Recently Diagnosed...

[NoNameNoFace]

Hello everyone, Im 23 years old and I was diagnosed with Crohns disease on the 19th of November there. I've been going through hell and feel so down over the last months or so an feel the need to come on here and share my feelings with fellow sufferers. My partner/family and friends have been supportive but they dont really understand what I go through and at times I feel so isolated.

Basically in July last year I found myself getting severe stomach cramps and dioreaha, feeling so tired and exhausted, so I went to the GP was put on stomach tablets, didnt work so went a month later for stool and blood tests. Results came back as bad news, very low Iron count and blood in my stool was refered to the hosptial, had to wait 2 months to see the doctor and battled on with no help or medication. Seen the consultant and had to have a colonoscopy (oh god I wouldnt wish klen prep on my worst enemy) and a barium xray test, so low behold I had crohns disease and my small bowel is an awful state on the xray.

In that time I have lost 2 stone and lost my appetite, look pale, everytime I drank alcholol I vottimitted, can I just say Im not a heavy drinker and dont smoke but I do enjoy going out the odd time, so when it effeced this I was devastated, I've had to drop out from playing for my football team, but I started my course of entocort. They definelty calmed the sypmtons down a bit but I went back in mid December for a check up and the Doc decided my bowel was in a bad state and he was worried the fact I hadnt put any weight on.

So now Im on prednisone and azathioprine, multivitamins, and calorie milshakes.

I felt great for 2 weeks there over Christmas (which is all I could of asked for), no cramps and seemingly regular toilet visits and more solid stool. Was able to go out and drink without being sick, But I've been reducing the prednisone every week by a tablet Im down to 5 a day now, but over the last 2 days my stomach has been feeling tense and I've been getting slight stomach cramps, my stool was a bit looser today, Im worrying because Im reducing my prednisone the symptons are slowly coming back?

I'l be devastated if this is the case because for 2 weeks I was the happiest man in the world and I felt like I've got my life back but I've felt so down these last 2 days!

Im due for a check up again on the 16th of this month.

Sorry for rambling on a bit, I just needed to get this off my chest as the last 6 months of my life have been pure hell. Im sure there is people on here who have experienced the same sort of thing and Im sure there is people who have it far worse. Im just so desperate to get my life back on track and Im praying I can come off these horrible tablets Im on and the symptons go into remission. But Im a bit worried they wont work or maybe Im worrying to early!

I took my health for granted and never thought something like this would ever happen to me! I have the utmost respect for people who have battled this basically all their lifes. People try and support me which Im grateful for but they think they understand but they dont truly know what it feels like. Im grateful to be alive as there is people far worse off but every day I live with resentment and fear. Why did this happen to me? I live a healthy and active life! I find myself filled with resentment and bitterness when I should be grateful as there is people far worse but I cant help it. All the hospital check ups, the horrible medicines, the blood tests, the pain! I wish it would all just go away!

Thanks so much for taking the time to read my post, Im sorry I just needed to get all that off my chest, any comments are greatly appreciated.

Hope & Faith & Courage & Strength.

 

[Jessi]

Hello NoName, and welcome to the forum. I'm seriously sorry that you were diagnosed with CD, but it's good to have an answer and proper treatments.

I'm happy that your holidays were good and healthy. Hopefully, those good days will come back very soon. The prednisone will really help you to put your weight back on. Skinny me actually weighed more than ever in my life because of prednisone. Afterwards, I lost 5 pounds to be my comfort weight again.

Please feel free to rant as much and as often as you need to. And don't feel like you need to apologize for doing so. That's what we're all here for... to lean on each other for strength. :hug:

Again, a big welcome to you. I'm glad you've joined us here.

 

[David]

Hi there and welcome,

Alas, as you read this forum, you'll find many in the same predicament as you. Especially if you read our prednisone support forum.

Hangout here, read, and ask questions. Over time, you'll learn to be your own advocate and take control.

We're here for you anytime.

*hugs*

 

[Angrybird]

Hello and welcome :bigwave: It does seem to be a common predicament you are in with the Pred. From the looks of is the Aza needs a bit more time to kick in - it can take up to 12 weeks for its full effects to be felt. I would have a chat with your doc about perhaps upping the Pred dose slightly - perhaps 10mg if you were doing well on this and then taper more slowly - one time I was on this they took me down in 2.5mg increments every 4 weeks. Also what dose of the Aza are you on? Am really glad you have found us and never worry about coming and having a good rant, your right, it isn't fair but at least here people get it.

 

[NoNameNoFace]

Thanks for the comments people, really help! I sit here as the tears roll down my cheek and feel a sense of hope and confidence just being on here and reading others peoples comments/thoughts and how upbeat they are, I can try be inspired from it!

Angrybird - Im on 5mg, I was on 8 a day day but now Im down to 4 tomorrow, my stomach cramps are slowly coming back and regulary and I had some an hour ago which were very sore like the ones I was getting before I started these stronger tablets! Im worrying! The plan from the consultant was to slowly take my off the pred and stay on the Azathioprine, but the symptons are coming back as I reduce the pred!

Anyone know what the usual step of action is if the pred and aza doesnt work?

 

[akpatti]

Welcome to the forum
check with your doctor, but my doctor had me increase to the last successful dose while we waited for the other meds to kick in...they can take a few months. everyone is different, but it doesn't hurt to give the office a call and leave a message with their nurse. my doctor is pretty good about getting back to me that day and getting me in if he doesn't like what he hears.
there are a lot more options for medication then there used to be so don't give up.
patti

 

[Angrybird]

I agree with Patti about getting in contact with your doc. Last time my docs upped my pred back to the working dose and then increased the Aza, they then started tapering the pred again at a slower rate. I myself should be starting Aza again next week at 25mg and then increasing every week by 25mg until I get to 125mg. My IBD nurse has already made it clear that I am not to touch my pred dosage for 4 weeks. If even trying this and it doesnt work then your doc will be talking to you about trying something else.