Chrones disease

becky81

Hi i was diagnosed with chrones Disease 4 months ago. Im 28 and finding it a bit scary. I have had just the one "chat" with my consultant about it, who was rather vauge, and have now been put on meds for life. In fact after the appointment i realised he hadnt mentioned the foods that i can/carnt eat., as well as other important things he missed telling me. I dont quite know what to exspect with this, and dont really know what i might be faceing in the future.
I wanted to start a thread as i had never heard of chrones before i was told i have it, and to be honest still dont understand what im faceing. And im hoping that if people share their own experiances, then it wont be such a taboo subject, and the information might help others.

thanks

*tink*

Hi becky, i was diagnosed when i was 13 since then have had numerous ops including an illeostomy bag. Having been diagnosed with 'ulcerative colitis' supposedly i was meant to be cured but after still having flare ups they now think it may have turned into crohn's disease.

In the early days they couldnt decide what condition i had etc etc, so basicially i had to try different foods to see how i would react - thats the only way you'll know, everyone will react differently. However they do generally say curry and lots of vegetables can irritate lol!

Crohn's is a lifelong condition that is not yet curable, basically what to expect is a lot of tablet taking (At my worst I was on 12 steroids a day and taking some drugs used in transplant patients) magic eyes and if that bad possibly surgery.

On the up side im now 22 and just become a qualified teacher, yes it does affect you but tbh youve just got to get on with it!.
May i ask how serious are your symptoms?

*tink*

zzzLazyDaisy

Hi, I have crohns, I am in my 50's now and have a colostomy. But it didn't stop me going to university and having a successful career as a solicitor.

Also, I understand that treatment and management of the condition has advanced since my day and provided it is caught early enough you have a greater chance of long periods of remission and less surgery.

The one piece of advice that I would give you is on your good days, GET OUT THERE and LIVE YOUR LIFE

Good luck - it seems like a lot to take in, but you will adjust and you will cope.

(((hugs)))

Mutter_2

Sorry Becky, have no idea, except to say my friend was given the worst prognosis thirty years ago and is still going strong.

She runs a successful business and makes no mention of it. I suspect she'd hate anyone to mention it either.

absolutebounder

My advice is to find out as much of the latest research on the internet (google) and leanr to spell it correctly. You will be way ahaead of ant UK consultant. It appears to me the americans are way ahead of us. My tenant died age 44 from the effects of it. She was asking about treatments her consultant hadnt even heard of after playing with google.

Mrs_P_Pincher

The Bounder is right - you need to find out as much as you can about Crohns and take control of your own health, otherwise you will finish up on the NHS treadmill of steroids and, ultimately, a stoma. Taking control can make so much difference to your qualilty of life.

Ask questions, and then ask more questions and in between times don't let it rule your life.

Mrs P P

zzzLazyDaisy

I agree with the comments about taking control of your own health. Treatment in the US is far more advanced than it is here, but some consultants in the UK are more dedicated and pro-active in the treatment and management of the condition than others. Do your research and if you find a consultant with good recommendations, ask for a referral.

In the meantime the best advice I can give you is to listen to your own body. If you listen when it whispers, it won't have to scream at you. This means taking note of which foods upset you, and accepting that when your body is tackling a flare up, it needs rest, rest, rest. It isn't easy, especially when you are young and may look reasonably healthy to an outsider, but you do need to take care of yourself - if you do, you will find that the periods between flares become longer and you will be able to lead a perfectly normal life during those times.

One unfortunate thing is that women tend to be much more severely affected than men, and the normal monthly hormonal swings can trigger a flare, so you need to be particularly kind to yourself during those times.

gerryscot

I agree with zzzLazyDaisy advice regarding self help and listening to your body.
I dont have Crohns however i did work within pharmaceutical Industry, Hope you find the following useful.

For Self help You may find it useful to keep a food diary in which you keep a note of the foods that you eat and record their effects on your symptoms. Eating six smaller meals a day, rather than three larger meals, may also help improve your symptoms

Common symptoms Crohn’s disease include:

diarrhoea, abdominal pain, and fatigue.

Most cases first develop in people who are between 16-30 years of age, although the condition can affect people of all ages, People can have long periods of remission that last weeks or months they have very mild, symptoms, followed by flare-ups’ that are particularly troublesome.

There are three goals in your treatment plan:

treat the active disease - in order to resolve your symptoms.
maintenance therapy - to prevent your symptoms returning.
relapse therapy - to treat any returning symptoms.

Treatment

Budesonide and prednisolone are two steroids that are often used.
Sulfasalazine aminosalicylates.to reduce inflammation inside the colon.
Immunosuppressants suppress the immune system reduce inflammation


Food associated with a worsening of symptoms include:
Milk, alcohol, dairy products, spicy foods, fatty foods, and high-fibre foods.

Gerry x x

*tink*

I forgot to mention the NAtional Association for Crohns and Colitis (NACC) website is very useful

Rebekah24

There are loads of fab reading and forums online

Get reading up but dont get swamped or scared

It took them 4 years to diagnose me correctly, but now I have it fully controlled and have not had a flare touch wood in 3 years.

Depending on the severity very much depends on individual as to what changes etc you may need to make.

Diet makes a big difference for me, I had to drop out of uni it was so bad..but am now back on the wagon and completing my degree. So..you can live with it, enjoy life and have fun!!

What meds have they given you can I ask??

becky81

Rebekah24 wrote: »

There are loads of fab reading and forums online

Get reading up but dont get swamped or scared

It took them 4 years to diagnose me correctly, but now I have it fully controlled and have not had a flare touch wood in 3 years.

Depending on the severity very much depends on individual as to what changes etc you may need to make.

Diet makes a big difference for me, I had to drop out of uni it was so bad..but am now back on the wagon and completing my degree. So..you can live with it, enjoy life and have fun!!

What meds have they given you can I ask??

for the moment im on pentasa, and steriod "foam", but as the colonoscopy i had shows crones (which was an investigation on 1/4 of my bowl), i now have to have a full colonoscopy to find out what the rest of my bowls like.