I'm scared

[dramaqueen]

Hi my name is Ellie and I am 20 years old.
After a year of unfortunate misdiagnosis and ignored symptoms, I have been diagnosed with Inflammatory bowel disease. From what I have learned, it looks very much to be Crohn's. I am going to have my first consultation in just under 10 hours. Apparently my session will only last 15 minutes. I'm here because I feel pretty alone, none of my friends or family have experienced Crohn's, although they are absolutely wonderul in trying to help me in anyway they can.
It's odd because I have been dealing with the symptoms for some time but it is now that I feel actually scared.
I'm not scared of the treatment or various intimate tests as such, but more fear the thought that 'this is it.' I will now officially have Crohn's disease, or possibly another form of IBD, for the rest of my life. I haven't felt myself for a long time it feels and I am struggling with my relationships between my friends, family, partner and also any professional relationships. I miss how I used to be and the life I had. I was starting to get really excited about where I was going in life and now I am so tired and deflated. I find it hard to go out with my friends, or even have a nice meal with my boyfriend. I hate being so stuck in limbo and hate that those I care about most feel so helpless and worried. If this is how my life is going to be then I'm afraid I won't want to live it. I'm not talking about taking my life, I'm sorry if I sound daft. But it is so frustrating day in and day out. I can't even take my dog for a walk without feeling drained, or being petrified I will have an accident in public. I can't plan my life because my health is so unpredictable, and where does that leave me?
Therefore, I come here as someone at the beginning of their 'journey' with IBD looking for confirmation that this isn't 'it' from now on. Will I be able to go back to the person I once was?

 

[rygon]

Hi and welcome to the forum. Having IBD can be hard, although having a positive outlook can help it does depend on what you eat / drink, if the medicine you are on is working. Some days are good others are bad.

Saying that although it can lead to a big lifestyle change it defo doesnt mean that life is over. I still live life to the full (skydive, rockclimb, snowboard, kickbox). and still enjoy hanging out with friends whilst holding down a full time job and doing a open uni degree.

There are things you can learn to make life easier (like keeping a spare pair of pants, toilet paper and wet wipes nearby at all times), but a lot of it is trial and error

Good luck and hope the consultation goes well

 

[mnijihc]

It is definitely an adjustment period and it is totally fine to think it sucks! It does suck! But you know what? You will find a treatment that works and you will find a routine and you will adjust. In the mean time cry, scream, punch pillows, and do whatever you need to do to deal with the emotional side of things.

Just know that it is totally okay and normal to be upset. Let it out -- it will help!

 

[David]

Hi Ellie and welcome

Do you see rygon's avatar picture? He goes skydiving quite regularly! Point being, once you things under control, you're going to be able to live life again. Yes, there will probably be some changes, but there's no reason to give up.

If I had one piece of advice, it would be to educate the ever loving heck out of yourself regarding whichever form of IBD you are diagnosed with. This will allow you to advocate for yourself to make sure you get the level of care you deserve. With that, the chances of you living the life you want go up.

We're here for you

 

[dramaqueen]

Thank-you very much for your responses. I was a bit overwhelmed when writing my last post, but this discussion board has been very reassuring. I'll update as things progress, and hopefully be able to help some other people in the process!