• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Hi I'm a newie

C

Cheshire cat

Guest
Hello everyone, my name is Emmy. I'm cheshire cat on account and I always have a big smile on my face (which can work against you when your trying to get people to take your suffering seriously). I'm 23 and married to an amazing man called Russ, he his the most understanding guy on the planet. I'm presently training to be a vet nurse but circumstances with my health had made it a struggle. Not everyone has been understanding and it has been a real embarrassment out and about.

I've been suffering with this illness for over 20 months. I became very ill after having an ovarian cyst removed, I had fever, severe abdo pains and diarrhoea. But naturally they assumed it was all to with my ovaries and not really looking anywhere else. For the following months my condition worsened, ridelled with infections and being pumped full of antibiotics, I began rectal bleeding and vomiting pretty much all day long. The pain was the worst thing, I was on morphine pretty much all the time and not really eating due to being scared of how I was going to feel towards the end of my meal.

They then sent me to almost every department in my local hospital having tests for everything under the sun. During my hospitalisation it was mentioned that I had fluid collecting in my pelvis and abdomen, inflamation throughout parts of my bowel, the list goes on a bit. I was told it could be lupus, severe IBS, ulcerative collitis, crohns and was screened for cancer and other nasties.
Apparently my blood showed I had a high level of white blood cells and raging body temps.
Following a six month stint in hospital, I had a colonoscopy and was told it was crohns due to a large amount of inflammation, but shortly after was told they were not sure. I then had a endoscopy where I was told I had it again but then nope...... You start to feel like its all in your head. They were very hush hush.
My condition became worse and worse. I would have accidents where I couldn't get to the loo with the 5 seconds notice my bowel would give me. My husband and mum would have to carry me to the toilet and help me bathe. I haven't been strong enough to lift my head but refused to go back to the hospital. I was pretty out of it lifeless on the toilet after hours of severe diarrhoea and heavy rectal bleeding. My weight plummeted then lifted a little for a while but back down again. I look like the walikng dead. He would carry me to the doctors to see if they could do anything for the pain or help me keep something down. He has been my guardian angel.

My GP has been amazing, she can't understand how they have left me for so long. They couldn't give me any treatments due to them not being certain. I have been told that numerous tests have come back negative. My GP thinks it is crohnies. She has now referred me to a specialist in London and he promises he will help me. He wants to start from scratch, my biopsys from my past tests have disappeared so he wants to see everything all himself which is great, being passed from pillar to post makes you lose the will to fight and makes you lose faith in Doctors. I have an endoscopy and colonoscopy on the 22nd Nov so fingers crossed.:) Any suggestions would be greatly appreaciated, thankyou for reading x
 
hi Emmy!

awww you have certainly had it rough, you poor thing. here's hoping this new specialist in London will diagnose you once and for all, and get you back to a better state of health!

yes a lot of what you describe could be severe Crohns.. but it needs definite confirmation before anyone can say for sure.... i suspect many conditions can give you the bleeding, debilitation, and other symptoms you've suffered.

i'll be keeping my fingers and toes crossed for you for your investigations, and also for a positive outcome. all the very best Emmy, and please let us know how you get on.
 
Welcome Emmy

Welcome Emmy! :)

Oh my you have been through and are still going through so much.
I'm glad you are getting another opinion and have come to join us here.
Please keep us posted as to how things go with the scopes.

Welcoming smiles & Healing hugs, Nancy
 
C

Cheshire cat

Guest
Thank you all so much, you're all so kind. It's really lovely to be able to hear other peoples stories. I hope you are all feeling well and getting looked after the way you deserve to be. I'll let you know how it goes. Still smiling :)
 
Welcome to the forum, Emmy! What a great attitude you have. I sure hope you get a definite diagnosis soon so you can begin treatment and start to feel better. Hang in there and keep smiling!!

Lisa
 
C

Cheshire cat

Guest
Eveyones so lovely on this site. I've been reading through everyones stories and how long you all suffered with this horrible illness before they even diagnosed you. I've been sick for around 20 months and I'm worrying I've got some more years ahead of me before they actually decide what it is. I'm a very positive person but all this has really given me a physical and mental ass whoopin!
I'm considering bleaching my hair like Gwen Stefani to cheer me up. Either that or shave it :).
 
Hi Cheshire from one 'Cat' to another! ;)
Yeh, it's hard to deal with the diagnosis even tho it was a relief for me to to know what was wrong at last. I'm still having probs just dealing with all the tests and procedures and treatments..... feels like I've got no dignity left. :( But this site is great for helping you see others have been thru and got thru worse and coped, so it makes you feel you can too.
I like your sense of humor. I think you'll be fine Emmy - if you can work out a way to laugh and be positive, you'll get there. Take care.
 
C

catfud

Guest
CookieCat said:
I'm still having probs just dealing with all the tests and procedures and treatments..... feels like I've got no dignity left. :(
The feeling of having no dignity left can be a killer. ((hug)) I often get mixed feelings when reading these posts. Relief that we are not alone but at the same time sadness when reading about all the horrible things others have had to endure. I really don't like to see people suffer. :(
 
C

Cheshire cat

Guest
Thankyou all, your so kind. I'm on this disgusting stuff for prep of my colonoscopy and endoscopy tomorrow, it smelt like hot choc but was very misleading. I'm trying not to keep my hopes up for diagnosis,I'm terrified I'm going to be left again, I have very little faith in doctors. :voodoo:

Have you ever been made to feel like it was all in your head? I sit there and think, how can it be? I'm bleeding, I keep throwing up and I can't stop the pain. It feels like because whatever it is isn't clear they give up on you. Bloody hell am I depressing! I really apologise, I can't really vent this to my family as it just upsets them. I'm having a bit of a rough time in all aspects of life at the moment so my smiles come out in between me being pants.

I really hope that you are feeling alright through all you meds and being poked and prodded Cookie Cat, you sound like a very strong person and I'm sure it will only make you stronger x
 
C

catfud

Guest
This is exactly what these forums are for, a place where you can vent when things feel like they are getting on top of you.

This disease effects you both physically and mentally, I often have a hard time decyphering my emotions. Sometimes I feel like a rubber ball bouncing around the room at 100 miles an hour, I don't know whether I'm coming or going.

It's totally ok to feel depressed, the best thing to do is come on here and vent away to people who understand what your feeling.
 
C

Cheshire cat

Guest
Thankyou catfud thats really nice to hear. I think I'm just nervous about tomorrow. Was it a long period before you were diagnosed? I'v had positive results and then some negative, my body doesn't seem to know if its coming or going.
 
Cheshire cat said:
I'm trying not to keep my hopes up for diagnosis,I'm terrified I'm going to be left again, I have very little faith in doctors. :voodoo:

Have you ever been made to feel like it was all in your head? I sit there and think, how can it be? I'm bleeding, I keep throwing up and I can't stop the pain. It feels like because whatever it is isn't clear they give up on you. Bloody hell am I depressing! I really apologise, I can't really vent this to my family as it just upsets them.
Hey Cheshire, I know exactly where you are coming from there! It took years for me to get a diagnosis even though I've had symptoms most of my life. I was made to think it was 'just' IBS, it was all in my head & linked into the fact that I had anorexia. Even now on their ward rounds when the docs get together and talk at the end of my bed, the first thing they say is about my 'mental health history' of anorexia and depression. Like that has got so much to do with why I am in here! :confused2: I became anorexic for lots of reasons, but I think mostly at first it was a cry for help because my tummy hurt so much all the time and it was so easy not to eat. I was raised not to talk about 'toilet trouble', so I never did and my family isn't big on going to drs for 'every little thing'. I had to tell them somehow, so anorexia became the way.

And yeah like you I am scared of being told it was all a mistake and the docs will go back to blaming me. But my gastro doc says no way - all the ulceration and scarring in the Ileum and biopsies say Crohns and even if future tests show nothing then I still have it. You can't make up all those symptoms. So don't worry, OK?

Don't apologize Chesh. God, I understand. I know how hard it is when your trying to be brave and not upset everyone but you so need some support yourself. Just glad we can be here and help - this place has helped me thru so much. Keep reaching out and we will support you. Take care. Hope your tests go well tomorrow.

Gotta go as I'm starting to see double..... :ybatty:
 
Cheshire cat said:
Have you ever been made to feel like it was all in your head? I sit there and think, how can it be? I'm bleeding, I keep throwing up and I can't stop the pain. It feels like because whatever it is isn't clear they give up on you.
yeah i know where youre coming from with this. I was around 7 when i began the "getting diagnosed" process and around this time my parents were getting a divorce. so naturally, everyone attributed my tummy aches and complaints to the stress of the divorce. i honestly dont really remember what my thoughts on that were, all i knew was that i didnt feel good! it is so hard though to be told that your symptoms are just "in your head" or caused by your feelings. but you will get thru to the other side eventually!

agreed with the others--keep on venting! we all do it and can appreciate what your going through. ive found it very comforting to have a place to let your feelings out :)

best to you!
 
T

teamgo

Guest
I am sorry you have been so sick. I hope you get some answers soon!

I can relate to people thinking it's all in our heads, or that we are lying about the pain. These forums are great b/c everyone here understands what living with Crohn's is like.

Good luck with your colonoscopy!
 
C

Cheshire cat

Guest
I had my colonoscopy and endoscopy the day before yesterday. It was a pretty unpleasant experience but I'm glad I had it done, they found inflammation (yet again) and took loads of biopsies so fingers crossed these will be the results I've been waiting for.
Thankyou Cookie, kello and teamgo for your lovely messages. Its amazing how many people have to go through this saga, I really appreciat how kind you have been.
I was pregnant before I got sick but it wasn't meant to be, so all the doctors think I'm traumatised by it and thats the first thing they all think. I love my life and I know I will have a big family one day, it wasn't a nice thing to happen to anyone but I am absoloutly fine with it and I wish they would look at all these horrible stomach problems separatly.

keep smiling all of you I am thinking of you x
 
C

catfud

Guest
It took a very long time for me to get diagnosed too, Getting the usual brush off of 'its just IBS' You will probably find you come across that a lot. People who think they know whats best for you, or how you can 'magically' make it all go away by simply doing X or Y. These people don't understand, I burnt myself out and made myself very ill too many times trying to explain my condition!

The good thing about these forums is you dont have to waste energy on those people hehe.

I hope you get the results you are looking for *fingers crossed*
 
catfud said:
These people don't understand, I burnt myself out and made myself very ill too many times trying to explain my condition!

The good thing about these forums is you dont have to waste energy on those people hehe.
+1 +1 +1
 
C

Cheshire cat

Guest
Hello evrybod, I hope you're all feeling well.
I'm finding it amazing how evryone on this site has had these ever lasting horror stories, but I haven't met a single unkind or pesamistic person yet (i hope i spelt that correctly), your're all so strong and all this seems to have made you all the more determined, it really has helped me in so many ways meeting all of you. You've made me feel strong to, so thankyou :)

Do any of you know how long it takes for the biopsies to come back? I'm in limbo at the moment. I can't eat but all I can think about is candyfloss!
 

GoJohnnyGo

One Badass Dude
Well Cheshire, sometimes it's easy to be stoic when you're behind a computer screen. Similarily, it's just as easy to let one's fears run rampant.

I think most of us are in that in-between area in real life -- typing away on the forum just allows all of us to collect our thoughts according to our particular mood that day.

Hang in tight in the meantime. Waiting for test results isn't fun.
 
Hi Emmy!

A biopsy can take up to ten days to come back, depending on where it was sent.
You hang in there and in the meantime rest as much as possible.

A positive outlook goes a long way when you have this disease.

Healing hugs~Nancy
 
GoJohnnyGo said:
Well Cheshire, sometimes it's easy to be stoic when you're behind a computer screen. Similarily, it's just as easy to let one's fears run rampant.

I think most of us are in that in-between area in real life -- typing away on the forum just allows all of us to collect our thoughts according to our particular mood that day.

Hang in tight in the meantime. Waiting for test results isn't fun.
Yep, I agree with Johnny. I have my moments CC, just as everyone on here will have and I have cried more the past couple of weeks than I have all year I've got to say. But I find that being here helps me keep things into perspective - I know things could be worse as they are for some, but they can get better like they are for others. And it helps me if I feel I've helped others too.

At the end of the day, there isn't much point in wallowing in self-pity. You've got to get up and go on because life makes you. From what I've seen of you, you don't do too badly at it yourself. Hang in there.
 
Top