Finally Diagnosed Late in Life

[Pilotmum]

Just joined this website as I've been finding the other threads really helpful & informative.......a little about me - I'm 62 years young and, about a year ago, was finally diagnosed with Crohns & Colitis after bouts of the most awful D, which culminated in being off work for over a month feeling sooooo poorly, I struggled just to get out of bed and put one foot in front of the other. My hospital consultant has recently prescribed a 1 month course of Pred (lower dose each week - I'm on week 3) plus Aza, I assume to be taken long term to hopefully keep my 'flares' at bay. The worse part, for me, of this awful disease is just not knowing when a 'flare' is going to dictate my life, it just makes it so difficult when planning holidays or just days out; when my stomach is bad and I feel so unwell, I just don't have the strength or inclination to go anywhere or do anything. Hopefully the medication will keep me more on an even keel.....although the side effects of taking the Azan long term, do worry me

 

[ronroush7]

Welcome to the club.. They had to cut me down to 50 mgs. of Aza because there was too much of it in my blood. The only other thing is that it thinned out my hair. I wish you the best.

 

[Pilotmum]

Thank you. Yes, hair thinning worries me, I will just have to see how I go - on days when I feel awful, it's important to me that I look ok so hair is a major factor

 

[scottsma]

Hello and welcome.It's always overwhelming when being first diagnosed. But try not to worry too much and take one day at a time.Meds and diet differ for everyone,so what suits one person has adverse or no effect for another.I understand your worry about a restricted social life,but it might not be that way.Once you get used to the idea of being a crohnie and get your symptoms under control,you could lead normal life.Lots of us do.
Feel better soon.

 

[dave13]

Welcome to the forum.This disease may make us alter our lives,but,as scotsma says,take one day at a time.It takes a bit of getting use to.We may have to adjust our lives but we can still live them,in my opinion.The forum was/is a great place of support for me when I was diagnosed.Communication with your GI/GE is a good thing.Form a plan to fight this disease.

It may seem overwhelming now,and it is a lot to deal with.'New Normal' is a phrase you will hear and it is accurate.I was diagnosed three years ago and am just 'dealing' with it.Don't turtle too bad,you can live your life. Just takes some time.

 

[David]

Welcome to the community. I'm sorry to hear of your struggles and hope the azathioprine kicks in soon.

I wish you well.

 

[Deadstar]

Welcome to the community! Best of luck to you. You will find great information here and great people.

 

[Pilotmum]

Hi, recommended by a hospital consultant, some time ago, to take VSL#3 (this was before I was given any medication for my crohns) and have since taken one sachet daily or every other day.......I'm just finishing my course of Pred (steriods) and on Aza (starting dose at the moment) and, I'm pleased to report that my awful symptoms have certainly improved. I'm due to see my current doctor tomorrow who, by the way, has NEVER heard of VSL#3 but just wanted to know if anyone has used VSL3 whilst on medication and whether it's been a help? Thanks

 

[David]

Quite a few people here use it and while on meds. Feedback is mixed but it's not going to hurt. I'd give it a shot.

 

[ronroush7]

Hi, recommended by a hospital consultant, some time ago, to take VSL#3 (this was before I was given any medication for my crohns) and have since taken one sachet daily or every other day.......I'm just finishing my course of Pred (steriods) and on Aza (starting dose at the moment) and, I'm pleased to report that my awful symptoms have certainly improved. I'm due to see my current doctor tomorrow who, by the way, has NEVER heard of VSL#3 but just wanted to know if anyone has used VSL3 whilst on medication and whether it's been a help? Thanks

It is what my doctor recommends.