Need a break!

[Misty-Eyed]

So on Thursday I went to see my consultant after my local hospital stay the other month which ended up with me having a horrific dilation done.

Needless to say, the GI I saw had no idea I'd been admitted despite my local hospital talking to my consultant on the phone and my numerous emails to his secretary trying to get this appointment, but that's another issue.

Anyway, I got given the news that they want to remove my ENTIRE colon. I was pretty shell shocked. They had mentioned maybe a resection and 30% chance of a stoma the last time surgery was mentioned the other month. But now they say that after having crohn's for 18 years, my chances of getting colon cancer are too high and they haven't been able to view my transverse or ascending parts of my colon for a good 8/9 years due to my strictures being too long.

I couldn't really argue with anything he was saying which made it even more difficult. I obviously don't want to end up with cancer and don't want to risk it, I won't have a rectovaginal fistula anymore and I won't have any strictures or active disease to deal with. When I mentioned that I was annoyed because I've been feeling SO well, he even said that that was really the best time to have surgery as it means that they'll be less chances of complications and I'll recover quicker. Plus I'd rather have prescheduled surgery at one of the best bowel hospitals in the world than emergency at my local hospital.

I'm just completely devastated. I knew this day would come one day but not when I've just managed to pick my life up from years of suffering. I'm lucky to not have had any surgery before but this makes it more daunting.

Luckily the guy I've been seeing was with me at the time. I've known him for years so he knows all about my crohn's. He didn't even care that I cried mascara all down his cream jumper. But now I'm kind of scared of losing him too. We've only been seeing each other since January and even though he's been completely wonderful about it all, I'm worried that it's going to be too much for him to take on. Especially since he works all hours under the sun.

I just wish life would give me a break at some point and stop shitting on me (sometimes literally) when things start to look good for me.

 

[Welsh-bird]

Hi Misty, you're story is so 'deja vu' for me- it's almost like reading my past 3-4 months.
I too was feeling well when I was told that a total colectomy was my best line of treatment. Couldn't understand how I could feel so good, but my insides were so diseased. In the end, I decided that I had to do it on my terms, and that I would go elective rather than wait for it to become an emergency. The plus points being, I got to chose my surgeon and met with him a few times in advance, as well as my stoma nurse, and it was done lapro rather than open. For me, it couldn't have gone better, and of course it found the cancer that my colon had been hiding for the past few months. So it saved my life...
It's not an easy decision to make. But you will know when the time is right to put your hands up and say enough's enough. It took me months to agree, but then I just had enough. Woke up one morning with some sort of 'Eurika' moment and rang my gastro to tell her that I was ready. The rest is now history.
As for your new bloke- he sounds a keeper. Mine walked last year at the 1st mention of Ileo, after 7 years together. Lost my colon and fiance, but the later was far easier to get over!!
Wishing you well, and if you want to Pm me at any time, then please feel free.
And x

 

[Astra]

Aw, Misty that's so sad.
Sad cos you think this lovely fella will leave you, I'm sure he won't, you've got to stop projecting, talk it thro with him. I believe in the long run having surgery will be beneficial to you both.
You're only young and have the rest of your life ahead of you, to enjoy and be healthy, and most of all, pain free. Ok, recovery will take it's toll, but what a light at the end of this tunnel waiting for you.
Take comfort in the success stories on here with Amy and Andrea in particular. So inspirational, so strong in their faith, sooo on the road to recovery.
And you're right about the elective surgery, this will give you ample time to come to terms and think about it all.
I wish you all the luck in the world, in time you'll see this as the best thing ever, for everyone in your life.
If it was me, I wouldn't hesitate, I want to be around to enjoy my retirement and old age! (nearly there!)
xxxx

 

[Misty-Eyed]

Joan, I think I'm only scared because we had an on and off 'thing' for 2 years once before. He'd never commit to me but would get insanely jealous when I dated other people. Time has moved on drastically since then and although he's a lot different with me now, it's still taken a lot to let him back in my life again. He still has commitment issues though. We don't see each other often as he works so much (once a week max) but he acts like he's my boyfriend and talks about the future. It's just confusing! He obviously cares about me because he was rushing from work to see me in hospital as soon as I came around from my op and he's come with me to all my appointments even though it often takes up most of the day. He's just not good at talking about 'feelings' and all that stuff. He's very adamant that he never wants to hurt me again, so maybe I should just see how it goes. Maybe he even likes being there for me. Thanks for the luck though. I just keep thinking that the years I've suffered before were a waste of time if I was just going to end up with it all out now anyway!

Andrea, it really is reassuring to know I'm not the only one that's ever been in this position! It's the first time they've mentioned that dreaded C word, but it's something I've been thinking about anyway. I'm trying to see the good points to it all and I'm fine when I'm busy and can still have a laugh, but when I think about it I get very weepy. I'm just worried that I'm not dealing with it properly to avoid getting upset about it. That's one of the reasons I posted in here. It kind of forces me to talk about it with people who understand rather than putting on a brave face all the time. Most other people only give me sympathy which is just annoying me at the moment, even though they mean well. There really is a lot of difference between sympathy and empathy. That's awful about your fiance. Such a shame that it took that to realise who he really was. Still, at least you found out before it was too late. I shall definitely pm you once I get my head around it a bit more, so thank you x

 

[xJillx]

Oh, Misty, I am so sorry. I haven't been in this situation, so I can only imagine what you are going through. Feeling so well must make this even more difficult. But, being proactive about this seems to be the right decision. And, as your doctor said, feeling so well will only help you recover faster. I wish you all the luck in the world and please continue to keep us posted.

 

[Grumbletum]

The fact that he's with you through all your appointments etc speaks millions, Misty. It's a guy thing, isn't it? They're often better showing how they feel than talking about it. Such a lot to get your head round, my heart goes out to you.
Helen x

 

[Astra]

Yeah I agree with Helen, it's a man thang!
With the best will in the world, they're not the easiest to talk to, or convey their feelings. I don't mean to be derogatory to all men, btw!
The very fact that he's been there for you speaks volumes, just take each day as it comes.
If he runs for the hills, then so be it, but he does sound like a keeper.
And, I just want to say, without malice, he's the least of your worries hun!
Just concentrate on getting better and focus on your recovery. And let the past go, it's soooooooooo last season baby!
lotsa luv and good luck
xxxx

 

[Terriernut]

Misty Eyed,

Beautiful girl, so sorry you are going thru this! More sorry as well that you are worried about losing your BF. Men will come and go. Sounds like he's trying very hard to be there for you though! Whether or not he makes it through those hurdles with you, at the end of the day, there is always....yourself. You are always there for yourself. You probably have alot more strength than you will ever give yourself credit for.

I've come out the other side of surgery, and am only now being normal (whatever that is!!!). Whatever life throws at you, and us chronies certainly get alot thrown at us and OUT of us, you can deal with it. You will have to. Having an ostomy is not the end of the world, but the beginning of living life again more like normal people do. (and dont appreciate as much as WE do!) There are so many success stories here to read about. Look at CDDAD, marathon runner!!! (he's my hero!)

I have faith in you that you will come through this!!!

:rosette2:
Misty

 

[Misty-Eyed]

Thank you SOOOO much guys. It really means a lot. It's so nice to hear from people who really understand.

I think I do just need to take things one day at a time and stop worrying! It's just been too easy in the past couple of years to almost forget about my crohn's and I'm not looking forward to having to 'deal' with it all again.

Luckily my employer has been brilliant about it. Only been working there since Feb but she said that work should be the least of my problems and they'll all be there once I get back onto my feet. So that's one less thing to think about.

I guess it's just a wait and see to see what the surgeon says now.

You've all made me feel a lot better so thank you again!! *big hugs*