Does IBD mostly get worse as time progresses?
- Thread starter Naomi1
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I'm afraid I don't know. As you see in my signature, I was diagnosed 20 years ago. It's been quite a ride for me so far. I've had years when I've done well and years when I've been in a flare. But, I'm just one person and each can be different. So, the best I can say is to just do the best you can and we'll be here for you along the way.
My dad has had distal UC since he was 35 and he is now 62. He has been very well and symptom free, often forgetting his medication (asacol) for more than 10 years. His colonoscopies have all shown he is in remission in this timeframe also. In his case things have got a lot easier and milder. But I know the opposite has happened for others so it is quite individual.
There are some cases of mild IBD, perhaps 10-15%, that kind of idle along year after year, producing little or no symptoms, without really getting any worse. They often remain undiagnosed for decades, Some probably never get diagnosed at all. Although that is impossible to quantify, since by definition they never get detected and counted.
However, the catch is that it's impossible to know in advance whether your particular case is part of the small minority that won't get worse or the large majority that will. Thus, the thinking is to treat them all with some form of therapy or other to try to keep them from progressing to the really bad complications that so many of us unfortunately know only too well.
However, the catch is that it's impossible to know in advance whether your particular case is part of the small minority that won't get worse or the large majority that will. Thus, the thinking is to treat them all with some form of therapy or other to try to keep them from progressing to the really bad complications that so many of us unfortunately know only too well.
Research suggests that those with Crohns and disease isolated in the colon have a better prognosis. Being diagnosed after 40 also seems to be suggestive of a milder disease.
There are quite a few people on this forum who have been in remission for years and years and years on maintenance meds.
We also have more choices and better doctors today, so what was true 10-15 years ago is not necessarily true today (with regards to prognosis).
If you are in remission now and on maintenance meds and doing well, then be happy! Keep all your appointments to monitor your disease and be positive. You might be like some on this forum that have been in remission for more than 10 years (or for the rest of your life!)
There are quite a few people on this forum who have been in remission for years and years and years on maintenance meds.
We also have more choices and better doctors today, so what was true 10-15 years ago is not necessarily true today (with regards to prognosis).
If you are in remission now and on maintenance meds and doing well, then be happy! Keep all your appointments to monitor your disease and be positive. You might be like some on this forum that have been in remission for more than 10 years (or for the rest of your life!)
Have you found this to be the case, embe?
It did for me. At first my IBD condition was a once a week problem. That began around the age of 15. Then by around 19 it was a daily problem. Then in my later 20s the stomach problem became crippling.
Here of late though, I've found a diet that has helped my colitis. The stomach is improved, and energy levels are up. Energy levels are way up today, which is an odd "problem" for me to have, trying to figure out how to use this new found energy. Hopefully the stomach improvements will continue for me. And if that is the case I'm certain I'll find good use for more improved energetic levels.
Here of late though, I've found a diet that has helped my colitis. The stomach is improved, and energy levels are up. Energy levels are way up today, which is an odd "problem" for me to have, trying to figure out how to use this new found energy. Hopefully the stomach improvements will continue for me. And if that is the case I'm certain I'll find good use for more improved energetic levels.
Glad you are feeling so well lately! What diet have you found works for you?
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I hope the best for you.
Thanks! I've been working on a wild fish diet. Basically it is a limited diet where I eat the same foods all the time. Salmon is the main protein item eaten. It took time to become feeling better, about 2 months. I also experienced a few stumbles with some foods in the diet I suspect being problem makers. For sure trouble makers include pumpkins and cantaloupe. Both make me violently ill. I'm also concerned with olives and olive oil. If olive is a trouble maker it's slight, but that might be the key I've been looking for - a food less obvious.
So overall I'm on my way. The gut is improved but not perfect. Energy levels are elevated more frequently. My appearance is healthier, to be expected with digestion improved.
I'll be adding more foods to my diet in the near future. With luck I'll have few new trouble makers to contend with.
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I think its only natural to worry about what the future may hold, especially for people who have had multiple surgeries with the prospect of more. Certainly something that weighs on my mind.
I was diagnosed @ 26 after having Crohns for 2 yrs & by the time it was diagnosed I was very ill. I hope thats not a harbinger!!
Certainly Inflectra is giving me a smoother ride nowadays but still I get the "bad days" that sometimes go on for 3-4 days before settling.
And when I've been @ my very lowest ebb I honestly couldn't imagine being elderly with it.
But thats all for the future, new drugs coming online soon apparently here in UK. There appears to have been biggish strides in the last 20 yrs or so. The days of just being on Sulphasalazine & Predniosolone appear to be long gone thankfully.
Rgds
Grant
I was diagnosed @ 26 after having Crohns for 2 yrs & by the time it was diagnosed I was very ill. I hope thats not a harbinger!!
Certainly Inflectra is giving me a smoother ride nowadays but still I get the "bad days" that sometimes go on for 3-4 days before settling.
And when I've been @ my very lowest ebb I honestly couldn't imagine being elderly with it.
But thats all for the future, new drugs coming online soon apparently here in UK. There appears to have been biggish strides in the last 20 yrs or so. The days of just being on Sulphasalazine & Predniosolone appear to be long gone thankfully.
Rgds
Grant
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It is natural to have some anxiety over IBD, especially with its unpredictable future. I have had CD since 2005. Mine has been mild and after some relapses I learned how to control it through diet and not medicine. I figured out the trigger foods and eliminated them, fortunately not many. My colonoscopy last year was so unremarkable that my GI scheduled my next one out to ten years instead of five. But CD could develop new food triggers. We just have to be observant and learn to isolate those triggers.
Certainly as we age and our bodies get weaker, IBD could rear its ugly head.
Certainly as we age and our bodies get weaker, IBD could rear its ugly head.
Prepare for the worst and hope for best! I think, ultimately, we need to be optimistic that attained remission will last indefinitely while making sure we do not skip on doctor appointments or routine tests (as annoying as they are) so that if things do take a turn to the worse we are ready to tackle it.
I spent quite a few days researching factors that would lead to a poor prognosis and almost every paper I have read has concluded that while there is a correlation between some factors and a worsening of the disease, no particular individual risk factor can predict disease outcome. So there's no reason to stress out too much over those. Be vigilant but be positive because there *are* people with IBD who barely feel the burden of this diagnosis.
I spent quite a few days researching factors that would lead to a poor prognosis and almost every paper I have read has concluded that while there is a correlation between some factors and a worsening of the disease, no particular individual risk factor can predict disease outcome. So there's no reason to stress out too much over those. Be vigilant but be positive because there *are* people with IBD who barely feel the burden of this diagnosis.
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It's probably different for every case, but the potential for become worse is always more likley then to progressively becoming better so either are possible. If you learn as much as you can about following a good diet(read breaking the vicious cycle), maybe add a few supplements(vit d, e and c), and take meds regularly, avoid things that could make you worse, you can handle this. And better treatments are always on the way explore fecal microbiota transplants and learn about the progress of this treatment and possible cure in the link below!
Thanks very much for this. Yes, I hold out great hope for FMT. I will get that book you mentioned. I've been following John Hunter's book and have just finished a 3 week course of the elemental diet. Luckily it has put me into remission again. Wish there were an easier route though!
Good point about stress. I really agree with that. I like your idea of thinking remission will last indefinitely. Why not?! Better than always being in fear of the next flare. Thanks for your help.
Wow! That's great news to hear you've been so well. Maybe as we get older, our immune systems will get so weak they won't be bothered to attack us
Maybe as we get older, our immune systems will get so weak they won't be bothered to attack us
I like your thinking.
I had about 18 years after being told it was just IBS until it did get worse, and then I think that was to do with developing a stricture rather than the disease becoming more active.
