How to treat Crohns with no symptoms?

[ImDan]

Is there anyone else on the forum who has Crohn's Disease with no symptoms at all?

After reading some horror stories in here I do feel quite lucky not to be faced with any of the symptoms - however It does leave me in a difficult decision on what medication to take.

Obviously I'm not needing to medicate any symptoms - I'm only looking to get rid of the current inflammation, and prevent any long-term damage to my body.

I've been taking Pentasa (6 per day) for the last 1 month, and just started on a steroid Uceris/Budesonide (1 per day). I've been told I also need to take a biologic which i'd prefer to avoid.

If there's any else out there with no symptoms - how much medication is it worth taking to prevent future complications? Taking into consideration that most of the medications themselves have their own long-term side effects.
Also - what methods do you use to keep track of the current inflammation to see if the medication is actually working?

Thanks!

 

[my little penguin]

Tagging Clash
Her son had basically no symptoms but needed to take remicade

Just because you can't see the damage on the outside doesn't mean it's not there
I understand your hesitant about biologics
But out of all the meds available
Immunosuppressants especially 6-mp and aza scare me more given the increased cancer risk with them without the benefit of reducing surgery risk .

Risk of surgery ( at least for kids - ) is 75% within 5 years with immunosuppressants.
Biologics cuts that risk to 30-40%
T cell lymphoma risk is from combo of 6-mp/aza plus biologics not from taking only biologics by themselves


You can live without a Colon but you can't live without a small intestine

DS has been on biologics for about 3 plus years through elementary school and now middle school
He has not gotten any sicker than his siblings without biologics


Good luck

 

[ronroush7]

As far as tests, I would maybe recommend blood work and a fecal cs!protection whrrte they measure your inflammation through a stool ssmp!le.

 

[Clash]

My son has been asymptomatic with active inflammation for over 2 years. This at one point led to a small bowel resection.

He needs the biologics because none of the lower meds have been able to knock out the inflammation at all. We can only hope that humira will get the job done as he was on Remicade before the surgery.

At dx he did have a plethora of symptoms but once meds were started all the symptoms diminished completely. Since his blood work was never out of normal our only simple tracking tool (not incl. imaging and scopes) has been a fecal calprotectin stool test. It tests for inflammation in the bowels only.

>50 is the normal result and during a week last summer when he was out enjoying skiiing, wake boarding, tubing etc his level came back 1700, a full flare we were shocked. He had been extremely active all summer yet was apparently in a serious flare.

It could be that anti tnf meds are not the ticket for him some people don't fully respond. In that case we would have to look at other biologics like entyvio that don't work through anti tnf blocking mechanism.

 

[Robrich]

The early stages of Crohns with little to no symptoms is when diet can have the best chance to inDuce remission.
SCD, AID, PALEO diets have helped a lot of people like you. Check out the threads here.
Save the biologics, they don't work forever and when they fail the disease can be worse and you have used up your best weapon.
This is a lifelong disease and it is good to stretch out the very limited Arsenal of drugs available. Hoping new news come along in time
By all means keep a close eye on inflammatory markers. CRP, ESR cal protectin.
But give diet a chance. Take uceris if you want and maybe try AZA up to you.
Good luck

 

[ImDan]

The early stages of Crohns with little to no symptoms is when diet can have the best chance to inDuce remission.
SCD, AID, PALEO diets have helped a lot of people like you. Check out the threads here.
Save the biologics, they don't work forever and when they fail the disease can be worse and you have used up your best weapon.
This is a lifelong disease and it is good to stretch out the very limited Arsenal of drugs available. Hoping new news come along in time
By all means keep a close eye on inflammatory markers. CRP, ESR cal protectin.
But give diet a chance. Take uceris if you want and maybe try AZA up to you.
Good luck

Thank you all for the feedback.

That's actually a fantastic point on the biologics. I did read that they have a limited effectiveness - maybe i should save those for when i really need them.

According to my CT Enterography results I do however have a 'moderate length stricture'. Would the biologic be the one to help open this up - or prevent it from worsening? Or would that be the pentasa/uceris's job? My doctor doesn't seem to explain it well and it's pretty overwhelming being told to take all this medication at once!

I'll definitely look into those diets - I've always been one to eat healthy anyway.

 

[ronroush7]

Best to you.

 

[Robrich]

Imdan I can't really say about the stricture. Not sure if anything helps fix them just keeps them from getting worse. I assume that it is in your colon?
Keep a close watch on it if it gets real bad you may need a resection.
That's what happened to me long time ago before biologics.
Good luck with the diet.

 

[CrohnsChicago]

Hello there.

When it comes to symptoms and treatment plans, each person has very different experiences. All of our medications have numerous side effects that may also impact how we feel and how well we are able to go about our day. But again, each person reacts to medication differently and some people have more success on a particular medication that someone else might.

It's up to you to weigh the risks vs. benefits as it relates to your own health, monitor your symptoms, maintain in depth conversations with your doctors about your condition and learn to be your own advocate.

Also, please realize that just because you may not have any OUTER symptoms to prove crohn's exists, the real damage for those of us not in clinical remission is being done INTERNALLY which is the reason behind the treatment plans. Inflammation is an internal symptom which, if not properly treated, eventually creates the outer symptoms that you claim to be lacking and increases the chances of you needing the stronger medications like biologics.

As far as keeping tabs on how I'm feeling I created an online spreadsheet for every single medication and dose I've taken, the side effects I experienced while on them and once off of them as well as how long i was actually on the medication.

Is there anyone else on the forum who has Crohn's Disease with no symptoms at all?

After reading some horror stories in here I do feel quite lucky not to be faced with any of the symptoms - however It does leave me in a difficult decision on what medication to take.

Obviously I'm not needing to medicate any symptoms - I'm only looking to get rid of the current inflammation, and prevent any long-term damage to my body.

I've been taking Pentasa (6 per day) for the last 1 month, and just started on a steroid Uceris/Budesonide (1 per day). I've been told I also need to take a biologic which i'd prefer to avoid.

If there's any else out there with no symptoms - how much medication is it worth taking to prevent future complications? Taking into consideration that most of the medications themselves have their own long-term side effects.
Also - what methods do you use to keep track of the current inflammation to see if the medication is actually working?

Thanks!