Share Facebook
Crohn's Disease Forum » Your Story » Recent diagnosis with tough choices ahead


11-14-2012, 02:35 PM   #1
Franners
 
Franners's Avatar
 
Join Date: Nov 2012
Location: Stafford, United Kingdom

My Support Groups:
∑ Stoma
Recent diagnosis with tough choices ahead

Hi there, I came across this forum while searching for information on the surgery I am due to have in January 2013 and I'd like to share my story with you all.
I was finally diagnosed in June 2011 with Crohn's after 5 years of symptoms and being fobbed off by my GP with IBS and told to 'live with it'. My symptoms were being bloated all the time, with diarrhea (with blood) then constipation. I arranged for tests myself (as the gp wouldn't do this for me) to see if I had any food allergies, these came back as dairy, tea, coffee and a couple of others. I cut these out of my diet and the symptoms went away they then returned back in January 2011 only this time far worse which led me to leaving my job through stress and depression.
When the symptoms became worse I had mouth ulcers which made it difficult to eat, which meant I ended up loosing 4 stone (56lbs) in 6 weeks, I was up every 2 hours to use the toilet and lived on nothing but water. It wasn't till I was visited by a friend who said I looked terrible and she called an ambulance that I was taken into hospital and was there for a week having various tests and getting even worse. I was finally diagnosed and had to make a choice of emergency surgery to form a loop ileostomy (with a hope to reverse at a later date) or face my bowel perforating. I was given intravenous steroids and Ramicade whilst in hospital. Because of my rapid wait loss I had to have physiotherapy to enable me to walk unaided and how to use my hands again.
I was so relieved to finally have a diagnosis but angry at my GP for not taking me seriously when I kept saying I know something more serious is wrong with me. I was in hospital for a month and have since had frequent visits since to check my progress and to see if my ileostomy can be removed. On my last visit i was told that there was nothing more that could be done to save my large bowel and the best was to have it removed.
I am yet to completely come to terms with this but my new concern is that I was advised by the surgeon that I may have to have my ovaries and tubes removed due to excessive scar tissue having damaged them and did I want to some of my eggs harvested so I maybe able to have my own children at a later date.
I'm now undecided as to whether I should have this done as some of my symptoms are returning. I have already been taken back to hospital with severe pain in the abdomen and bleeding from the anus.

It's good to know I am not alone and that there are others that have had similar experiences to me because I do feel that way sometimes, I have had to make all the decisions regarding this on my own and my new partner does not understand but to try and help him understand is difficult for me as I'm unable to answer the questions I have let alone the ones he has.
11-14-2012, 02:54 PM   #2
karenp
 
Join Date: Sep 2011
Location: warrington, United Kingdom
omg you have certainly been through it glad they have finally sorted it out and recognised what it is, they should have done that a long time ago they should have done the tests for you maybe then you wouldnt have had to go through so much, my son is 20 and was diagnosed at 16-17 my mum also had crohns hope things go ok for you
11-16-2012, 11:46 AM   #3
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Hi there Franners and welcome to the community!

First, off, if you have symptoms returning, please read up on Diversion Colitis and if you think that may be occurring with you, be sure to discuss it with your consultant.

Second, stories like yours upset me so much. You could have had an early diagnosis if your GP wasn't so incompetent. That you had blood in your stool and they said IBS IS incompetence and you're facing the consequences now Have you been back to that GP? Do they know what their incompetence has led to?

Anyway, we're here for you. I'm sorry you're having to go through all of this.

*hugs*
__________________
It's good to be back
11-16-2012, 02:54 PM   #4
Franners
 
Franners's Avatar
 
Join Date: Nov 2012
Location: Stafford, United Kingdom

My Support Groups:
∑ Stoma
Thank you both for your support it means a lot to know I am not alone.

David, I have not been back to that gp who said it was IBS as in myself I knew this didn't sound right. Iím now registered with a practice that has several Drs and I have seen several of them about this issue and I got a different diagnosis by them all, one thing that upsets me a lot now is that one of them passed it off as me having piles or haemorrhoids without even an examination!!!!!! needless to say I asked for a second opinion on that one.

At the moment the thing that upsets me the most is that my nurse specialist said she would contact my gp to help with arranging for my eggs to be harvested before i can even set a possible date for my panproctocolectomy, as this is not done at the same hospital; it now appears that that letter has been lost by the gp practice so while all this is going on Iím suffering more and more and seem to be spending a lot of energy chasing them up for different things rather than being able to concentrate on getting myself better.
You see the longer it takes for me to even see someone at another hospital where this is done, the more I think I donít want the procedure done so I can have relief from the crohn's symptoms quicker but I then have conflicting thoughts that I should wait because what happens if I don't have them harvested and my ovaries are taken away in surgery due to excessive scarring it'll be to late then. Even though I am not ready to have children right now, I have finally found someone I would be willing to have them with should we decide we want to
Thankfully the nurse at the hospital is great and has sent me a copy as well as the gp one (again!!) so I can get on their case too. But I'm starting to feel that they don't care because it's going to cost them money but Iím the one who is suffering the sh*t and being thankful to be alive because due to the gp's complete incompetence I may not have been here.
I just thank god for my friend who said enough is enough and called the ambulance for me.
I apologise for my rant but it just makes me so made sometimes
11-16-2012, 03:08 PM   #5
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
You have nothing to apologize for. Rants and venting are welcome here!

You have a hard decision but if you want children, I think having some eggs harvested makes a lot of sense. I know how hard it is to wait, but there's no going back on that one
11-16-2012, 04:05 PM   #6
CheerBear12
Forum Monitor
 
Join Date: Jul 2012
Location: Middlesbrough, United Kingdom

My Support Groups:
∑ Stoma
You can still have children after the op it doesn't affect fertility so how come your getting eggs harvested? Sorry to ask such question.
11-16-2012, 05:17 PM   #7
Franners
 
Franners's Avatar
 
Join Date: Nov 2012
Location: Stafford, United Kingdom

My Support Groups:
∑ Stoma
it's fine it was hard for me to understand too as this had never been mentioned in all the visits i've had over the last year to the gi.
My crohns had been left untreated (because of the gp incompetence) and had got to such an advanced stage that the ovaries and tubes may have joined to the bowel with scar tissue and need to be taken away when it's removed.
They have said this is just a precaution at the moment as they don't know the full extent of the damage until they perform surgery.
11-16-2012, 06:33 PM   #8
CheerBear12
Forum Monitor
 
Join Date: Jul 2012
Location: Middlesbrough, United Kingdom

My Support Groups:
∑ Stoma
Oh jeez hope they don't have too hope everything goes well thinking of you
11-16-2012, 07:18 PM   #9
Franners
 
Franners's Avatar
 
Join Date: Nov 2012
Location: Stafford, United Kingdom

My Support Groups:
∑ Stoma
I do hope so too Cheerbear but i'm such an emotional wreck thinking about it all at the moment, cos i'm dreading the panproctolectomy i need to have, i didn't react well to the loop ileostomy surgery i had done last june, i was in hospital for another 3 weeks afterwards.
11-17-2012, 03:37 AM   #10
CheerBear12
Forum Monitor
 
Join Date: Jul 2012
Location: Middlesbrough, United Kingdom

My Support Groups:
∑ Stoma
Your ok your not alone I'm so dreading the proctectomy I've got to have I see surgeon on Monday to tell them my decision then get put on waiting list. So scared of everything don't want to go through another major op hugs x
Reply

Crohn's Disease Forum » Your Story » Recent diagnosis with tough choices ahead
Thread Tools


All times are GMT -5. The time now is 09:32 PM.
Copyright 2006-2017 Crohnsforum.com