It all feels hopeless!

Hi Sharon, I noticed you hadn't had a reply yet. I am no expert as my own situation was more straightforward - I had womb cancer, earlier stage than yours, and had no other ailments in my abdomen. But I wanted to say - I can understand that feeling of lack of control of your own situation, and, why not say that to the doctors? I am sure they will appreciate how you feel. It is ok to ask questions AND it is ok to need clarification. At this time we are hit with loads of information and it is hard to navigate the way through it. I also appreciate how you have some spells of wait-and-see ahead of you, like when you come off your Crohn's treatment, and waiting for your colonoscopy. I wish you all the best, and I hope someone else will soon see this, who has more knowledge than I have so they can maybe help you with your decisions. LR.

Hi Sharon,

Sorry to hear about your complications. The docs have to prepare you for what might be ahead and that the plan might change as it goes along. But remember, you will sign a consent form before your surgery, obviously after they know more from the colonoscopy and any other tests/scans. They are trying to build a picture so that they know what to expect during surgery. 

In my own personal experience, I felt like my life had been taken over by cancer and all the tests, scans, surgery etc. It can feel that your life is playing out to someone else's timetable but this will lessen as time goes along. I know it's hard but try not to overthink it. They will work out the plan and this takes time. Hopefully it will become clearer and you will know where you stand. After managing your health and the Crohn's for so long it must be hard to feel in limbo with this new complication thrown in. I remember feeling very up and down at the beginning, my cancer was thought to be 1a then suddenly it wasn't and it was bad news after bad news. In hindsight, my own personal opinion is that if they'd done more tests at the start, I may not have been at the place I am now. Therefore, I would say, go with the flow for now as they might not know everything now but they are taking steps to find out.

I hope I'm not telling you things you already know. I just wanted to say, things will get better but it all takes time.

A x

Hi.  Thank you for replying.  It is as you said.  I don't know what my future will be amd that feels.very scary to me.  It is always the waiting isn't it?  

It definitely is the worst part of all this. We all agree on that. But a lot of us have been at this point to some degree and we have some idea of how frustrating and scary it is at the beginning. Keep strong and know that we are all here to help if we can.

I hope your colonoscopy is soon and provides the answers you need. Keep in touch,

A x

I think it is the word - cancer - that makes it worse.  I feel like it is a death sentence but .Reading posts from people that habe had cancer for a long time.  They are living with it, much as I do with the Crohns Disease.  I wish I felt the same as I do about that.  Maybe I will in time.  I hope I do because I don't want to feel like this forever.  

There are a lot more treatment options now. It is scary and a lot to have to deal with. Take all the help you can and be kind to yourself. 

Xx