Silent Crohn's

Hi guys. I know some of you might be like 'oh stop complaining' or 'lucky you' but I am wondering if anyone here has been diagnosed with what my doctor calls silent Crohn's. I was diagnosed with Crohn's about 3 years and a half years ago but have very little in the way of symptoms, despite the fact that inflammation is active and what my doctor describes as moderate. Obviously I am glad that I don't get symptoms but it puts in a bit of Catch 22 as I don't know how bad the inflammation is unless I have a colonoscopy, and I don't know if I'm doing anything (diet or otherwise) that is making my disease worse, due to the fact I have no symptoms.

My doctor said that 1 in 6 people who have Crohn's have the silent form but I can't find much info about it from forums or other online resources. Have any of you heard of, or experienced this? Thank you in advance for your responses

I have not ever heard the term silent crohns either. Diet is an individual thing, I avoid seeds, spicy foods & fried foods for starters. I eat food that agrees with me & try to make healthy choices.

I too will ask, what medications are you taking? Untreated or undertreated inflammation will cause problems you don't want.

Oh gosh yes...food really impacts me.

I keep a food diary. (And it's been 8 years for me since I first came down with Crohn's) I list what I eat and how I feel that day. It's only with looking back that some of the minor things that I noted were symptoms of my UC/Crohn's.

Red sauce makes me feel awful--like a hangover. Heavy cooking cream (like in fettuccine) gives me horrible cramps. Spicy food (red pepper flakes) can make me sick for a couple of days. Eating too much beef... Just take me to the ER. Tomatoes....I have to avoid the sun or my prickly arms go crazy. (It's now labeled as extra intestinal eczema/psoriasis and I have steroid cream for it)

Do you have any extra intestinal symptoms? For example--before my blood work changed and I knew there was something wrong-if I ate tomatoes and then went out in the sun my arms would feel tingly. As time went by the tingle started getting stronger and changed to prickly and then to painful prickly. Spicy food--, my jeans seemed to get tighter when I ate it due to the bloating. (That too gradually increased until I'd have to take my pants off when I got home) If I ate cereal with regular milk I would have horrible cramps. Sugar caused me to have horrible gas and my cheeks would turn bright red.

This does not happen to everyone. It's just what I went thru. I was so busy looking for blood or vomiting that the other things didn't register until I started the food diary and then I had an AHA moment.

On your meds-has your doc suggested supplementing with a secondary medication?

Inflammation leads to healing. And just like your skin, when your intestines heal the area is thicker and may develop scar tissue which leads to a narrower intestine which can lead to poorer absorbation, scar tissue and obstructions. I didn't realize that it was important or serious until I had to have a colostomy in 2016, another surgery in 2019 for an obstruction and a 3rd surgery in 2021 for obstruction and modified APR (where they remove your rectum/anus-- but they left my anus in) and made my colostomy permanent. So when someone says inflammation I have really started paying attention. Not trying to scare you-- I just want you to know that this is something your doctor should be sure that he addresses.

Clo

I haven't heard the term "silent Crohn's" but it is DEFINITELY more common than people would think to have zero symptoms but then be surprised on a scope with a ton of inflammation. I would try to get a baseline of some simple tests, like CRP and fecal calprotectin.

Had an stressful episode 15 years ago (37) with major weight loss dropped to about 200 pounds. Stress leveled out and just naturally grew back to 310 pounds. Never investigated it. No problems (that I'm aware of) since. Until...

Big stress last year, family and pets, dropped from 310 to 220 in 4 months. This was a stress multiplier by not knowing what was gnawing away at me. Had some problems finding GI with crummy insurance. New insurance. Diagnosed Crohn's Ileitis in November. Humira controlling it wonderfully.
Excellent nurse asked about the bags under my eyes. I replied I have always had them. She responded that maybe I've always had Crohn's.

* blank stare *


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Post Edited (BirdDog) : 5/18/2022 12:11:20 PM (GMT-6)

I agree with Delta this will sneak up on you, and if you are fortunate enough to become much more self aware of your body you may notice it gets better. So paying attention is key to know when you need stronger treatment or when you can relax.

With this type of crohn's pay special attention to your bathroom trips. Things like going more seeing more D, rectal pain, stomach cramping all of which may be mild and not enough to seriously bother you means that you are heading downhill. You will get used to it and grow more resilient to all of this which can be a bad thing.

Don't forget to take a break and rest yourself when you are getting worse this can help and may bring you back to the other side of it easier.

I don't really know how effective tests are. I have a poor opinion of them myself. Sure they can see the colon, but that is only a very small part of your overall intestines and the colon is big it can take alot. The small bowel is where the real trouble can happen and most hospitals don't have the equipment to get a good look at it.