New and need support

[SillySam]

Hi Everyone!

I was diagnosed with Crohn's yesterday, although it wasn't that much of a surprise considering all the various things I've complianed to my doctor about, tests and complications I've had with a fistuala- my head is still spinning. The upside is I now know what's wrong with me, so I can tell my doctor I'm not a hypocondriac!

But I don't have family support, and I'm not sure how to talk to my friends about it. My friends are great, but I they're taking a very 'don't worry' attitude. My partner is very supportive, but it's a lot of pressure on a new relationship and I'm not sure he understands how this will affect our lives or what the disease is.

Part of me worries I'll be going through all of this alone, and I've already become isolated from being so tired and in pain. I have 2 year old son, so I've been finding it hard to take care of him, or explain why I haven't been around as much (due to hospital stays)

I feel pretty much like no-one understands, and for the first time when something's gone wrong I actually want to talk about it. Even when I got my diagnosis the doctor was very brief- he said I had crohn's wrote a letter to a specialist and shook my hand.

So that brings me here, perhaps talking to others with the disease will put things in perspective and not make it all seem so scary. Or perhaps anyone can give me advice?

 

[sawdust]

Hi Sam. Welcome to the forum. Sorry to hear that you're hurting, but at least you now have a diagnosis and that should help your doctors better treat you.

Regarding your support network, I can tell you what my experiences have been and, hopefully, it can help you decide what's best for you. When I first got diagnosed, my family and friends knew I was sick, but once I actually had some details about Crohn's, I wasn't exactly enthused to tell them about it. So, I kind of suffered in silence and I gave away as few details as I could get away with. People close to me lacked all my "gross" secrets, but didn't understand me either.

Having recently flared again, I tried a different approach. I told my close friends and family nearly everything that was going on so they understood better, and that has made a positive difference to them and me. I have found that people who don't have IBD can't know exactly like you do, but they can have a better idea than I originally thought. I told them what was happening, how it would be treated, and what people could expect of me at different times. It was a relief. Having them know these things let me be semi-social in a flare as well, where before, I'm sure I seemed distant and unreliable. People were able to suggest things that would line up with what I could do, could eat, and places I could go. This wasn't the case before.

And, I found this forum, where I can read and discuss things with other Crohnies, which has been a great help. We all understand like those close to you may try, but can't. You can't help anyone you know understand if you don't understand yourself!

 

[xJillx]

Welcome Sam! Even though I am blessed with a very supportive family, I still feel alone sometimes because they don't exactly know what I am going through. It is difficult dealing with a chronic illness day after day. But we understand! I find this place an excellent source of information and support. I hope you do, too! I am glad you found us!

 

[Astra]

Hi Sam
and welcome

Hope you find some comfort here with us, we understand!
Any questions, fire away!
If you need to vent, rant or rave, do it here, nothing is TMI!
Lotsa luv
Joan xxx

 

[crohnicaly stinky]

SillySam welcome! You've come to the right place. friendship, support and lots of information. We've even had folks post pictures of their poo just to get an opinion! LOL! Now if that isn't support, then I don't know what is!

So make yourself at home, there is always soemone here for you!

 

[Crohn's 35]

Hey Sam, :welcome: so glad you found this forum. I wished when I was first diagnosed in 1993 this site and computers were available. Little was known and the lastest and newest drug was Entocort. So many things have changed and it is not taboo her to talk about anything. Ha, even my original exploratory surgeon thought it was all in my head, but thank God for my first Gi , he proved I had crohns. There is alot of info here, and support you will get. Support is so important because depression happens alot with people. Why dont you have family support, none? Friends will never understand because unless they have had something chronic they wont be able to relate. It is like having a bad and painful stomach virus and being in labour for severe times or obstructions, only way to explain it. Many people will share with you , their advice and experience, tho we are not doctors, we know your pain! Welcome aboard!

 

[Droopy Drawers]

Hi, Sam & welcome !

I'm new here too.

I've had tummy troubles since I was a kid & have been told I have colitis.

The last few years a whole new set of symtoms have knocked me off my pins & I finally switched my GI Doc. so, it's back to the start with all the tests for me.

Many People think I'm anti social, but I'm not.
Sometimes I hurt so bad, I just want to be left alone.

I feel very much welcome here as I know I'm in the company of others who fully understand.

 

[skaur]

SillySam welcome! You've come to the right place. friendship, support and lots of information. We've even had folks post pictures of their poo just to get an opinion! LOL! Now if that isn't support, then I don't know what is!
So make yourself at home, there is always soemone here for you!

Thats awesome!!!

 

[AndiGirl]

Hi Sam! Welcome, you are among friends. Getting a diagnoses and treatment is half the battle. When you are having troubles, or need a little diversion, we're here at the forum for you.

 

[Ari]

Hi Sam and Welcome to the forum mate. You'll find loads of support over here. No doubt. Glad you've found us.

 

[SillySam]

Thanks everyone

Yesterday felt so bleak, it was nice to come back to all these responses
Thank you all for sharing with me.

I'm finding that everyone I try to talk to wants to change the subject- as if there's no sense in talking about it! (ie ''don't upset yourself''.. which just leads to me beinig alone when I'm upset) I'm being greeted with ''cheer up'' and ''feel better''... and although I know these phrases are well meant- it puts pressure on me to cheer up... and I feel worse when I can't. I feel awful for being so depressed.

I know I have one friend who'll stand by me through the bad days. I've been honest with her, as you've all suggested, and told her that I was sorry all along for being vauge when I broke off plans. She says she'll make more of an effort to come to my house. I'll just have to wait to see if my family and boyfriend come around to talking too.

Still, its a releif that I no longer have to be superwoman- I can admit I'm not up to something now- and not have everyone remind me I'm only 23, not 60.

 

[e13 boy]

Hi Everyone!

I was diagnosed with Crohn's yesterday, although it wasn't that much of a surprise considering all the various things I've complianed to my doctor about, tests and complications I've had with a fistuala- my head is still spinning. The upside is I now know what's wrong with me, so I can tell my doctor I'm not a hypocondriac!

But I don't have family support, and I'm not sure how to talk to my friends about it. My friends are great, but I they're taking a very 'don't worry' attitude. My partner is very supportive, but it's a lot of pressure on a new relationship and I'm not sure he understands how this will affect our lives or what the disease is.

Part of me worries I'll be going through all of this alone, and I've already become isolated from being so tired and in pain. I have 2 year old son, so I've been finding it hard to take care of him, or explain why I haven't been around as much (due to hospital stays)

I feel pretty much like no-one understands, and for the first time when something's gone wrong I actually want to talk about it. Even when I got my diagnosis the doctor was very brief- he said I had crohn's wrote a letter to a specialist and shook my hand.

So that brings me here, perhaps talking to others with the disease will put things in perspective and not make it all seem so scary. Or perhaps anyone can give me advice?

Hi Sam

On this forum you will find many people who understand everything you say.When i was diagnosed 13 years ago i was 29 it turned my life upside down.Some of my family were first class which i've never forgotten,but not all sad to say.Trying to explain to friends was very difficult as with any illness people shy away with comments like 'your alright now tho' 'cheer up'.They simply had no understanding.I felt very isolated and i kept most of my problems to myself as i didn't want to keep moaning(which is just not me).The consultant i was under back then never once told me anything about CD.Not until 3 years ago did i meet a consultant who spoke to me about everything to do with the illness.On this forum you can speak your mind in a way only a CD patient would understand.

If you still have problems with fistula i hope you get it solved ASAP( i had 2 cut out).
Despite suffering for many years i now lead a great life.You will find another forum member (Helminthic Therapy), who like myself, went to hell & back. We both looked for 'alternative' help and had life changing success.
Wish you well.

 

[SillySam]

e13 boy
-If you still have problems with fistula i hope you get it solved ASAP( i had 2 cut out).-

I can't have mine cut out as it's right next to my sphincter muscle.
Thanks for sharing. I've been in tears for the last two days, trying to find anyone to reach out to. I think I'm going to lose a lot of people, but hopefull those who stay will be gold.

 

[carrollco]

Hi, SillySam:

You are not alone and it's perfectly OK to feel the way you do. It is very difficult trying to explain to others what you are going through. When you're in the bathroom, hugging your knees, and moaning, the only thing you want is to be left alone. I have one bathroom set aside just for my personal use. If they hear me, they know to leave me alone while I wait for the cramps to pass. Sometimes the burning is so horrible you just have to fade into that part of yourself where you find comfort and pray that when you wake up the pain will be easier to take.

Hang in there. Hopefully your flare will pass and you will be back on top. I'll keep you in my prayers.