New and desperate for advice!

[emma turner]

Hi everyone,
My names's Emma Turner... i'm 18 years old and i would have been diagnosed when i was about 12 years old, only just thought of getting on a crohns disease forum and talk to someone about it.

I've been through multiple medications, alternative things and nothing seems to be working which is so scary..

I've just recently been moved from PMH to Subiaco and my new specialist is suggesting that i have surgery. He wants to get rid of the diseased part of my bowel and then i'd have a colostomy bag for 3 months while it heals.

I'm so worried and would appreciate any advice...
Would just be so good to talk to someone with Crohn's because i guess everyone knows that nobody can really understand the pain and what we all go through on a daily basis. It's honestly so traumatic and it's like people just don't understand because they see us healthy at one stage and doubled over in pain 2 minutes later..

Thank you for your replies in advance.

 

[Bottomless mummy]

Hiya, I'm sorry to hear your having to go through this so young.
Sometimes surgery to remove diseased parts is a good thing health wise because it can spread.
I wonder whether it is a loop temp illeostomy ? That you are talking about.

Kindest regards

 

[highlandsrock]

Hi Emma

I was faced with the same prospect as you - surgery. Outwardly I looked OK (for me) and apart from when I was in pain you wouldn't know anything was wrong. The thought of surgery scared me and I fought it off for some years but almost exactly 2 years ago I was lying in hospital having had the stricture in my terminal ileum removed and was getting used to living with the bag whilst my system recovered. Since then I've had the reversal and I'm back to leading a pretty normal life without Crohn's medication. (There have been a few other problems but not related to my recent ops)

Elective surgery is certainly a much better bet than allowing your condition to deteriorate so much that you end up having to have emergency surgery. It gives you the opportunity to come to terms with what lays ahead and a chance to actually plan around it. I found that once the decision to go ahead with surgery was made I became very calm about the whole process and that attitude has remained with me. I have recorded the whole process on my blog.

If you have any questions please don't hesitate to ask. Regards, Nigel

 

[emma turner]

Thank you both for your comments,
Yeah, it's in the sigmoid colon and they want to do a ileostomy...

I'm happy to hear that your doing well Nigel. I hope to be at that stage some day soon!
I'm still at the stage where i'm not sure i want to do the surgery.. what changed your mind about putting it off and made you face it?

Thank you for your support.

 

[Ihurt]

First off, I am Sorry you are going through all this. I have no experience with surgery. I am still trying to get a diagnosis.

I will say this, when it comes to any type of surgery, I would always get more than one opinion. Surgery is a major thing and should be thought out carefully. That is why sometimes getting more than one doctors opinion is good.

Good luck and I hope everything works out either way you decide to go.

 

[cielos]

I agree with Ihurt's advice to always get a second opinion when surgery is involved. I was barely diagnosed myself, but my heart goes out to you, its a hard thing to go through especially with you being so young. I am in the midst of exploring surgery possibilities myself. I would definitely make sure you have a trusted dr and really explore the time frame between doing an elective surgery and and emergency surgery as others have said you don't want to have an emergency surgery if you can help it. Good luck and keep us posted with any updates on which way you choose to go.

 

[highlandsrock]

Hello Emma

In 1999 my stricture was getting bad and I was told my last chance before surgery was to try Azathioprine. I didn't want surgery at that time for various reasons : we wanted to move house; I was wanting to move job; and last, but not least, the thought of having an op scared me and I hated hospitals.

By 2009/10 the whole of my digestive system was in a bad state and I had a "final" last chance of Infliximab, but that didn't work so surgery became inevitable, albeit with a few months to plan the whole experience. There really wasn't a choice at this point and no decision to be made other than were to have the operatoin. Once that decision was made I found I could treat the whole thing almost like a personal project and that is how I coped.

Of course the big question is - if I had had simpler surgery in 1999 would my intestines still have contorted and formed fistulas and loops or not and ended up in the state they did? I don't expect to get an answer to this one. Having now been through modern surgery and aftercare I know that it is nothing to be scared of if you have a good around you.

The trick is not to let your Crohn's go so far that you end up having emergency surgery.

 

[emma turner]

Thanks again for all the advice everyone.
Recently it has been getting worse so i'm thinking of having surgery more and more as the pain keeps increasing.
It's such a hard decision as you all know.. some days i just want it out. other days i tell myself that it's just another sore period which will go away again. I wish someone could just make the decision for me.
I will definitely look into other opinions and even write a list of pros and cons! hah... we'll see what happens... I'll keep you updated.

Thank you guys so much for the support.
Emma

 

[tots]

I am not sure I understand the terminology- with CD being a skip lesion problem they just take the part of the bowel in the worst shape?

If they remove UC its gone not so with CD as it just invades another part of the bowel.

If my understanding is wrong let me know- the more I can have an informed conversation with my Dr- the more infoarmation he gives me.. now if I only knew all the ??? to ask!


good luck and feel better soon!


lauren

 

[emma turner]

I'm not sure about UC, but with crohns you can take a part of it out and it can come back where ever, whenever. Not nice...

I hope your dealing well.
Emma