A Newbie - Stuck in Limbo

[Megs]

Hey guys and gals.

Me name is Megan, I am a 27-year old woman living in Adelaide, Australia.
I'm in limbo at the moment, and hating it

Timeline:

About 3-months ago, I returned from my honeymoon and I knew something wasn't right with my body. I was massively bloated all the time and had no appetite, but being very stubborn I ate anyway and the pain and discomfort worsened.

A month after this, I was admitted into hospital with acute chest pain - the doctors thought that I had a blood clot in my lung however on CT nothing was found. I remained in hospital for a few days on blood thinning medication and was sent home. Upon returning home, chronic diarrohea started - on consumption of any food I had to rush to the toilet and gush out pretty much fluid (sorry for the TMI!). I know have haemarroids around my anus which are itchy as hell

Last week, I got the worst abdominal pain and was in hospital again. Upon arrival I was sent for an X-Ray which showed that my intestines were blocked and there were fluids in my abdomen. I had a CT scan which showed inflammation in my intestines and this is what the doctor triggered his thoughts on Crohn's. The pain was so bad I was on morphine and I was throwing up, but as soon as I had a bowel movement, the pain subsided.

Today I had a conoloscopy which appeared normal - WTF? I just don't get it.

Although at the moment I am not in pain, I am living in fear of eating anything... I am so scared that having something to eat will put me back in hospital with that pain again, it was exrutiating and felt like my insides (guts) were twisting on itself. I haven't lost weight, but I put that down to being stubborn and forcing myself to eat even though I have no appetite.
I have been tired and feeling exhausted for what feels like an eternity and I must admit that my memory, or my concentration levels just aren't what they used to be

So now I have to wait until the 26th for a follow-up appointment at the gastroenterology unit at the hospital... and I just don't know what's going on. I feel like they're going to tell me that it's all in my head and there's nothing wrong, but I know that something's not right.

I just need somewhere to vent, and as much as my husband, friends and family are supportive... I feel like an idiot because they don't understand. But not only that, I haven't been diagnosed, so I feel like I am talking about something that very well could turn out to not be what I have... I'm just scared that this nothing, and I so desperately need it to be something so I can take the right steps into feeling normal again

Does this at all echo anyone else's experience??? It sounds like everyone has been messed around to some extent. *hugs*

 

[reidyjo81]

Hey,
Sorry to hear your having such a hardtime with this, it is not a nice experience. It is so very hard to diagnose Crohns and it took well over a year for me to get results. I had the very same symptons and used to get docs asking me if I was pregnant, I was young at the time !!!! I totally understand your frustration and worrying. I know the worst part is worrying that will come back with nothing, and if they don't you have to fight them for answers, this is stressful but worth it in the end.

Keep us updated and hang in there. Jo xx

 

[DustyKat]

G'Day Megs and :welcome:

Does this at all echo anyone else's experience???

Oh boy yes, in one form or other. You are sooooooo not alone in symptoms and tests contraindicating each other and the resulting confusion, frustration and fear. You have found a brilliant place here to vent your frustrations, voice your fears, ask questions and receive great advice and information. Welcome aboard mate and I look forward to seeing you around.

Take care, :hug:
Dusty

 

[TLC31]

hi hun im in the same place as you at the min.
everything you say is me.
so you have constant back pain to??
the tiredness is horrible isnt it? i always forget things now and find it hard concentrate so get headaches to.
i also have not lost much weight a few pounds but like you im stubborn and eat as i love my food.
im having a xray done on the 27th this month so hopin to find out the problem then. they have said they will look for immflamtion and take biopsies. if its clear they said it could poss be ibs.
have you looked in to ibs?
im same as well i dont want it to be something but need it to be something so i no its not in my head and can get treated for whatever it is and start feelin well again. its horrible bieng stuck in limbo..hope you find the answers soon. x
tra xx

 

[Crohn's 35]

Hi Megs, welcome to the forum, if it is help you need you will get it here, experiences from people who have been there done that.

I had the exact symptoms, and took a year for a diagnosis. Crohn's is so hard to detect for some of us. I don't recommend a pill cam if you are abstructing but a barium follow through is a better detection of narrowing, usually Coloscopies show more but for me it was never the case, even when I had Crohns symptoms and had crohns for years a scope didnt alway see it. Even biopsies have to be in the exact spot.

Don't give up on this, obstructions are so painful, morphine doesn't even touch my pain, when obstructing.

Btw it is NOT in your head, I even had surgeon to think that. Boy was he dead wrong. You need us, and we will support you every way we can.

Congrats on your marriage, now the fun begins. .

:hang:

 

[Astra]

Hi Meg
and welcome

hope you can relax and wait, you will have answers soon enough, there are many people who have had scopes for them to come back normal, there are other alternatives.
I really understand about the not wanting to eat, eat then become blocked again? not necessarily. from what I've been told, if you have narrowing where waste can't get thro, and you become blocked, a scope usually opens the narrowing, but sometimes the scope can't get thro!
I was blocked back in Jan, it's the most horrendous pain ever! more so in my back! I couldn't walk or move. I was put on Pred and was terrified of eating, ha ha ha within days I was eating the entire contents of the fridge, and I've not been blocked since
don't be afraid, they will find something, and it's not all in your head, it's real!
lots of support here for you
lotsa luv
Joan xxx

 

[Claire617]

Hey Meg, don't worry this place is a brilliant place to vent because so many people can actually relate and it's true when they say 'I know what you're going through'. My experience being diagnosed is quite different to yours but I hope your GI sorts it out soon, it is a very difficult disease sometimes and isn't the same with every person so don't go easy on your GI if they're TOTALLY incompetent lol
Take care of yourself and listen to your gut instincts *pun not intended but i'll leave it there anyway lol*

 

[bushydougie]

Hi Megan,
I totally hear what you are going through and know your frustration only too well. I too am without a diagnosis yet. I have also had both a colonoscopy and a ct scan and they have both been negative. Sometimes I feel that I am going a bit mad and I wonder if other people think I am making it up...
However I have started a low dose ofpred today so I am hoping and praying that this gives me some relief.
Hang in there. It's a really difficult time for you but there are many of us out there who understand and are quite happy to listen to a rant as we feel the same way too!
Look after yourself and check out all the posts on here. I have learnt such a lot already!
Sam

 

[ameslouise]

Hi Megs and Welcome!

I hope you get a DX soon - and some relief from the pain and D.

I have been on the forum about 5 months now and have learned so much and made some great friends. It's a very supportive, warn place to be!

Feel better soon!! - Amy

 

[Dexky]

Welcome Megs!! You've really found the right place. Every time I log in, I read a story similar to yours. Yours, Sams, TLC and Cat-a-tonic's and many more. Keep battling and keep us informed of your progress. I've seen some great advice given here about writing everything down so when you do see the GI next, you won't be short on questions. Good luck.