Hi all

[Hexie]

Hi my name's Shelli and I live in Cornwall in the UK

I was diagnosed with Crohns in 1986 (after a false diagnosis of cancer) and I went through hell and back many times over having all the tests and trying all the drugs until they got me stabilised. 9 months after the diagnosis (1987) I was in having a left knee replacement the docs discovered I have Crohns related arthritis. By 1989 it was very apparent the knee replacement wasn't working so I had my knee removed and my left leg fused. I was still battling with some serious Crohns symptoms when all that was occurring. Unfortunately I've been SO ill with my Crohn's that I've been given 24 hours to live twice but as I'm Cornish I got a helluva lot of fight in me.
I've had ups and downs with my Crohns since 1986 (I was 16, knee replacement done at 17, youngest person at that time to have one done) and with my arthritis.
Unlucky for me the prolonged usage of steroids, I've been on them since 1986, has left me with osteoporosis as well so I'm in permanent pain with my bones and joints but at least my Crohns is behaving this once.
At the moment I'm dealing with osteomyelitis - bone infection in my left leg - if I'm lucky I'll keep my left leg - if not I'll lose it.
And all of my problems started with Crohns - they don't tell you about all the other stuff that can come with it.
That said I'm pretty cheerful - case of having to be and I meet everything head on and armed with as much info as possible health wise.

 

[KWalker]

Welcome! Having a positive attitude is one of the best things a personal can do to deal with crohns. Reading your post, you seem like a very strong person so you should be proud of yourself to be able to endure the things you have.

Kudos!

 

[Hexie]

Thanks! I've got fantastic parents who have kept me going and a partner who helps me to stay strong no matter what happens.

 

[Snap]

Hello Shelli!

Welcome Shelli! What an amazing story! You have been thru so much, girl. You are quite an inspiration. By the way, is your Crohn's in the small as well as large bowel? Yeah, those extra intestional manifestations can be quite evil, as you obviously know. That's how my Crohn's started---I had erythema nodosum nodules on my legs--and I saw a dermatologist. No formal diagnosis until 3 years later when all you-know-what broke loose. Are you following with an orthopaedic surgeon for the osteo? Please keep us posted. What other meds? Take care and keep going (which you obviously do because you are a "toughy"). :rosette2: Dana

 

[Hexie]

Hi Dana

My Crohn's is in both small and large - I never do things by half believe me!
I had major surgery in August last year to cut the infection out of my leg - still have 2 large holes left there at the mo and my surgeon is keeping a close eye on me. I've got his direct number should I need him at any time - he's wonderful.
Meds are Azathioprine, Prednisolone, Celebrex, Sertraline (for depression), Tramadol and Morphine patches for the pain of arthur and osteo.

 

[Snap]

Hey Shelli---so glad that you have surgeon's number---there are some wonderful Dr.'s out there. My Crohn's Dr. is AWESOME--started going to him in 2008. Just wish they could get your belly to settle down---what's the game plan for your belly--just keeping their eye on it while leg does it's thing? Hoping that leg will heal, too. I'm getting ready to go to bed after getting my boys ready for bed---but I'll be keeping tabs on you for sure. Hope you can feel good one day---sooner rather than later.
:Flower: Dana

 

[Hexie]

Hey Dana
My original Crohn's doc was excellent - he even had all the horrible tests that we go through just so he'd know how we felt. When I was SO ill and fighting for my life he went to London and back in one day to get advice on how to treat me. He's saved my life twice and I owe him alot. Unfortunately he became ill himself and I've had a succession of Crohn's docs since and they've not been anything like him.
My current one is pushing for me to have a colonoscopy and I keep refusing - I KNOW that as soon as he disturbs my Crohns it'll get much worse and I don't want it getting worse as I'm dealing with the way it is just nicely right now. He doesn't understand the 'if it's not broke don't fix it'. I mentioned him to my surgeon and he can't see why I need that test when I'm handling my symptoms really well on my own - as he said the only person who knows my body is me and I know how I feel.
I just wish the docs would listen to me sometimes - I KNOW my body and I KNOW what works and what doesn't so why argue with me about it? GRRRRRRR
I really hope no one has a doc like that cos it's a pain in the you know where

 

[xJillx]

Hi Shelli and welcome! You are right, when you are first diagnosed, you aren't told about all the other things that comes with a Crohn's diagnosis. Luckily, we have places like our wonderful forum where we can educate one another.

I am glad you decided to join the forum. It seems like you have a lot of experience, and I am sure you'll be able to offer some valuable information.

Once again, welcome to the forum!

 

[Angrybird]

Hi Shelli and welcome :hug: I think it is amazing that you have gone/are still going through so much but still manage to be cheerful, well done you :worthy: I totally agree about the scope - why have one if the tummy is settled at the mo?? It is definetly a case of concentrating on the leg and trying to get this sorted, I am keeping everything crossed that they can do this for you. It is such a shame about your GI, he sounds like such a wonderful person. I am glad you have a good surgeon on your side though. Really pleased that you have found us and hope to see you around the forum

 

[Hexie]

Hi Angrybird - thanks for the welcome. I stay cheerful as I've always been told there's plenty of people worse off than you and that's stuck with me. No matter how bad I feel I know that someone's going through more hell than me.
I just wish my Crohn's doc would listen to me - I'm only having a bit of tummy trouble as I had a horrendous stomach bug and it's taking a bit of time to get over it. I see him in about 8 days time so there could be a major argument as per usual.
The leg is going along ok - I just have to hope and pray the infection doesn't get into my blood stream - if it does then it's goodbye cruel world as there'll be nothing anyone can do for me. Hey ho.
Personally I think I've been lucky - I've never had any surgery for the Crohns - just the arthritis that came with it.
When I had the osteomyelitis diagnosed I was told I would probably lose my leg (this was before I consulted my surgeon), so I just laughed and said call me stumpy then! And with my 2 holes in my leg, I keep saying call me Saint Shelli cos I'm holey - geddit!
I try and treat it all with a laugh and a positive mental attitude and it seems to work on the whole - either that or I'm insane!

 

[Mountaingem]

:welcome:Hey Sheila! Glad you found us, you sound like one tough cookie after all you've been through.

 

[Hexie]

Well it's yet to be proven that I am insane :runaway:

 

[Mountaingem]

:lol::rof: Me too! That's my story and I'm sticken' to it!

 

[Hexie]

Right with you there Mountaingem :ybatty:

 

[Hexie]

Well an update on the visit to my Crohns Doc

I had to wait almost 2 hours after my appt time to see him - was not impressed with that.
My mum came in with me, we noticed he had the colonoscopy forms ready to fill in. It was good she was there cos she could back up what I was telling him.
6 months ago he told me that Azathioprine would give me bowel cancer so I needed to change my meds and I had to have a colonoscopy.
This time he told me that 'recent research' shows that Azathioprine isn't a cause for bowel cancer and is effective at preventing it! So there was no need to change any of my meds. And he actually admitted that he can't see the point of me having a colonoscopy when everything is going well on the Crohns front. He hasn't ruled one out at a later date but both my mum and I stressed that I wasn't having one until I needed it. He wasn't too happy about that but I told him 'my body, my Crohns, my decision'.
I don't think he's used to any of patients standing up to him - he'd better get used to it with me!

 

[Angrybird]

You tell 'im girly!! So how have things been left? Do you just go back for a follow up in a few months?

 

[Hexie]

I'm Cornish and we don't back down that easily and I WON'T tolerate him telling me how to deal with my Crohns.

He's asked to see me in 6 months to a year but if there's any problems then he wants me to call him - which I will do anyway