Short and Sweet

[dcornwe]

Hello from Cincinnati. Im Dana, Im 38, married to Michael with 3 daughters 12,11, and 6. We also have a bloodhound pup who Im convinced is part cat.

I was diagnosised with Crohn's in 2005. I was having some diarrhea and cramping. So I called my mom, yes I know Im an adult but everyone wants their mommy when they dont feel good. She told me to call our PCP. Now our PCP is a family friend who I see on a regular basis. I couldnt have him looking at my girly parts and such, I swim in his pool, it would just be weird. So I called his office and asked for recommendations for a proctologist. (yeah, I didnt know what the hell I was talking abt) In any case a couple visits and colonoscopy later, dum, dum, dum, CROHN'S. You would think that I would, you know follow up and get more info. But nope sure didnt.:ybatty: My symptoms cleared up or so I thought. All the bodily issues/symptons I had I thought were normal. Fast forward 7yrs and here I am, on Humira, having the worst flare up of my life. They say older and wiser, in my case thats true I have learned more abt Crohn's in the past 2 months than the past 7 years.

So THANK YOU all in advance for the support and advice.

 

[SarahBear]

Welcome, Dana!

It's fairly normal to respond in the way you did! It took me a while to reach a point where I wanted to learn more about Crohn's; it's kind of an, "out of sight, out of mind," safety mechanism, I think. Were you prescribed any medicine when you were diagnosed, or did you go the seven years medication-free? Did you see a doctor for it during that time?

 

[muppet]

Have you been on Humira that whole 7 years? What other regimens, if any, did you try?

Any dietary modifications?

Pain drugs?

 

[dcornwe]

I went dr and med free up untill Feb 2011. I started the Humira then. Sadly the only reason I even saw my gastro dr then was because I went to the emergency room with what I thought was going to be an issue with my gall bladder, turned out to be a huge ulcer with a couple little ulcesr close by. My doctor was shocked that I had gone so long without any treatment. But I really thought my issues were just normal constipation, diarrhea, cramping that everyone has.

 

[muppet]

So you've got a "top-down" doctor then. It seems strange he started with Humira instead of Remicade, any insight there?

You're lucky you went 7 years without major issue. You may have a mild case or you may be prone to remission.

Humira is a pretty heavy hitter. 5-ASA may suit you fine and be much less traumatic and have fewer side effects, but in general once you start a biological you should stay on it until it's clearly no longer working.

I'd recommend talking to a second GI just for another perspective. I don't have a lot of confidence in "top down" docs who START with biologicals and use the lower end drugs as last resorts.

 

[David]

Welcome Dana, I'm glad you joined but I'm sorry to hear of your bad flare I hope it subsides really soon! Are you feeling any better since starting the Humira?

I'd recommend talking to a second GI just for another perspective. I don't have a lot of confidence in "top down" docs who START with biologicals and use the lower end drugs as last resorts.

I'm not seeing where the doctor has her on or discussed utilizing a less powerful drug. What am I missing?

Humira is a pretty heavy hitter. 5-ASA may suit you fine and be much less traumatic and have fewer side effects, but in general once you start a biological you should stay on it until it's clearly no longer working.

She's been medicine free for 6 years. I think the time for just 5-ASA is long gone, if there ever was a time.

 

[muppet]

That's what I said I was confused about. From her OP it sounds like Humira was the first drug she was put on. Seems odd, no?

5-ASA is all I've ever been on through 30 years of flares and fistulae. Excluding an aborted trial with 6mp and occasional pred. Which is to say, I don't think the time is past until its been tried, unless your guts are already in ribbons.

 

[David]

It doesn't seem odd at all if they're utilizing the top down approach which more and more doctors are. With the top down approach, they don't go to the heavy hitters and then utilize 5-ASA later on if the heavy hitters don't work. It should probably be called the, "Go to the top" approach

One of the biggest ideas behind the top down approach is to knock the inflammation down and promote mucosal healing long before your guts ever get in "ribbons" in an effort to stop stricturing and subsequent fistula. If I see someone only on 5-ASA I always worry that we'll be seeing them with more complications down the line. I know you're big on supporting data and the data really doesn't support the use of 5-ASA in Crohn's Disease, especially standalone.

 

[dcornwe]

Humira is the only drug I have ever been on. My docotor decided to treat agressively to keep me in remission. At least thats my understanding. The Humira has worked great up until recently. Since I hadnt really educated myself abt crohns until recently I didnt question his choices. Also Remicade was offered as an option, but I choose Humira over the Remicade because at the time I felt the side effect were worse than the crohns symptoms I was having. Now that I have educated myself, I have a whole slew of questions to ask my doctor at my appointment next week. Like should I be on an antibiotic or steriod in addition to the Humira.

 

[muppet]

I think the urgency of the situation is a big factor. Some people suffer and suffer while they wait to be diagnosed, and by the time they're "cleared" for treatment, they probably need a top shelf drug to reverse some damage and get back under control. In my case, there were no biologicals in 1983, so bottom up was all there was.

Still, my current GI, who I got to after rejecting 7 or 8 GIs, still believes in bottom up. While I'm sure data almost certainly shows the best outcomes going for the nuclear option, in terms of inflammation and complications of Crohn's, I'd be interested to see if they also consider peripheral effects of the drugs. Also, how long they follow patients. 5 years seems to be a cut off for a lot of people when Remicade or Humira cease to be therapeutic, but few studies go that long.

Anyway, all of that is still a bit of a red herring and I wouldn't want to bog down the conversation with the above paragraph. My take on the bottom up approach is that while most people will almost certainly have a great outcome from the top-shelf drugs, some portion of the population will be OK on 5-ASA, and will never know unless they try it first. Obviously there is risk involved in this and the GI should take all factors, such as current inflammation and progression, into account, but my GI and I agree that you may as well try the low-cost, low-impact alternatives first to see if you're in the smaller subset of patients for whom they are plenty effective. My Crohn's is primarily in the descending colon and rectum (while I have full large bowel involvement) so Lialda works great for me and is a great deal less expensive and risky than Remicade.

 

[David]

Humira is the only drug I have ever been on. My docotor decided to treat agressively to keep me in remission. At least thats my understanding. The Humira has worked great up until recently. Since I hadnt really educated myself abt crohns until recently I didnt question his choices. Also Remicade was offered as an option, but I choose Humira over the Remicade because at the time I felt the side effect were worse than the crohns symptoms I was having. Now that I have educated myself, I have a whole slew of questions to ask my doctor at my appointment next week. Like should I be on an antibiotic or steroid in addition to the Humira.

Chances are you won't be put on a steroid or antibiotics. More likely he'll have you take the Humira more often or switch you to a different biologic such as Remicade or Cimzia since you did well with Humira.

There's obviously different methods to treat Crohn's and prefer what I call, "The shotgun approach" (adding diet, lifestyle, and other changes to the treatment) but so far I think your GI has done you well as I'm a fan of the top down approach.

 

[muppet]

Another vote for the shotgun approach!!

 

[dcornwe]

You all are awesome! Thanks for all the input.