Crohn's Disease Forum » Support Forum » Undiagnosed Club » Can intestinal inflammation spontaneously just disappear?


02-22-2016, 12:48 PM   #1
doggydoggy
 
Join Date: Feb 2016
Can intestinal inflammation spontaneously just disappear?

Hey hey everyone,

So...here's my story.

I'm 30, but I've had "stomach problems" for forever...literally as long as I can remember. I don't puke typically, but I get weird stomach cramps and bouts of diarrhea (gross, sorry) multiple times of year, seemingly out of random. When I was a kid, I was diagnosed with an IBS-type anxiety stomach, which actually seamed to make some sense and I accepted it as truth. I also had an unremarkable endoscopy, and sigmoidscopy which showed only hems. A colonoscopy was deemed irrelevant b/c most of my pain is on my left side.

However, as an adult it seams like the stomach probs have gotten worse and more frequent. Then two summers ago (not this past summer, the one before it) it happened again and I got absolutely so frustrated (maybs b/c I wanted to go to the beach but was stuck in bed...haha). I ended up going to see a gastro guy who gave me the whole "it's probably your ibs" speech, but I insisted on testing (ahem...gut instinct). So, my fecal calprotien level was 236 and there was white blood cells in my sample as well--however, I was negative for all the parasites on the test. Everyone. Was. Shocked. The dr was basically like "so....Crohn's?".

Here's the thing that happened though: by the time I got the test results back I was feeling much better. So, before jumping to a colonoscopy we redid the test and everything was fine--like there was no detection of inflammation what-so-ever. Which, honestly was a really weird feeling. On the one hand, I was glad whatever inflammation was there went away, but on the other hand I was super frustrated that I was back to square one. The doc was basically like "crohns doesn't go away on it's own. It's probably something else or nothing." Ugh.

But the thing is, now I know what inflammation feels like, and it really does come and go for me. Like, two weeks ago I was feeling pretty sick, but now I'm okay again. Does that happen to anyone else???? Is this part of it? Can IBD spontaneously remit or should I look in another direction?

It's just a little frustrating to know something's actually wrong but not have a clear idea what direction to look really b/c I feel like I keep getting blown off. I don't know if this is relevant, but I also have scoliosis and get sinus infections pretty frequently as well. Maybe my body is just sensitive to every single bug in the whole wide world? But that sounds crazy, right? I am also under weight--at 5'3 I weigh 98lbs. I am not always hungry, but I just force myself to eat. I'm not really one of those people who can "just skip a meal" because I will end up losing weight if I don't really think about it. It's so so so so frustrating.

I'm sorry this post is so long, and seriously thankyou so much for taking the time to read it. If you have any suggestions at all, please please let me know.

<3
Doggy Doggy
02-22-2016, 01:59 PM   #2
pb
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Join Date: Dec 2011
Crohn's can be a very weird disease (they need to learn so much more IMO) it's not uncommon for anyone to develop CD just because they already have IBS, it happened to me but the other way around, I had CD first then got IBS about 12 yrs into already having terrible flaring CD.

My CD didn't present the usual way either (with inflammation in the small intestines) it started with perianal crohn's skin tags when I was teen (around the time I was smoking and on BC pills which I think was likely my trigger) these tags would come and go all on their own, they made no sense to me as I was never constipated or anything, no D, no gut issues until in my early 20's about a yr after having my first baby that's when CD hit me hard internally as well (I had always been told the skin tags were just hemmies, even after I got sick internally, unfortunately they did an emergency banding on the skin tags thinking like all the docs in the past, that they were just hemmies but they banded my perianal crohn's skin tags not realizing that's what they in fact were) so CD doesn't always come about in a typical way, it can be very sneaky based on my experiences with it.

You definitely need to get a proper DX and don't let the fact that you had IBS first interfere with getting a proper DX if in fact you do have an IBD as well (either CD or UC) I also have sinus issues since I was a kid, some say there's a connection to crohn's and sinusitis but I don't know if that's been proven or just speculation. Back in my day when I got DX with my CD from the first GI I had, he told me (in 1991) that with crohn's you can go into remission anywhere from a day to years and same with flares which I thought was ridiculous but who knows, I certainly flared for 23 yrs straight mind you I was also either allergic or unresponsive to the oral meds, that's also one of the reasons my GI suspected I had also developed IBS as well as lactose intolerance. Once I finally went on Humira since I developed an RV fistula, my CD went into remission finally for the first time in 23 years since getting sick with CD. My IBS is still bothering me and it's a slow process but my IBS is very stress related, I did the low FODMAP no fructose diet to see if any of the food groups were my IBS issue but since nothing really changed while I did the diet they ruled that my IBS is highly stress driven. That being said, I still eat properly at 3 meals a day (which I hadn't for decades) and quite healthy as well....I use mediation as well as yoga and weights regularly to try and help battle the severe emotional issues/depression/anxieties that were mainly brought on from getting sick and being sick for so long with CD.

Whatever is going on with you, I suggest trying to incorporate guided meditation (short 3 minute ones are easy to find on youtube) as well as at least yoga since you're already underweight, yoga is a great tool for IBD and IBS.
02-22-2016, 02:12 PM   #3
doggydoggy
 
Join Date: Feb 2016
@PB -- Thanks for your thoughtful reply! I have done yoga before, I really like it, but it kind of sucks because a ton of yoga poses are contraindicated for scoliosis and I never know which ones I should do.

One question I have for you (if you don't mind answering) and anyone else: have you ever achieved spontaneous remission? Because that seams to be what is throwing everything off here. Like it literally comes and goes with out medication. Like, how is this actually possible?
02-22-2016, 03:37 PM   #4
pb
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Join Date: Dec 2011
I suppose that would be difficult, maybe find a yoga instructor that could help you figure that one out? I have never gone into spontaneous remission (I wish though!!) I flared every day literally for 23 years until I went on Humira February 2014. I don't know how often it would happen to patients, I sure hope you find the answers you're looking for!
02-22-2016, 04:19 PM   #5
The Real MC
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Inflammation and disturbances in the digestive tract can be triggered by certain foods. That turned out to be the case with me. I managed to isolate the trigger foods and my tract is quiet and not inflamed. If you did the prep the day before the colonoscopy and they put you under for the procedure, it is likely that the prep cleaned the trigger foods out of your piping and could have eased the inflammation.

Ask your doctor about a bland diet. That is designed to limit foods that are known not to irritate the digestive tract and is not as restrictive as a liquid diet. Once you start the diet it may take a few days before the piping calms down 100%. Then slowly introduce foods you normally eat (with notes) and if you experience trouble then check back on your notes for any suspect food. It can be a painful empirical process, but once you find the trigger foods then life is much better. The exasperating thing about IBS is that no two patients have the same trigger foods.
02-22-2016, 11:15 PM   #6
ronroush7
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Sending support
02-22-2016, 11:43 PM   #7
Lady Organic
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to your question : '' Can IBD spontaneously remit ?''

the answer is: yes. (already happened to me in one part of my GI track under no treatment.)

key now is good monitoring. Crohn's is a chronic disease with flares and remissions. Some people can stay in remission even meds free for a long time. each patient is different. Talk to you doctor about fecal calprotectine. This is a simple stool test to help monitor inflammation in the bowels. This can help differenciate IBD from IBS. wishing you well.
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
02-25-2016, 12:47 PM   #8
pb
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I suppose it technically happened to me in the sense that when I first became sick it was affecting my TI, colon, rectum and anus, it remained constant in the colon, on and off in the rectum (constant in the anus with my perianal crohn's skin tags getting mistaken for hemmies and being banded) and only last about 2 yrs in the TI and without meds it cleared up and never came back there...it made up for it though, kept me flaring in the colon for 23 yrs straight.
02-29-2016, 09:40 AM   #9
NiKo_V
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Join Date: Feb 2016
Location: United Kingdom
Our collective clinical understanding on the true nature of inflammation is somewhat problematic when it comes to measuring inflammation. Within my experience of 13 years of highly active and life threatening Crohns, not once did my inflammation levels appear to be elevated through conventional bloods and alike markers.

Inflammation can perhaps be considered in much the same light as a Gravitational Wave, it oscillates, continually re-shaping the physical medium in which is exists within, however, these alterations are not always so significant to inflame the physical medium enough for detection..

So indeed, it can spontaneously somewhat seemingly pop out of existence, however, the more accurate term would be that the frequency / intensity is not a constant - consider a long stretched out calm wave-form (as in sound/music) , in comparison to a fast close-up / coiled oscillating wave form. In the realms of physics, particles pop in and out of existence continually.

Indeed also, the neurological and emotional links as triggers within CD is only really now being touched upon, it is perhaps worth to be cautious that it is possible for the expression of inflammation to undergo a transference of this manor, so it may be wise to monitor your neurological experiences following this event..

With Peace & Love Always


NiKo
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