Don't know what should be my titile

Hi All

I'm typing this at work and also trying to stop myself from crying as i type.
I went in for a Colonoscopy on Monday as i suffered a very small bleed.
What my doc said should be just a routine safety check has now comoe out with me having further blood tests to determine if i have Crohn's disease.
He found ulcers which elluded him to believe it is in line with Crohn's.
I have been reading your stories on here, and googling all the symptoms etc and other than one small bleed which my doc even reported as being a hemmeroid, the only others i think i suffer from here and there are abdominal pains (feeling like gastro).

I am afraid.

If i am diagnosed i don't know if i can be as strong as most of you.

Tks for listening.

Hi Amenace and :welcome:

You know what, I reckon the hardest time of all is the waiting and not knowing. I think I was at my most scared with Roo when I knew something was wrong but it didn't have a name. Of course you are afraid and that's a normal way to feel and there is nothing wrong with a good cry.

We are here for you regardless of your title and we will be here for you as you embark on your journey. There are so many friendly and supportive people that you can talk to about how you are feeling, what to expect with tests that may be ordered or if you just need a shoulder to lean on.

Remember, regardless of the outcome we will be here to guide you on your Crohn's journey or cheer for you if turns out to be something less than you expected.

Take care,
Dusty

Hi Lola - I have just found your post! Firstly, welcome. You will find a lot of caring people and a lot of information here on Crohns. The other thing to know is that you are not alone! (You commented on my post earlier today - Recently Diagnosed - and I have responded).

I know it all seems pretty scary at the moment for you especially not knowing what your diagnosis is just yet. What I have learnt from this forum is that there are a lot of people who have Crohn's but also that it affects us all differently as well. With me, I feel blessed as I don't believe my situation is very bad compared to others.

I hope that you get a diagnosis of some sort soon so you know what you are dealing with - I hope that it doesn't turn out to be Crohn's but if it is, I'm sure your specialist will do everything they can to try and make you feel better. There is a lot of information out there and if you are like me, you are googling everything you possibly can about it.

Do you have the support of family and friends too? I have my wonderful husband who comes to my appointments so that he knows what is going on too and can understand it all too.

:hang: - and let us know how you go...

Take care, :rosette1:

hi Amenace, & welcome to the forum, although i am sorry you've had cause to join at all, if you know what i mean.

try not to worry too much - if you do have Crohn's, it doesn't sound too severe as you say you've not displayed many serious symtoms. like most conditions, the sooner it's diagnosed and treated, the better.

a diagnosis of Crohn's isn't a death sentence by any means... many of us continue to live normal lives, including working, having kids etc.. in fact in many cases, our quality of life improves after diagnosis and treatment.

whatever your outcome, and whatever path your results take you on, we'll be here for you - you're not on your own with this.

Hi Lola(saw your name on Vicki's thread), welcome!! I hope for your sake that whatever it is good news or bad, that you get a quick dx for it so they can do something about it. Some of the biggest horror stories I've read on here are people suffering w/o a diagnosis. Good luck and glad you're here.

:welcome:

Hiya Lola!

xxx

Hi there, Lola! First of all, here's a hug for you :hug: As others have said, Crohn's is very different for different folks. Here's a great post by kenny that explains what I'm trying to say a lot better than I can (it's from this thread:
http://crohnsforum.com/showthread.php?t=9469)

kenny said:

One thing that took me a bit to realize when I first came here is that all the stuff you read is a compilation of a lot of different situations. It's not like it is all going to happen to you. It is pretty much every thing that has happened to every different person here. Crohn's Disease is a very wide ranging issue that can effect people in very different ways so there are plenty of different stories here. Don't get overwhelmed by them all or the severity of some of them.

We all have our own personal struggle with this thing and for some it has been a long hard go. For most it's not so bad.

Hang in there and it will work out ok

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Let us know how you're doing, ok?

That's a good one, Sabrina

IT was overwhelming for me at the beginning too. I wasn't even thinking that I could have a chronic illness when I went into the hospital that first time. Though, all they told me was that I had a baseball sized mass in my abdomen and head to the ER and plan for surgery. I was thinking "OMG...I have cancer!" Turned out it was only an abscess, but now they were pretty sure I had some disease I had never heard of and there was no cure for it.

It was disheartening and terrifying for a while. And I cried many nights to my husband asking "Why me?" But some things I have gained since then are confidence, purpose, appreciation, and the best support system of people who really know what it's like to deal with all of this. Based on a lot of stories here and what others have said, my case doesn't seem to be as aggressive as some people's. I was hospitalized in December, diagnosed in February, and I am doing significantly better than I was 6 months ago.

If it does turn out to be Crohn's, there is so much information and support here! My best advice to you is to research research research. That really helped me understand what was going on and helped me talk with the doctors so I came away from my appointments with less uncertainty. Feel free to ask questions and vent on here as much as you want. You may feel redundant or annoying by asking all your questions, but it's normal. We were all at a place like that at some point

Best of luck on your journey! Keep us updated

Hi Lola, welcome, and I really feel for you. I am also currently undiagnosed (and I also sometimes struggle to not cry at my desk at work!). It's a scary disease to think about, and it's really scary to be undiagnosed and have all the "what ifs" running through your head. Let us know what your test results show, we are here to support you. Hugs!

Hi Lola welcome to the family! We know how scary it can be to learn of a disease you are not familiar with, even other illnesses like Cancer and diabetes others, we are aware of them but we have somewhat an idea, but Crohns lacks awareness. You maybe a lucky one and get it mild and or never bleed again. Was it red blood or black blood? Makes a difference. Lots of info here to help you lessen your fears , ask any questions, there is someone who is an expert on something. Hope are are ok, hugs.

if you have any questions, there is lodasa on here that will try and answer them, just ask away

It is all very scary and overwhelming at first. Don't worry, there will come a time when it won't be. Then you will have the odd day here and there where you feel overwhelmed but for the most part you learn to cope. You are stronger than you think you are - I have no doubt about that.

DustyKat said:

Hi Amenace and :welcome:

You know what, I reckon the hardest time of all is the waiting and not knowing. I think I was at my most scared with Roo when I knew something was wrong but it didn't have a name. Of course you are afraid and that's a normal way to feel and there is nothing wrong with a good cry.

We are here for you regardless of your title and we will be here for you as you embark on your journey. There are so many friendly and supportive people that you can talk to about how you are feeling, what to expect with tests that may be ordered or if you just need a shoulder to lean on.

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I couldn't agree more with Dusty, the not knowing IS the hardest thing. You will gain strenght. You are so very welcome in this forum xx

Your all amazing people, and i thank you so much for your responses.

It is the waiting that is doing my head in. It's all i think about 24/7. As soon as i get on the computer i google something and read the same results over and over.

I need to calm down.

I have a truly wonderful supportive husband who is the voice of reason when i rambling like a crazy woman.

I was at my mum and dads last night for dinner for my mums birthday, we were all there brother,sister-in-law etc and out of no where i burst out crying. My family are wonderful and supportive as well but even with all that around you it's amazing how alone you can feel.

Anyway i had better try doing some work.

Again thank you all so much for listening and responding.

I will let you know what the results were.

Lola

Aww Lola, I'm so sorry you're feeling so alone. It's great that you have a supportive family - that's going to help you a lot. While you're waiting for your results, do you think it would help you not to search google so much? Maybe you could wait until your husband/other family members are with you, and then read some info on a good informative site like ccfa.org? (I don't know if there's a crohn's and colitis foundation of australia). This page is helpful: http://ccfa.org/info/about/?LMI=4.0 If for a while you just do your research with someone else with you, I think that would help you not feel so alone - when you get worried about something you'd have someone who loves you right there to talk with you/cry with you.

((((hugs))))

I think your absolulty right and that i shouldn't be on google at all. I should just wait until i have been given the results. I just can't help myself but i have to try some self control.

Ok so i called my specialist today and spoke to the receptionist. I explained to her that i was booked in for the 13th of August to get my results and that if i had to wait that long i was going to go insane. She checked my file, and the results had already come in. She has pushed me in earlier thursday 29th July.

I asked if he would discuss them over the phone, she said he does talk to some patients but if he had to call them all back he would be on the phone consistently. She said she would get him to call me.

I wait impatiently. I am ridiculous i know.

Lola

Oh and Jettalady it was bright red. Specialist said it was a hemerroid.

InkyStinky said:

read some info on a good informative site like ccfa.org? (I don't know if there's a crohn's and colitis foundation of australia).
((((hugs))))

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Hi Lola - I have recently joined the Crohn's and Colitis Australia - and have received some information today. The details are below:

Crohn's and Colitis Australia
Freecall: 1800 138 029
Phone: 03 9815 1266
Fax: 03 9815 1299
crohnsandcolitis.com.au

Another website I found interesting was the UK Crohn's and Colitis website nacc.org.uk

I'm glad you were able to get an earlier appointment with your specialist too. Let us know how you go with it. I have my next appointment the day before yours.

Keep smiling!!

Sweetie, you aren't being ridiculous - it's totally normal to want to know what's going on with your own body. I hope your doc calls you soon so that you at least know what you're facing (he's your doctor and even if he doesn't routinely call patients you have a specific reason for wanting him to call you, so don't feel like you're being crazy!).

So glad Vicki posted that info about the crohn's and colitis foundation of australia. There's a time and place for googling things to gather all the info you can, but I really think that it's better to start with sites like ccfa because they'll give you accurate info and they aren't out to scare you or sell you a "miracle cure".

:hug:

Good luck with your appointment Vicky and thank you for the info. I had seen and also realise its probably the most reliable.

Thanks Sabrina, you words mean alot. Keeps me feeling like i am not going insane.

I went back to my parents house last night to have a chat. I could see that my mum and dad were concerned about me and i needed to let them know that no matter what results i was going to be ok.

Nothing like a few words of wisdom from your parents. Nothing like your parents arms around you to remind you that there are two people on this earth who will always love you and protect you as much as they can.

Honestly, have finally come to the conclusions that whatever will be will be. I will deal with it.

Amenace said:

Oh and Jettalady it was bright red. Specialist said it was a hemerroid.

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Whew, glad it wasnt something too serious, that can be cleared up.

My theory if a doctor calls you at home, to come in, it usually isnt good news, so I think you are safe to bet it should be ok.

Keep us posted.:smile:

Hi Lola
I am glad your results came in and the news was good. I am very happy for you. The wait and not knowing is the worst part. I know how that feels. take care and good luck

Hey Gypsigirl28

I haven't got my results yet, my GI has them and he'll let me know next week (thursday) so not breathing a sigh of relief yet. I personally think i have it.

I will be sure to let you know as i hope you do the same.

Good luck for you too.

Lola

Hi Lola,
sorry my mistake, I was reading all the comments and thought it said specialist said it was not. I apoligize completely and still wish you the luck it comes back ok.
We all know on here the waiting gets to you.
When we are waiting for results of my granddaughters bioposies, I break out in the hives for two darn weeks from the stress of waiting. Of course it dont help my own symptoms either.
I will be thinking about you and waiting on your news.
Rosemary

Thank you Rosemary, the stress is aweful hey. One minute you convince youself all will be ok and you can deal with anything, then next you read someone else's story and the very difficult time they have been though and think to yourself, wow is that what i am headed for.

I hope all is well with your grandaughter and i hope you also take caer of yourself.

Lola

Hi Lola,

Welcome to the forum.

Whatever your symptoms and diagnosis, if you allow fear to become part to your "internal voices", it will make a home within and make your symptoms worse.

A few simple things that can help you right now is to pay closer attention to your physical and mental health, zero in on eliminating careless eating habits (obvious things like high fat, nuts, seeds, popcorn), learn all you can about IBD (Crohns and UC) as well as IBS because that's not a pleasant condition and it could be a precursor to Celiacs Disease or IBD. Also keep negative people, places, and things at a distance.

Many of us here are miracles on two legs. The key to overcoming the disease is largely emotional, mental, and spiritual. Controlling outlook and disposition, as well as being proactive in treating IBD or IBS early on can improve the odds of living with the disorder/disease in its milder states. No gurantees, but always hopefulness. Acceptance and adjusting to the limitations of IBD and IBS can lead to a fulfilling life...sometimes more fulfilling than before because we learn to appreciate small things.

Good luck and welcome.
Joe

Lola, I'm so glad you had that chat with your folks - they sound just as wonderful as my folks :ybiggrin: Stay close to your family, and keep in touch with us, too :wink:

Hi Lola...I was just checking in to see how you are feeling this week. Good luck with your appointment on Thursday. Let us know how you go...x

:goodluck:

duck68 said:

:goodluck:

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Ditto!

Hi Vicky and Sabrina

Feeling good this week. Have tried to keep busy so as not to think about too much.

Am a little anxious and nervous but have prepared myself that i have it, so it's not going to surprise me tomorrow.

Yours is today right Vicky? Good luck to you too, let me know how you go.

:sun: Glad this week's going ok for you :thumleft:

Hoping your visit tomorrow is productive :hang:!

I agree 100 per cent. The waiting is torture.
I hope you get the results tomorrow.
Welcome to the forum
Wendy

Hi All

The waiting is now over. Have my results. My GI's professional opion is that he believes i have mild Crohn's but because my blood work came in excellent and i present no symptoms he cannot out and out diagnose me with it.

He explained all the medications (mild) that are an option but that he preferred that i manage it with diet so has referred me to one of the leading dieticians for Gastrointestinal Disorders to manage it.

He wants to monitor me again in 3 months, re-do my blood work see if there are any changes but said no need for a colonoscopy again unless i start presenting with some symptoms.

Am i happy about the result, i am neither happy nor unhappy.
It's a good kick up the ass to start really taking care of myself and i will be damn sure to turn my body into a temple.

Will it help? Don't know, will it progress? Don't Know? Will it go away? Don't know.

I have to tell you all though, that i never in my life had the privaledge of being comforted by a gourp of people such as yourselves. You are an inspiration to me, you are selfless and very special.

I am not going to post any more posts as i dont want to complain about anything small when there are issues going on on this board that deserve people time and attention.

I will however, come on and read and pass on all my postive thoughts to all of you.

xoxoxox
Lola

Ps: Vicky, how did you go?

Lola that's great news!

I am not going to post any more posts as i dont want to complain about anything small when there are issues going on on this board that deserve people time and attention.

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Nooooooooooooo.................post away! Issues are issues and it just may be that someone else out there is going through the same thing.

Great to hear you are going to hang around and keep contributing, YAY!

Looking forward to seeing you around,
Dusty

Amenace said:

He explained all the medications (mild) that are an option but that he preferred that i manage it with diet so has referred me to one of the leading dieticians for Gastrointestinal Disorders to manage it.

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Hi again Lola, I'm glad you got good news. Please do post what you learn from the dietician. I still cannot help but think that the right diet, once tweaked for individual results, would be extremely beneficial. We're not really selfless, we all learn from each other. Stick around!!!

Fantastic news Lola! I'm glad that you don't need to go on any medications at the moment. I would love to know how you go with the Dietician and would welcome any information there - that is one area that I'm very interested in. So please please don't go anywhere, contribute as much as you want!! :tongue:

My appt was ok...not much has really changed. The GI just said that it will all just take time for me. So I need to be patient - which I used to be really good at - lol - but not so now. I will be off the Prednisone on Tuesday - yippee - very excited about that...and then will see how we go.

Go back in another month.

On a very positive note, at the suggestion of my wonderful husband, I have booked to go on a cruise with my best friend in April next year (I have the best husband in the world - who is going to take leave from work and be a house daddy for the week I'm away) - so that has lifted my spirits immensely this week and taken my mind off other stuff. :mbh:

Now, to lose some of this excess weight!!

Take care Lola...and chat soon!!

Hey Lola - I'm so glad you have some answers at least. I know it's raised more questions for you, but for now I think it's super news that you can try modifying your diet before taking meds!!!!! :thumright: I'll have my fingers crossed that the dietician can help you!!! Like the others, I'm really interested in that (my docs don't have any advice about diet) so I'd love to hear all about it!

Amenace said:

I am not going to post any more posts as i dont want to complain about anything small when there are issues going on on this board that deserve people time and attention.

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I'm with everyone else --- Lola, you deserve to be here and have support just as much as any of us! Please don't feel you have to limit yourself!!! :Flower:

Hi All

I have my appointment with my dietician on Tuesday so will be sure to let you know what she suggests and what the general conversation is about.

Vicky, good on you. Go on your holiday, enjoy some girl time with your best friend. And yes your husband sounds beautiful!!!!!!!!!!

xoxox
Lola

Hi Lola - how'd you go with the dietician yesterday? Any good suggestions? Hope you are keeping well.

xoxo

Hi Vicki

Was pretty interesting. Again, there was not alot that she could specifically advise me on because i display no symptoms, am in no pain or discomfort.

She said that i may have had this for quite a long time and that in my case (which she has a many of) it may simply be that this is how it is going to be.

The foods that she has advised that i should stay away from are Garlic (damn, am Italian so that's sux we have garlic in EVERYTHING), Onions, Multigrain breads, Cabbage, Brussel Sprouts, Legumes (Suits me!!!!!), Watermelon, Apples, Stone Fruit and BAD FATS which hey i luv. Reason is to steer clear from gas producing products.

All the above isnt hard to live without and havent had a problem so far. Will go back and see her in 3 months at the same time that i go back for more blood tests to see if anything has changed.

I will be sure to keep you posted.

Whats news with you?

Do you have a msn address?

Lola
xoxo

Glad for your good news, Lola. Hope you are feeling better and that things can stay under control for you for a long, long time!

-Amy

Hi Lola - that's good information. Bugger about the garlic for you!! I'm upset about the stone fruit and watermelon! Haha.

All good with me - I'm off the Prednisone which is good. I just need to lose the 5kgs that I've put on in the last few months because of it...that is going to be my struggle.

I don't have an msn account (or if I did I can't remember my login) - I do have facebook though.

Vicki xx

Lola - I've sent you an email through this forum - hope you get it. xo