Bitter to be joining

[JodyL]

Hello all,

I am a recently diagnosed (about a month ago) 33 y/o female with Crohn's Disease. I, like most of you, didn't picture my life going quite this direction. My doctor has me on prednisone, pentasa and imuran. He's already talking about Remicade and I am not wanting to go down that direction so soon. I feel like I'm still trying to accept my new lot in life.

Looking forward to feeling good one day,

Jody

 

[AuburnKelly]

Hi Jody - I can relate to your subject line. I've had Crohn's Disease for 20 years and I remember being bitter at first, too. And unsure about how my life would change. I was 35 years old - in the "prime" of my life! Just like you.

I promise you that you will feel better. You will be able to live a good and "normal" life. The drugs and therapies available today are so much better than they were 20 years ago and progress is being made every day for more options. That's so encouraging for us! For you!

Just know that I am pulling for you to feel better - physically and emotionally. Do no let this disease take your joy!

 

[lgpcarter]

Welcome to the bitter bus, Jody!

I was diagnosed at age 20 and it was quite a shock after being healthy for my whole life. You will adjust and things will get better.

I started with Pentasa and Imuran as well after prednisone got me through the worst of my flare. They didn't quite do the job to get me into remission, so I switched to Remicade and had 10 great years. Do what you feel is best, but also try to trust in your doctor who has a lot of experience. Also don't be afraid to ask lots of questions - including why s/he thinks Remicade is a good idea now.

 

[joeyme1]

Hi and welcome! I started Remicade a month ago and am happy I did. I had to fail on Humira before my insurance would approve it. So far, I've notice a big improvement in my quality of life.

 

[Lady Organic]

Hi and welcome. i feel you wanting to take your time with medication. I am exactly like that and I very often ''negociate'' my treatment with my doctor, I propose ideas and i take part of my treatment plan fully. gathering information is key, so some research and coming on this forum definetaly help prepare before appointments. There are therapeutic dosages of Imuran which have the possible potential to keep you in full remission. remicade and biologics drugs have been around for only 10-15 years. Before the 2000's, only Imuran and sister drug purinethol were used for moderate to severe cases. Ive been on remission with purinethol for many years only. You can ask to try that treatment first alone if thats how you feel and if your case allows it. Just remember Imuran can take up to 3 months to start being effective, so you may need extra rounds of prednisone in the mean time, Thats the downside of waiting for Imuran treatment to work. remicade is usually faster.

 

[POTTYTIME!]

JodyL,

It is a trial and error thing on the meds. They have to find what works and what dont. Once you get the right meds going, you should start to feel alot better. I cant tell you not to get depressed or down, because I have been there myself due to this ( TAXING DISEASE ). I will say, keep your head up, stay strong, and know you have everyones support in this forum. Besides my wife and family, this is a great group of people who can relate to what you are going through.

Hope all goes well. Stay positive, it gets better.

 

[JDTM]

Hi Jody -- I'm probably just echoing what others have said here, but things do get better with the right meds for lots of people. This site can also be a great resource, but try not to freak yourself out -- keep in mind that most people come here when they are in need of help, and aren't necessarily posting when they're feeling great or in remission. You'll get there.

 

[It takes Guts]

....keep in mind that most people come here when they are in need of help, and aren't necessarily posting when they're feeling great or in remission. You'll get there.

That's an excellent point and I'm glad to be re,index of it. People talk only when it's bad. I can testify the same and perhaps we should all post more on our better days. Thank you JDTM :ysmile:

 

[Snomir]

Hi Jody,
I am also a 33 yo female, diagnosed 6 months ago. Now off meds for a while. Things will get better for you for sure, you just need to stay positive. And it is true that everybody posts on their bad days. The only reason I am on forum today because I got my calprotectin and B12 results today.

 

[It takes Guts]

hello Jody

I'm so sorry you're joining this journey but hope that you find good support in this forum and amongst those around you.

It is horrible coming to terms with the fact that this is just not going to go away. It can be controlled but not cured. I was diagnosed just over a year and a half ago and I'm still on the road to acceptance.

There will be good days and bad days and you have to remember that on the bad days this too will pass, and on the good days to make the most of it (without overdoing it - this is still my downfall).

It's hard to explain to those around us the reality of things, when they can vary so much. You might not want to share it with a lot of people but it will help to have people you trust aware so that they can be of some support to you.

I know right now it must seem very bleak but all is not lost - things will get better and wit medication and getting to know your own body hopefully you will find things improve for you very soon.

I wish you the best and please know that you are far from alone x