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severe Crohn's yet no symptoms

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Crohn's Disease
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Posted 9/4/2010 3:20 AM (GMT 0)
Yep you read that right. Last year I was inadvertently diagnosed with Crohn's. Yet I have no symptoms. BM's are just fine, everything's peachy. The Doctor of course wanted me to go on meds, but I'm a natural kind of girl and so choose to do the SCD plus see a naturopath experienced in dealing with this disease. I've been on it a year, but it's been difficult because of the fact that I don't suffer symptoms so I cannot tell if I'm getting better or not.

I know you think, wow lucky girl she doesn't suffer any symptoms, but honestly it's making this very difficult. I cannot tell whether anything is bothering me or not, I never have had blood in my stools or anything. I just had a small bowel follow through to see what's going on in there and although I have to wait to see my doc for the results, the comments that the doc who was taking the pictures weren't all that encouraging. She said that it was all very confusing inside of me, she had a hard time figuring out what was what and when I questioned her about that she replied "well it's the disease right."

I know I should wait to hear the results, perhaps I AM better than I was last year. I didn't think I'd be 100% better, but I would at least have thought my organs would be distinguishable from one another...lol...am feeling very discouraged.

Is there anyone else there with severe Crohn's but no symptoms? I just don't get it. How can I be this bad off and not be suffering in any way? If it weren't for all the test results I wouldn't believe it.
Posted 9/4/2010 4:36 AM (GMT 0)
If you have no symptoms then what caused them to look for Crohn's? 

If you're having no issues then you are most likely in remission.  Many people here follow the SCD diet and it has helped them as well.  I must say though in my OWN personal opinion, you should really be on some type of medication for your Crohn's.  You may feel fine now, but the disease usually always comes back.  It's usually 'less severe' if you're on a maintenance medication.

My GI had another GI shadowing him for the last appointment I went to.  The doctor shadowing said that he was totally shocked when he saw me because from reading my files and seeing my scope pics he pictured me to be weak, underweight, and look extremely sickly.  Meanwhile I felt fine and I'm about 60lbs over weight.  So I guess it just goes to show that even if we feel ok/look ok it doesn't mean our insides are fine.

Posted 9/4/2010 5:34 AM (GMT 0)
MAG-I've had the same said about me. You look just fine...but I don't feel that way. I don't show pain, so it's confusing for doctors to look at me, then see test results.

Anyway, Belle, when I first got sick with Crohn's, it came on gradually. I got used to it over time, and didn't think I was that sick. When I had surgery my appendix had ruptured and the crohn's was severe enough that barium from a test was leaking out of my intestines. Nurses walked in my room and were shocked that I didn't look or act sick. Crohn's can be like that though. Some people have symptoms come on so gradually that they become normal to you. It might be that being put on medicines will make you realize that you were dealing with things that you thought were normal.

I would say that if your disease is "severe" then you should definitely be on some medicine. Diet usually controls symptoms, but does not heal the damage of the disease. Most people here agree that people should be kept on medicine to keep the disease in check. I went 8 years between my surgeries and was not on medicine, and the disease did damage and I had very few symptoms.

You'll have to come back and let us know what your doctor tells you about the small bowel series. I'm interested to know what's going on.
Posted 9/4/2010 7:15 AM (GMT 0)
well if I am in remission then I always was. And no, I honestly do not have any symptoms. My BM's are fine, well formed ALWAYS, never bloody, I don't get cramping, I am perfect weight, appetite is good, I could go on and on...lol...I work out, lift weights, sword fight, Flamenco dance, I don't get it...

And yes I will tell you what he says. Thank you for your responses!
Posted 9/4/2010 11:34 AM (GMT 0)
Belle,
How old are you? When I was younger I didn't have a decrease in energy and was able to do so much. Now that I'm in my 30s I feel the lack of energy more.

I hope things continue well for you. Maybe you're lucky and won't have symptoms. I went through a long period after first surgery without symptoms. I had certain foods that bothered me, but little else during that time.

How exactly were you diagnosed with crohn's? Through bloodwork, or colonoscopy?
Posted 9/4/2010 12:58 PM (GMT 0)
My daughter is living proof that you can have Crohn's and no symptoms. No symptoms does not necessarily mean you are in remission.

Even last year, when a colonoscopy showed active inflammation in her terminal ileum, she had no symptoms.

It makes it very hard to tell when a med or diet is or isn't working - we can't go by symptoms, because there aren't any, so we have to have blood tests taken to check CRP, ESR, HGB, Ferritin, etc.

Posted 9/4/2010 2:22 PM (GMT 0)
I'm the same way, NJmom...my last colonoscopy showed infammation in the cecum and terminal ileum, but I had no symptoms - it was just a screening colonoscopy at the time. So you can have inflammation but not experience any outward symptoms. I, like the other posted here am curious as to how the OP was dx in the first place, though! :)

I guess my question is, what are the symptoms that the disease may be getting worse inside you if you have no "poop symptoms?"
Posted 9/4/2010 2:26 PM (GMT 0)
I can't really tell from your post just how bad your Crohn's is, but I do know where you are coming from. I sometimes don't think my symptoms are bad enough for severe disease. I had a colonoscopy done earlier this year and from the surgeon's and nurses' reaction I knew it wasn't good. Practically the first thing my GI said to me as I walked through the door was my Crohn's was 'really really bad'. I was like 'oh' skull

Don't get me wrong; I'm not symptom-free. In some ways I feel quite unwell. But I'm not chained to a toilet with 10+ BMs a day. I have never been hospitalised and have never had surgery. I do have diarrhoea (if not very many times a day) and I do have pain. The pain is a relatively recent development in my 10 years with Crohn's, and I by no means have it every day, although it seems to have been ramping up lately. (Last night was a bad one... =/) I also have anaemia and can't put on weight. And I suffer a lot with lassitude, especially in the evenings.

I think the problem with me is that my Crohn's has rarely flared up, nor has it gone into remission. It just got slowly got worse, and as another poster said, you get used to it over time. I didn't look sick and still don't -- I had concerns with how 'thin' I was a few years ago, but everyone has adjusted to my new 'normal' weight. I had my brother only a few weeks ago try to tell me more than once how well I looked, until, somewhat shortly, I told him I wasn't well. He said 'well you look well'. I said I'm not. Silence.

Er... This probably isn't very helpful, is it? <_<. To be honest, until your doctor gives you the results of your SBFT, it's hard to know what to say. I can say that not everybody with Crohn's has diarrhoea during flare-ups; most do but not everybody. Some people tend towards the opposite end of the spectrum instead ie constipation. By the same token, most people suffer abdominal pain but not everybody. I'm not an expert on Crohn's pain, but I think whether you feel pain or not depends on the depth of the inflammation (the deeper it goes the more likely you are to feel pain) and also if you have strictures (food passing through narrowed parts causes pain). Your Crohn's may just be taking a form where, at the moment, it's not causing you diarrhoea or pain or much else in the way of symptoms. Not to frighten you, but things can change; please don't take it for granted it will stay this way for you forever. In all honesty, it probably won't.

Just one other thought; if you're on the SCD that may be controlling your symptoms, if not the underlying disease.
Posted 9/4/2010 2:29 PM (GMT 0)
Well its great that you aren't having symptoms, but if you were diagnosed by biopsies, then you have Crohns. I have had this darn disease for nearly 35 years, and I had a remission for nearly 20 years with no symptoms, then one day BAM incredible pain and I wound up having to have a emergency resection (surgery).

Sounds like the diet is helping you, but diet alone is not enough to keep the Crohns in check. With Crohns you can have damage occuring without you even knowing it. You should always consider diet and medication as complimentary of eachother. I would highly recommend you get on meds asap to avoid the microscopic damage that can occur without you knowing and avoid needing emergency surgery like I did. Good luck!
Posted 9/4/2010 5:07 PM (GMT 0)
to answer some questions

I am 43. I have colonscopies every 5 years (have had 3 now) because I get polyps. Long story short I had my first one after surgery to remove an ovarian cysts, sounds weird I know but it's a long story. But even those have always come out okay, even the one last year showed nothing except that he thought something was slightly mishapen. So he sent me for a CT scan and that's where it all showed up.

Thanks everyone for your comments.
Posted 9/5/2010 3:27 AM (GMT 0)
its called Asymptomatic crohns disease. meaning your have been diagnosed but show no symptoms yet. hopefully you never will , but if something showed on you CT then its probably goping to sooner or later.. i would find out what was found. get a copy of the CT report.
Posted 9/5/2010 6:19 AM (GMT 0)
My concern is even though you feel no symptoms the disease is progressing regardless and I agree with Nanners you should be on some med(s) to reduce the damage thats happening. Nanners and I both have experience of this untreated crohns exploding into trouble "all of a sudden".
Posted 10/23/2010 4:52 PM (GMT 0)
Okay here's the scoop

I was diagnosed with sever Crohn's in the summer of 2009. I'm one of those oddballs who never had symptoms though so it really came as a surprise. I'm not big on taking meds, especially the ones the doctor wnated to put me on, the ones that cause fatigue, hair loss, and possible cancer, liver enlargment and bone marrow loss. So I did what I normally do and took my health into my own hands.

I researched and talked to others about the SCD and decided it was worth a try. Along with the diet however I got a naturopath recommended to me, one that has had success in curing Crohn's patients. It was a very tough year. I'm not big on cooking at all and I struggled with the diet, but I managed somehow and did it.

A couple months ago I went in for a small bowel follow through to see if I had improved any. With my lack of symptoms it was impossible for me to know if I was getting better or not. The technician mentioned how much a mess my insides looked and had me thinking that Ihad failed miserably. The resuklts were sent to both my naturopath and my doctor.

I saw my naturopath first. Yes I was still a mess inside but I had no more inflammation, it was just all scar tissue. I still had my fistula, but at least no more had grown. Then I saw my doctor and he basically said the same thing. Plus my blood tests all came back with no indications of inflammation in my body. He said there was a small spot that MIGHT indication I have some inflammation still but that it was insignificant enough to not show up in my blood work. he said that "the disease had burned itself out" and I wouldn't have to come back and see him for another 5 years or so.

I am still somewhat sticking to the diet, mainly thinking "whole foods". Keeping sugar intake as ow as I possibly can, as well as processed foods and wheat products. But that's a diet everyone should be on...:) I am still seeing my naturopath as I want to heal the scar tissue and that will take a very long time to do but I am determined to do it.

So that's it in a nut shell. If anyone lives in the Vancouver Canada area I can share who my naturopath is.
Posted 10/23/2010 6:43 PM (GMT 0)

Welcome , I was diagnosed with Crohn's after my first colonoscopy at the age of 55. I was bascially asymptomatic at the time and have been ever since. They found a real mess, immediately hospitalized me and did more tests before the diagnosis. Another GI and surgeon were called in during the colonoscopy and their first thought was cancer. I believe that I had Crohns for many years in the form of inflammation that healed itself as scar tissue. Many referrals and tests later I have had a resection of the colon in May 2009. I am having my first colonoscopy since then on Tuesday. We will see what is going on in there.

So yes you can have severe Crohn's with no symptoms. And yes it is hard to make decisions regarding meds or surgery when you are feeling so good. I do question the ability to heal scar tissue but it may not cause any problems for quite some time?

I doctor in Calgary and good luck to you.

Posted 10/24/2010 6:57 AM (GMT 0)
I would also like to know how one would heal scar tissue? There is nothing bad that will come from eating great and exercising but how will that heal scar tissue? I was under the impression that the only way to rid your body of scar tissue of the bowel is surgery. I know with joints your can kinda break it up with stretching and ultrasound but it does not remove it completely. Is there a device that the naturopath would use?
The fact that you have scar tissue means that you are now prone to bowel obstructions. The more scar tissue that develops, the more likely you are to obstruct due to intestinal stenosis. I would get a second opinion from a different doctor if they said that your insides are a mess but don't need to see you for another 5 years. Consider yourself lucky that you not experiencing all of the symptoms that many of do on a daily basis, but don't take the fact that you had a CT with bad results too lightly. Many people here have thought that they were in complete remission and did not need medication anymore. Low and behold they usually end up in the hospital or surgery because the disease was not being controlled and little by little the damage was still occuring until it reached a severe state. I was one of these people and it was horrble. Diet, excercise, maintenance meds, and a good support system are all needed to control this disease.
Posted 10/24/2010 7:24 AM (GMT 0)
You're body can be healed of anything if given the right tools. Certainly scar tissue. I am not here to debate, argue or defend myself and what I know of myself. I am simply passing on my experience.

and no I am not going to get a "second" option. I have two already. Scar tissue doesn't develop from scar tissue it develops from inflammation and disease....of which I no longer have.

My naturopath is skilled in naturpathy, ancient Chinese medicine, homeopathy and Auricular Medicine He'll use whatever he feels is the right tool for your healing.

Thank you all for your thoughts and opinions and good luck on your journeys!
Posted 10/24/2010 3:34 PM (GMT 0)
Google "proteolytic enzymes for scar tissue." Or "nattokinase for scar tissue." From what I've read scar tissue is composed of protein. Proteolytic enzymes break down undigested proteins in the body...and is especially good for breaking up blood clots. So you would have to check with your doctor if you are taking any kind of blood thinners.

There are alternative health practitioners who deal in enzyme therapy. If you are interested you can go to the "Theramedix" web site and find a practitioner in your area. The web site itself is very informative.

I do take proteolytic enzymes and have for a few years. They make me feel good and are good for inflammation in the body as well. I can't give you proof of what it does for me as I haven't had a colonoscopy in several years to make any comparisons. But I did used to have adhesions that had to be snipped away. I haven't had any adhesion problems (pain, tightness, pulling) in a long time now, so I will attribute it to the enzymes.

If nothing else, it's a good read and it's always good to be informed of options other than going under the knife...altho sometimes that's unavoidable.
Posted 10/25/2010 5:28 PM (GMT 0)
It def is possible to not have the typical symptoms and have crohns, right now my BM's are fine not really having any probs except for a little cramping here and there. My dr called me Friday after my blood work and asked if I was having really bad D and I said no why. Well my SED rate is 45 and my CRP is 48. Not having symptoms makes it even more important to have blood work and colonoscopies. Like you I look good on the outside just not inside!!
Posted 3/22/2016 8:15 PM (GMT 0)
This is a message for
Belleoftheball:
I read your post from 2010 and I was wondering how you are doing with your Crohn's now.

I would like to get the name and phone number of your naturopath in Vancouver if you still would recommend him or her.

My husband has similar symptoms to what you described in 2010 and we were wondering how important diet is and if there were ways to avoid Imuran.

Thanks
Posted 3/22/2016 9:59 PM (GMT 0)

I said...
But I'm not chained to a toilet with 10+ BMs a day. I have never been hospitalised and have never had surgery.

Ah, the good old days.
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