Crohn's info/help appreciated - I'm a newbie to this so please bare with me.

[Wheels1974]

INTRO
I personally don't suffer from IBS or Crohn's disease.
However my partner has been diagnosed with Crohn's for 10 years now but she had it about 4 years prior to being officially diagnosed.

The reason for this post is because I have never felt such a connection between anyone in the past and I really do love her a lot and will do anything I can to try help her with her Crohn's or anything for that matter, if I can.

She was 34 when first diagnosed.

MEDICATION
My partner takes 50mg of puriNethol once daily and has been on it for the last 18 months.
When ever she suffers with a serious flair up she takes 25mg of Prednisone and then gets weaned off them by reducing 5mg per week.

She hasn't had any bleeding for about 8 years now.

CHANGES
She always drank coffee daily only a cup or two.
However since she's been with me as I like to research I found out that caffeine when on puriNethol is not good.
She shocked me in all honesty as she started the De-Caf as soon as I mentioned it, thankfully she listened and had the will power to stop caffeine. She hasn't been drinking coffee for the past 10 weeks to 3 months now and only drinks De-Caf coffee and has noticed a MASSIVE decrease in discomfort in her abdomen to the point her abdominal pain is basically non existent.
Also she has noticed a significant decrease in flair ups since drinking De-Caf

This forum looks to be fantastic as I know first hand how forums can lead to plenty of handy tips or advice that can seem like a miracle at times.
I have been a C4 Quadriplegic since I was 13 years old, (30 years ago now) - I have no movement from the neck down and obviously confined to a wheelchair, so I know being part of a Spinal Cord Injury forum for 15+ years has helped me greatly over the years as you're sharing information with others in the same/similar situation which I find PRICELESS.

I understand everyone is different and suffers differently with any condition, however that being said any information or help about Crohn's anyone can give me would be greatly appreciated, Thanks in advance.

 

[valleysangel92]

Hello, welcome to the forum

I just want to say how lovely it is to see such a supportive partner, not everyone is so understanding.

There are lots of things that your partner may find useful, such as keeping a food and symptom diary to see if there are any specific foods or drinks that make her symptoms worse. This is useful because as you say, everyone is different and most find that its best to work out what specifically bothers them instead of following a set diet.

If your partner is still experiencing flare ups then she might need to change her regular medication, steroids are great for short term use, but its best to stop the flare ups happening in the first place. The aim is to try and get into remission, or as close to it as possible, so even though her flare ups have decreased, it is still worth chatting to her medical team to see if a more long term solution can be found, which may be as simple as increasing her current medication or introducing another.

When was the last time she had any testing? It's important that she's getting regular monitoring including looking for nutrient deficiencies as people with Crohns often have problems absorbing foods.

 

[Wheels1974]

Firstly thank you so much for taking the time to reply to my post.

TESTING
My partner has just had a MRI done two weeks ago, she gets the results at the end of July.
Also full blood tests..

REGULAR MONITORING
Every 2-3 weeks blood tests
Every 3-4 months feces test

NUTRIENT DEFICIENCIES
She takes Iron supplements
She had a vitamin B-12 injection
She also had a injection for Rubella & Chicken Pox as she wasn't immune to it.

Thanks for the advice about keeping a Food & Symptom diary, that is a great idea...

Should you need any more info please feel free to ask and thanks again for your reply, its greatly appreciated.