But no I don't blame anyone for saying "no more". I think they need to find preps that aren't as horrible (my doc will ONLY allow the go-lytely crap!), and put people under enough to where they don't have a problem waking up in pain during the procedure. While I realize the experience varies for everyone, I know some people do okay with the prep and feel the scopes are a breeze. Not everyone has that same experience.
Diagnosed with mild Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Asacol and Questran.

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Date Joined Jan 2005
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   Posted 1/6/2008 3:35 PM (GMT -7)   
My GI and doc like Yogaprof's will not let me have them unless absoulutely needed due to fact it is trauma to body and PG starts.....
Am hoping the right decisions are made sis
Big sis
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   Posted 1/6/2008 10:46 PM (GMT -7)   
Unless there is an extremely high rise of perforation...I say do it. I lost my best friend, my father, to prostate cancer....he thought he could self diagnose and treat everything. The night he died in his sleep he had a massive GI bleed. I don't mean to be grafic but sometimes the big tough guys need to hear it! My husband included who refuses to go for a sleep apnea test even though he stops breathing when he sleeps between 45-50 seconds sporadically throughout the night! HARDHEADED!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.

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   Posted 1/7/2008 4:11 AM (GMT -7)   
Oh, BroomHilda!!! Your hubby too? Mine also has Restless Leg Syndrome. No way you can get him near a sleep lab. When our local hospital offered free overnight ApneLink testing, I brought the ApneaLink home and he would NOT even allow the sensor on his finger!! *sigh* You can lead a horse to water ... but getting a mule to budge is an entirely different matter.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

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