How has crohns changed for you as you age?

Be interested to see responses to this. Personally I believe the disease does progress ... At different rates obvs ... But it wears heavy on the body. Add to that the wear and tear of old age plus the impact of drugs ... I think it's a lucky few who end this disease at the same point they came in. But I'd loved to be proved wrong!

I've def declined over my Crohns life (16 yrs since diagnosis, 18 yrs since it started). But what has changed more than my disease is my attitude to my life. It's far from perfect, this disease has taken great swathes of my life away from me (years). So when I get a good spell, however brief... I live like there's no tomorrow... Because tomorrow it might be back. I'm not reckless but I try and do all the things that I want to.

So maybe there is an upside ... I appreciate the days I wake up and something isn't hurting. And Because of it I'll be darned if I'm going to lose the good days in a humdrum existence wishing life was more exciting. I've a much more 'just do it' attitude... And I hope my kids will say ... She certainly lived before she died.

It's been 25 years for me and I flared pretty much the same (moderate-severe) but mostly on the severe side ( according to a study done by Dr. Kevin Rioux, what they found was that the severity of each person's CD is predicted by their genetics). Humira finally put me in remission in 2014 but I had also developed IBS about 12 years into already having CD and I'm still battling the IBS (my GI and other research says that IBS can develop as a result of long moderate to severe CD often due to the stress factor the body-mind is going through from having CD flares for a long time that are tougher to get under control).

I'm now 49 and perimenopausal now and hoping my guts will just smarten up, or at best my CD will continue to stay in remission from here on out and my IBS hopefully gets better with the meditation and yoga I've been doing...the IBS (for me) has been an improvement compared to just having the CD (before IBS started and after IBS started, the two together was definite hell to say the least).

Of course each person's IBD or IBS is individual so I'm just sharing my experiences,

I'm 41 now and got diagnosed in 2000 when I was 25. For me, the Crohn's started off mildly but got inexorably worse until I had surgery in 2013. The surgery provided some relief, but left me with an ileostomy since I had virtually all of my colon removed and couldn't have a simple resection. I had a reversal last year, but it's been a bit of a disaster. The Crohn's came straight back after surgery; not as severely before my first surgery, but not as mildly as when I was diagnosed.

I am pretty sure that if I don't find a med which works, the same thing will eventually happen again - my Crohn's will just get worse and worse to the point I can't function. I actually don't feel a million miles off from that point already some days. However I do have the option of having my rectum removed and going back to an ileostomy - this time for good. If I do that, I expect it to provide relief for a while. But even if the Crohn's never came back for the rest of my life (not likely), I still will be suffering from the consequences of this disease.

The most obvious consequence is a permanent ileostomy of course, but there are others. I think losing my colon has made me more prone to fatigue: I tire so much more quickly than I used to. I also, like pb4, have IBS as a result of all the stuff I've been through. Pre Crohn's I had guts of cast iron: now they are more like porcelain china. They just don't really seem to want to deal with food at all and make a pig's ear of digestion.

Wish I could be more optimistic, but the last 16 years haven't given me much to be optimistic about! All I can really do now is try to accept the cards I've been dealt and do what I can within my limits.

I was dx 34 years ago at age 21, followed by 20 years of mild to no symptoms. (though probably had CD all my life). Then around 2002 I started to flare horribly and it's been a roller coaster ride ever since. I find my biggest issue is that it takes me so long to recover from even the smallest flareup or procedure. I've been on Entyvio since right before Easter of this year and cross my fingers it seems to be helping with rectal disease issues. That's my biggest problem right now. I also find that meds don't work as well -- jmho.

I do think though that my body is aged well beyond my 55 years due to this DD. A week at the beach with the grands proved that. I was exhausted every day but I wouldn't give up a minute of it! I talked DH into it because I told him I might not ever be able to do it again.

But hopefully all the strength we've gained dealing with this DD will carry us through as we age.

That sounds hopeful jdiane,

I know from research they say that each IBDers genetics dictates the severity of each one's disease which is why it's so individual for us all, but even though mine has been moderate-severe over the decades, I'm hopeful that with menopause it will quite down to nothing...being on Humira for the last 2 yrs has put it in remission for me but I'm still battling IBS.

So glad you're doing very well!!

I was diagnosed with Crohns in 1970, 46 years ago.

Back then there was hardly any meds, the first few decades there was Azulfidine, Pentasa, Asacol, Prednisone.

Here is my Crohns progression:

Years 1-10 - Bloating, pain, cramps, endless diarreah, malabsorption which caused a 30 pound weight loss.

Years 11-20 - The beginning of fistulas, progression down to the Cecum, Still lived with the fistulas and pain.

Years 21-30 - One of the fistulas was burrowing into my bladder, a life threatening condition that can cause Septicimia and death. Had the Cecum and descending colon removed. Another surgery was for a rectal fissure because of the endless diarreah.

Years 31-40 - Obstructions during the whole decade, spent many weeks at the hospital. The major obstruction was at the Anastomosis (the point of resection) which eventually resulted in lots of vomiting, pain, and loss of 60 pounds. Had another bowel resection removing 5 feet of intestine. This last surgery caused lots of bowel loss of control, Wearing diapers ever since, accidents progressing from once a week to 3 times a week. Have lots of techniques to detect the beginning of an accident, preventing the accident and cleanup procedures after the mess.

By now Humira came out in the market, had three good years of remission, eventually it stopped working, Doctor made the frequency to weekly, no improvement, developed antibodies. Switched to Entyvio which did absolutely nothing for me. Now I am on Azatrophine and Remicade and it is mildly working at double the dose at 10 mg($8800 per infusion six times a year). Was part of the clinical study of CNTO 1275, now Stelara, a tremendous success back in 2006. This is the drug to keep your eye on, soon to be approved by FDA for Crohns. Google UNITI 2 Stelara. There are some posts for this in this forum, do a search on it.

Years 40-46 (Now) Crohns travelled from the ileum, whole intestinal tract, the four sections of the colon, the rectum and now the anus, the most problematic of the all. This disease will travel to the end of this road since the anus is the final stop. I am lucky that it did not travel upwards.

This disease has lots of stops and starts, I have gotten better with no apparent cause, then worse with no change in my diet or stress. Now retired, I exercise with weights 6 times a week. This has improved my overall health and am thriving in the whole body which has made absorption better, it has mildly improved Crohns, but it is the use of the right biologic that has given me the best results.

The biggest lesson I have learned from all of this: Once you begin Obstructions and vomiting it is time to consider surgery, specially if it becomes month after month with no improvements in sight.

In the last 11 years, I've had four major flares (2005-2007, 2009-2010, 2012-2015, Aug 2016-). The first flare was pretty wretched. The second was not as bad but that was when I started to develop significant joint pain.

The third was the longest and worst overall (physically and mentally), partially complicated by concurrently developing chronic (near daily) migraines, contracting Lyme in 2014 (which took ~16 months to kick), developing Raynaud's, developing asthma, and having more than one year of constant chest pain. I don't know the extent to which these other issues are related to the Crohn's or the extent to which the Crohn's made my Lyme treatment so much harder.

I'm about a month into my current flare and it is still ramping up, but I certainly hope this is not a case of progressively getting worse over time. The joint pain has already ramped up significantly. I'm in a much better place emotionally to handle the physical issues now but it's never easy to deal with.

Strangely, three of my four flares have directly coincided with me adopting a healthier lifestyle (within a couple months of diet changes and increased exercise). Maybe my body just wants me to be lazy. :)

There was a post some time ago that someone heard that "Crohns burns itself out" as you get old.

Don't you believe it for a moment

There are some skin inflammations that do burn themselves out but absolutely not for Crohns. It is just as strong for me after all these years, the rest of the people in the thread said the same thing.

I'm 57, so I guess that's pretty old, but I've only been diagnosed with Crohn's since 2007, so about 9 years. I have remained in remission with the Crohn's since my re-section surgery in 2014, but I have struggled a great deal first with recurrent c.difficile, and now IBS, predominantly D.

I hate my gut issues and I'm disappointed that they didn't go away with the remission. But, ironically, I am probably a healthier person than I may have been otherwise without the Crohn's. Pre-Crohn's, I was overweight and ate too much junk food and didn't exercise enough. Now my weight is in the normal range, I have low blood pressure and cholesterol and I am much more active (since remission anyway) I never eat fast food and although I'm not following a specific diet, I try to eat healthy food in smaller portions. I have no idea how my disease will progress as I age. I do feel like the remission is "borrowed time." I never would have chosen Crohn's, and I still would prefer to be the old me, happily eating whatever I wanted, but I guess there is a teeny tiny silver lining there.

Hi hv2miracles, I am not over 45 but my knees are frequently one of the first things to signal I am having a flare. I find cold compresses help ease the joint aches until medications kick in.