Does CD symptoms get better as you get older??

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LBJ
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Date Joined May 2005
Total Posts : 511
   Posted 7/25/2008 2:15 PM (GMT -7)   
I thought CD symptoms get worse each time you flare or as you get older???
My GI just told me today that as I get older my CD symptoms or flares should actually
get better.  He said the first time you get hit with it is usually the worst.
(Which holds true in my case)  And each time after that should be better than
the last. 
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 20mg tapering
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin
No Surgeries
 


gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 7/25/2008 2:50 PM (GMT -7)   
Hi Did your GI include menapause in that because it hit me hard when I went threw menapause .I sure hope that's the case though. I will say one thing about being older I have more determinaton now or was it the pain ,I think a little of both. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


SydneyJo
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Date Joined Mar 2006
Total Posts : 1354
   Posted 7/25/2008 5:47 PM (GMT -7)   
Gee I hope thats true, it will give us something to look forward to in old age. Jo

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/25/2008 5:54 PM (GMT -7)   
My rhuemy says the same about most of the AI diseases-there is a huge caveat though. Each flare does (potentially) damage. That damage does not heal itself or go away so the actual immune attacks may get weaker or further apart but the cummulative damage may be increasing and you may feel worse.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 7/25/2008 6:05 PM (GMT -7)   
It's likely individual for everyone, I got sick in my early 20's and I'm now in my 40's and it has NOT gotten better in my opinion just a little different...there are 9 different gene clusters that were found which seem to dictate the behavior of IBD over time which is why some are more prone to be severe and some mild or moderate.

I've never heard according to research that with age it get's better.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


potty pooper
Regular Member


Date Joined Dec 2006
Total Posts : 375
   Posted 7/25/2008 6:29 PM (GMT -7)   

I don't find that to be true in my case.  I was diagnosed 43 years ago, at age 19.  I found that I had longer remissions when I was younger and healed much faster after my first two resections, the second of which was 18 years ago.

I had my third resection (and gallbladder removal at the same time) in April and am still not feeling as well as I had hoped I would at this point.  I am also much more tired than I was at a younger age, when I was raising my three daughters.  And going through menapause doesn't help the situation.

But, like most things with this DD, everyone has a different experience.  My wish is that a cure will come soon, so that all you younger people (and everyone for that matter) will have many Chrohn's-free years.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/26/2008 9:16 AM (GMT -7)   
I have been diagnosed for 33 years. I am not so sure it has gotten better as I have aged, its just changed. I had two big flares in the 1st four years after diagnosis and then enjoyed a 20 year remission. Then during the past 8 years I have had two resections and because of those resections I now have to closely watch my diet and have much much more joint issues/pain as well as alot more fatigue. I did have a GI tell me after my first resection that Crohns can just burn out. I think most of my problems now are because of the surgeries. I don't digest/process food the same anymore. My current GI calls them mechanical problems caused by the surgeries. So maybe my Crohns has gotten better, but I have a new set of problems that I am dealing with. Hope that helps.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Panayo
Regular Member


Date Joined Jan 2003
Total Posts : 246
   Posted 7/26/2008 3:02 PM (GMT -7)   
LBJ -
 
          It is my opinion that the reasons some of us get better with Crohn's as we get older is that after years and years of this
     disease we have learned to some extent how to handle it.
 
          In my case, 53 years with severe Crohn's, 9 operations including six major resections (total loss of intestines - 40%) I finally, after a lot of research decided that the main thing I had to control was inflammation.  I did this by deciding never to go off of daily maintenance drugs again.  I also learned to tell when something wasn't right with my body and what to do about it.  It takes years and years of research and study, but all of a sudden, something comes up and you know how to handle it.
 
          Even though we are all basically different in Crohn's, each of us that has had it a long time has developed some kind of system to overcome it or to slow the process down.  So the main thing I can tell you is Know as much about your disease as you possibly can.  It will make a huge difference later.
 
          My first bout with Crohn's was not by a long shot my worst unless you consider that doctors did not know anything about Crohn's in the fifties.  My actual diagnosis for the first resection was "Ileitis" and each resection after that was more severe than the first.
 
     Kasper87 - I don't really believe that foods of anykind can cause inflammation.  I will eat anything anybody puts in front of me if it looks good and taste good.  Having said that, I will also tell you that if you have a blockage, then any food you eat, fish or anythingelse can cause problems.  One of the main things that causes inflammation in the intestines if you have, really have Chron's will be the little small collections of inflammatory cells that typically surround and try to destroy bacteria and other foreign bodies that are called "Granulomas" oh, there are other ways of getting inflammation but Granulomas come and go, sometimes they even go to sleep for years but if you really have crohn's, they are there whether you or your doctor see them or not during a biopsy.
 
          I don't usually join in on post and replys because you modern Cronnees use drugs and injections that were unheard of in my days, so I really wouldn't know what I was talking about but I usually log in once or twice a week just to see what's going on.
when your my age you don't try to fix something that's working and for me it's Prednisone 5mg a day, sometimes 10 mgs every other day for a while just to keep my adrenal glands confused so they won't stop working and asulfidine each morning - a B-12 shot once a month and a slofi-Iron tablet every other day. and I'm 80 years old since Feb 6 of this year.
 
Respectfully 

bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 7/26/2008 3:55 PM (GMT -7)   
Panayo,

I just finished reading your post with intrest - I've heard so little from people who've had this DD for so long, and I'm so happy you gave us your insight. It sounds like you're a treasure trove of knowledge for information after living with this disease for 53 years. I encourage you to give us your advise more often.

Thank you!

Bev

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 7/26/2008 5:00 PM (GMT -7)   
Panayo,

I to found your post very interesting. I have had crohn's for 28 years and I like to read postings and talk with people whom have had the disease for as long or longer than I have. We all can learn from your experience and knowledge and I ask you to please join in more often. Even after all these years, prednisone is still my miracle drug to for adrenal glands as well as crohn's. Take care of yourself, and I look forward to reading more of your posts.

Julia

LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 7/26/2008 5:16 PM (GMT -7)   
Panayo said...
LBJ -
 
          It is my opinion that the reasons some of us get better with Crohn's as we get older is that after years and years of this
     disease we have learned to some extent how to handle it.
 
          In my case, 53 years with severe Crohn's, 9 operations including six major resections (total loss of intestines - 40%) I finally, after a lot of research decided that the main thing I had to control was inflammation.  I did this by deciding never to go off of daily maintenance drugs again.  I also learned to tell when something wasn't right with my body and what to do about it.  It takes years and years of research and study, but all of a sudden, something comes up and you know how to handle it.
 
          Even though we are all basically different in Crohn's, each of us that has had it a long time has developed some kind of system to overcome it or to slow the process down.  So the main thing I can tell you is Know as much about your disease as you possibly can.  It will make a huge difference later.
 
          My first bout with Crohn's was not by a long shot my worst unless you consider that doctors did not know anything about Crohn's in the fifties.  My actual diagnosis for the first resection was "Ileitis" and each resection after that was more severe than the first.
 
     Kasper87 - I don't really believe that foods of anykind can cause inflammation.  I will eat anything anybody puts in front of me if it looks good and taste good.  Having said that, I will also tell you that if you have a blockage, then any food you eat, fish or anythingelse can cause problems.  One of the main things that causes inflammation in the intestines if you have, really have Chron's will be the little small collections of inflammatory cells that typically surround and try to destroy bacteria and other foreign bodies that are called "Granulomas" oh, there are other ways of getting inflammation but Granulomas come and go, sometimes they even go to sleep for years but if you really have crohn's, they are there whether you or your doctor see them or not during a biopsy.
 
          I don't usually join in on post and replys because you modern Cronnees use drugs and injections that were unheard of in my days, so I really wouldn't know what I was talking about but I usually log in once or twice a week just to see what's going on.
when your my age you don't try to fix something that's working and for me it's Prednisone 5mg a day, sometimes 10 mgs every other day for a while just to keep my adrenal glands confused so they won't stop working and asulfidine each morning - a B-12 shot once a month and a slofi-Iron tablet every other day. and I'm 80 years old since Feb 6 of this year.
 
Respectfully 

Panayo-

Thank you so much for posting in my thread.  I feel so honored!! LOL   Seriously though, I reall appreciate your advice and would love to see more post from you and your experiences.  I honor those that have had this disease for many years and who have gone through so much more than even I have.  My Crohn's is so mild compared to many others that I am really trying to learn all I can and to even figure out my own Crohn's issues.  I'm 36 years young so I have long ways to go with this disease. 

Thanks again for your advice.  And please post more often.    Happy belated 80th Birthday!!!  :-)   


Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 20mg tapering
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin
No Surgeries
 


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 7/26/2008 5:18 PM (GMT -7)   
gachrons said...
Hi Did your GI include menapause in that because it hit me hard when I went threw menapause .I sure hope that's the case though. I will say one thing about being older I have more determinaton now or was it the pain ,I think a little of both. lol gail

Hi gachrons-  Ya know, I am not ready for menapause just yet so I don't know that he was including that in there.  But thank you for bringing it up because I am going to ask him at my next visit.
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 20mg tapering
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin
No Surgeries
 


Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 7/26/2008 5:18 PM (GMT -7)   
I agree, hearing about Crohn's from someone who's dealt with it for so long is uplifting, especially when that someone seems to have gotten a handle on it and wrestled it into submission, without the benefit of much of the more modern treatments.
20, Male, diagnosed over Christmas Break of my Junior year in High School. BEST CHRISTMAS EVAR LOL

(not really)


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 7/26/2008 5:21 PM (GMT -7)   
Thank you everyone for sharing your experiences with me. I understand it being different with everyone because we are definitely all different.
I just thought it was interesting that my GI told me that and wondered what others experienced with it.
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 20mg tapering
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin
No Surgeries
 


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/27/2008 7:48 AM (GMT -7)   
Thanks, Panayo! It is so nice to hear from someone who has had CD for such a long time.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 7/27/2008 9:44 AM (GMT -7)   
My GI has told me the same, and it has proven tobe right in my case. Had initial symptoms at 19, diagnised at 33 after a bad GI bleed, and had periodic flares for some years. Then around my mid-40s it seemed to diminish in intensity. I now have occasionaly mini-flares of a day or so, but no longer ones and my last scope in December showed minimal disease activity. I think some people may be different -- especially those with stricturing or fistulizing disease -- but there seems to be some evidence that a lot of CD patients do expwerience a leveling or decline in symptoms asthey age.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 7/27/2008 9:51 AM (GMT -7)   
In some ways I'm worse being older compard to when I was younger, I have more issues during my periods and more issues with holding it in getting to the toilet in time.

I've been flaring to some degree mostly moderate-severe over my entire 17 yrs of having it...so yes, it is indvidualistic...like pretty much everything eles with this DD.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 7/27/2008 3:01 PM (GMT -7)   
I feel like a faker compared to you guys. But my history may be of some use to somebody. I had a history of digestive problems about 10 -15 years ago and went to a naturopath who did an elimination diet (basically start from a couple of foods and add some gradually to see what is not tolerated). She also had me take some food sensitivity tests which showed wheat and dairy as well as a number of other foods as being the problem. This seemed to work somewhat and I went for about 5 - 6 years using the diet alone. Then I had some acid reflux problems and went to my doctor who put me on a proton pump blocker. I was on that for a while (about 1 - 2 years), but I did not feel that masking the problem was the solution, so I went off it and began logging food reactions. My wife has been extremely patient and by eliminating everything that was a problem - I learned to tell what the triggers were - I eliminated the reflux. Then, recently, I had a hassle with a neighbor and the stress brought out the latent problem. I had the diarrhea, fatigue, nausea and sinus problems that are normally a sign of Crohn's. I went to the doctor again and had a bunch of tests done which were inconclusive. Fortunately, I had been scheduled for a gastroscopy to check that the reflux really was under control when I went to the doc for my checkup. The fortunate part is that the Internist suggested that I get a colonoscopy at the same time as the gastroscopy. That showed up the problem, but before that, I was prescribed some antibiotics in case it was really sinusitis causing the problem. I took them for 8 days and then quit before the colonoscopy fast (they were not doing anything anyway). After the scope, I got some good probiotics and began using them immediately. That alone seemed to help immensely. Then I got the scope results and the doctor wanted me to get a Celiac test. I told her that I had not used wheat for a number of years, so she told me to re-introduce it to trigger any possible sensitivity. I was using a wheat/bran cereal that only lasted about 3 days before the pain in the gut told me that it had to go. Then I was using a plain white bread that was not too awful, but there was a slight knot in the gut where the cereal had caused the pain. Once I had the test and quit the wheat, the problem vanished. I have to say that it is not just wheat that I avoid. I have now eliminated all gluten sources as well as a few personally identified triggers. I have not heard anything about the test, so I assume it was negative for Celiac (two weeks now). I'm 57 now and it looks like I have dodged a bullet. I think that there may be individuals that can't benefit from this approach since Crohn's is so individual, but I have seen research that supports the diet connection.

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 7/28/2008 8:44 AM (GMT -7)   

I have to sit on the "each case is different" side of the room on this one.

I am just a babe a in the woods as far as experience...I have only been suffereing with this disease for about 10 years...but I know I had symptoms for several years before that......I eased into it...

I never said anything to anyone until things got so bad I could not ignore them or tough them out.  At first I was diagnosed as a mild case...now I am considered moderate and my doctor tells me that in the years to come I will probably face surgery...something I have avoided for now.   Each flare has been worse than the last and each one has lasted longer than the one before....

I did not get diagnosed with CD until I was in my 40's and that in itself is supposed to be fairly uncommon.  So who knows what the future holds?


dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
currently on Low Dose Netroxene (started Jan. 19, 2007)...against Dr's wishes, he was pushing for Remicade.  Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose two shots every other week.
Crohns is currently active and has been since April of 2005
51 yrs old


dorri
Veteran Member


Date Joined Feb 2003
Total Posts : 1876
   Posted 7/28/2008 10:18 AM (GMT -7)   
Hi LBJ & Panayo, thanks you are an inspiration as always.
 
I've heard both,  with one saying it does get better with age and also heard that it gets worse by my GI, so let me tell you my experience after having crohns for 29 years. 
When this disease first started and in the years to follow I was suffering terribly, but maybe some of the suffering was caused not only by inflammatory pain but also by obstruction pain. 
 Being a woman it did esculate sometimes around the peri menopausal phase and shortly after this I had a resection done.  This operation stopped the rolling around on the floor pain TG but left me with chronic diarrhea which I would rather have in comparrison to that awful pain of days gone by.
 
Is the inflammation still going on?   Yes, a CT scan months months after surgery has shown that it was back, but these last 5 years have been much much better than in the beginning. 
 
Because I didn't do well with the newer drugs, I, like Panayo am controlling mine with 5 mg of prednisone not only for the CD but also for a sleeping adrenal gland.  Since I've been using this drug for years and have developed osteoporosis they are very cautious about increasing the dosage over 5 mg.    So many a time do I feel I need more because I feel inflamed yet have to suffer it out on the 5 mg.


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