Inflammation with no symptoms

I worry every day that although I am not without much symptoms when in remission, the inflammation is still there. They found inflammation on a pill cam once when I had ZERO symptoms, so what happens then? If you have no symptons but have inflammation, what happens then? Is it like a ticking time bomb?

I always thought the longer you have inflammation with or without symptoms means a higher chance of Cancer? My IBD nurse said that 25% of the population will have inflammation if scoped but they have no symptoms so aren't treated. Is that true?

Like Nanners, I spent a very good 10 years with no treatment. I had self diagnosed at the age of 13 (my Mom had CD so I was pretty sure what I was looking at). Basically I was treated like a crazy kid, told not to drink milk and sent on my way. I stopped drinking milk and adjusted my diet so that I really didn't have any symptoms for the next 10 years. When the S*%T hit the fan later, I couldn't understand what was wrong with my body, all the doctors were mystified, because of course, I never mentioned a family history of IBD. It had already been ruled out! I spent the next 11 years in and out of the hospital trying to undue the damage that CD had done on a microscopic level. I had 3 resections in just over 6 years and spent a good deal of my children's young life on the couch. The right combination of maintenance medication can keep the inflammation to a minimum and lessen the damage that scar tissue does. It has given me back the ability to do what I want. I will never go with out maintenance medication again. I'm sure that there will always be some level of disease activity going on, but whatever I can do to minimize that, I will do.

A gynecologist once explained to me that a woman could have terrible symptoms and only a mild yeast infection--or mild to no symptoms and a much more severe yeast infection. I know that inflammation is like that. I've had minimal symptoms and demonstrated a footlong area of intestinal narrowing--and I've had terrifying symptoms, but had absolutely nothing show up on the SBFT.

That's part of the reason that I always wince when people report that they consume nuts, popcorn, berries, or alcohol and have no appreciable symptoms the next day. CD is sneaky. You can be doing internal damage that you don't feel or know about, until it's too late.

One good thing to remember: inflammation can be just that (in which case it can actually go away, as mine has done on several occasions) or it can be scar tissue, in which case it's permanent. If you take maintenance meds and eat carefully, you may be able to avoid surgery. That's the strongest incentive I know for following a sensible CD diet!

So I had surgery and have had the colon taken out and feel fair so far. Hoping for great someday soon. I am not any medications since surgery except pain stuff once in a while. No meds worked for me that I tried (except the four rounds of pregnizone) and they were weaker by the treatment. SO you think I should go o meds? Only one I haven't had is Humira and I was allergic to remicade so am afraid of Humira. Ideas?

Question for those that went several years with no meds, then had strictures.

During those several years of no meds, did you have any c-scopes? If you did, was there no narrowing shown by those? Were there any warning signs that you can see now (with the power of hindsight)?

This disease is so tricky. The only way we can tell if a maintenance med like Asacol is doing any good is to have repeated scopes to check for inflammation levels. I'm not currently on a maintenance med, but plan to go on one if I can find one that works. My symptoms are minimal with my current diet, and I'm going to book a scope in a couple of months to see if this diet is really reducing inflammation. Bleh, c-scopes.

Nope had no scopes nothing, like I said I was being stubborn trying to ignore my Crohns. I had no symptoms, nothing. I was young and was one of those folks that I see here quite frequently, that said to myself I feel fine, I don't need meds. I learned my lesson in a very traumatic and painful manner and will always take my meds from now on. Lesson learned!

My sister sounds like many of you guys in the early years. I have crohn's and had to be hospitalized due to a bad flare that made a beliver out of me.My sister on the other hand tells me i'm not going to take all those drugs like you do. I told her if you ever get as ill as i did you;ll change your mind. So she going thru life thinking no damage is going on i sure hope it doesen't hit her like it did me.

I was diagnosed with crohn's only because during regular blood work, I keep showing mild anemia. then they did a stool sample and found blood which lead to colonooscopy. that was 12 years ago. took asacol then pentasa and off and on iron pills. I had no other symptoms. I ate and drank what i wanted-wife said how could i have crohn's with all the hot,spicy foods i ate! then during a rutine colonoscopy-it had been 3 years since the last one- Dr said the disease had spread dramatically and i now was in the group who would need surgery in the the next 3 years. i still had no symptoms. he said i had dramatic narrowing and a blockage would occur. he put me on cimzia. took those shot for a year- still not symtom. When i say none I mean none-like no "D", no pains no nothing. I was a once a day guy.. then it hit me one night. severe pains and vomitting. went to er on dr's advice. had blockage. treated with pred and released 6 days later. Now on Remicade to see if that helps. Have also meet with surgeon to get prepared. So, yes you can have this and have no symptoms. then is just takes over. The interesting thing is now that i have had the blockage, i now have more "normal" symptoms like many o fyou have. I have sharp pains at times in lower stomach. I have "d" and frequent bowel movements ever few days (6 or 7 a day- i know i am still lucky). I have about one day a week where i am nausiated, dizzy, feel bad, pains just awful then next day i am better. this disease is nasty...

It is a bit hard to sort out the chance of bowel cancer. There is a statistically higher chance of getting bowel cancer when you have Crohn's. The question is, does this result from the disease or the treatment? Several of the immune suppressors have a risk of cancer associated with their use. I don't know of any study done that controls for drug-induced cancers - although there easily could be one out there somewhere. I have seen some studies that suggest that there is only a slight increase and that may have been for results excluding drug-induced cancers.

Octobergirl I personally feel that meds and diet should be considered complimentary of eachother. We have a chronic and incurable disease that needs to be treated all the time in my book. I now am maintained solely by Asacol and live on a low residue diet and this combination works well for me.

I had blood work done over the years when I was med free and they always came back normal. Blood work can be very deceiving. I have seen many folks on this forum be so sick and yet their bloods come back normal.

And to Trigirl, maybe since you have now had surgery one of the milder meds will work for you instead of the stronger drugs.

Hugs
Gail*Nanners*

Age, polyps and progress with healing all determine how often you would need a c-scope. Once you are diagnosed and under control, more frequent scopes are not needed unless you showed polyps or precancerous lesions. This all depends on your disease though - you can have a turn for the worse and that may need investigation. Scopes can cause irritation and make matters worse, so there should be some reason for more frequent checks.

Nuts and berries (seeds) are really more of a problem for diverticulitis, although sometimes the coarse texture of nuts can irritate an already inflamed gut. If you have diverticulitis, avoid them, otherwise it may be OK - only you can tell for sure if they are a problem.

As for the maintenance meds, your doctor usually gives you the choice of taking them or not. The people who may not need maintenance meds are those who have not had the disease for a long time, have the disease confined to the large intestine (Crohn's colitis) and have not had surgery. Even those may benefit from meds since most of the meds used are reported to produce a degree of reduction to antibodies in their system. The report on activated T cell apoptosis caused by many Crohn's meds can be viewed here (free registration required for viewing):
http://gut.bmj.com/cgi/content/full/53/11/1556

Hi Keeper, I was posting when you posted, so I didn't see your post previous to this. I'm even more confused about the maintenance meds, because I am just recently diagnosed, my disease is confined to my large intestine, and I have not had surgery. But, my GI said I had moderate Crohn's in my colon, but severe extra intestinal symptoms...maybe that's why he's so adamant about meds.