My Story - 24 diagnosed with Crohns

[jkjk]

Hi,

I have just been diagnosed with Crohn's and have registered for the forum to try and find out various things about medication and treatment.

I started having bad bowel movements around 3-4 months ago and went into my family doctor to figure out what the problem was, after have all my blood work and stool samples confirm that I did not have celiac's or a parasite, I was referred to a GI. The GI scheduled me for a colonoscopy and with my family history (both my mother and uncle have Crohn's as well) he was fairly convinced that I had Crohn's.

Now the colonoscopy has confirmed that I have Crohn's, I have been prescribed 40mg of prednisone for the month to try and get this flare up under control. Just today I also had a bone density scan that showed my bones are not great either (the tech says this is most likely from not absorbing nutrients correctly from Crohn's).

I am worried about a bunch of things; taking prednisone, low bone density, my weight (im now down to 130lb 6'1" tall). Looking forward to reading the forum and seeing what others experiences are and what people recommend for people newly diagnosed with Crohn's.

Thanks,

Jason

 

[mac4943]

Hello Jason. I'm 22 and was diagnosed when I was 17. I am happy to talk if you ever need someone to talk to or have questions. I know what it's like to be younger with Crohn's so I can definitely empathize.

 

[Angrybird]

Hello Jason and welcome to the forum

Have you been prescribed a calcium supplement whilst on the Pred? If not get onto your GI doc/GP straight away about getting this arranged. It will help protect the bones further from the effects of the Pred and I have seen on here that others with low bone density have been given this to help improve things. The Pred should hopefully get the inflammation settled for you and it can increase appetite do hopefully you will be feeling a bit better in the next few days and gaining some weight. When are you next due to see your doc? Have they mentioned anything about the treatment plan going forward? Has any dietary changes been mentioned at all? Also I would ask the doc about getting your vitamin levels checked to see if you have any deficiences in this area - something that is common in folks with crohn's.

There is a lot of helpful info and support here for you so do have a good look around.

AB
xx

 

[jkjk]

Thanks for the welcoming.

Angrybird - I just had my bone density today for my GI so he could get a baseline, im guessing he will prescribe some supplement for me once he gets the full story from the test. Im next due to see my family doc on tuesday and GI again on thursday, so ill be talking about the calcium stuff with them. I have had a few blood tests that checked my vitamin levels, and thankfully that is all good (I am also taking a good multivitamin to hopefully keep that good).

My GI mostly seems focused on using prednisone to get the flare down then hoping it dosent flare up again, and if it flares again they will put me on a medication to keep it under control. As far as dietary changes, I grabbed a book on diet from my GI, and am reading through that to try and get some ideas.

Not sure if this is usual, but im only on day 2 of the prednisone and I already have increased energy levels (bouncing off the walls a little now actually) this afternoon and increased appetite, so thats good.

-J

 

[Angrybird]

That's sounds very normal for being the on the pred. We do have a diet and sups forum that you might want to check out for further info in this area: http://www.crohnsforum.com/forumdisplay.php?f=17.

 

[David]

Hi Jason and welcome to the community. All of this must be very overwhelming for you

You're smart to research Crohn's disease and treatment options. I think you'll find that it can be a little overwhelming at times but we're here to help you through that.

I must admit, I'm not a fan of you just being on Prednisone. Hopefully your doctor plans to put you on something else as you begin to taper off of it.

With the weight loss, you may want to look into enteral nutrition and discuss the idea with your doctor if you are intrigued. Not only can it help with the weight, but it can help get the disease under control as well.

We're here for you anytime you need us.

 

[nikimazur]

Welcome. I'm 24 as well and still feel new to this disease. I just tapered off of prednisone after having liver issues from the drug. I find the one thing that is so important is to listen to your body and make note of everything especially when starting a new treatment.

I'm also having problems keeping on weight, and since almost all meds for crohns affect the liver, am currently looking into enteral nutrition as treatment. This forum has helped me so much with simple and complex questions and is a great source of information.

 

[jkjk]

Thanks for the suggestions everyone, ill look into eternal nutrition. Right now my doctors seem to be just putting together a plan, and my family doc is wondering why the GI put me on prednisone and not 5asa. So thats another thing i will be reading about.

With so many different options and opinions it can be hard to keep everything straight. Thankfully i seem to be responding well to the prednisone.

J