Share Facebook
Crohn's Disease Forum » Your Story » Newbie - doin the best I can every day


06-05-2010, 11:38 PM   #1
Petra1991
New Member
 
Petra1991's Avatar
 
Join Date: Jun 2010
Newbie - doin the best I can every day

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~!

Last edited by Petra1991; 06-05-2010 at 11:41 PM.
06-06-2010, 12:15 AM   #2
Nyx
Moderator
 
Nyx's Avatar
 
Join Date: Jan 2010
Location: Barrie, Ontario

My Support Groups:
There are some scary stories on here, and some hopeful ones. Welcome to the forum...
__________________
Cindy

Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

06-06-2010, 12:46 AM   #3
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
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.
__________________
Mum of 2 kids with Crohn's.
06-06-2010, 12:46 AM   #4
Entchen
Chief Dandelion Picker
 
Entchen's Avatar
 
Join Date: Mar 2010
Hi Petra, and welcome!
__________________
Dx: Moderate Crohn's in 3 locations
Doctor's orders: 200 mg Imuran
Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
06-06-2010, 09:22 AM   #5
ChefShazzy
Senior Member
 
ChefShazzy's Avatar
 
Join Date: Mar 2009
Location: Pointe Claire, Quebec
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?
__________________
-Sharon
_______________________________
Diagnosis: Crohn's Disease (May 2007)
Meds: Double-dose of Remicade, every 6 weeks
*I'm going to start saying I'm in REMISSION now! Three years since my last hospitalization!*
06-06-2010, 10:59 AM   #6
MapleLeafGirl
Senior Member
 
MapleLeafGirl's Avatar
 
Join Date: Apr 2010
Location: Hamilton, Ontario
Welcome Petra. You'll love the forum, it is a great place to get support and ideas!
__________________
Kelly

Diagnosed: August 2006
Current Meds: Imuran (125 mg), Budesonide (9 mg)
06-06-2010, 09:39 PM   #7
belle1999
Senior Member
 
belle1999's Avatar
 
Join Date: Feb 2010
Welcome, Petra!
__________________
Diagnosed December 30, 2009
Current Meds: Humira, iron, vitamin d, vitamin c, b12, multivitamin
Also have anemia and anxiety disorder

http://www.facebook.com/sarahbelle99
06-07-2010, 09:49 AM   #8
terri_ann87
Member
 
Join Date: May 2010
Location: Sheffield, United Kingdom
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!
__________________
Terri

Diagnosed Dec 2003 - aged 16.

Meds: Pentasa, Vit B12.

Previous meds: metronidazole, pentasa, azathioprine, 6MP, Budesonide, prednisolone, calcichew, Humira.

Peri-anal fistula leading to 4 minor surgeries, seton sutures and malecott drains - hopefully its about healed!

Right Hemicolectomy (45 cm removed) in Oct 2011
06-07-2010, 11:19 AM   #9
Astra
Moderator
 
Astra's Avatar
 
Join Date: Jan 2010
Location: St Helens, Merseyside, United Kingdom

My Support Groups:
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
__________________


Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




http://www.facebook.com/#!/profile.p...4208290&ref=ts

No-one should make you feel inferior without your consent!

06-07-2010, 01:14 PM   #10
Regular Joe
Senior Member
 
Regular Joe's Avatar
 
Join Date: Sep 2009
Location: Cleveland, Ohio
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
06-07-2010, 04:05 PM   #11
belle1999
Senior Member
 
belle1999's Avatar
 
Join Date: Feb 2010
Well said, Regular Joe!
06-07-2010, 04:44 PM   #12
Guest
New Member
 
Join Date: Oct 2007
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
06-07-2010, 06:58 PM   #13
Dexky
To save time...Ask Dusty!
 
Dexky's Avatar
 
Join Date: May 2010
Location: Kentucky

My Support Groups:
Wow, Joe I hope that helped Petra as much as it did me.
__________________
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
06-07-2010, 11:30 PM   #14
MisB
Senior Member
 
MisB's Avatar
 
Join Date: May 2010

My Support Groups:
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.
__________________
BEVERLY

Surgery 8-2010 removed ileum, appendix, 1.5 ft of colon, 21 lymph nodes and a 5 cm tumor. All lymph nodes tested positive for cancer.

Conclusion: Crohn's is in remission, start chemo for cancer end of Sept, or beginning of Oct.

All my meds are pertaining to surgery healing and stress.

06-08-2010, 07:29 AM   #15
CodeBrown
Member
 
Join Date: Apr 2010
Location: warner robins, Georgia
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
__________________
Tammy

Currently on Humira and Entocort
Multi-vitamin and B12 injection
06-08-2010, 04:41 PM   #16
Silvermoon
Moderator
 
Silvermoon's Avatar
 
Join Date: May 2010
Location: Alberta
...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

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.
__________________
My Story
06-08-2010, 04:46 PM   #17
Regular Joe
Senior Member
 
Regular Joe's Avatar
 
Join Date: Sep 2009
Location: Cleveland, Ohio
Well the cases where people live life normally are just not all that exciting to read on the internet!
Priceless! Thanks Silver!
06-10-2010, 03:39 PM   #18
Petra1991
New Member
 
Petra1991's Avatar
 
Join Date: Jun 2010
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!
06-10-2010, 03:46 PM   #19
GoJohnnyGo
One Badass Dude
 
GoJohnnyGo's Avatar
 
Join Date: Aug 2008
Location: Calgary, Alberta
A warm hello to Petra and others who are new to the forum!
06-10-2010, 06:22 PM   #20
superbloop
Member
 
Join Date: May 2010
Location: Manitoba
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.
__________________
"Whether you think you can or you can't you're right" -Henry Ford.
06-14-2010, 01:24 PM   #21
Petra1991
New Member
 
Petra1991's Avatar
 
Join Date: Jun 2010
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)
06-14-2010, 01:42 PM   #22
Astra
Moderator
 
Astra's Avatar
 
Join Date: Jan 2010
Location: St Helens, Merseyside, United Kingdom

My Support Groups:
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
06-14-2010, 02:55 PM   #23
Silvermoon
Moderator
 
Silvermoon's Avatar
 
Join Date: May 2010
Location: Alberta
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!
06-14-2010, 03:37 PM   #24
Petra1991
New Member
 
Petra1991's Avatar
 
Join Date: Jun 2010
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!
06-14-2010, 04:04 PM   #25
Silvermoon
Moderator
 
Silvermoon's Avatar
 
Join Date: May 2010
Location: Alberta
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 ))))))))))
06-14-2010, 05:00 PM   #26
Astra
Moderator
 
Astra's Avatar
 
Join Date: Jan 2010
Location: St Helens, Merseyside, United Kingdom

My Support Groups:
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)
(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,
Reply

Crohn's Disease Forum » Your Story » Newbie - doin the best I can every day
Thread Tools


All times are GMT -5. The time now is 08:38 PM.
Copyright 2006-2017 Crohnsforum.com