Inflammation with no symptoms

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LondonRed
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Date Joined Oct 2007
Total Posts : 1184
   Posted 11/29/2009 2:39 AM (GMT -7)   
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?

Diagnosis Oct 07: Mild Crohn's Colitis. By the grace of God currently in remission. Current Medication: 1000mg Pentasa Tablets x 2 a day. VSL#3. Manuka Honey.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/29/2009 8:18 AM (GMT -7)   
I once had a 20 year remission where I took "no meds" and just went on with my life. I figured the whole time no symptoms, no worrying about Crohns. Well that remission ended abruptly with an emergency resection. Thats why I always recommend that everyone always be on some type of maintanence med. I see you are on Pentasa. I am solely maintained on Asacol. I have had little flares but have been able to stop then right away with a quick 10 day burst of Pred. So yes you can have inflammation and not know it. During my 20 year remission "without meds" I had Crohns doing its damage on a microscopic level that would heal on its own and then create scar tissue that eventually completely obstructed for me, but I never knew it was going on till the surgery was needed. So I will say it again, ALWAYS take some type of medication.

Good luck,
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 11/29/2009 8:37 AM (GMT -7)   
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.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 11/29/2009 10:02 AM (GMT -7)   
Yup, yup. Me too! Like Nanners I went 20 years "in remission" w/low grade inflammation doing its insidious damage. No way would I not take a "maintenance" med now. I am currently in "symptomatic remission" (no symptoms, but proven inflammation process going on. We adjusted my Imuran and Pentasa accordingly the first few times. However, Dr May always said the medication and dosage that got you into remission was the medication and dosage needed to keep you in remission. (Steroids not being included in that advice - those you do want to stay off of as much as possible).
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


nawlinscate
Veteran Member


Date Joined Jan 2007
Total Posts : 656
   Posted 11/29/2009 10:25 AM (GMT -7)   
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!

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 11/29/2009 3:53 PM (GMT -7)   
I'm like everyone else, i took my disease for granted by not taking my meds everyday and then completly giving up on the meds. Then it happened! Sept 08 I was rushed to ER for an obstruction and put on Pred. I had a colonoscopy and a test (I can't remeber the name) where you drink the Barium and they take X-rays. Anyhow those tests told my doctor that surgery was the next option. I had surgery in Feb. 09 and the surgeon was amazed at how I was getting any food to pass through the stictured area. I now take all my meds and for the most part feel really good. I do worry that the Crohns is still doing damage even though I'm taking my meds. My worst fear is this monster coming back. I am going to have a colonscopy sometime in December and I pray that there is no disease in my intestines. If there is I'm no longer afraid to proceed with the big gun meds like Remicade or Humira.
My only advise is to take maint. meds and if your doctor says no! I would demand the meds or seek out another doctor.
Good Luck!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 11/29/2009 7:25 PM (GMT -7)   
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?
This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
H.W. Longfellow
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
Trying


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 11/29/2009 7:47 PM (GMT -7)   
Yup, what Nanners said. Mine was before I was diagnosed, but symptom free I ended up with severe strictures. Also a believer in maintenance meds here (except I'm off of them just for this pregnancy). You won't need the hardcore meds to stay in remission once you have it (usually).
Mom to a healthy Pentasa baby and pregnant with #2. 5+ years remission, woo hoo!


j_web
Regular Member


Date Joined Nov 2009
Total Posts : 205
   Posted 11/29/2009 8:29 PM (GMT -7)   
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.
CD since July 2007 - prenatal vitamins, vitamin D, fish oil, flax oil, Flora-Q probiotics, pescetarian healing diet
DM T1 since January 2008 - Apidra via OmniPod


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 11/29/2009 10:58 PM (GMT -7)   

My warning signs were narrowed stool and occasional vomitting with a bowel movement. This led me to get a check-up, had a gastroscopy, sigmoidoscopy, then colonoscopy at which time they admitted me to the hospital, CT SCan, SBFT and had a diagnosis of Crohn's all within a months time. I was 55 years old at the time, first colonoscopy.

They found a stricture in my colon which after more tests in the following year was confirmed scar tissue so obviously this had been building for many years.

I had a resection in May. Never had pain, diarrhea, fatique or other usual symptoms before being diagnosed or since surgery. Have not had a cold or flu for years, no history of Crohn's so came as quite a shock but after knowing so much more about the disease, consider myself very fortunate.

Am on methotrexate, ultrasound planned for next April and colonoscopy six months after that.


57 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
Started weekly methotrexate injections 09/22/08.
Lap assisted sigmoidoscopy done May 11/2009


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/30/2009 8:09 AM (GMT -7)   
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!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 11/30/2009 8:18 AM (GMT -7)   
Nope. No colonoscopies. Or any other Crohn's detection tests. They didn't have colonoscopes back then for one thing. For another even after they did have them I had no symptoms and hadn't had any for so long why would we have checked? Besides which my Crohn's was beyond where a scope could reach. The proximal end of the terminal ileum. Even after the resection of the proximal end of the TI I still have 18 inches beyond the ileocecal valve to the resection site. No scope can reach that far into the TI.

When my Crohn's returned the symptoms were mild enough that the locals tended to brush them off. It was two years after the symptoms returned that I opted to return to Mayo to investigate and Mayo's SBFT found the partial obstruction at the anastomosis and some mild inflammation closer to the ICV. The local SBFT had only found the distension above the anastomosis which they suggested MIGHT be a Meckle's diverticulum.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


auntkay
Veteran Member


Date Joined Apr 2004
Total Posts : 1199
   Posted 11/30/2009 10:38 AM (GMT -7)   
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.

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/30/2009 3:18 PM (GMT -7)   
My current reading indicates that the really damaging problems are due to the overgrowth of fat cells within the abdominal cavity wrapping around the intestines. One source said that this fat was a characteristic feature that was part of the original description of Crohn's disease. That source also said that this fat was found at the sites of 100% of strictures and surgeries. The fat grows over time and this growth is associated with inflammation. It also leaks inflammatory molecules into the abdominal cavity and I am guessing that it might be responsible for inflammation of nearby sites like the liver and the sacroileal joint and maybe the kidneys and the urogenital tracts. The use of maintenance meds may slow the spread of this "mesenteric" fat, but that has not been confirmed by my reading yet. For more on this, see:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1458819/

mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 380
   Posted 11/30/2009 7:25 PM (GMT -7)   
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...

EruditePaul
Regular Member


Date Joined Jan 2006
Total Posts : 266
   Posted 12/1/2009 1:54 PM (GMT -7)   

If you have active inflammarion with no symptoms, your blood work would still show elevated level of ESR and/or CRP, right?

Also, nobody has answered the origional question of correlation between long term active inflammation and cancer.  It appears, however, that most long term Crohn's patients do not have colon or small bowel cancers, even with active inflammation? 


Diagnosed with CD in 1994;

In 1994 I was treated with Pentasa of no avail.  Have being treated with Chinese herbal medicines for over 10 years.


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 12/1/2009 2:27 PM (GMT -7)   
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
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 12/1/2009 2:37 PM (GMT -7)   
I'm on meds right now, Remicade and methotrexate, but my GI said he didn't think I'd need another colonoscopy for 8 years. I had symptoms when I was diagnosed, but I didn't have any pain,really. Should I be worried and request more frequent colonoscopies?

Also, really, I shouldn't be eating nuts or berries? I thought once you were healed, it was OK to eat those things.

I was pretty adamant about getting off meds right after my diagnosis, but now I'm not so sure. What do you guys feel about the people that say they stick to a diet, say SCD or Maker's Diet, and then they get scoped later and the doctor tells them there are no signs of Crohn's? Or with Jordan Rubin, do you think he's just a time bomb waiting to happen? I've never read anything that said he got scoped after his initial diagnosis. I'm wondering if he ever has symptoms. Do you think these people are really just going to pay for it later? I just don't understand how they can later be scoped and show no symptoms with no meds.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/1/2009 2:54 PM (GMT -7)   
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*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

nawlinscate
Veteran Member


Date Joined Jan 2007
Total Posts : 656
   Posted 12/1/2009 2:56 PM (GMT -7)   
Crohn's is a chronic disease. It isn't cured by surgery, and it inevitably recurs. The name of the game is to keep it from recurring for as long as you possibly can (ten years between strictures is way better than six months between strictures, say).

How can you keep it from recurring?

(1) You can just be incredibly lucky--but that's kinda out of your hands.

(2) You can take some kind of medication, designed to minimize the inflammation that eventually leads to scar tissue, blockages, and more surgery.

(3) You can modify your diet to avoid those foods that irritate the lining of your digestive tract, thereby encouraging inflammation that eventually leads to scar tissue, blockages, and more surgery.

(4) You can make yourself healthier by learning to cope with stressors (or to remove them from you life), eating more sensibly (however you want to define that), and dealing aggressively with big CD flares.

I've never understood doctors who blithely tell you that you don't need meds and you can now eat whatever you want after surgery. Virtually everyone I know who's done that has eventually wound up in big trouble.

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 12/1/2009 3:05 PM (GMT -7)   
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

Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 12/1/2009 3:05 PM (GMT -7)   
Nanners, I value your opinion on meds and diet being complimentary to each other. I guess I just wish I were on a less scary med. Maybe one day...

What I don't understand is when I was at my GI's office a couple weeks ago, I was reading one of the pamphlets they had. I can't remember what it's called, maybe something like Digestive Wellness. Anyways, one of the articles was about a female newscaster who was diagnosed with Crohn's when she was in her teens, and she eventually ended up having to get surgery. Later or in the article, it said that she did not require medication for her Crohn's. But the article also stated that she had to make sure there was always a bathroom nearby...So, what I don't understand is if she is still having symptoms like needing to either go to the bathroom frequently or urgently, why don't they think she needs medication? Also, it made me feel like I was getting conflicting information, because my GI is very pro medication for life, and yet I read in the literature in his office that some people don't require meds. It's very confusing to me.

Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 12/1/2009 3:10 PM (GMT -7)   
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.

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 12/2/2009 11:15 PM (GMT -7)   
Depending on what your extraintestinal symptoms are, some Crohn's meds help better than others. I seem to recall that sulphasalazine works better on joint problems than some others, but I'm not sure what is good for other problems. Heck, my GI didn't even ask me about extraintestinal symptoms, so I'm not going back to him again...
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