Newly diagnosed. Should I be on medication?

[robby]

Hi all,

I wanted to introduce myself and my story to this forum, and ask a question as well.

I'm 25 years old and I was diagnosed with Crohn's last November. I had been going through 4 years of nonstop intense emotional stress, and I guess it finally took its tole. After going through 3 months of worrisome BMs, abdominal pain and debilitating fatigue, I decided to get a colonoscopy. They found colitis and a couple ulcers and said that I probably had Crohn's based on where the inflammation was, and that it was "mild". I was put on Entocort and told to take it until my symptoms got better, and then to stop. I stopped taking it around early February when I seemed to be going into remission.

Since then, I have had moderate symptoms but nothing debilitating like my initial flare up. I mainly have disappointing BMs pretty regularly and some bad bloating sometimes, but nothing too painful overall. I do tend to have very light colored stools sometimes, even bright yellow or clay colored. I have never seen blood in my BMs though.

I have tried to do the SCD diet as well to be on the safe side. I don't do it 100%, but whenever it is feasible.

This brings me to my main question. Should I be taking medication right now? I have come across forums, on this site and others, suggesting that even when you are in remission it is important to be on medication so that your condition doesn't become much worse long term. My GI doctor, on the other hand, implied that its best to not be on medication any longer than you need to. What are your thoughts on this?

Thanks for taking the time to read, glad to be a part of the community!

Robby

 

[DJW]

Hi and welcome.

I can only speak of my case. I was off meds for 20 years. A wonderfully long remission. Once it ended about 3 years ago I needed meds. I'm on for life. My Crohn's is severe ( when in a flair).

Based on the course of my disease, the complications I've had, and all the surgery, I wish treatment options were better when I was first diagnosed.

Have you let the doctor know you've got symptoms?

My GI specialist encouraged me to get a second opinion. Is that an option for you?

Some doctors take a top down approach. Hit the disease hard right from the start. Others do a bottom up approach. Use meds to get remission. Your doctor knows your situation best. I'm no doctor.

 

[David]

Welcome to the community. Like DJW above, I strongly suggest finding a new doctor as if you do indeed have Crohn's then yes, you should be on medication and properly monitored.

 

[24601]

For most Crohn's patients the answer is yes, you have Crohn's and so even if you are asymptomatic then you should be having treatment to prevent relapse and that's absolutely been my experience. But I was chatting to a gastro doc (not my own) recently who said that with the advancements in imaging and diagnostic tests that we are now seeing a new population of patients who do have the disease very mildly and only need monitoring and can be fine without treatment.

Because that's so far from my experience, I have to say it's quite hard for me to accept! But I did just want to put that opinion out there.

The question of course that any newly diagnosed patient would need answered is whether they truly do have a mild case of Crohn's. I'm not really sure how accurately this can be known (too many of us seem to have been told we have a mild or moderate case only to end up as severe) and I think monitoring in the form of regular tests for inflammatory markers and imaging is absolutely key for all Crohnies.

What kind of testing is your doctor doing to monitor your disease activity?

Whether you have mild, moderate or severe disease, I think we should all be aiming for clinical and endoscopic remission and if our GIs aren't on the same page then IMO it's time to get a new GI. Is a second opinion feasible for you? I think getting another opinion on whether your disease is indeed mild and if you are actually in remission (and any other cause for you continuing symptoms found and dealt with) would be a good idea if possible. If you do have moderate or severe disease then a top down approach (moving straight to more aggressive treatments like biologics) has been shown to be more effective at changing the course of the disease and preventing the need for surgery so being confident in this assessment of your disease severity from the outset can make a big difference.

Also since your symptoms improved on Entocort and have worsened since stopping, if I were told there was no inflammation seen on testing but given no other treatment to resolve the symptoms, I would probably want to try another course of Entocort (or another treatment like enteral nutrition) to see if that brings about symptomatic remission again and if it did I would be looking to find a longterm treatment like immunosuppressants and/or biologics (or SCD of it works for you) to keep me there.

Best of luck

 

[Lady Organic]

some patients can remain in remission some time without any treatment. KEY is to make sure you are in remission... which is not clear in your description right now. The only way to know is to have proper close monitoring / fallow up with your Dr : Blood reports, colonoscopy, fecal calprotectine, etc, all those tools can help to know if your disease is active or not. If it is active, even minimally, treatment is important. Entocort is easy and fast treatment, a quick fix, but having to use it repeatedly calls for a maintenance/long term treatment drug.
is your dr providing you with good monitoring since february? That's already 5 months since you stopped Entocort and you should have had monitoring, right after the Entocort normally, to assess the degree of efficacy of the treatment. if the monitoring seems inadequate, ask for a second opinion or change doctor. It is really important to have a doctor who has time for you and who will monitor you well.