“Silent” Crohns and treatment

[andrew83]

I’m 36y and was diagnosed with Crohn’s just before Christmas 2019.

I had noticed blood in my stools a couple of times and was referred to a colonoscopy to rule out bowel cancer. It turned out that my insides were more or less a textbook example of ileocolonic Crohn’s disease of the inflammatory type with pretty extensive colonic involvement?

This was a bit of a shock, because aside from the blood, my symptoms had been pretty much non-existent. Sure, I do have the occasional stomach discomfort and what I would describe as a nervous stomach. But really not something I paid much attention to - and certainly nothing like some of the stories on this site.

Biopsies confirmed both chronic and acute inflammation and FC is very high (>1800). But all bloodwork including CRP is normal, no signs of malabsorption or anemia.

I know that beating this into remission with steroids, as my GE recommends, will improve long-term prognosis. But with a disease that doesn’t really affect my daily life (and that I’ve probably had for many years), it’s just not an easy decision to start a treatment with so many side effects. I feel a bit like I’m trading for something worse.

I haven’t decided yet but I’m also considering the scenario where I skip medication for now but keep a keen eye on progression via diaries, regular bloodwork etc. I know that guidelines suggest that ‘no treatment’ can be an option (in mild active cases) and, with the cat out of the bag, I should be able to act quickly in case of progression.

Anyone with a similar story?

 

[Adam1971]

Hi there. I have a very similar story. My crohns is also pretty "silent". I was diagnosed at age 42 (now 49) when I developed increasing pain in my right lower abdomen, right where the ileum ends. Turned out that I had already developed a stricture that only surgery could remedy. I had no bouts of frequent diahrea, normal crp, no symptoms until the damage was done. After surgery, no pain or problems until now. It seems the same pattern has been repeated. I went without treatment for these 7 years after surgery and now I may have to have surgery again. I'll have a better idea after a colonoscopy this Tuesday.

I wonder if I should have been on treatment meds to prevent a "silent" flare all this time. I know the gi doc's don't all agree about whether or not to treat after surgically induced remission.

My thought is that if I were in your position, i would definitely get treated. It is likely for up to 80% of crohns patients with moderate to severe crohns to have at least one surgery. With the severity and involvement you describe, i would think that untreated, you would likely end up with scarring and strictures that would require surgery. I'm not a doctor of course, just my 2 cents worth.

 

[Jo-mom]

I agree with Adam1971. My son had pretty much silent crohn's but it wasn't silent at all. He ended up with arthritis due to the undetected crohn's. This was when he was a teen. Left untreated, crohn's can really do a lot of damage and it doesn't take long. It is always better to get in front of it. Sometimes I wish my son didn't have such a silent crohn's as we would have definitely gotten in front of it before it reached his hips and spine. Also, although it was silent, once he had his colonoscopy/endoscopy, we learned that his colon was extremely inflamed.

There is a lot of good information on this forum so you should read it over, do some research, talk to your doctors, but never think for a minute that if you feel okay, that crohn's is sleeping. Good luck.

 

[Delta_hippo]

Don't ignore it is my advice. Crohns is a sneaky disease. The main risk of doing nothing in my experience is if the inflammation leads to ulceration leads to perforated bowel leads to sepsis. This happened to me and the only warning signs were occasional upset stomach, mouth ulcers, night sweats and poor appetite, all of which I wrongly attributed to post pregnancy hormones.

If disease is mild may well be able to get away with gentler meds and maybe diet changes, some have great success with this. But keep a very close eye on things is my strong advice, don't assume no symptoms = no problem, and if you get any warning signs like fast heart rate, low blood pressure or fever, seek emergency help.

 

[andrew83]

Sorry to hear that you may have to go through surgery again, Adam.

For me, I guess it’s the usual case of coming to terms with having a chronic illness. But it’s extra tough when I feel fine and treatment, by all accounts, will make me feel worse in the short run.

On the other hand, it would be much worse to end up with serious complications in a few years time and having to second-guess my decisions now. And in any case, I know that I’m just pushing things in front of me if I go untreated for now.

So thanks all for the feedback. I’ll probably go for the meds.

 

[emmaaaargh]

I had silent Crohn's for a while (although it wasn't at the start of my disease, which was weird). I didn't feel any symptoms for a couple of years, while my inflammation markers creeped higher and higher. Then everything sort of exploded, I started getting worsening symptoms, and I've just had extensive surgery that has put most of my intestine temporarily out of commission. So... I would not wait, no. I think about it like this: lots of diseases, even cancer in the early stages, may not produce symptoms. But if you know it's there, would you still want to leave it? Prevention is so much easier than the damage control that comes afterwards.

 

[Catherine]

You could try EN to get you remission instead of steroids. This is formula in place of all food for least six weeks. Its often the first treatment used when you dx Crohns as a child.

 

[Catherine]

I have bump a thread of mine it in Parent of children with IBD section. It details my daughter journey to Crohn dx. She very few if any symptoms when we were trying find why iron were low.

Had trouble trying to link the thread.

 

[andrew83]

@Emma: I think the difference from this and cancer is that it’s pretty certain that untreated cancer will be fatal in the long run. Whereas Crohn’s is such a hetereogenous disease that you can’t really know what the disease course wil be.

My thinking here was that when I’ve had the disease for probably many years and haven’t really felt it, it might be more benign. I remember reading that a relatively late diagnosis of Crohn’s is often associated with a milder disease course.

But I also realise that there are no guarantees and that things can take a turn for the worse in a very short time.

@Catherine: thx, I’ve investigated EEN a bit. Compliance would be hard since I do a lot of travel. Some of the ‘partial EN’ diets sound more manageable. But it’s not a treatment that’s widely used where I live (Denmark).

 

[emmaaaargh]

Lack of symptoms does not denote benignity, though, which is the point I was trying to make. If the test results are clear that you do have inflammation, ignoring it will allow it to progress - whether that happens slowly or quickly. Long-term studies that the disease can evolve over time and become more complex with a higher risk of complications such as stricture and abscess. But if you are set on going without medication at this time, I can only advise you to be vigilant, which it sounds like you will do anyway! I wish you the best of luck.

 

[Scipio]

The biggest threat to the health of Crohn's patients is not the side effects of Crohn's drugs. By far the biggest threat is the damage caused by uncontrolled or poorly-controlled Crohn's disease. The serious side effects of the drugs are real but rare. The cumulative serious damage from uncontrolled Crohn's resulting in bowel blockage, fistulae, and surgery is real and very common.

My Crohn's symptoms were mild for years, so I avoided any heavy-duty medication. That lasted right up until I developed heart failure due to an extra-intestinal manifestation of pericarditis - when the Crohn's suddenly decided to attack my pericardium. Over about a two week time frame I went from having "silent" Crohn's that had lasted for years and I thought would last forever to having my chest cut open on an operating table to have my inflamed pericardium removed.

I've been on Stelara ever since and haven't regretted it. The Crohn's is in remission and so far no side effects. I just wish i'd started a lot sooner. I might have avoided major heart surgery.

 

[pwadm]

My Crohn's symptoms were mild for years, so I avoided any heavy-duty medication.

Thank you for your insight. This is exactly what I am doing right now, and maybe I should rethink this strategy. I actually use mainly symptoms to evaluate if something is working or not.

 

[my little penguin]

If you have no symptoms outside doesn’t mean damage isn’t happening inside
During your scope they found damage /inflammation
If that same damage or inflammation were on your outer skin/arm leg etc would you leave it be
Not seek treatment
Just because you can’t see it outside doesn’t mean it isn’t there
Ds was dx at 7
We were afraid of drugs
Then some kind parents pointed out we gave our child Tylenol as an infant
Tylenol has side effects of Steven Johnson syndrome liver failure death
This I gave to my kid without a second thought
Risks of possible side effect vs benefit

in our kids case keeping the crohns under control (and extra intestinal manifestations) for as long as possible
He takes Stelara and methotrexate
His intestine are pink and healthy
We want to them that way

 

[andrew83]

Really helpful to hear about some real life experiences, still a bit abstract to have a disease this serious with so limited symptoms.
But have decided to go for the meds. Will be starting an 8-week course of prednisolone tomorrow. Thanks all for the input.

 

[InstantCoffee]

Mine is far from silent, but despite the fact that I have severe food sensitivities, I don't seem to show any endoscopic sign of disease as long as I avoid the more severe trigger foods.

Because I don't show signs of inflammation, my doctor won't prescribe me anything.

I was on Remicade from 14-18 then Humira from 18 to 21 when medication stopped controlling symptoms. I dropped them and pretty much went, "Well it was a short life..." and accepted I was gonna die. My last endoscopy around that time shower ulceration of the stomach and gastric sphincter, delayed gastric emptying, and inflammation of the large intestine.

Then I went super elimination diet, recovered, and by 23 I was "functional."

I went back at... 26 or 27? because I was experiencing chronic pain, came back with mild inflammation and elevated markers.
I ended up finding it was a dietary issue.

I asked my doctor about LDN or MMJ at the time and he said he won't write scripts for MMJ due to lack of studies, and didn't know about LDN, so I just left.

At this point idk what to do unless there's a medication that will reverse food intolerances, I'm stuck untreated.

 

[andrew83]

Small update: 4 weeks into an 8 week course of steroids. No side effects to speak of apart from constantly feeling like I’ve had two cups of coffee too many. Just had new FCP and now <20 - hope it stays like that for a long time!