New to the forum, my husband was recently diagnosed with Crohns

Hi there.  My husband has Crohn's and I need some advise.

I will try to sum this up quickly. He was diagnosed with UC at 27.  At 37 he went into complete remission from that, so much that his doctor took him off the meds.  Then he had a flare up about a year in a half ago that go worse and worse.  He got a new specialist who thought he might have crohn's but wasn't sure. Nothing was working, not prednisone, or any of the UC drugs.  He has had 6 scopes in the last year and a half and about 3 months ago went for a second opinion at the C&C center at Mass General.  They diagnosed him with celiac and possible crohn's.  Since being gluten free the last 3 months, he's back to no symptoms. He's regular, no diarrhia for about 6 months and no pain. So much that he's never missed work for this and has been able to completely reshingle our house this summer and build a deck on the back.  He was feeling so much better that he was convinced it was the celiac that was the issue.

Yesterday he went in for an endoscope and colonoscopy at Mass General with the second opinion doctor.  Besides being one of the worst experiences of his life (different post all together), they confirmed crohn's, said there is still inflammation in his duodeum and wants him to start on 6MP right away to proactively fight the duodeum inflammation.  He was very very disappointed.  He does not think his symptoms warrant such a strong medication.  And since he's feeling so good right now, does he possibly risk being sick on 6MP?

I'm not sure how to advise him.  I don't think he will be getting scoped again at Mass General after the experience (they didn't read his chart or listen to him when he advised 3 nurses and the doctor that he needs more than a local anestetia and he freaked out and was in pain the entire time).  But with no real symptoms on GF diet and mesalamine enemas twice a day, does he really need to go on 6MP?

Thank you!

Once the 6MP takes effect most likely the mesalamine enemas can be stopped entirely.

And 6MP is really not that "drastic" a medication as opposed to say ... remicade or any of the newer biologics.

Many of us are on 6MP or its sister med Imuran w/nary an unpleasant side effect but lots and lots of effective benefit.

You want to understand just how sneaky and vicious Crohn's disease can be and is .... you can go on for several years w/absolutely no symptoms yet the DD is perking along quietly inflaming one or more areas of the digestive tract.

Then WHAP! The inflammation has worked its way thru the intestinal wall and caused a perforation, or a fistula, or a scarred obstruction and you are in a world of hurt and SERIOUS RISK.

It does NOT pay to leave Crohn's disease under-treated or un-treated. It WILL come back to bite you in a serious manner eventually.

Hi. My husband has crohn's disease as well. He was also originally diagnosed with Ulcerative proctitis like 5 years before he was diagnosed with crohn's disease. He is currently on Remicade and oral and suppository form of mesalamine.

From my experience crohn's can be a very scary disease if you don't take active steps to keep it under control. My husband only had occasional flare ups which were easily controlled by steroids when his diagnosis was still UP. Back then, he was just doing mesalamine. All was well, and then out of the blue, he ended up in the hospital with c-diff infection (no antibiotics involved), and then received a crohn's diagnosis. He spent 6 weeks in the hospital, lost 50 lbs, and was facing resection surgery before Remicade controlled the crohn's.

I was very very worried about putting him on Remicade. Remicade even has a black box warning on it for cancer, and can cause central nervous system disorders like MS, lupus like disorder etc. But we were looking at either surgery (with no guarantee of remission, and also, there is no going back after surgery). So we went with Remicade and so far it has saved our quality of life.

My husband has had small flare ups, but nothing like the one that landed him in the hospital. I attribute it to the Remicade. It has now been 4.5 years since we started Remicade, and our lives are normal. So far, our gamble has paid off.

Also, the doc does periodic blood tests to make sure Remicade is not hurting. So, that gives you a little peace of mind.

The reason I mentioned our story is because you are worried about the side effects of 6-mp. I want you to be aware of the dangers of unmanaged crohn's disease - it can turn your life inside out in a day. Also, leaving inflammation unchecked (with or without symptoms) can cause its own damage (scarring, maybe even cancer). So, my advice would be to take the 6-mp, and have the doc do blood work to ensure it is helping rather than hurting.

Good luck, and hugs

PV

Upper small bowel disease is surprisingly rare in Crohn's; it usually affects the other end of the small bowel, the terminal ileum. Hence unfortunately it will be harder for you to find advice on duodenal Crohn's, simply because so few have it.

Re 6MP. One thing to remember is that Crohn's patients do not take it at as high a dose as cancer or transplant patients. It usually is a well-tolerated drug, once you get used to it (there can be nausea in the beginning; start on a low dose and work your way up is my advice), but a small minority of people lack a certain enzyme, TMPT, to metabolise it effectively. There is a TMPT test you can have done beforehand, although most people don't have it done. Instead, their blood is monitored once or twice a week for the first couple of months to check that their blood cell count isn't dropping too low.

There's actually quite a lot to be said for starting a medication while you do still feel well and healthy. It's more likely to work than if you are desperately ill and not absorbing anything.

I gotta agree with everyone else: no one likes taking these meds, really, but they are easily the lesser of two evils. Good luck.

Your first doctor was unsure if your husband had Crohn's but at any rate meds did not help. Then another doctor gave a 2nd opinion that he may have Celiac, and when your husband went on a gluten-free diet his symptoms improved drastically. Then you received a new diagnosis from the 2nd doctor that it is Crohn's and he prescribed 6MP.

As I understand it the FDA placed a black box warning on Mercaptopurine, aka 6MP. It may be a good idea to get another opinion from a new doctor to determine if 6MP is really necessary.

www.fda.gov/Drugs/DrugSafety/ucm250913.htm

6MP? Was given azathio something and that didn't work, a steroid I can't recall and went straight to Remicade. Tomorrow that might change. I figure if it does not kill me I will be stronger. Should it go the other way, well that's God's decision. I've been on borrowed time for the last 39 years already. (I have to have a chat with the anesthesiologist before they put me under myself) Check out the possibilities. You call the shots. Bone up on patients rights. Sometimes you have to be more assertive.
Remember who paying the bills.

Remicade Better Living Thought Chemistry

Besides, it's not a "second opinion" if you are questioning the opinion of the doctor that gave you the second opinion to begin with.

First doctor said Crohn's.
Second opinion doctor said Celiac at first then now says Crohn's.

So if you get another opinion it will actually be a THRID opinion.

I was on 6mp for about 5 years with no problems. Just remember to get the blood work done as directed. Also, MANY drugs have black box warnings now - it's called CYA.

So, it's a decision based on rolling the dice with crohns which I don't think most of us would advise doing or taking the 6mp and being fastidious about letting your doc know if anything changes in the way you feel and getting the blood work done on time.