Newbie - doin the best I can every day

[Petra1991]

Hello all

Long story short - My late mother was diagnosed with Crohn's when she was a little older than myself (I'm 19) and lived with it her whole life until she died from brain cancer, and after some majorly bad bouts with constipation my first year of college (just finished that year up) living away from home, I was finally sent in for a colonoscopy and was diagnosed with Crohn's on the spot. Supposedly it's Crohn's with constipation but I'm not so sure on that one given how my body has been acting lately.

...that story was longer than I expected.

The diagnosis wasn't the best thing in the world that I wanted to hear (espically because right after I got the call, I had to head straight to work - and I cry easily) but I'm still trying to live my life best I can, go to work and all that fun stuff I found this site and thought 'hey, its a support group AND forum, why not check it out?' I hope I can make friends here, as I can't exactly go to my mother and ask her how she lived with the disease.

All I've ever found on the internet with quick searches were some stories of very severe cases of the disease which of course scared me half to death, so I'm hoping that I'm able to hear some not so severe cases here and just be able to have people to relate with!

Sorry for the very long introduction~!

 

[Nyx]

There are some scary stories on here, and some hopeful ones. Welcome to the forum...

 

[DustyKat]

Hi Petra. I don't have Crohn's but my 18 year old daughter does. She is in her first year of uni and is also living away from home, so lots of similarities there. I'm so sorry about your Mum. Welcome to the forum.

 

[Entchen]

Hi Petra, and welcome!

 

[ChefShazzy]

Hi Petra; The forum is such a great resource, so glad you found us. There are all kinds of stories here, a range of mild, moderate and severe symptoms. I'm sure you'll fit in just fine! Are you currently on any medications?

 

[MapleLeafGirl]

Welcome Petra. You'll love the forum, it is a great place to get support and ideas!

 

[belle1999]

Welcome, Petra!

 

[terri_ann87]

Welcome, Petra!

Although we all have bad news stories about our Crohn's some people really can lead almost normal lives.

My cousin also has crohns and since his bowel resection 3 years ago he has been great. He is currently in the french Alps with his girlfriend canoeing, hiking, paragliding alsorts of active things that 'i can only dream of.

I managed to do 3 years at uni but it was a struggle at times. The key I found was to keep my personal tutor up to date about what was happening.

I'm just hoping one day I will consider exciting days out before thinking if there will be a toilet in close range!

 

[Astra]

Hi Petra
and welcome

Try not to be scared, I know that's easy to say but don't fret over horror stories! There is lots of positivity here too! It's all too easy to get bogged down with info, try and relax, you'll be able to manage this over time, and this forum will help you too! And you'll make lots of friends and cyber mums too!
Lotsa luv
Joan xxx

 

[Regular Joe]

Hi Petra,

Welcome. There are indeed a few horror stories. Let me give a worst case scenario that happened to a girl who I know personally. What happened to her doesn't usually happen to most of us.

She's had the disease for 25 years now, she's almost 50. She had a proctolectomy and is fitted with a stoma. She's also had recurring flares that resulted in 2 or 3 small bowel resections. She was diagnosed when information flow/sharing, technology and awareness were much less than today. She's had pretty rough way to go.

The point is I've known her for a couple years now, visited her and cheered her up in the hospital whenever she had to be there, and I recently adopted her furball kitties.

In the 25 years she's had Crohn's disease, she's had long periods of remission. She had one son after her proctolectomy, and adopted another son. I've met both of them and had fun together. She's a tall, attractive redhead with steel-blue eyes, an excellent cook, slightly overweight because she still loves to eat and entertain, drives a new Ford Fusion, and is pretty much a fun "everyday" lady. If I didn't already have a super-sweetheart with Crohn's, this lady would definitely be on my "short list" - she's another "Crohn's hottie". We've had a lot of fun together, and I helped her cook for a big family event.

What I'm saying is even "worst-case-scenario" situations, having as much surgery as possible with this disease, this girl knows how to "live" which means more than surviving.

Our disease has many names and faces, and comes in one heck of big variety of sizes and ranges. What many of us here have found out is we can certainly still have fulfilling lives with Crohn's disease. The keys are staying informed, diligently making physical AND mental health a top priority, and finding and developing a strong personal support network - which often means LOOKING beyond family and keeping negative influences (people, places, and things) at a distance.

Good luck

 

[belle1999]

Well said, Regular Joe!

 

[Guest]

hi Petra, welcome to the family

it's true there are people who've suffered greatly with this condition, but there are just as many, if not more, who manage to live with some normality and lots of enjoyment too. i would say that you're lucky to have received such a quick diagnosis, although it's a shock to hear that news at any time, especially as you'll have seen your late mum go through the trials with it.

you can do a lot of things at this point to give your body the best fighting chance against Crohn's getting worse - relaxation and avoidance of stress as much as possible is one thing, a good nutritious diet, taking out culprit foods which you've noticed upset you, a restful night's sleep regularly, and if you smoke - try to give up.

i'm really glad you've joined us - this forum is a treasure trove of information, advice, tips and experiences, and i'm sure it will help you - plus everyone here is very kind and friendly, and we love new friends joining us

 

[Dexky]

Wow, Joe I hope that helped Petra as much as it did me.

 

[MisB]

Hi Petra. So many good words, some I really need to hear myself. I'm glad you're here, and hope to see you around on the site. I've only been on for a few weeks and it's been a great help. I hope it is for you, too.
I don't know if this will help you, but I was not diagnosed until the age of 43 although I've had symptoms for years. Once diagnosed and treated, I stayed in remission for 5 years until this recent flare. Although this has been a rough one, it's slowly getting better. And I know if I do what I'm suppose to, this too shall pass. Crohn's is considered chronic, not terminal, and life inbetween flares can be pretty sweet.

 

[CodeBrown]

Welcome Petra! This is a great place for support! My theory is that life is what you make it...I choose not to let Crohn's ruin or run my life...I just work around it and be as productive as possible (yes I have had to make some lifestyle changes).

I have found this place to be a godsend! Some of the stories on here are scary, but it has helped me put things in perspective. I thought I had it bad until I read those horrible stories...then I realized, I should be thankful my disease has not progressed to that point and to stop feeling sorry for myself. I have also learned that if it does progress to that point, then I will deal with it...thanks to all the courageous stories and Crohnnie pioneers who have navigated this disease before me! The humor here is also uplifting...not everyone appreciates potty humor!

I hope you get the support you need here...I know I sure have!

Tammy

 

[Silvermoon]

...All I've ever found on the internet with quick searches were some stories of very severe cases of the disease which of course scared me half to death, so I'm hoping that I'm able to hear some not so severe cases here and just be able to have people to relate with!...

Well the cases where people live life normally are just not all that exciting to read on the internet! LOL!

Sorry... I am kidding!

On a serious note... yep! Very scary stuff out there... people can even die from complications of Crohn's.... but the healthiest person in the world can die stepping out into the street at the wrong time and getting run over by a vehicle. I am one of those believers that life is what you make it, and when it is your time, it is your time. I have had a few near-death experiences in my life... some related to Crohn's, some self-induced. I figure who ever is in charge of things out there has a plan for me, if I am still here... lol :redface:

You will meet and/or read about a lot of different people here... like Joe said. Some of us can't loose weight for whatever reason, some of us can't gain weight... some of us in pain all the time.... some us us are not in so much pain, but can't get off the dang toilet!! I think you are about 10 steps ahead of a lot of us, in that at least when you were diagnosed, you had heard of Crohn's. Some of us don't have a clue!!

I hope you find the support and answers you need here... and welcome.

 

[Regular Joe]

Well the cases where people live life normally are just not all that exciting to read on the internet!

Priceless! Thanks Silver!

 

[Petra1991]

Gah so much to reply to!!! I used to know how to multi-quote on forums with this setup but I can't remember how...(actually, I don't think multi quoting is enabled...)

So...erm, until I can get around to thanking everyone individually, thank you all for such a warm welcome

I'll admit half of the welcomes on here I couldn't understand because I'm not "hip to the lingo" (I don't know if I just aged myself or not with that one) but I hope I can learn more!

 

[GoJohnnyGo]

A warm hello to Petra and others who are new to the forum!

 

[superbloop]

Hello there, I`m new as well, my friend`s grandfather has had the disease his whole life and said once he got on the right medication he was able to live a healthy, normal life. I think you have to go through the process with your GI, get the right tests and medication and make sure you maintain a stress free environment. Your only the diet and exercise in your life will change, you will find out what foods go well with you and which ones you have to avoid. I saw a naturlist to help me, but I hear different foods trigger different symptoms with different people(yes I know that`s a mouthful). Anyways I think you just have to stay positive, exercise regularly, and make sure you`re getting all your nutrients from the foods you can eat. You`ll be alright, and who knows you may be able to get off your medications with all the changes you make, eventually.

 

[Petra1991]

Hello there, I`m new as well, my friend`s grandfather has had the disease his whole life and said once he got on the right medication he was able to live a healthy, normal life. I think you have to go through the process with your GI, get the right tests and medication and make sure you maintain a stress free environment. Your only the diet and exercise in your life will change, you will find out what foods go well with you and which ones you have to avoid. I saw a naturlist to help me, but I hear different foods trigger different symptoms with different people(yes I know that`s a mouthful). Anyways I think you just have to stay positive, exercise regularly, and make sure you`re getting all your nutrients from the foods you can eat. You`ll be alright, and who knows you may be able to get off your medications with all the changes you make, eventually.

I'm worried about that whole 'stress free lifestyle' part of all of this. Because that could easily mean that I'd have to quit my job (I don't know how much more stressful you can get than fast food)

 

[Astra]

Hiya Petra

No you won't! you can do this!
my job is sooooooooooooooooooooooooo stressful! I teach kids with ASD, and it's sooooooooooooo exhausting and challenging, and I've been there 13 years, and in time you will manage your 'stressful job' too. Worrying will worry you more, and stressing about stress will stress you more, (stress is such an over used word!)
Stress is a very serious condition that can take you to some dark places, with serious implications, your job shouldn't 'stress' you out, so if you do feel 'stressed', talk to your bosses and tell them about your condition and the seriousness of it.
hang on in there, I have faith in you, chillax!
xxxx

 

[Silvermoon]

I totally agree with Joan on this one!
I am a public health nurse in Northern Alberta, and many days we run, run, run!! Days spent at the school on the school health program can be extremely exhausting! Those are the days you go home after work and make hubby or whoever do things for you so you can sleep! lol.
One of my GI nurses gave me a book of sayings one time... the title keeps me going and keeps me sane:

"Don't sweat the small stuff; and it's all small stuff!!"

PS. I took up meditation a few years ago... there's alot to be said for deep breathing exercises!

Wishing you all the best!

 

[Petra1991]

Astra101: (first off can I say I love you because you're from the UK? I'm in mad love with that country and really hope to visit some day! *London is probably the area I love the most) Back on topic now! Thanks so much for the comforting words Now that I think about it school probably stresses me more than work does, and I don't work during the school year so the stress level isn't as high. I do believe I'll live!

Silvermoon: first off, thank you for being a nurse (public health? That's a Canada thing isn't it? -yes I'm curious heh, blame the hormones-) I've been trying to get back into exercising lately (as much as I can with a Nintendo Wii) and always exercise when I'm at school (we have access to a gym/health center during the year and summer too) but I should give meditation a try!

 

[Silvermoon]

Silvermoon: first off, thank you for being a nurse (public health? That's a Canada thing isn't it? -yes I'm curious heh, blame the hormones-) I've been trying to get back into exercising lately (as much as I can with a Nintendo Wii) and always exercise when I'm at school (we have access to a gym/health center during the year and summer too) but I should give meditation a try!

lol Petra...not sure if "public health" is just a Canada thing... public health professionals specialize in immunizations/communicable diseases, such as mumps, measles, and the dreaded influenza viruses...lol. But we work alot with health promotiona nd illness prevention. So food safety, drinking water safety, prenatal classes, nutritional teaching, and general healthy living. Most of time is spent out in the community working with community members to improve their health choices and lifestyles, rather than in hospitals taking care of us "sickies"!! LOL!

It's a very different type of nursing , but one I thoroughly enjoy!!

And yes, I found school/university way more stressful than work. I, thankfully in the nursing program, had some extremely understanding professors who helped make life bearable. I was also fortunate enough to have parents who had good jobs, so I was able to extend my 4 year degree to 6 years, making my course loads a little easier to handle.

I know it seems so very overwhelming now. You will have good days and you will have bad days. Just remember that there are people out there who have been through what you are experiencing, and hopefully can give youthat support and hug you need when you need it.

(((((((( Petra ))))))))))

 

[Astra]

Astra101: (first off can I say I love you because you're from the UK? I'm in mad love with that country and really hope to visit some day! *London is probably the area I love the most)

:ycool: (pretty crap at footy tho!)

That's so sweet, thanks! Hey, guess wot? I've never been to London!
But, Liverpool? now ya talking!!
lotsa luv
your cyber Mum, :ylol2: