Do I need another colonoscopy?

Hi, I need some advice…

So, I have been diagnosed with ulcerative colitis this summer. I had a colonoscopy done, which confirmed that I definitely have UC.  Right now I’m feeling that another flare is slowly starting. I went to talk to my doctor and see what he can do. He told me that he wants to do another colonoscopy. I don’t really see why it is needed since I know for sure I have UC. Right now I’m taking 3 Lialda per day. I have some abdominal pain, especially on the left side. Also some blood in the stool. No diarrhea, but it is a little loose.  I asked my doctor what I can do if I decide not to have the colonoscopy again and he just prescribed me Bentil and said to take it when needed. It seems that he is not taking it very seriously. Right now I spend every day expecting that another major flare is coming. I wish I could do something to stop the progression of my symptoms, but my doctor is not being very helpful.

Do you guys think a colonoscopy is really needed? Should I ask my doctor for some other medication that can help me?

I also don't think you need another scope. You know that you have UC and based on your symptoms it seems you're heading into a flare.

I totally agree that you should start on mesalamine enemas and maybe even up the Lialda to 4 to nip the flare in the bud.

And I also think you should stay on enemas for maintenance (twice/week) even when you are in remission.

I do not believe in colonscopies to monitor UC. I just discussed this with my new family doctor(he agreed with me) and my former GI did not request them either. There are definite protocols on this and it relates to monitoring for our increased cancer risk. My new family doctor is a resident in a mega MD group/medical school/ hospital network. I am going to ask him where the protocol comes from. I am not sure if it is their protocol or more of a natinal accepted practice. Maybe somebody here knows and can chime in.


I am not saying that GIs that request repeated colonscopies are crooks. I do think they may be subconsciously lining their pocket or practicing defensive medicine. They may not realize that many patients have to foot the entire bill. They may just be continuing older protocols or following anecdotes from their practice. I read UC articles in GUT and have never found a study supporting colonoscopies to monitor UC. There are many supporting increased frequency for colon cancer monitoring. If you have had polyups that frequency is increased.

Unnecessary testing and repeating tests when you change doctors is a very significant reason health care costs are so high. My new "kid" doctor tried to steer me to their network GI. I said no way that I am in remission, I think that is a total waste of money and will not be covered on my plan. He went to talk to his attending and I think I got my wish. I will get an open ended referral.

Keep in mind that colonscopies and the sedation have risks. What is the benefit?

I think I read here that 10 years from diagnosis was protocol if you had no other risk factors(age, polyups, more than distal,family history..). 3-5 if you fall in the above categories. My former GI said 3 but didn't trust him at all. My new primary care seemed ok with my insisting on 5-10. Doctors don't like to commit.

After 10 years it does seem to be 2 years.

Personally I am sticking with a target of symptomatic remission. If I have no real flares, 5 or probably 10 years. Flares then 5 depending on how bad.

I am also going to push for a sigmoidoscopy if I decide on 5. If my UC hasn't moved farther up, why bother with the full colonoscopy? All my problems are/were with 30 cm(I think) of the rectum. Diverticulous, one large polyup and inflamation was very minimal above the rectum.

Your GI might want to do a colonscopy for the following reasons:

To see how bad the flare is. Some patients under tell or exaggerate their symptoms.

He wants to prescribe prednisone and needs evidence of why he should prescribe pred.

He wants to see where the flare is, because treatment options can vary depending on location.

I too think you should try rectal suppositories first. Bentil is not going to do anything for the inflammation.

USGE protocols for colonscopy in UC are (or, were -- I haven't looked in awhile):

-- diagnosis

-- cancer surveillance every 1-2 years after 8-10 years of disease activity.

-- major change in treatment (rendered moot, I'd say, by medical literature that has fairly standardized treatment courses). 

These protocols specifically contraindicate using colonoscopy to visualize the disease:  Less is more; treat the symptoms. 

Furthermore, there's ample medical evidence that disease activity doesn't correlate to severity of symptoms. 

Doctors can be clinicians or technicians.  I'd avoid the technicians.

YES, THEY WILL!!!!

Sorry for yelling, but I also have pancolitis (whole colon affected) and they helped me tremendously when I was flaring and I fully believe that they are helping keep me in remission. Studies show that UCers who use mesalamine enemas twice weekly in addition to oral meds stay in remission longer than those who only use oral meds. I've read three different studies that show this, and have not come across one study that shows no benefit to using enemas when in remission.

The reason they work is because oral meds do NOT effectively treat the end of the colon and rectum, and rectal meds (obviously) do a very good job at this. Flares start in the rectum, so it's important to keep that area quiet.

Also, my (former, since he retired and I'm moving) GI said that if there were a way to treat the whole colon with an enema, that it would be a wonderful thing, because the rectal meds are so much better at getting the inflammation calmed down.

Get a new doctor, seriously.

Shot in the dark, here, but I'll guess he doesn't deal with IBD patients much. 

Sigmoidoscopy is a decent compromise with a doctor who's going to take you seriously, but if he's just going to recommend the same course of action he already has, then it's a waste of time.

I've never had a problem with flex-sigs.  No sedation, uncomfortable but very tolerable, easy prep, about 15 minutes start to finish, and it's done.

 

I think subdued is on to something. It's easier to prescribe the correct medication when you can see what you're dealing with. My GI asked me to have a colonoscopy this year even though I had one last year and I went through with it. I was flared up and I think she thought I was exaggerating and wanted to see what was going on before putting me on stronger medication. She thought it was possible that I was dealing with IBS or mild rectal inflammation but it ended up that the inflammation was throughout.

A few months later, I was slightly flared up after tapering off prednisone and again, she wanted to make sure it wasn't IBS or hemorrhoids so she asked if I would do a sigmoidoscopy. I said OK and I had the sigmoidoscopy. Again, it was inflammation but more mild this time...

Sigmoidopscopy isn't a big deal, it's quick and doesn't require an anesthetic.

I agree that you sould see a different doctor. I don't like when doctors tell me that I can't try something that I need. You shouldn't have such a problem getting a prescription for enemas. They are wonderful for treating the rectum and not dangerous. It's not as if you're asking for narcotics.

I do think enemas would be more helpful than suppositories in your situation.

No, you don't, but when I first joined here right after being diagnosed, I saw how you've had UC for so long (and have controlled it pretty darn well) and have always used both rectal and oral meds, and figured you were on to something. Then I found those studies that cemeted my decision to keep using them!

I didn't think I'd been AWOL, but I suppose I must have!

But, one of your GIs refused you rectal meds for a long time as well, Ellen...opting for pred. Unless I'm mistaken (must check those notes..lol..;-)


fruitgirl...the "enthusiasm" (the AWOL part) with which you stated it brought a laugh, I loved it, and thank you. I'm frustrated when i read it...and I even mention it to my doc giving him a hint too as what's going on out there and to continue it as a suggestion. I don't know how much he comments on the use of them to peers, etc. Even those with pancolitis need rectums treated I say..., he says..they don't want to use them. Seems weird for a cause, doesn't it? ha.

q

No Q, he didn't refuse me rectal meds. He wanted me on as few meds as possible and I believed him being only two or three months into diagnosis. At my third taper try at 7.5 mg. pred, feeling lots of rectal pain, I asked for back up for the Asacol -- Canasa having heard about it on this board. He gave them to me.

Then, four months later, on the relapse flare, I asked for rectal enemas and he gave them to me. "See if you can hold them in," was all he said.

He just didn't ever offer anything except anti-diarheal and anti-spasmotic meds -- or suggest it because he thought all I'd need was Asacol, and if that failed 6mp, then remi.

Now my current GI made the mistake of saying why do you want to be on rectal meds. They are so expensive and no one likes sticking something up their butt. I changed his mind.