Husband says No More

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?

Thanks

Kitt

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.

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.

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.

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.

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.

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.
Kitt                                                    

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.

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!