Scared and don't know where to turn.

[mcjmalaboot]

I have read so much on here and I must say first thank you to everyone. I have come here today to type my feelings out and just get it all off my chest in the hope that I may feel better.

I was only diagnosed in Oct/Nov 2013 and this is all relatively new but I returned home yesterday from a week in hospital and am now booked in for bowel resection surgery. They have not set an exact date but it will be sometime in the next 3 weeks. I am scared!!

I had a really good chat to the surgeons yesterday who went through the whole process, key hole to full incision, bowel resection and stoma possibility. I felt reassured with the medical team and the time they took to explain, why and how as well as the aftermath. One of the Gastro specialists assisting also has Crohns and has had 2 surgeries so he was on hand to give me his opinion and experience. They were all very positive and reassuring.

The thing is now I have come home, (my partner is great but I don't feel he understands as much as he tries) and I am so angry upset and depressed.
The reason they feel they have to do this so quickly is there is a lot of scar tissue and they feel being undiagnosed for many years has left the bowel unrepairable. I am angry after 25 trips to doctors and hospitals in the last 5 years that no one took me seriously. I think maybe if something had been done back then I wouldn't be here now.

I am upset at the thought of surgery. Having had 5 different surgeries throughout my 32 years I am still petrified. Everytime I think about it now I want to run and hide or just disappear. Deep down I do know it is for the best but the thought just scares me.

Everyone keeps telling me I will be fine and it will be easy, but it is major surgery! I don't think anyone is getting that. I have tried to explain to people what they may have to do and they just keep saying oh you will be fine that's nothing! But sorry, I'm not trying to be over dramatic but it IS something. Its not is if I will get up the next day and walk around and life will be normal.

I just want to curl up cry and it all to go away but I know it won't. I am on Pred and have been on a full fluid diet for 4 days and will continue that now til the surgery. So I know I am feeling a bit weak and flat from all of that but I just feel messed up.

Know one I know has Crohns and I am finding it hard to talk to anyone, hence why I thought if I just get on here and write down everything I am feeling I may feel better. I am having my own little pity party at the moment and maybe once I get my head around it all I may just feel ok.

I knew when I got diagnosed that the road would not be easy. I have done everything I have been asked to do and followed all doctors orders. Surgery was mentioned at the start but it was always like a last resort and I felt I was not even near that point and now 3 months later I am sitting waiting.

I really don't know the appropriate thing to say here but if you have read this thank you, if you feel I am overacting tell me. I just want someone to hear me.

 

[Kero]

You have every reason to be scared, it's surgery! From what I hear though your quality of life likely to improve a lot Any questions you may have, any concerns, that is what we are here for. Vent away, we'll always listen <3 :hugs:

 

[pink&green]

Sending:ghug: don't hesitate to ask questions or to vent that's what we are here for.

 

[Grumbletum]

Hello there. Yes, vent away. And have a good cry to. I think it will help get rid of some of the shock and tension. Many of us know exactly how you feel. For my resection, I only had a day's notice which I'm glad of. Less time to worry. I thought I was fine and quite resigned to the whole thing until I was in outside the theatre waiting to have the anaesthetic. My surgeon popped in to see me before they started and I was bawling my eyes out.
As the others have said, we are hear to listen and support. You're with people who know exactly what you are going through. Big hugs.

 

[highlandsrock]

Please don't be afraid to admit being scared of surgery, I was and did everything I could to avoid it until there really was no alternative. Try not to dwell on what might have been as it can screw you up. For many Crohn's patients surgery will be required, it's just a question of how long it can be delayed by medication.

I was put in the same position as you with the possibility of a stoma. That was a bit of a surprise and not something I had ever thought about so can completely sympathise with where you are. I'm not going to pretend that surgery will be easy but it's amazing how quick the body bounces back even from a "major" operation. The end result can be very positive. My Crohn's is now clinically in remission and I can lead a pretty normal life.

Just reading other peoples stories you will see how each of us reacts differently. Unlike Grumbletum I had at least four months to come to terms with what was going to happen and I'm pleased it worked out that way. I managed to get to a point where I could focus on a point beyond the operation and getting my life back.

Keep posting and let us know how you are getting on

 

[mcjmalaboot]

Thank you so much everyone! I have calmed a little since writing this. I have had 2 reasonably good nights sleep which I think has helped clear the head. The worst part I guess is that I understand the surgery is for the best and from everything I have read on here and been told by my medical team the quality if life afterward will be heaps better and that is the positive and what I look forward to. I feel I may be in denial lol, I know the amount of pain I am in and everything that has been going on but part of me is trying to convince myself that its not as bad as we think and maybe they have it all wrong and I don't need the surgery. Stupid I know.
Highlandsrock you are right being angry is doing my head in and was messing me up. Today I feel like I have let go a bit of that anger and am a bit more excepting to what is happening.
I am trying to see the positive of a good medical team and at least I have the resources available to have surgery.
I have a partner who is trying his hardest and I love him for that. I also have 10 year old twin daughters to my ex husband. Luckily we all get along really well and because I have suffered from problems for so long my ex is extremely understanding and willing to do anything we need to help me through. The girls have not been here ( they all decided to keep them with him to allow me time to recover from my stay and get my head around things) but they come home today and I think once a few things start to go back to normal I will feel more relaxed.
Its funny I went from feeling so alone to coming on here and feeling like I was such a part of something. I have always been hesitant to speak my feelings but here I guess I feel at home.
Ok so today I am going to rest, keep on my protein shakes, hug my girls and keep thinking and telling myself that things are going to get better. Fingers crossed it works.