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Crohn's Disease
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Posted 10/27/2010 3:55 PM (GMT 0)
I had a colonoscopy done a month ago. The doctor saw inflammation and took five samples along the intestine. The biopsys showed moderate chronic inflammation. But I do not have any symptoms. 

My question is whether this diagnosis is sufficient to assure that I do have the illness. If yes, is this desease progressive, meaning eventually I will get the symptoms. Lastly, does one without symptoms start treatment, diet, etc? I will see the doctor in a few weeks, but would like to get your opinion. Thank you, Erwin

Posted 10/27/2010 4:05 PM (GMT 0)
I would expect your doctor to put you on some type of meds for 'maintenance' even without symptoms. Allowing the disease to go untreated is, in my opinion and personal experience, asking for trouble.
Posted 10/27/2010 4:20 PM (GMT 0)
Believe the doctor. Trust me, just believe the doctor.

My symptoms were so mild when I first got diagnosed 10 years ago, I didn't really believe it was Crohn's. I really thought the doctor had got it wrong and that it would just go away. ("It" being chronic but mild diarrhoea, consisting of 1-2 BMs a day.) It never went away. It stayed on an even keel for about 5 years (diarrhoea increased to 2-3x a day and got a bit more unpleasant, but aside from that I felt well in myself still). But much of the last 5 years have been awful, and the past year the worst of all.

I never took a mainenance med, 'cos I was rather unlucky and couldn't tolerate any of the 5-ASA meds (eg Asacol, Pentasa, etc.). And it took years for the docs to move up to a stronger med, azathioprine, which also didn't work. All that time the Crohn's was wrecking my digestive tract but because it was doing it so slowly, I didn't realise it. I was always able to rationalise away everything that happened to me, eg fevers, fatigue, etc. I thought that Crohn's could only be severe if you ended up in a hospital; that's simply not the case.

Please, if you find a maintenance med which works and subsequent tests show it's working, stay on that med even if you feel 100% well. Meds don't guarantee avoidance of flare-ups, but without treatment of any kind, it's pretty much a surefire certainty that one day your Crohn's will get worse: either quickly or slowly. (Depends on the type, but people who worsen quickly seem to present severely from the beginning. Not always, but commonly.)

Post Edited (NiceCupOfTea) : 10/27/2010 10:23:38 AM (GMT-6)

Posted 10/27/2010 4:26 PM (GMT 0)

My GI said he's seen people that never had any gut symptoms, but only found out they had Crohn's after having arthritis or other eye/skin/etc. problems that Crohnie's can have.  So, you can still have it without any normal symptoms, and I don't know how likely you are to get more symptoms as time goes on...I guess it depends on whether or not you are being treated properly.  I started having arthritis problems when I was about 21, then they went away for a few years and then came back and have been getting worse and worse, even though my Crohn's is supposed to be in remission (that's if I even really have Crohn's now, if you read my other posts today).     

I too think you should be on some kind of maintenance drugs.  If you are able to eat anything without any problems, I say go for it.  If foods start to give you problems, keep a food diary and figure out what to eliminate from your diet.  I've gone through times where I could barely eat anything and other times where I could eat almost anything I wanted (although I still try to be somewhat healthy).  I don't see a reason to go on a strict diet if you aren't having any problems, but there may be others on here who would disagree with me.    

Posted 10/27/2010 4:42 PM (GMT 0)
Thank you for the responses. It really helps.
I notice that most people here follow the SCD diet. I took a look at it and my first impression is that it is not that bad. Bread, which I love, would be just about the only thing that would bother me. I assume no one here would have any disagreements with going towards it, since it seems to be a very healthy diet. I did not see anything about coffee or soy drink. Are those two also not allowed??
Posted 10/27/2010 6:04 PM (GMT 0)
Its more the minority here who follow the SCD diet. I have had this darn disease nearly 35 years and I find a low residue diet works best for "me". Good luck!
Posted 10/27/2010 7:54 PM (GMT 0)
I get symptoms so I am one of the lucky(?) ones. By keeping a food diary my symptoms help me to determine which foods I need to avoid, such as shellfish and high fructose corn syrup (soda and most candy). Symptoms also give me feedback on which supplements are most effective. For me they are probiotics, psyllium, vitamin D, and boswellia.

I probably have ulcerative colitis rather than Crohn’s (doctors not sure), so the worst case scenario is that I will need surgery in the future to cure me permanently. In the meantime I seem to be able to control my UC and remain in remission with diet and supplements. I can count on my guardian angel (or guardian demon LOL) to guide me on the straight path when I am good and batter me with symptoms and flares when I stray away from my diet.
Posted 10/27/2010 11:23 PM (GMT 0)
I took a look at it and my first impression is that it is not that bad

*raises eyebrow* Let's just say my first impression was that it was that bad... <_<

But I don't mean to put you off. If you feel it's relatively easy to follow, that's actually good. It will make it incredibly easier to begin. I have always resisted it, because I never wanted to give up the things I liked: bread, milk, things with sugar (not honey) in them, etc. And for several years it really did seem like it made no difference what I ate. I no longer believe that anymore: I think it does. And unfortunately refined carbohydrates and fatty, sugary snacks are the biggest culprits. A large plate of mashed potato would do me in big time. I love mashed potato and used to eat it at least a few times a week, but nowadays I have slashed my potato intake. Unfortunately I can't resist eating other things which I know are bad for me. I'm still also at the experimental stage to some extent - I can't make up my mind about milk and yoghurt.

Long-term CDers do very often end up developing food intolerances. Unfortunately, the food intolerances vary from person to person, so general lessons can't be extrapolated from a single person's experience. For example mashed potatoes do me no favours, but a lot of CDers live on mashed potato and other food of its ilk - a "low residue" diet, as Nanners mentioned. I'm fairly certain now that I react least of all to protein-based food: eggs, chicken, etc. One thing that should be mentioned about a low-residue diet: it can become a medical necessity if you should ever develop a stricture (narrowing) bad enough for food (fibrous food in particular) to get stuck. That's called an obstruction and that's not good. However, I suspect you are a long way off from strictures. There's an excellent chance you will never develop any if your Crohn's is mild and is kept under wraps with meds, diet, or a combination of both.

PS: Not sure about coffee or soy, but somebody else will tell you! Pretty sure that caffeine isn't allowed, but not sure about decaffeinated coffee.
Posted 10/28/2010 1:45 AM (GMT 0)
I never knew I had Crohn's until there was enough damage in my small intestines that I started getting blockages. Once diagnosed, some other symptoms made sense as being connected, like unexpected weight loss (45 lbs in a few months) and exhaustion.

You can definitely have active Crohn's and not realize it until significant damage has been done, depending on where it is active.
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