Can anyone explain this better to me?

[KentuckyBeMommaw]

First of all I have crohn's disease. This is from one of the colonoscopies that I have had since 2005.

Congested, erythematous, granular and vascular-pattern-decreased mucosa in the entire colon.
Mutliple polyps in the rectum, in the sigmoid colon, in the transverse colon and in the ascending colon. Resected and retrieved.
- Colonic Crohn's disease

I just want to say that when polyps are found it's very important to stay on top of your game! Get your colonoscopies as scheduled! I've had 5 colonoscopies since 2005 and everytime there are multiple polyps, none of which have turned cancerous.....knock on wood. I know they are uncomfortable and the pre-colonscopy prep isn't fun but it's worth it in the long run. I had a grandfather that died of colon cancer. I don't know much about his struggle with it, I was so little I couldn't remember. But I do know that it is hereditary. Stay on top of gettin them benign polpys out of there so they don't get a chance to grow on to something else!

Just wanted to share that part but would really like to discuss my questions if anybody is willing?

Thanks

[Hank0303]

I'm willing.  What's the question?  On the subject of colonoscopies, I go to a "Crohn's Specialist" (joke) that refuses to give me a colonoscopy.  He is at one of the leading hospitals and is a so-called specialist.  But, I have not had one in FIVE YEARS.  I begged him for one.  And, No, they are not fun.  So, why would a patient ask for one if they didn't think they needed one?  My pediatric GI told me that with Crohn's, you need to have one at least every other year, if not every year.  I finally asked for a new dr.  But, I can't get in to see her until April.  They tell me that my Crohn's is not flaring up, but I'm having a lot of new problems.  They checked my gallbladder and did a CT, but NO ONE will do a colonoscopy.  What is up with that?!

[April2]

That is kinda weird. I don't know why they wouldn't give you a colonoscopy. I should think you should have one and an endoscopy once in awhile to see about any new flare ups and ulcers, etc. And you don't always have big symptoms. I just had a colonoscopy/endo last week and was surprised to hear I had some new ulcers, gastritis, inflamation and a polyp. I'm 42. I'm sure he will now want to see me every year or every other year since they saw all that. I will see him again next month.
How do they know if your Crohns is not flaring up? Have you seen an actual Gastroenterologist? A CT won't show ulcers or inflamation. Have they done any other tests on you like an Upper GI?
I'm trying to figure out why they won't give you a colonoscopy. Have you ever had a bad reaction to one or something? Do you deal with the medication ok? What new symptoms are you experiencing?
It's good that you are going to see a new doc and insisting on a colonoscopy. Five years to me is too long to go with someone who has a digestive disease like Crohns. I hope you can get in soon and get some of your questions answered.

[KentuckyBeMommaw]

Now that has got to be frustrating for you. I would say it's probably because of how your insurance works? I know with our insurance, my gastro doc has mentioned getting certain tests done within time frames, but since I have so many problems with polyps I get one about every 6 months, give or take a month. Have you talked to your insurance people? What is the doctor's reasoning for not giving you a colonoscopy? It's great that your not flaring! It really sucks to be flaring and get a colonoscopy believe you me I remember my first one, the second, the third and I've had a total of 5. It's embarrassing to not have any control of the "junk in the trunk", so to speak! Hm, I don't  understand at all! Sometimes I find it necessary to "tell" the doctors what I want instead of doing what they want. It's our bodies after all!

[Hank0303]

No, I have great insurance, BCBS.  They say they can tell by my bloodwork that my Crohn's is not flaring.  I don't know.  I've never had a problem with anesthesia or the colonoscopy/endo.  I'm trying to figure it out myself.  It seems like laziness or lack of caring to me, that's why I demanded to see a different dr.  They're in the same practice at UAB, and so they asked why I wanted to chance drs.  I said "because I have begged him to give me a colonoscopy to figure out what's going on and he refuses and he has not done one in 5 years".  They said, "that'll work".  I actually feel better when I take no meds at all.  I was always less than 100 punds, but when I started college, I quit taking my meds and went from 95 pounds to 110 pounds.  I felt better than I had in a long time.  I hate taking medicine.  They always had me on Immuran, an immunosuppressant.  What they won't tell you:  it destroys your liver and makes you moody.  I was taking it faithfully and then began having uncontrollable diarrhea.  NOTHING stopped it.  I lost about 25 pounds in less than a month.  I could not even drink water without running to the bathroom.  What did my "Crohn's specialist" want to do?  Put me on a strong antibiotic.  I asked, "do you think I have an infection?"  He said, no, but to try the antibiotic and see if it goes away.  If not, call him in a month.  ARE YOU KIDDING ME?  I am not going to take an antibiotic that makes me nauseated when I DON'T have an infection.  So, I went to see my internist and he said not to take it.  He tested my gallbladder and found nothing other than it ejects 78% of its contents when I eat soemthing.  I thought that would mean it was over-active, but he said no it was fine.  So, I live on about 4-6 Lomotil every day just so I can eat and live a normal life. I quit taking the Immuran because I did not see the need if my Crohn's was not flaring and I was still sick as could be.  I didn't want to hurt my liver anymore than it already was.  Why take meds that aren't working?  So, I'm hoping that this new dr will do a colo/endo and figure out what is going on so I can quit taking the Lomotil.

[katta]

i tell u why they don't give you a colonoscopy, ironicly i worked for 5 gi doctors when i was diagnosed with crohn's i worked there for 4 yrs and short after the diagnosed i was "dismissed" because according to them my dx is so bad that shouldn't work

Anyways the reason why they don't give a colonoscopy is because if you are not showing a flare through your blood work they won't stick anything up there that will make u have on,  they try to keep u from getting a flare up and by doing the prep and inserting the equipment you will get a flare up but when you are having a flare up and you are in the hospital that will be a good time to do a colonoscopy, that is what they do with me i had several but only when i am having a flare up is when they can see how bad everything is.

[Hank0303]

That's the craziest thing I've ever heard.  I chalk it up to laziness.  That, and disbelief in their patients.  I've had surgery where you have to go thru the same prep and it did not cause me to have a flare up.  I had surgery on an abscess about four times, and never once did it lead to a flare up.  I'm convinced they get way too comfortable writing the same prescriptions over and over and are not willing to do any research.

[April2]

I thought you couldn't be dismissed because of an illness! Isn't that against the law or something? Who are they to say whether you can still work or not? Only you know how well you feel. That makes me so mad.
I can't believe doctors sometimes. I just don't get it. I had no problems getting a colonoscopy/endoscopy done. Do you think it depends on the insurance? I didn't have any major symptoms either. But I had been diagnosed in August after having a mass removed and biopsied. That's when they said it was Crohns. I have felt pretty good since then but they wanted to do a colonoscopy to see how things were since my surgery. I was actually surprised to learn I had inflamation and ulcers and mild gastritis. I'm on medication now. I wonder if it is just that I have pretty good insurance that will pay for this? I have the military insurance. I know a lot of people complain about it and a lot of doctors don't accept it but I've never had problems with it. They've always been good to me.
I'm so sorry you all have had such a rough time. Man, that just shouldn't be. We really need to do something about our health coverages here in this country. Of course, Hillary seems to think she has all the answers, lol. God help us.
Take care guys. Hope things improve for you soon.

[KellyO67]

I can not believe that your GI will not do a colonscopy on you.  I also have Crohn's, diagnosed in 2000 after my first colonscopy.  After that I had one every other year until I ended up in sugery in August 2004.  After the surgery, when they did boispies on the section removed, found out there was cancer of the small bowel.  I had to have 2 colonscopies during the next 12 months after that and every year now.  I haven't had a flare up since my surgery, but the crohn's is back in my small intestine again.  Definitely get yourself a new doctor.  Luckily I love my doctor, he is wonderful and looks out for me.  Best of luck to you.

[katymary]

Did you have your colonoscopy under anesthesia? I've had five or six and never once was I put under (though, frankly I would prefer it).

Colonoscopies are even recommended for people without IBD in people over 40 as a precaution for Colon Cancer.

Not getting one makes no sense to me.

p.s. I have learned over the years that you don't have to drink ALL the Colace - you only have to do it until it comes out the other end...