Diagnosed with Crohn's Disease

[alvarez1124]

Hello Everyone,

I was just diagnosed with Crohn's Disease. The first GI I went to see performed an Endoscopy and Colonoscopy which revealed Colitis so he decided to test for Crohns. The Prometheus IBD test came negative but a capsule endoscopy revealed Crohns. He wants me to take Prednizone 20MG for a month or 2 and transition me over to Humira.
I went to see another doctor for a second opinion and he agreed I have Crohns. However he mentioned it is mild and did not agree about the treatment plan. He is suggesting to start me on Entocort to see how I respond to that and go from there.
I have been having diarrheah for a few months now but dont have any cramps or abdominal pain and no blood on my stool. I am taking Cholestyramine powder 2 times a day which is preventing me from flaring up.
I'm new to this and not familiar with any of those treatments. What do you all think? Any advice is appreciated as I am learning how my boddy reacts to this disease.
Thank You

 

[Scipio]

Your docs are talking about the two main different strategies for treat Crohn’s - the old “Bottom Up” and the newer “Top Down” strategies. With bottom up you treat the symptoms. You start with the milder (and often cheaper) drugs first and move up to the stronger (and more expensive) drugs such as Humira only after the milder drugs fail and symptoms return or increase. The top down strategy is to hit the disease with the powerful biologic drugs early with the hope of preventing cumulative damage to bowel and the attendant build-up of scar tissue and risk of complications such as stricture or fistula.

Currently, top down is the preferred strategy for moderate to severe disease, and the bottom up is still recommended for very mild disease. So perhaps your docs don’t really disagree on strategy so much as they disagree on whether your disease should be classified as mild or as moderate. I’m guessing that the first doc thinks it is moderate and your second doc judges it to be mild.

When I started out with Crohn’s my disease was very mild. Except for one bout of anemia all I ever had was occasional mild right side abdominal pain. No diarrhea. The Crohn’s was first detected as an incidental finding while looking for something else. So like your second doc, my GI started me on occasional short courses of Entocort. Which worked fine for a few years but eventually my disease progressed to moderate thanks to an extra-intestinal manifestation of Crohn’s as severe pericarditis that landed me in the hospital getting heart surgery to remove the inflamed pericardium. So after that the GI put me on Stelara, and I’ve been in good shape since then.

So these are the questions you are facing: Is your disease mild or moderate? And thus is the correct therapy bottom up or top down? If you choose mild and bottom up, the next question becomes what will you do for maintenance therapy? Whether it’s prednisone or Entocort, you can’t stay on steroids long term. The side effects are too great. You need to transition to some other drug.

So that’s your situation as best as I can tell. We can’t make the decision for you. It’s for you to decide for yourself in close consultation with your doctor. One of the frustrating things about Crohn's is that there is seldom one clear path forward. There are usually several options with no clear way to choose without a magic crystal ball. Good luck either way, and feel free to come here often with any questions you have and to share with others what you learn.

 

[Lady Organic]

very well said!

 

[crohns35]

Your docs are talking about the two main different strategies for treat Crohn’s - the old “Bottom Up” and the newer “Top Down” strategies. With bottom up you treat the symptoms. You start with the milder (and often cheaper) drugs first and move up to the stronger (and more expensive) drugs such as Humira only after the milder drugs fail and symptoms return or increase. The top down strategy is to hit the disease with the powerful biologic drugs early with the hope of preventing cumulative damage to bowel and the attendant build-up of scar tissue and risk of complications such as stricture or fistula.

Currently, top down is the preferred strategy for moderate to severe disease, and the bottom up is still recommended for very mild disease. So perhaps your docs don’t really disagree on strategy so much as they disagree on whether your disease should be classified as mild or as moderate. I’m guessing that the first doc thinks it is moderate and your second doc judges it to be mild.

When I started out with Crohn’s my disease was very mild. Except for one bout of anemia all I ever had was occasional mild right side abdominal pain. No diarrhea. The Crohn’s was first detected as an incidental finding while looking for something else. So like your second doc, my GI started me on occasional short courses of Entocort. Which worked fine for a few years but eventually my disease progressed to moderate thanks to an extra-intestinal manifestation of Crohn’s as severe pericarditis that landed me in the hospital getting heart surgery to remove the inflamed pericardium. So after that the GI put me on Stelara, and I’ve been in good shape since then.

So these are the questions you are facing: Is your disease mild or moderate? And thus is the correct therapy bottom up or top down? If you choose mild and bottom up, the next question becomes what will you do for maintenance therapy? Whether it’s prednisone or Entocort, you can’t stay on steroids long term. The side effects are too great. You need to transition to some other drug.

So that’s your situation as best as I can tell. We can’t make the decision for you. It’s for you to decide for yourself in close consultation with your doctor. One of the frustrating things about Crohn's is that there is seldom one clear path forward. There are usually several options with no clear way to choose without a magic crystal ball. Good luck either way, and feel free to come here often with any questions you have and to share with others what you learn.

Very well said Scipio! I have had crohns for going on 40 years soon. Prednisone works well but as Scipio said you must stop it asap. Humira worked for me for about 5 years then it started not working as well. I am now on Cimzia which I like a lot it is doing great I feel better than I ever have. It's all about the attitude and finding which drug works best for you. It is a trial and error thing almost. Try and stay stress free. I find stress triggers my flares almost every time. I have anxiety which is also common in crohns my Dr told me. Good luck to you my friend, I hope you find a good med for you soon!

 

[alvarez1124]

Scipio, you have provided pretty good and valuable information. Thank You so much. I do like the Bottom Up strategy. I just don't know if trying a less powerful med at first will have any impact as far as making my condition worse if it does not work. I totally forgot to ask that question to the Doctor.

Crohns35,
I do need to stop worrying less, but this caught me off guard and trying to figure out which path to take is very frustrating especially not knowing much about the disease and treatment.

 

[Scipio]

Scipio, you have provided pretty good and valuable information. Thank You so much. I do like the Bottom Up strategy. I just don't know if trying a less powerful med at first will have any impact as far as making my condition worse if it does not work. I totally forgot to ask that question to the Doctor.

The long term risk from the bottom up strategy simply not working at all usually isn't that great. Because it will become obvious pretty quickly that it's not working, and both you and your doctor will be looking to switch to stronger medicine.

The bigger risk to bottom up is that it will work but it won't work well enough. In that case it might make you feel better and make you think you are pretty much cured, but the disease is still smoldering along at a low level - inflicting long term damage for years that eventually accumulates and then erupts as some major flare and/or complication that really makes you miserable and often requires major surgery. This is what happened to me.

It is this build-up of cumulative permanent damage that the top down strategy seeks to prevent. It tries to stop the disease in its tracks so to speak, significantly lessening the risk of later major complications. The risk to top down therapy is that you might be deploying the 'heavy artillery" when it really wasn't needed. You might have been able to manage just fine for many years with milder, cheaper drugs.

Obviously this is not an easy decision. There are pros and both sides with no clear way to predict the future now.

 

[Maddiegoots]

Hi I'm new to this forum i was just wondering if anyone has gone thru 3 medications and nothing has worked

 

[bexsli]

Hi I'm new to this forum i was just wondering if anyone has gone thru 3 medications and nothing has worked

Hey Maddiegoots,

I was diagnosed back in July of this year and I haven't quite gone through three medications yet, but I'm definitely not finding a lot of success with the medications that I'm on. I'm currently taking methotrexate and waiting on my prescription for humira, and so far I've only had success with prednisolone which my GI didn't want me taking for too long because of the side effects.

Unfortunately I've been experiencing on and off flares since January this year so I can understand the frustration and exhaustion you get from not finding any answers.

 

[DougUte]

With my experience I prefer the Top Down approach to therapy. I was misdiagnosed with IBS for years and when I ws diagnosed with Crohn's disease I was in horrible shape and needed surgery. Even then my insurance company would not approve Humira. They forced my doc to do the bottom up approach, because it was less costly. By the time Humira was approved Crohn's had reappeared after surgery, inflammation and all. Humira did reverse that damage. It worked for five years then lost effectiveness. I was switched to Entyvio, which is working well until recently.

 

[vanphuccity]

:heart: very well said!