How long do your flares last?

[f_else]

I am relatively new to the whole crohns experience, having only been diagnosed for about a year.
I had surgery about 10 months ago after a serious flare, and they removed my terminal ilieum. But since then I haven't actually gotten to a point where I have felt well. I still get stomach cramps when I don't eat food that agrees with me (which seems to include any fried foods and red meat and vegetables) or food that is at all fibrous. I have recently (about 2 months ago) started Imuran, but I still am not feeling great. I am always exhausted, have constant stomach aches etc.
My doctor said that if I was in remission I should be able to eat whatever I wanted. Is that true? Does that ever actually happen? Or is this semi-health as good as I can hope for? Is this remission because I am not bed-ridden? Yes I can get through the day (mostly), I can go to university and go out, but I don't feel at all like I used to. I don't feel well or energetic, and I am still having a lot of symptoms. If this is a flare then it has been going for about 11 months. I was just wondering if anyone could tell me truthfully whether this is as good as it gets for crohnies of if I should still be hoping for a remission in which I actually feel good.

 

[scottmyster]

HI F_else, you can go in remission. I was in remission for 15 wonderful years. I have had crohn's for 21 years but, recently it's flared up again. I haven't had surgery so i have no experience there.But, you still can't eat what you want and still not be affected by it.you should keep a diary of foods that agree with you and ones that don't and stick with the foods that do agree with you. You should stay away from fried foods and steak because they are hard to digest. With veggies it's a hit or miss, some will affect you some will not. I see you are on iron vitamins and B12 is it shots(injections) or vitamins. Because injections are better, that's what i take. but,that's me, i give myself B12 shots once every month. Also, maybe you should drink a nutritional drink every day like boost and ensure to keep your energy levels up. I also take a multi-vitamin like centrum or any good multi-vit. And if your on predisone for a while Vitamin D3 will help because from what i learned here in the forum, it's a bone robber. When your not in a flare your blood work should come back normal and your colonoscopy should come back normal. But, unfortunately this disease is unpredictable it can strike at any time and your into a flare again, that's the worst part about this disease. I hope this little bit of information helps and i hope you will get back to your normal self again without any pain or discomfort.best wishes:hang:

 

[Artificial]

My doctor said that if I was in remission I should be able to eat whatever I wanted. Is that true? Does that ever actually happen? Or is this semi-health as good as I can hope for? Is this remission because I am not bed-ridden? Yes I can get through the day (mostly),

Hello,

I've been wondering the same thing!

I've only been diagnosed since end of June but have had pain every single bloody day since December last year...one long big flare? who knows. I do have 'good days' but I still feel so rough all the time.

Hope you feel better soon

Rachel x

 

[DustyKat]

Hey hun,

Both of my children have had the same surgery as you and are in remission but it is different for both of them.

Sarah had an extensive resection 5 years ago that put her straight into remission but she has had residual effects from it. She has had issues with food over that time and has now settled on a vegan diet which seems to suit her very well. She says that she feels very well and energised on it. Red meat and fried foods are definitely two of the things that don't agree with her.
There is a second cousin in the family that also has ileal crohns, she has not required surgery but when I was last speaking with her she was saying that she can't tolerate red meat either.
All in all Sarah says she feels and 'normal' everyday, she has no pain or cramping.

Matt had a far more conservative resection in April and is also in remission. He has never been a kid that eats a wide range of foods but it would appear that nothing he eats disagrees with him. He has no daily pain or cramping and his energy levels seem to be what they were before he was diagnosed.

It generally takes at 3 months for Imuran to become fully therapeutic. What dose are you on?

Dusty. xxx

 

[chrisnsteph1022]

My first flare lasted almost a year, then I spent 6 years in remission. While in remission, I could eat anything I wanted with no problems. I had zero symptoms and felt completely normal. I've been flaring again for 10 months.

 

[macdonald88]

I know how you feel i had my op in may to remove part of my ileum and i'm still having alot of problems. I am very up and down, had cdiff, still have stomach cramps, loose motions, lack of energy, sickness, dizziness. When i saw my specialist last week he said the same, i should be alot further on after having the op and i'm going back in for further tests with pill cam etc in a few weeks a he thinks it may be spreading to the large bowel. I have only been diagnosed in march officially but have been off work since last september so im almost in my 13 month of the flare and don't feel considerably better I hope it gets better for you and they manage to get htings right for you xx

 

[f_else]

Hey guys,
Thanks so much for all your feedback.
@dustykat - I am currently just on 50mg a day, so its a pretty low dosage which I guess if increased might possibly help (but it is early days yet).
@chrisnsteph - thanks for your comment, it is nice to know that people do go through stages of being able to eat whatever they want, even if they don't last long

 

[Lacy Dawn]

I want to jump on this and say thanks as well! I was just diagnosed a few weeks ago so everything is REALLY new and REALLY scary! I have had symptoms since January and I'm trying to find out what hurts or not! I'm thinking fried foods is DEF not a friend of mine!!