Recently diagnosed & in need of support

[omalleycatt]

Hi all,

This is my first time on any type of online forum, and definitely my first time openly talking about Crohns on an online platform. But I feel as though I have no other way to talk to anyone about my diagnosis..

After months of horrible abdominal pain, and several week long fevers, I went and saw my GP. My diagnosis wasn't as drawn out and tiresome as I have read many others had it. After my GP visit, I got a CT scan showing inflammation in terminal ileum & small bowel loops, then I had a colonoscopy where my biopsy showed chronic inflammation in my terminal ileum, and then I was diagnosed. I have been on prednisone for nearly a month, when I tried to taper my symptoms came back. So now I am back on 30g a day. I am now starting 6MP and the risks have me terrified. I cried as the doctor explained the increased cancer risks. I just keep thinking to myself.. I don't wanna die... it may seem dramatic, but that is all I keep thinking about- Will I be able to live a normal life?

I guess what I am having such a hard time with is the fact that my whole life I have been a relatively healthy person. I have asthma- but other than that I never get colds, flu, etc. Then BAM at 23 I get diagnosed with a chronic disease out of NO WHERE. Plus- it doesn't run in my family and I feel as though my family is not understanding how I feel or is in denial about my disease. Everyone has been sympathetic, but no one can really understand how I feel. I will have days I feel great, and days that I feel like absolute garbage..:sign0085:

I feel as though I am babbling, but it feels good to open up for the first time. What I really am wondering though is.. can you live a normal life with Crohns?

 

[Scipio]

Yes, you can live something pretty close to a normal life with Crohn's. They key is finding a good gastroenterologist whom you trust and working as a team with him/her to find the right combination of medication/diet/healthy lifestyle that will get you into remission and keep you there.

The first thing to know is that no two cases of Crohn's are exactly alike. What works for some fails for others and vice versa. You need to stay positive and stay focused on finding what works for you. Azathioprine is a good place to start. The increase in cancer risk is real but it's very, very small, especially for a young woman.

Unfortunately, Crohn's is a serious disease, and serious diseases require strong medicine. So most of the medicines that actually work carry side effects often including increased cancer risk. However, by far the biggest health risk that CD patients face is not the small risk of cancer or other side effects - it is the huge risks from untreated or uncontrolled Crohn's.

So my advice is to stay positive, stay involved, and take your GI's advice very seriously. You can come here for all kinds of advice and support. Here you can talk without embarrassment about absolutely anything pertaining to your disease. We've all been there.

 

[liscol]

Im sorry to hear what you have been going through and I think it is quite normal to feel overwhelmed when you fist get diagnosed. It is hard for friends and family to relate when they haven't experienced it them selves but i'm sure they are trying there best.

It can take some time to find the medication that works best for you and it can be a hard and frustrating journey back to feeling ok. There will be times when you do feel like Crohn's has taken over your life but hopefully you will get lots of years in between when you are in remission.

I wish all the best for you, and hope your symptoms settle quickly.

This forum is a great way to connect with people who do understand what you are dealing with and remember you are not alone.:ghug:

 

[Tuff]

Welcome to the forum. I too had been healthy all my life until I got Crohn's. It's been quite a roller coaster ride. You will go through different emotions as you get used to the fact that you have an incurable illness. These are the five stages of grief. Depression is quite common. Seven years on, and I still go back to depression and anger occasionally.

Denial – The first reaction is denial. In this stage, individuals believe the diagnosis is somehow mistaken, and cling to a false, preferable reality.
Anger – When the individual recognizes that denial cannot continue, they become frustrated, especially at proximate individuals. Certain psychological responses of a person undergoing this phase would be: "Why me? It's not fair!"; "How can this happen to me?"; "Who is to blame?"; "Why would this happen?".
Bargaining – The third stage involves the hope that the individual can avoid a cause of grief. Usually, the negotiation for an extended life is made in exchange for a reformed lifestyle. People facing less serious trauma can bargain or seek compromise.
Depression – "I'm so sad, why bother with anything?" In this state, the individual may become silent, refuse visitors and spend much of the time mournful and sullen.
Acceptance – "It's going to be okay."; "I can't fight it; I may as well prepare for it."
In this last stage, individuals embrace mortality or inevitable future, or that of a loved one, or other tragic event.

 

[cmack]

Sorry to arrive late, welcome, omalleycatt. You have my support, give me a shout if you need to talk to someone. I like to help people.