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Long term prognosis for Crohn's sufferers

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Posted 4/21/2008 8:13 PM (GMT 0)
1.) Does Crohn's disease tend to get better or worse as people age? If it's an over-active immune system, does age slow it down, and the flare ups are less severe and more spread out? What has been your personal experience with this disease?

2.) What is remission with Crohn's? Do you have normal bowel movements when in remission, if you have had no resection surgeries? What about foods that you can tolerate - when in remission can you eat whatever you ate when things were still normal before Crohn's?

3.) If you have had surgery, what is remission? I guess based on how much of the small/large intestines are removed, you'll have some diarrhea, and maybe some limitation in what you can eat. After surgery, is lack of pain, and lack of blood in stool considered remission?

4.) What has been your personal experience with remission? How long have you stayed in remission?

5.) Does treating a flare up early result in better outcomes?

Thanks for your insight, and for sharing your personal experiences.

PV
Posted 4/21/2008 8:25 PM (GMT 0)
GREAT questions PV . . . . I'm new to Crohn's so I'll be watching for answer with you. I'm still so dumbstruck that I've just been reading other posts. Blessings!
Posted 4/21/2008 9:20 PM (GMT 0)
For many of us crohn's is a disease of cumulative insults. In some ways it has gotten more severe for me with age. I think the disease is still running its same insidious course, rarely flaring out of control mostly simmering away. Over time, that simmering has led to several crises -- obstructions, fistulas, abscesses, hemorrhaging etc.. I've suffered them all at one point or another --usually when the disease has reached end stage and my bowel is almost completely occluded by scar tissue. I have had three surgeries over 30 years and I am now unable to work.

So yes, I think treating the flare up early and aggressively leads to better outcomes. Because my disease wasn't of the fulminate type I tended to stoically accept symptoms a lot longer than I should have. When I was first diagnosed I didn't have access to the kinds of medications now being used to treat the disease.
Posted 4/21/2008 9:31 PM (GMT 0)
For me, i have had it since i was 15 and it's only got progressively more severe over the last 15 years....however, I don't consider myself a "sufferer". Just as those in a wheelchair often don't appreciate the term "disabled" I prefer to think of myself as a "Crohn's survivor" or a "patient with Crohn's"
Posted 4/21/2008 11:58 PM (GMT 0)
Wow. I was kinda hoping that normal lives were still a feasibility with crohn's - that it doesn't consistently get worse over time. I guess we'll need to brace for the future, and hope that we can bear it.

I'm still hoping that crohn's is a manageable illness and that the majority of folks have decent lives, without constant symptoms, and without constant surgeries, etc. Maybe it's not a reasonable hope, but I sure was hoping that's what I'd hear. I was also hoping that age didn't make Crohn's more severe. Oh well, I guess we'll just have to deal with the blows as they come.

PV
Posted 4/22/2008 12:20 AM (GMT 0)
Bear in mind that the people who come to HW tend to be at the more severe end of the Crohn's spectrum. We come here because we want support - the people who aren't suffering as much tend not to need that support so don't come here! And often HW members often become less active when they're feeling well, and come back here once their symptoms become more troublesome.
Posted 4/22/2008 12:26 AM (GMT 0)
Those were great questions PV.

I would really like to know what exactly remission is. When I take medicine, I feel a lot better, but if I miss a few doses, my symptoms start coming back. All of this is just so weird!

I look forward, as well, to any and all answers to these questions!
Posted 4/22/2008 12:27 AM (GMT 0)
do keep in mind its different for many people, some people might stay the same but have figured out how to cope with different areas. Some people find the right med after years and are better off now then 20 years ago. In my case a stress free job and a diet log of 8 years of researching how i react to what i eat (yes i am weird) has helped me back to where i am comfortable, so dont give in to a mediocre lifestyle,anything is possible u know :) good luck
Posted 4/22/2008 12:33 AM (GMT 0)
PV,

Crohn's is highly individual specific, everyone develops it differently, reacts to the meds differently, etc. On top of that, doctor's approaches, ergo results, can vary as well. Basically, the best person to answer those questions is your/her doctor.

That said, I was diagnosed a year ago although I've suffered symptoms for many years. In my case, the abdominal pain is almost non-existent yet I have extensive development of fistulae - enough to have the radiologist call for a second and a third opinion during my last BE as he couldn't figure out my anatomy. My real issue is the arthritis attacks that lay me out for a day or two at a time (but I seem to be responding well to meds) On a good day, I feel perfectly normal and enjoy playing guitar, racquetball and diving. I'm even trying to get medical clearance to become a private pilot. Crohn's may have cost me my military career, but now I'm a full-time student at the university. On bad days, I'm virtually chained to the bathroom or can't walk without a cane. Again, I'm new to treatment and we're still learning what I respond to and what I don't don't.

My point is, Crohn's will affect your life, yes. I have to make allowances for it, yes. But I enjoy my life nonetheless, the disease is a major part now but that's not all there is to my life. I'd be willing to stack my life up against several of my "healthy" friends' ...
Posted 4/22/2008 12:51 AM (GMT 0)
Hi PV,

I was diagnosed a little over a year ago and have been reading this forum ever since. I remember someone saying to keep in mind that people who tend to post here are having immediate problems. So this forum may be showing worst-case situations on a regular basis. Reading people's histories, some have had long periods without symptoms (years, some decades). Others appear to always have symptoms. CD is very individual.

I think it takes a little while to come to an understanding of what it means to have a chronic illness. There is no majic cure pill. The disease will be present at some level for the rest of your life. In the case of CD, damage over time can make healing more difficult and more serious surgeries may eventually be necessary (e.g., ostomies). But while you are taking in and processing the reality of all of this, please keep in mind that everyone looses abilty over time as we age. Our bodies slowly decline after our early twenties. Since getting CD, I am more acutely aware of the myth of perfect health perpetuated by companies on TV. Everyone looks so happy, healthy, and wrinkle free! As I look around me, I see people dealing with various serious problems. In fact, I can't think of anyone who is perfectly healthy. One good outcome of having CD is I am much more sensitive to people in need and empathetic to those who are suffering. Serious and chronic illnesses give us every reason to seriously evaluate the purpose of our lives and our relationship with our creator. For me, it all comes down to how we choose to handle our infirmities and how we grow over our lives. People with CD can have great, meaningful lives! We just need to stay focused on what is really important.

Take care.

Takes care.
Posted 4/22/2008 1:07 AM (GMT 0)
I've only been diagnosed for a year, but the year has gone from really bad to the best I've felt all year. I can exercise, walk (not run-yet) with my kids, go to their school functions, go camping with my family (with a personal potty), work full time and have my own business. I do run into obstacles, but doesn't everyone? If anything, CD has slowed me down a bit but I can stop to "see" now. My glass was half empty last year, but this year it's half full.

Stay well,
laura
Posted 4/22/2008 1:51 AM (GMT 0)
I was diagnosed about 12 years ago now, and I was already the wrong side of 40. So with that in mind, these disease does not
seem to improve with age.

My life from the time of Dx, and surgeries has gone downhill. Some problems are from not really achieving remission, and other
problems that have spun off from crohns and some treatments.

BUT.. as it's been said before, we are all very different, and handle things very differently. I truly believe in when you are feeling
pretty good, then grab life with both hands & enjoy.....
Posted 4/22/2008 2:01 AM (GMT 0)
I think normal lives are possible with Crohn's. I lead a pretty normal life. I had about 15 bad years there, but for the last two I have been really quite good. I am 47 now (yikes, how did that happen?) I used to think it would never get better, but I am now in my first ever remission for nearly two years now. I have been raising my kids, working, exercising and going out with friends. I think those are all pretty normal things. I still have to be careful with my diet and I realize that all good things may one day come to an end. But I am hopeful that good things will continue.
Posted 4/22/2008 3:08 AM (GMT 0)
My experience is that the older I get the more problems arise. While my first surgery 30 years ago stopped the severe abdominal pains, the resulting chronic diarrhea has not been pleasant. The last surgery I had back in 2005 left me feeling worse than ever, though. I've lost a lot of weight and mostly feel horrible. Very tired, not much appetite, it's a battle.  I had no choice other than to have surgery, but it helped one problem and created more of a different type. I'm 66, and I can tell you it hasn't been easy.  Good luck to you, though.

Posted 4/22/2008 3:13 AM (GMT 0)

PV said...
1.) Does Crohn's disease tend to get better or worse as people age? If it's an over-active immune system, does age slow it down, and the flare ups are less severe and more spread out? What has been your personal experience with this disease?
Age realy doesn't have a lot to do wiith.Just for most people are in there forties the researchers before they even start showing sign of having it..I was 22 when I found out I had it.

2.) What is remission with Crohn's? Do you have normal bowel movements when in remission, if you have had no resection surgeries? What about foods that you can tolerate - when in remission can you eat whatever you ate when things were still normal before Crohn's?
Food will effect every chrons person differently.I can not have fruit at all in my diet.Or it will cause my small intestine to swell shut.But that won't happen to every one.Keep a record of what you eat and how it reacts with you.on the bathroom I don't know.I had the surgery and go about 5 to 7 times a day..

3.) If you have had surgery, what is remission? I guess based on how much of the small/large intestines are removed, you'll have some diarrhea, and maybe some limitation in what you can eat. After surgery, is lack of pain, and lack of blood in stool considered remission?
Remission is just how you and your chrons is going on and how your stomach reacts to what you eat. 9 out of 10 people who have the surgery will have perment diarrhea.But they do have pills to help.

4.) What has been your personal experience with remission? How long have you stayed in remission?
I have been in remission for 6 yrs now.I have to watch what I eat and how it makes me feel.I go to the bathroom all the time.But I am not in as much pain as I used to be.I know when I eat it will stay down.I am happy to be in remission even if it sounds bad.

5.) Does treating a flare up early result in better outcomes?
Yes it does..Becouse you know what to do sooner..

Thanks for your insight, and for sharing your personal experiences.

PV

Posted 4/22/2008 10:36 AM (GMT 0)
I have had CD for the last 20 years,from age 14. Those first 4-5 years were the hardest ,was in and out of hospital regularly, almost had my whole colon removed at one time, things were quite bad.
Luckily surgery was never an option for me in my treatment as my DR considered it a last resort measure because of the severity of the disease (whole large bowel as well as 30cm terminal ilium),I still remember his words (if we operate we take it all out).When i left the teenage years my relapses became less frequent, 3 relapses in my 20's another one 4 years ago(i consider a relapse to be anytime i need to go on steroids). Though to be honest i tend to have a lot of symptoms even when in remission(mainly the dreaded D and also lack of control),these symptoms really put a damper on your confidence,and most days don't want to leave the house.
The longest i was in remission was about 5-6 years, and getting treatment sooner is always better than later.
I think that as you have the disease over a long period the chances of developing complications are greater
(fistula,abcess,strictures)etc. Everybodies disease is different, my personal view is that there are numerous causes for CD in different people,the DR's just conveniently bunch them together under the name CD( when a DR sees inflammation in your gut it's either CD or UC ,and many times they get that wrong too)
Good luck, God bless
Posted 4/22/2008 6:11 PM (GMT 0)
1.) For me it started out horrible, because I was young, had no dx, no idea what was wrong and no weapons to fight with. After surgery at 15(temp. illestomy), and 16(remove illestomy), I had a really great run in my early 20's. Almost as if I had no illness at all, and was able to go on and come off pred with ease for flares.

As I have gotten older, sad to say, it has gotten worse. Lots of scar tissue, lots of complications with other organs, and stuck on pred.

2.) Remission to me is when I have a day that is not totally full of bathroom trips, pain, and I am able to exercise. Oooh I so love weight training, and cardio training, it's what I live for.

3.) Surgery at 15, and 16. Parts of Large and Small intestines removed. Due to this, when I eat, I can expect that it will come out the other end in 4-6 hours.

4.) It is more along the lines of a few days of less symptoms, then a few days of more problems.

5.) Absolutely, early is best for me, the longer I wait, the longer it will take me to get well.

The best part of NOW vs. THEN is knowledge, being more familiar with my own body, and having meds to fight back with.

Take Care

:)
Posted 4/22/2008 6:21 PM (GMT 0)
For the majority, treating a flare as soon as it starts can help with retaining a quicker and sometimes longer remission...

Researchers have discovered at least 9 different gene clusters that contribute to the development of IBD and define the severity and behavior of the disease over time...based on this it's believed that gentics of the disease can play a huge roll in the severity and type of CD each patient may have to deal with, some are very severe but maybe never get fistulas or strictures, some are mild or moderate but have dealings with fistulas or strictures, ect.

IBD (CD or UC) is overall a very individualistic disease from person to person and sometimes even from flare to flare, getting older does not guarantee an easier time with flares or vice-versa. Some people may flare once and then never again for decades, some flare constantly.

Eating healthy (no processed foods/beverages, fast-foods, caffeine, animal fats, is highly recommended flaring or not...it's likely possible that eating unhealthy foods/beverages can cause a relaps for those in remission or make it harder for people to gain remission...exercise on a regular basis is also key, not only does it aid with normal bowel function but it can steer off issues like osteo and such.

:)
Posted 4/22/2008 6:28 PM (GMT 0)
There is a subset of Crohns patients -- the estimates I have seen are about one in five -- for whom the disease is pretty stable and level over time, with no real worsening of symptoms or complications throughout life. Another subset -- I'm going to guess a third or so -- have cumulative damage and complications including obstructive or fistulizing disease that requires one or mroe surgeries. The rest, it seems, tend to wax and wane, with periods of flares and remissions that may or may not be controlled by various medications. Overall, as many posters have suggested, it's reeally impossibe to relate your future course to anyone else's. But I think it is safe to say that it's not really the disease that gets worse, it's the complications if and when they occur. The bottom line is that most Crohns patients can and do live relatively normal lives most of the time, keeping in mind that there are some things that require adaptions. In the end we almost all die of something else . . . Crohns is not fatal, with the very rare exception of some catastrophic complication that you probably won't get anyway. One of the wisest things i can remember seeing somewhere was that the healthiest people are often those with incurable chronic illnesses, because we are more atuuned to our health and bodies and take better care of ourselves. 

Posted 4/25/2008 8:59 PM (GMT 0)
I think the best answer is each person is different. I was diagnosed in 1973, age 16. I have been in remission for the majority of that time until 3 years ago. However the disease was extremly active for a good portionof the time while I was asymptematic. Doctor couldn't explain it and we made no changes in medication at the time (asacol). I ate everything then and have had no resections. I know I've been estremely lucky. I've been on a low roughage diet for the past three years waitng for things to improve and while the flair up has lasted longer than ever, the bathroom type symptoms have been less severe. For the most part just bloating. The smal intestine has narrowed significantly at the ileum. Newest symptom is arthritis pain in the slbows and knees. Along the way I've had a fistula and a kidney stone, both more prevalent amongst crohn sufferers. The long and the short is, you don't know what will happen.

currently humira asacol folic acid b12
Posted 4/25/2008 9:55 PM (GMT 0)
1.) Does Crohn's disease tend to get better or worse as people age? If it's an over-active immune system, does age slow it down, and the flare ups are less severe and more spread out? What has been your personal experience with this disease?

2.) What is remission with Crohn's? Do you have normal bowel movements when in remission, if you have had no resection surgeries? What about foods that you can tolerate - when in remission can you eat whatever you ate when things were still normal before Crohn's?

3.) If you have had surgery, what is remission? I guess based on how much of the small/large intestines are removed, you'll have some diarrhea, and maybe some limitation in what you can eat. After surgery, is lack of pain, and lack of blood in stool considered remission?

4.) What has been your personal experience with remission? How long have you stayed in remission?

5.) Does treating a flare up early result in better outcomes?

Thanks for your insight, and for sharing your personal experiences.

PV

Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff
Currently in hospital for past month
Canasa, Lialda, Vancomycin, Colestipol, Elavil, IV Solumedrol 120mgs, Remicade (1st infusion April 10, 2008), FloraQ, FloraStor, Morphine Time release for pain

1.) I think as we age we watch everything we do more carefully in regard to CD. I am 43 years old now. It's been over a decade since I was diagnosed and only a year since my last resection. I got really scared this last time because I got so very sick and so very thin and frail. Since the surgery I found information that has turned this around toward a course for better living. I don't eat dairy products except for aged cheddar. The last couple days I quit eating wheat/gluten. (But I had a wonderful spaghetti dinner using rice pasta the other night.) So it is fair to say, as we get older we gain insight into what works and doesn't work each one of us.

2.) Remission for me (and I have about 3 feet of small intestine missing now) is to have normal bowel movements again. I had diarrhea so bad it got me up during the night too. I know I am onto something when I have removed wheat/gluten from my diet and in 2 days my bowel movements are solid again.

3.) I also think remission means the swelling and pain goes away. Things seem to settle down. No running to the bathroom. Clinically, I think it means so Crohn's activity.

4.) Now I look for ways to improve my overall health. I take Intramax (a liquid vitamin/mineral supplement) that is 100% carbon bond organic. It begins to absorb in the mouth so I no longer suffer from malnutrition like I once did. I watch what I eat and drink VERY carefully. I am still working out what I can have that does me well and what I can't have that causes my body harm. My longest remission was from Jan 1999 (1st sm. bowel resection - terminal ileum) until April 2004 when I had the balloon procedure.

5.) Without a single doubt!!!! The quicker you catch it, the quicker you can end it and get things back in balance. My last flare up was Sunday so this is fresh in my mind. We went to a wedding reception where I ate cake, cookies, crackers and little finger sandwiches. Later that afternoon I was bloated and miserable. By that night I was in the bathroom with foamy diarrhea. I began drinking "Refresh" tea (made by Tazo; ingredients: peppermint, spearmint, and tarragon). I took wheat/gluten out of my diet. This morning I am back to normal, i.e. solid stool.

You are welcome and I hope everything works out well for you.
Posted 5/10/2008 4:15 AM (GMT 0)
I haven't looked at this board much at all since surgery in 2003. I was diagnosed in 1991 when I was 20. My disease was limited to the terminal illeum and was never really in remission, just kind of low level discomfort that was controlled with low dose steroids (my dad is a doc, so he was an huge asset to me over the years as many GI docs tried to wean me from my steroids, 12mg every other day, despite how badly I did off of them) I have to say that I've been very lucky in that my Crohn's was/is very easy compared to the majority I read about here and the ones I've known personally.

For me I more or less got use to the lower right quadrant pain and the occasional flair ups that cause nausea and high fever until I got an abscess in 2003 and ended up having to have a resection. Given the limited involvement, (about 6 inches was removed) surgery was the best thing I've done. Five years now without a problem, just take B12 shots since the surgery. According to my dad the fist few months of your disease is a good indicator as to the long term outcome and the long term crohn's patients he's had (he's an oncologist and hematologist) got much better as they aged into their retirement years.
Posted 5/10/2008 11:52 AM (GMT 0)
Welcome back ATM . . . I'm glad you've been feeling better since your resection!! Wow . . . 5 years!! The last sentence of your post was very interesting!! Are you feeling ok now? Most folks don't head back to the forum unless there are problems . . . just wondered. Blessings!
Posted 5/13/2008 2:38 AM (GMT 0)
1.) Does Crohn's disease tend to get better or worse as people age? If it's an over-active immune system, does age slow it down, and the flare ups are less severe and more spread out? What has been your personal experience with this disease?

I have found that as I have aged that my CD has taken many turns. Firstly I have taken almost all of the medications that I can take. After being in the testing for Remicade I had a wonderful 5 years of remission. (I got into testing through my arthritis and not my CD) Then I had a mjor flare up that ended with me having to have a resection done earlier this year.

2.) What is remission with Crohn's? Do you have normal bowel movements when in remission, if you have had no resection surgeries? What about foods that you can tolerate - when in remission can you eat whatever you ate when things were still normal before Crohn's?

It is different for eveyone. I was able to eat what ever I wanted for a while. When my last flare up started last year I couldn't eat all and was placed on TPN. As for my bowel movements they were all over the map except watery. Some were normal; some were loss; they varried in colour from brown to green. The colour was the only way that I could tell if I was digesting the food that I ate properly.
3.) If you have had surgery, what is remission? I guess based on how much of the small/large intestines are removed, you'll have some diarrhea, and maybe some limitation in what you can eat. After surgery, is lack of pain, and lack of blood in stool considered remission?


I had a resection done earlier this year and still have the naughin pain on a daily basis. Right now I am dealing with my Ankylosying Spondylitis (arthirtis) and Uveitis. These are precursors to CD. So I now just sit and wait for the bomb to drop. As for the foods that I can eat...well lets just say that right now I am not eating and back on liquid diet because of nausea. I have never had blood in my stool due to my CD being in the terminal Ileum.

4.) What has been your personal experience with remission? How long have you stayed in remission?

It was great to be in remission but have to say that I did watch what I ate and did not eat any of bad foods being, nuts, corn, popcorn, salads and high fiber foods. That doesn't mean that everyone has to eat this way. Everyone is differnt. Food is not the reason for flare up as much as the food we eat when in flare will effect the outcome. As stess doesn't bring on a flare up but it can enhance one greatly.

5.) Does treating a flare up early result in better outcomes?

I would say yes it does. Though like me others that say I will watch it and see what happens. Over the years I have done both seen a doc right away and waited. Both are correct if you are able to make sure that you don't dehydrate yourself.
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