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Crohn's Disease Forum » Your Story » Something to think about for all Crohns Forum Members


 
08-06-2010, 11:46 AM   #31
Crohn's 35
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Hi Mflemming, Weclome! Prednisone can cause whack of problems and I had problems with my feet and muscles there are some others who can comment. It is a great short term med but needs to be replaced with something to keep flares down.

It would be great if you could of posted your story on a YOUR STORY thread, that way everyone can meet and greet you!!! Some people get lost on other threads. Glad you joined us, many great people and caring individuals! Join us!
08-06-2010, 01:56 PM   #32
mfleming
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Thanks Jettalady. I'm new to forums and how they work. I will try to find the MY STORY place and post it there. Can you tell me where I'm to locate this place. Looking forward to the discussions. Michele
08-30-2010, 06:26 AM   #33
naen
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Thanks for the post, it was well written and said everything that should be said.
09-30-2010, 05:54 PM   #34
tflock
 
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great job summing it up. Everyone is different and deserves to not be made fun of or told to deal with it. Could not agree more.
10-21-2010, 02:08 PM   #35
Domsmom
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Thanks so much! This sums up how I feel about it...hoping no one judges my disease and I won't judge theirs
11-15-2010, 01:01 PM   #36
adb
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very well said!!!
01-04-2011, 01:27 AM   #37
getbackup
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Hello Mike,

My name is Nicole Phillip-Marcano from Trinidad, W.I. and I was diagnosed with Crohn's of the small intestine and Colon four (4) months ago.
I have since been on Pentasa, antibiotics and pain relievers, Xtendlife fish oil, sulfasalzine and recently, prednisone - 40mg per day.

I have been having quite a bit of pain on my left abdominal and sometimes bloody stool. My gastroenterologist (by referral) is so busy he can only see me at max. once every three months. When I have an emergency I have nowhere to turn for treatment except my FP who does not really specialize in this area and people are not familiar with this disease in my country.

I feel really tired and ill and some days I can't function at my really hectic and high stressed job in export marketing. My symptoms are many and quite distressing and depressing. Upon being diagnosed my employers promised support but because they, perhaps, did not take the time to educate themselves about the disease my boss is now really beginning to give me grief about my sudden lack in energy and absenteeism and I fear they may take the decision to have me medically boarded and dismissed.

I am really happy about this forum where I can share my experience with others who are also subjected to living with this condition. I feel very alone since I do not know anyone else who has the same disease. My husband and daughter are very supportive but it's really difficult to always complain about the pain and how awful I feel. I don't want to be a burden to them so I really need to find a vent.

I hope to continue learning and understanding this disease as all of this is new to me. It is a frightening experience and I believe that this forum will serve as a source of inner strength and enable me to be an inspiration to someone else with Crohns or any other medical condition.

Sincerely,
Nicole

Thanks Mike.

By the way Nicole.. Nice post I know what you mean.
Hello all - A new member and hopefully i can contribute as well as seek for some support. I been diagnosed with crohns for 4 years but never took time to deal with it from a mental and physical aspect of it. This last year, I had 3 sessions and it's now taking a toll on my body Phsically and MENTALLY! ahh... Ulcers Ulcers pls go away so I can go out and play. =)

Nice to be a member.

BW
03-12-2011, 04:27 PM   #38
linder553
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I love how you mentioned that this disease is different for everyone...so true. I have two friends that have Crohn's Disease including myself and all three of us have different symptoms and pain in different regions. One of us was just diagnosed and hasn't started medication yet but that doesn't mean that he is not in pain and doesn't feel what all of us are feeling. I have had crohn's for two years and haven't had surgery yet (Knock on wood). I love this forum and hope people continue to write everyday. It's nice to finally feel like I belong somewhere cause even though we don't know each other we are all one big family!
04-05-2011, 07:45 AM   #39
homeschoolmom
 
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Hi,

I am a married (26 years), 51 year old home school mom of a wonderful almost 17 year old young man. I was diagnosed with colitis when I was 12 years old and over the years this has progressed into not only colitis but Crohns too. I was first diagnosed with Crohns when I was 3 years old, but am sure I had this DD much longer than that. I had a resection in 1999 and lost 1 1/2 feet of my small intestine. I struggle every day with arranging my life around the bathroom, my joint pains and fatigue.

I am now awaiting approval to try Humira, as nothing else seems to be helping.
04-05-2011, 07:55 AM   #40
Crohn's 35
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Hi,

I am a married (26 years), 51 year old home school mom of a wonderful almost 17 year old young man. I was diagnosed with colitis when I was 12 years old and over the years this has progressed into not only colitis but Crohns too. I was first diagnosed with Crohns when I was 3 years old, but am sure I had this DD much longer than that. I had a resection in 1999 and lost 1 1/2 feet of my small intestine. I struggle every day with arranging my life around the bathroom, my joint pains and fatigue.

I am now awaiting approval to try Humira, as nothing else seems to be helping.
Hi there, welcome to the forum! That is such a long time and a very young age to have this disease! I know about living your life around the bathroom and coping with pain. I have had Crohns symptoms since I was 15 but got a diagnosis at 32...been almost 20 years since. I have tried all meds, including Remicade, and most do well on it but I became allergic. Humira did work for me for a while, it could be just the med you need for you! We dont have Cimzia here so if it shows up here I may try it but my Gi doesnt have faith in it for me. My body hates drugs.

You maybe should write your own story on a YOUR Story thread as your story could get lost in here. I look for newbies but others may not see your story. Again, glad you are here! Let us know your story and hope the Humira works for you!
04-10-2011, 12:35 AM   #41
crushingcrohns
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Good advice. Thanks
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05-16-2011, 11:23 AM   #42
Gunny
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This should be a mandatory read before you join this site. Outstanding, and well said!
05-31-2011, 06:45 PM   #43
mayhavecrohn's
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i am new here and i am scared to death about maybe having crohns my reg doctor is almost 100% sure i do have it i already have enough things that cause me chronic pain and crohns is the last thing i need
05-31-2011, 06:54 PM   #44
lovehimtodeath
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im new here. im on here searching for a way to support my best friend and boyfriend. everyone's story is different, i couldn't agree more. my boyfriend wont talk about his crohns much because he feels like a burden to others. please help me, i posted to the "your story" section, its a post called "I NEED to help." I really need a reply. thanks so much.
06-10-2011, 07:46 AM   #45
Fairyelements
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Thank you! I feel at home already.
06-14-2011, 05:35 PM   #46
paperbackbutterfly
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As a new member who has had very little contact with other Crohn sufferers I am very interested to read all the posts and I think you are right. It is easy to dismiss other peoples experiences as I feel I know what it is like to live with Crohns on a long term basis. This site is teaching me alot. It appears that it is different for different people. I am used to living with it and, i feel I am quite well adjusted. I can function quite well despite the drawbacks and problems. I hope that I can add something to the forums, make new friends and maybe give hope to some of the newly diagnosed Crohns family. 'Life is what you make it'.
06-18-2011, 12:43 PM   #47
carolann
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not sure how to use the forum
06-18-2011, 12:44 PM   #48
carolann
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i am new here and i am scared to death about maybe having crohns my reg doctor is almost 100% sure i do have it i already have enough things that cause me chronic pain and crohns is the last thing i need
have you had a colonoscopy ???
08-01-2011, 11:23 AM   #49
nene51
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Thank you for the post, it's so true, all experiences are different. But, it's nice to know that you are not alone....
I also, don't understand what causes my pain, but my doctor just told me that it was part of having crohn's. I love this forum, didn't know anything like this assisted. I've had crohns for a very very long time. They never knew what caused it, and there's no cure for it. But this medication I take called Asacol 400mg, might be one of the best. But, overall I stll have flare ups. And seeing what to eat and what not to eat(which is everything you can't eat), we will always have problems.
08-02-2011, 10:41 PM   #50
zhaoj22
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Thank you for the post, it's so true, all experiences are different. But, it's nice to know that you are not alone.... I'm new to the site so I haven't told my story yet but I have a question regarding the hormone thing you mentioned.
08-06-2011, 11:26 AM   #51
brooke206
 
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Can anyone give me advice or share their experience regarding success or consequences of surgery to repair fistulas Ihave had discharging abdominal fistulas for 6 years now they are painful, uncomfortableand restricting, the only treatmentwhich has made any improvement was Infliximab infusions my consultant is reluctant to prescribe more infusions and is now suggesting surgery, but hasn't given any assurances that this will be successful does any one have any advice?
08-06-2011, 12:01 PM   #52
Grumbletum
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Hi Brooke and welcome. We have a Fistula and Abscesses subforum which you'll find on the forum main menu so you'll find others with similar problems and possibly advice there . Have a surf and feel free to post questions there: there is usually someone going through the same thing, unfortunately.
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08-06-2011, 12:19 PM   #53
scottmyster
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HI Mike, i am a member of the forum and they welcomed me like family and the forum has a great ideal of great people and a great world of knowlegde. i have had crohn's for 21 years now and still fighting it. but , you summed it all up in your post. which is great. way to go mike. best wishes

scott
08-09-2011, 12:56 PM   #54
WhatTheHeckHappened?
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Wouldn't it be great if we could all get together look up at the sky and yell "Enough!" then it could stop, then Chrons will tuck tail and run.
Oh well, since we can't do that, at least we can support eachother
09-21-2011, 07:25 AM   #55
Jenn13
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yeah the pain sucks.... and the amount of toilet paper I go through is scary!
I have had cd for 17 years i should own stock in charmin !!!
09-27-2011, 09:23 PM   #56
kulou
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yeah the pain sucks.... and the amount of toilet paper I go through is scary!
10-08-2011, 05:29 PM   #57
crushingcrohns
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Thanks for posting that. Very well said.
Sometimes it's necessary to just remind people and bring people to the basics about what these communities and forums are all about.

I came to these forums and joined support communities because my support and understanding from friends and family, were non-existent. I literally had no support, outside of online forums. People need support and to be heard and need to also know they are far from alone with their disease and that there are people that will listen and accept you where you're at and as you are.

Being shunned or having someone say "deal with it" or downplaying concerns would be just ANOTHER slap in the face. That's the last response a community member needs from a place that is supposed to be safe and supportive.

My family are beginning to understand, but at one time, I was completely misunderstood and had NO support from them. These forums were my ONLY support that made me feel like not such an outcast because I received understanding and encouraging words from sufferers like me. Your words matter and will effect people - either in a positive way or negative way.

Being compassionate and encouraging will help people (if anything) and something positive that you say may actually make someone's day. That's why we should try to the best of our abilities to be kind in our responses and provide encouragement. All the negativity that comes from the ignorant and misinformed people that we see on a daily basis will continue until the light bulb goes off someday and they begin to learn the reality of the disease. Until then, these forums are more than a blessing and needed for support and as a healthy outlet to express concerns and feel heard.

10-11-2011, 09:53 AM   #58
thecrohn
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I'm so glad you posted this blurb / disclaimer. Treating IBD is so different on a person by person basis and there's no "right answer." It's been hard explaining this to my family and friends- and everyone has an opinion! I'm really happy to have stumbled across this forum.
10-16-2011, 08:39 AM   #59
phigould1986
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Thank you..I am new here and was diagnosed with crohns last year and am still very scared of what the outcome will be,But im trying to let other family members know what i am dealing with and this may help...Thanks for the support
12-15-2011, 05:04 AM   #60
Gsto86
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Really great post!
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