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My first year living with Crohns Disease...

Hey guys, I hope you are all doing well!

I'm a total newbie in this forum, or any forum to be honest...

A little about me... I was diagnosed with Crohns in June 2013, and now one year later I have finally realized that it is VITAL to change my lifestyle & diet in order to become somewhat better.

Since I was diagnosed, I have had my mother & my sister constantly looking up different things online about 'What Not To Eat' & 'Diets For Crohns Sufferers'...and when they would tell me about it I just wouldn't listen. I didn't mean to come across as ungrateful or anything as I always appreciate the help of other people, I just didn't believe that changing my diet could be more effective than taking medication... but these past few days have made me think that maybe I WAS WRONG!

I came out of hospital yesterday after 4 days of being treated from the worst flare up I've ever had. I was having Steroids through an IV, Steroid enemas, Salofalk enemas, etc etc etc. Once I finally got back home last night, I just sat there and thought to myself about what kind of life I am in for with Crohns, & that the only thing I am relying on to help me through this is my medication...

So today is the start of a new journey for me, I am finally taking action to change my complete diet, and then in time my lifestyle also! Before I became ill I was racing Motocross regularly, and once I get myself fit & healthy again that will be my main goal.

I hope you have enjoyed reading my post...if it sucked then I'm sorry, it is only my first one! Haha.

I would love to meet other people with Crohns, as I don't really know anybody else. It would be good to have new friends to talk to & swap advice and help with each other.

Hit me up & connect with me! :)

All the best everybody!
 

valleysangel92

Moderator
Staff member
Hello :) welcome to the forum!

I'm sorry you've had such a rough time of it lately :( . What treatment have they discharged you on?

I understand what you mean. To be honest, diet is something that is very different for everyone with crohns. For me, I have to limit the amount of fruit and veg that I eat and be careful with sugary drinks. There are some people who find that specific diets such as the specific carbohydrate diet will work well for them, others find that it makes no difference. So it's all about trial and error. We have a great diet and fitness section here which you might like to check out .

You'll find lot of supportive people here who will be only to glad to try and help you out so if you have any questions then please just ask away
 
Hey, thanks for your reply :)

I was discharged from hospital with Prednisolone tablets, Prednisolone Enema, Salofalk Enema, Mesalazine & some Calcium tablets...which I'm sure is great for short term, but I'm not so sure about long term, as the times I have had flare ups previously have usually been when I come to the end of my Prednisolone cycle and have to stop taking them.

Yeah I know what you mean, I've read so much lately about different people having their own diets, so I think we've all just got to use trial & error in finding out what we can & can't eat/drink. I'm going to spend some time looking through the Diet & Fitness section tonight! :)

I've lost about 2 stone in the past 16 months, so I have been looking for anything to help with weight gain in Crohns, like supplements etc, do you know of anything?

Thanks for your help, I really appreciate it :)
 

valleysangel92

Moderator
Staff member
Yeah you're right, that's fine short term, but it sounds like you need to be on something long term. The mesalazines are the mildest of the crohns medications and although they can work for some, they often aren't enough to keep crohns at bay. This because mesalazines only work on the first layers of the intestines and don't penetrate all the way through meaning the deeper layers can be vulnerable to further damage. If you find that you are flaring again when you drop your prednisolone then it might be worth talking to your consultant about trying one of the harder hitting medications.

That sounds like a good plan :) you might find keeping a symptom diary helpful too so you can see if there are any obvious patterns between what you eat/drink and the severity of your symptoms.

I lost a lot of weight myself and my GP prescribed me drinks called ensure to help get extra calories into me. I had to see a dietian first to check I was ok to have them since I have too much calcium in my blood but that wasn't an issue. They are gluten free as well so if you have issues with gluten then they are still ok for you.

You can also get milkshake powders called build-up, I think they're stocked in boots. They aren't as high calorie but they can still be a help and have lots of nutrients in them which will help maintain your levels while you sort out your diet. I find these are much nicer tasting than the medical shakes and can be a great addition.

I'm glad I could help. If you ever need someone to talk to or want to discuss something more privately then feel free to send me a message :) .
 
Yeah exactly, This will be my 4th cycle on the Preds, each time I come off them I go ill again within 2 or 3 days. The Mesalazine has never been effective to be honest, the only thing that helped me was the Preds. I was living in Essex when I got diagnosed and they we're going to test me for that Aza drug, but I moved back to Cumbria to be closer to my family, and my consultant up here has refused to even test me for it, so I'm a bit annoyed with that.

Ahh yeah, I've heard of Ensure, I just didn't know they we're good for people with Crohns lol. I will definitely look at getting some of those to test them! :) Thank you!

How's everything going with you at the moment?
 

valleysangel92

Moderator
Staff member
Hmmm.. I'd say to ask your consultant again, since your current treatment obviously isn't doing enough, if he refuses again then maybe it's time to ask for a second opinion. Some doctors really don't listen to patients well enough.

Yeah they are good for people with crohns, they are prescription only though I think so you'll need to ask your GP.

Things are mostly good thankyou, I think I'm heading for a flare at the moment, I've got all my old symptoms but I've been med free since surgery almost a year ago. I'm going to be seeing my specialist in just over a week so I'm hoping to get some maintainence medication. Thanks for asking :) .
 
Hi keefe,

I hope you don't mind if I join this thread. I too am a newbie to this forum and am trying to figure things out. I had crohns surgery in 2001 and was crohns free until a month ago.

It sounds like you're someone in good shape. I am wondering what kind of foods you ate before this flare up? I know we all struggle with what to eat or not!

I do hope you feel better soon and that you find an understanding and reliable doctor to help you through this!:hug:
 
Sorry for the late reply guys!!

Been feeling super weird these past 2 days since getting out of hospital, my legs feel like jelly constantly, every time I stand up it feels like I've just ran 5 miles, probably from all the IV Steroids they gave me (or I'm hoping that's what it is)

Oh no, that's not good! In the year you've been med free, have you had any other flare ups at all? I hope you feel back to normal soon & your flare up is a quick passing one! :)

No problem Susan, thank you for your input. I know what it's like being a newbie here :) Oh wow! Have you not had any flare ups or anything since 2001?? Do you know what caused it to come back?

I'm not entirely sure, I've been quite ill since 2008, but I was only diagnosed with Crohns in 2013, so I've not been very fit for quite a few years now. I have always ate relatively healthy, eat fruit & veg every day, always drink water or orange squash, never drink fizzy drinks as I don't even like them, however I do eat sweets & biscuits like a little kid haha, so I've completely cut those out of my diet from now on!

What foods have you found are bad for you?

& thank you, I wish you all the best too :)
 
Hi keefe, I hope you feel better soon.

As for me, yes this is my only flare since 2001. I hope it will be my last too. I have no idea what brought it on. I have been eating the same way for the past 13 years. I mainly eat healthy. Actually I make sure I eat healthy so I can feel less guilty when I eat "junk" food. I have to admit I'm an ice cream junkie. I just can't live without the stuff.

The only foods that I can't tolerate are deep fried or really spicy. Otherwise I have been able to eat anything. Even with this flare, I can eat anything. But since I know my small intestine is inflamed, I am staying away from seeds and popcorn. Oh yes, popcorn is another fave of mine!

Good luck staying on a diet. Dieting is really hard. I am trying to figure out if dieting is the way to go or not since everyone seems to react differently. Of course if it works, it's totally worth it! That's why I'm asking all these food questions of everyone. ;)
 

valleysangel92

Moderator
Staff member
I always feel like that for a little while when I've spent time in hospital, it can really mess your body up in some ways. Make sure you get enough rest and don't over exert yourself for a few days.

I have had 2-3 other flares in the past year, 2 being very mild and passing on their own, one needing prednisolone. My problem is I see two consultants, one specialist and one non specialist, and the non specialist is the one I see most often and he's been reluctant to give me maintenance medication. I have an appointment with the specialist in a week and hopefully he will see sense.
 
Do any of you take medication every day for your crohns??
My GI told me to take my mess every day for the rest of my life in order to decrease my chances of flare ups?
 
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