Hi, it's Sophia!

[Sophia]

Hi, I'm a 27 year old girl who got diagnosed with Crohn's in January this year.

I've got what is sometimes called Crohn's colitis, as the inflammation is located in my colon only.

I also have extraintestinal symptoms like watery, itchy eyes and eye infections, as well as skin rashes and atopic eczema.

I'm on Asacol 800 mg x 2 at the moment, and I've been on Solu-Medrol intravenous 60 mg for 10 days, and then 60 mg of Prednisone for a few weeks. In total I was on cortisone for three months, and I am so pleased to be off it, as I'm sure you all understand!

The past few months I've gradually been feeling worse, and as I felt my doctor didn't take the signs and symptoms seriously (and having my hospitalisation and heavy cortisone treatment in mind) I thought I had to seek advice elsewhere. I contacted a nutritionist and started a new diet on 11th June. Only two days later I felt a noticeable difference, and after four days I could no longer see any blood in my stool. After two weeks my stool size and texture is almost back to normal (as it was before I got Crohn's!) and I am so incredibly happy!

The diet I'm on is: no sugar, no flour/grains/gluten, no potatoes, no milk or cream (cheese is okay) and only one fruit a day. It's hard, but it is SO WORTH IT, as I am feeling so much better only after a few days. I find it ridiculous that my doctors and the hospital couldn't advice me to seek a change in diet to see if it could help me. And I hope that if your doctors haven't given you this piece of advice either, that you will read this and try it. The worst thing that can happen is that it doesn't work. Please feel free to contact me if you want to talk!

I believe that sharing information is key if we want to find ways of making our everyday life as chronics and Chronies better!

All the best to all of you!

xoxo Soph

 

[Crohn's 35]

Welcome Soph!!! Glad you are here! Yes a few have Crohn's colitis,which means Crohns can be anywhere too, and bleed. What a diet! that is a very hard one. It maybe easier to say what you DO eat lol. Given up all that pretty much covers the diet. What's left LOL.

Great bunch of people here, hope you enjoy our forum!

 

[Sophia]

Hi!

What a quick reply, Jettalady!

You're right, it's a tough diet, but the motivation to carry on is definitely there, as the alternative is so much worse.

I've always eaten bread, cakes, bread, cheese, potatoes, bread, cakes, candy, cookies - I guess you get the picture.

Now I eat salads, chicken, fish, vegetables, soups (not creamy ones), and I have made a crispbread out of seeds that I really like, so this is my substitute for all the bread. Oh , and of course: BERRIES! I don't think I would manage without berries, and nuts.

Have you had any luck with dietary changes?

 

[Entchen]

Hi, Sophia, and welcome to the forum! We have the same diagnosis at present, although there is some discussion about whether my terminal ileum in the small intestine is also affected.

Mmm, I love summer berries. Strawberries are killers for me right now, but I can tolerate raspberries and blueberries and have been enjoying them very much lately.

So glad that you have found a diet that works for you, and it sounds like you're adjusting to it quite well!

 

[GoJohnnyGo]

Hei Sophia! Hvor i Norge? Jeg har bror i Harstad!

I too was diagnosed with Crohn's at 27. It sounds like you are making positive changes. I'm finding low-starch diet helps me with arthritis too.

Take care of yourself and get better!

 

[Sophia]

Hei Sophia! Hvor i Norge? Jeg har bror i Harstad!

I too was diagnosed with Crohn's at 27. It sounds like you are making positive changes. I'm finding low-starch diet helps me with arthritis too.

Take care of yourself and get better!

Hi Johnny,

Jeg bor i Oslo. Så kult at du har en bror i Harstad!

Low starch - what do you avoid exactly?

Take care you too!

 

[Crohn's 35]

Hi!

What a quick reply, Jettalady!

You're right, it's a tough diet, but the motivation to carry on is definitely there, as the alternative is so much worse.

I've always eaten bread, cakes, bread, cheese, potatoes, bread, cakes, candy, cookies - I guess you get the picture.

Now I eat salads, chicken, fish, vegetables, soups (not creamy ones), and I have made a crispbread out of seeds that I really like, so this is my substitute for all the bread. Oh , and of course: BERRIES! I don't think I would manage without berries, and nuts.

Have you had any luck with dietary changes?

I have over the years tried every type of diet, now I use stevia instead of sugar, rice milk and avoid wheat. A dab of cream in my coffee but for the most part , it doesnt make it any better, just not any worse, copable lol. I dont eat chocolate, which is really hard. I know my body, just wished I had a better one.:redface:

 

[Astra]

Hi Soph
and welcome

I have extra terrestrial symptoms too lol
eye infections, styes, and right now, a rash all over my chest, so I empathise!
happy your diet is working for you, I couldn't give up potatoes and milk! It's part of my low residue diet, with white rice and cheese too!
but everyone is different, and we do what works for us cos we're unique in our symptoms!
glad you found us, lots of friends here for you
lotsa luv
Joan xxx

 

[Sophia]

Hi Soph
and welcome

I have extra terrestrial symptoms too lol
eye infections, styes, and right now, a rash all over my chest, so I empathise!
happy your diet is working for you, I couldn't give up potatoes and milk! It's part of my low residue diet, with white rice and cheese too!
but everyone is different, and we do what works for us cos we're unique in our symptoms!
glad you found us, lots of friends here for you
lotsa luv
Joan xxx

Hi Joan,

Nice to hear from you, thank you for the sweet message!

Doesn't it just suck to have the eye and skin problems in addition to all the rest? I get so fed up sometimes... Have you found any remedy that helps for those things? My doctor doesn't want to acknowledge that the eye and skin problems are part of the Crohn's, so I don't really have any treatment as of yet... Hopefully I will be able to figure out something soon. Would be nice not to be squinting and have red, runny eyes all the time. So unsexy!

Do you have Crohn's in your small intestine/ileum? I guess maybe both the symptoms and the remedies would be different compared to my colitis, so maybe that's why we have different diets working for us?

I'm also so glad I found you! It feels great both to share and to read other people's stories. It's comforting, interesting and nice to realize I'm not so abnormal after all.

xoxo

 

[Astra]

Hiya Soph

No we're not abnormal or mental! but hey, your doc is if he hasn't sussed the correlation between eye problems, skin issues and Crohns!
I believe my skin issues arise from the steroids, first the Pred, now I've got it again from Entocort! and ironically, the cream that works is a steroid too!
It is called Daktacort (miconazole nitrate and hydrocortisone) and is used to treat inflamed conditions such as eczema and dermatitis.
I used to get loads of styes, but not as much now cos I change my mascara every month, old mascara hoards tons of bacteria! And, I always wear sunglasses, even during Winter, this helps to prevent runny eyes! Can't cope with bright sun!
Yes, I do have my Crohns in the terminal iliem so I can tolerate dairy and cheese, but can't eat greasy stuff, urgh!
I see you've had a bit of the old steroids too? it could be that causing skin reactions.
xxx

 

[crohnicaly stinky]

Sophia, Welcome to the forum. That's a great picture of you, you're very pretty. I have had some success in the past with diet but I have to admit I am not sticking to any diet now. I'm feeling pretty good at the moment, which has been the case with me. flare for a couple of months then OK for a while. When I'm OK I can pretty much eat anything.

I have had symptoms for many years and was only diagnosed with crohn's a couple of months ago. I immediately began heavy research with the idea to find some key thing. What I have come to understand, especially by reading this forum, is the disease is different for everyone and changes over time. So it is such a moving target that figuring it out is going to take serious scientific research, which I am incapable of.

So now I am resigned to having a chronic disease and I stand ready to deal with whatever it throws at me as best I can. In the mean time life goes on I have to make the most of the good times.

I hope all the best for you and thanks for sharing your story.

 

[Dexky]

Hi Sophia and welcome. We too had positive results with EJ on a diet very similar to yours while he was still on pred. After the pred, his stool has returned to mostly d but usually no more than 4-5 times a day. We still stay close to the diet but let him eat bread occasionally. He has no problems with milk products though so ice cream is a frequent treat for him. He is the opposite of you with the berries and nuts as they just go right through him. Hope things continue going good for you.

 

[Sophia]

Thanks for the warm welcomes, everyone! <3

Joan: Yeah, I know, my doctor seems to not want to see the whole picture. It's a bit frustrating...

You're right, I've had my share of steroids for a while - hopefully! I've also heard that skin problems can arise from the steroids. What is your dosage? I got the eye and the skin problems before I was treated with steroids though, and I find that the eye and skin problems often come before or at the beginning of a flare, and that the symptoms of the intestines slowly takes over to be the only real problem as the inflammation then progresses...

What are your eye symptoms like? I get itchy eyes, especially around the eyelid (the wet part) and if I itch my eyes they get really runny... I also get funny strands of mucus in my eyes, that itch really badly if they get stuck to my cornea... Ugh, how disgusting! Good advice to change your mascara a lot: I'm gonna try that too!

Crohnicaly stinky: Thanks man! That's always nice to hear. You are so right about making the most of the good days. I am so living by that right now.

Dexky: I'm sorry to hear your son is having D again after stopping with steroids. I really hope that you will find a way to control the disease as best you can. It's always nice to have support from your family when you go through this, and it seems like you are doing everything you can to support EJ and help him live the best life he can.

Good luck everyone!