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Surgery sooner....

Well I'm back in the place that is becoming my 2nd home!
It's been a long weekend of endless tests and xrays. Tomorrow's another colonoscopy and then a meeting with my surgical team. I'm not going to make my May 9th date, it's looking likely that my colon and I shall part company this coming week.
I'm scared!!!
 
Sorry to hear all that has been happening to you. I can only begin to imagine how scared you must be feeling. But at least things are getting sorted for you an hopefully very, very, very soon you will be feeling so much better and will not need to be in hospital or having all the awful tests.
Take care of yourself
Sending you lots of love and warm wishes

Sam
 

ameslouise

Moderator
OMG Andrea!!!! I just responded to your PM and hadn't read your post yet! I guess you won't be going to Boston (or eating any beans!). So sorry this is coming up so much faster than you had planned. Hope things aren't dire (i.e. rupture) and hope you are managing mentally as well as you can given this very sudden turn.

I'll be thinking of you across the pond...

Hang in there - you and I will be surgery buddies this week!

xo xo xo -Ames
 

Terriernut

Moderator
Oh Andrea! I'm really sorry! Sounds like you've 'hit the wall' with your colon. I know BUPA wanted to wait til the 18th of Jan for my surgery (with a perforated bowel) and I'd have been dead by then. Thankfully we have the NHS in this country that doesnt take 2 weeks off at xmas! I hope it's not that dire for you, but if it needs to be now....:eek:

These goshdarned (*&$$)) bowels of ours just dont bloody cooperate with the timing thing do they!!??? Bloody typical of them innit? 2am...yup...scheduled surgery...NOT....doing something fun...naahhaaa. Well, after you have a stoma, you can say...MY time thank you very much!

It isnt easy, and it's frightening as hell. But you WILL prevail and get thru this. We are all in your corner.

Misty
 
Good luck Andrea! My colon and I were not friends either. I was happy to see him go.

Maybe after this you can reduce that long meds list!
 
Andrea,
Sorry you are going through all this mess. Hopefully this surgery will sort it all out & you can regain your health.
Positive thoughts from this side of the Atlantic,
Michele
 
:( Aww

I am sorry Andrea, I do hope that everything goes well and that this helps you feel healthy and well again.
 
Thanks all. Had my scope this morning, and it's showing severe inflammation throughout my colon and rectum. My colorectal surgeons not in this hospital until Thurs this week, so all going well, I will head to surgery then. It's a mixed bag of emotions- looking forward to feeling well again, but dreading looking down at my bag for the 1st time (any advice re this much appreciated). How do you prepare for it? We are almost certain now it's CD and not UC, the inflammation in my colon's patchy, and I have ulcers in my mouth and going into my small intestine. This would be sooo much easier to deal with if I knew my ileo was temporary...
I honestly right now could cry for Wales, but feel like I have to be strong for my family and friends who seem to be finding this equally as difficult to deal with. My 'alone' time in the shower just bring's tides of tears. I'm stronger than this disease, it won't break me, but I just feel so vulnerable right now...
How did you all cope? Please feel free to tell me to pull myself together!!
Any advice right now would be sooo appreciated. xxx
 

Terriernut

Moderator
Andrea,
How do you cope? Simples....you can have a stoma, or you could be dead soon. Crohns can beat us to death. We can beat it by removing our colons, or part of them, whatever we need to do. A bag is better than a body bag. I saw enough of them leave that way in hospital. Crohns, cancer, perforations, you name it. (and why FFS do they always put them next to my bed to go...another story for another day)

So...that's how I looked at it. One bag or another...my choice...It really can come down to that. And ya know...I'm just gonna buy some matching shoes for my bag!:rof:

There is NO CHOICE for coping...we must cope. That is all. It isnt easy, it just is what it is. I have my angry days, and my depressed days. I just get up and keep going. There is no other choice. I figure when I am ready to go, I'll go at my own time...not from Crohns. With a glass of wine in one hand sliding in and dancing. Nothing will beat me, and nothing will beat you!
Go in with thankfullness in your heart that it isnt worse (and you will see worse in hospital) and hope for the best. Thats the best any of us can do.
:hug:
Misty
 

DustyKat

Super Moderator
Oh Welshy, I am so sorry to hear that things have not gone according to plan. :(:(:(

So the plan for surgery will not change now they know it is CD and not UC?

My heart is breaking for you hun, don't hold back the tears, don't be strong for your family, this is your time to let it all out. You are an incredibly strong lady and it won't break you but you deserve grieve baby for all that is going on.

Sending you loads of big squishy hugs and wishing I could be there with you............

:hug::hug::hug::hug::hug::hug::hug::hug:

Loads of love, :kiss:
Dusty
 

ameslouise

Moderator
Hi Andrea -

I'm so sorry to hear about the confirmed DX of Crohn's. You must be so disappointed and I can understand that you are freaked out knowing now that your ileostomy will be permanent. You haven't had any time to adapt to the idea and now boom - surgery and a life altering outcome in just a few days!

I know you already know all the standard stuff about how much your life will improve after you have all the bad stuff removed, and the bag will end up to be the best thing that ever happened to you.... BUT - it's still hard to accept when you are staring such a big change right in the face.

I think it's perfectly fine and even necessary to break down and cry buckets of tears. Eventually they will dry up and you will feel much better about what you are facing. And don't feel like you need to be strong for anyone! Your family will understand if you break down and admit how hard this is!

Hang in there, Andrea. We are all rooting for you. You will come out fine on the other end.

xo xo xo - Ames
 

Terriernut

Moderator
Andrea, I didnt mean to imply I didnt absolutely freak out and cry...oh...my word did I ever! But once I got over the shock...I just barged in. But you MUST cry first. And a bit afterwards, and occasionaly...daily. And then you just go on.

And then...you laugh. Especially when the dogs barge in on you emptying your bag because they think it's FASCINATING...and then, you just thank gawd you feel better. And every day gets a bit better. Because you are tough, and because you have alot to look forward to. And because we're here for you!
Misty
 

Astra

Moderator
Andrea my mate, my pal
We've spoke at length on the phone, we've had some giggles and some tears, but you're sooooooooooooo strong, you just don't know it yet!
I'm afraid it's Hobson's Choice, nothing more, nothing less than that.
Cry all you can Andrea, but always remember the light at the end of this tunnel is waiting for you, to brighten up your life, and to make you smile again.
And when all this is over, forget about Boston, you're coming here to me!
And we'll trip the light fantastic in Liverpool!
Love you lots, phone me tomorrow, it's sleepy time for me now!
xxxx
 

Terriernut

Moderator
Well Andrea, you are now probably counting the hours. I hope you are not in too much pain right now. As we speak our Amy is in surgery. You girls are wonderful. And I know you will come out better than ever! We can swap hospital stories! We can swap stoma funnies! (oh...Stan is quite the character I tell ya) And SOME DAY...we can eat cashews and get plowed together! (yes...eat nuts, and popcorn!)

Please keep us updated when you can! We will worry!
Misty
 

vickyoddsocks

wears odd socks
I'm thinking of you too, I also have to lose my colon and rectum - the lot next week. I'm 25 and have felt devastasted, but ive managed to put the surgery off for 8 years, and now its just time.
Maybe thats why i feel as if im accepting it a bit, but im scared too about looking at the bag for the first time and even having to touch it. But i cant deny that im looking forward to FINALLY getting a break from this effing relentless disease! I used to see having a ileostomy as 'letting crohns win' but now i view it as sticking my finger up at crohns! If it wants to destroy my colon, ill remove my colon so it has nothing to destroy!! - HA!
Chin up :)
 

Terriernut

Moderator
I'm thinking of you too, I also have to lose my colon and rectum - the lot next week. I'm 25 and have felt devastasted, but ive managed to put the surgery off for 8 years, and now its just time.
Maybe thats why i feel as if im accepting it a bit, but im scared too about looking at the bag for the first time and even having to touch it. But i cant deny that im looking forward to FINALLY getting a break from this effing relentless disease! I used to see having a ileostomy as 'letting crohns win' but now i view it as sticking my finger up at crohns! If it wants to destroy my colon, ill remove my colon so it has nothing to destroy!! - HA!
Chin up :)
Good attitude!!! Stick that finger right up at this stinking disease!!! Every day I get up and feel good now, I feel like I'm doing the same!
Rock on!
Misty
 
for Andrea & Vicky - wishing you both all the very best for your ops - i hope they go smoothly, and bring you back a life free from pain & worry. xxx

regarding 'the bag', it's going to be weird at first, it is for anyone having this surgery, whether they want/expect it or not... but it's really not that bad, honestly, and in time i'm sure you'll regard it as something very positive. if you've ever changed a baby's crappy nappy, you're already well prepared :D

at the very beginning, post-surgery, the nurses will take care of it, and you'll probably have a stoma nurse come to visit you and talk you through the day to day care... zoom along to a few weeks later and you'll be doing it yourself like a pro, and hardly giving it a thought. it just becomes part of you (literally, lol) and part of your life, and it really is no biggie. you can still wear the clothes you like, and even better - you can enjoy your food, your days, and make plans to go out that you have a good chance of keeping!

there are loads of people here with experience on this, so don't hesitate to shout out if there's anything bothering you.

good luck!! we'll be thinking of you both. :) xx
 
Good luck on your surgeries Andrea and Vicky!!!
I wish you the best and a speedy recovery :D

Take care - you are both an inspiration!!
Wendy
 
Andrea and Vickie
I am so sorry that both of you are having such a rough time. Stay as positive as possible. You both are in my thoughts and prayers. Please keep us posted.

Big Hug
 
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