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I was recently diagnosed with Crohn's although I've probably had it for years and didn't know it.  Not until I had almost disabling symptoms did I go to a GI doc and finally get diagnosed. As I am sure many of you have noticed, there is more to Crohn's than just the obvious physical toll, it's how it affects you emotionally as well, and for me that part has been huge.  

 Reply posted for lwoodinoly.

I am the father of a 15 year old Crohns patient.  He is responding well to Remicaid and has gained 20 lbs back.  His inflamation markers are back to normal , is now on a unrestricted diet, and is back to high school full time.  He is an athelete, life scout ( one rank below eagle ), good student, etc.  However, now he has now dropped out of high school soccer, club soccer, church youth group, and is wanting to drop out of scouts also.  We are seeing a family counselor that after two meetings with him, suggested that he quit in person with the leaders!  This has all seamed harder emotionally for him than physically.  Don't know what to do.  Can't force him to stick with sports and scouts.  I only want him to be happy and healthy as possible.  Any parents or patients out there with advice would be welcomed.
 

 Reply posted for lauren85.

I really love that you posted this. I thought I was the only one who sits there and cries because I just want the pain and symptoms to go away. Just for a day so I can have one normal day like I used to. 

I was was diagnosed with chrons disease in February of this year but my doctor has said I've probably had it for a few years, due to insurance problems it took forever to see a doctor. Once I found out it all makes sense. I was diagnosed with severe chrons disease. I have lost 45 lbs this year from this sickness. I would never wish it upon my worst enemy.

Im 20 years old and I stay in the house everyday of the week and occasionally go do a few things during the weekend. I've quit my job, don't go to family gatherings, I can't even leave to go visit family for a few hours because I'm constantly sick. I don't get bad bowel movements I get severely nauseated. It's so embarrassing for people to hear you throw up and once it starts it doesn't stop.  I  just get how you feel, it's so true no one gets it unless they have it. My husband tries to make me eat because I could go a whole day with no food and it's so hard to explain how difficult it really is to be sick like this so we do anything to avoid our symptoms.

its really nice to know  not the only out there that feels like this. It's the most emotional thing to deal with, to go nights with no sleep at all and days with no food, I really wish it could be something that could go away so easy. I think your very strong. Anyone who has these diseases is strong because we go through alott in our everyday lives.

one question.. Have you ever went through a "remission" I've heard of it and I'm really looking forward to the day my "remission" happens. 

 Reply posted for victoriawhitt.

Please don't be scared. You are a strong woman and even though you're on your own, as am I, we can deal with this because we don't have any other option.

I am almost 50 (ahh!!) and was diagnosed with Crones at age 12. My mom and brother have it as well. It just became part of my life, as did dealing with all of the symptoms. I've been on Remicade many times until my body rejected it, and let me tell you, it was a wonder drug for me. If I could still take it I'd do it in a heartbeat.

It's not fair, but don't let it overwhelm you. Things could always be worse. I've been through the whole gamut, stomach cramps, weight loss, prednisone, prednisone fat, diarrhea, having accidents, sick days, hospital stays and new relationships. Everyone is right...it's difficult to start a new relationship, but if they're worth anything, they will love you for your heart and not turn away because of your fistula's.

Do not let this disease take over your entire life. It's mind over matter. Even when I'm having the worst day, I will do what I have to do and try to live the most normal life I can. Most people don't even know I'm sick unless I tell them. You can empower yourself, do not let this keep you from having a life. When you feel like crying, do something nice for yourself. Get a massage, go to the kennel and pet kittens, whatever it takes.

One last thing, if you've never heard of Sara Ringer, PLEASE YouTube her. She's so uplifting and will really make you feel better!!! She is also on Facebook and Twitter. I just found her and she really helped me. It's no psycho babble, just fun and laughter and dealing with Crones.

Jen

 Reply posted for gingerale.

You mentioned that you were worried about starting Remicade, so I wanted to share my story.

I was diagnosed with Crohn's when I was 16.  I started out on Pentasa.  When that failed I was treated with Prednisone (my least favorite by far because of the emotional problems).  After that I was on Imuran in increasing doses until I maxed out on the amount they could safely prescribe.  My doctor at the time referred to Remicade as a drug of last resort.  She implied that the chance of it working was slim and the risks and side effects were just too scary, so I didn't pursue it.

When I was 21 I got to the point where my body would not accept solid food.  I dropped over 50 pounds.  My doctor just kept trying to treat my symptoms and not the disease.  Luckily a friend was able to recognize my problem and recommend another doctor.  When I went to see him he was able to tell me that if I was his daughter he would recommend Remicade.   I switched doctors, but I was too late to avoid the hospital.  I had developed strictures which required surgery.  I was lucky to avoid having sections of intestine removed.

When I had healed enough I started Remicade.  Initially, every treatment wiped me out for the following week, and I still had days where I couldn't leave the house, but that has gotten better over time.  Now, at 28, I'm only tired for a day or two.  My life's not perfect.  I still have bad days, I've had a couple of flare ups, and I still watch what I eat, but for the most part I'm able to function.

The side effects and risks of Remicade are real, and it might not be the drug for you.  For me it has meant I can hold down my food, stay out of the hospital, and leave the house when I want to.

 Reply posted for victoriawhitt.

I am the same way. My doctor hasn't said I've been cured but he is saying that there is no reason why I should not be living a normal life. I'm just wondering if I'll ever be well again. 

If you need a buddy my email is kjmcgee@crimson.ua.edu 

 Reply posted for lwoodinoly.

I am very depressed (not suicidal or anything) just bored off my a-- cause there's so much I can't do, & scared to death about what the future holds for me. (I'm alone, so it's bad).
I had a doctor who wrote a letter saying that I had basically been cured! Even GI doc's know nothing about this disease & are sick of my "complaining"! I've never experienced anything like "remission". I don't really have flare ups, like they talk about. I have good days and bad days, but I'm sick every day.
Thanks for letting me vent. We do all really need to just keep talking about it. We can't have people think we're making stuff up.

 Reply posted for lwoodinoly.

I'm 43 & was diagnosed when I was 38. I just feel like this disease is slowly but surely taking over my life, like they say it does. I've tried everything over the years, or it seems like it. And all the time, I eat, I immediately get sick, and you can't help but wonder: what did I eat? What did I do wrong? And I have all these stupid friends who think they know exactly what I need to do - "gluten free" - & I tell them that I tried that, for 6 months, twice! And it didn't make any difference. But she doesn't listen or get it and it's so frustrating when I eat with people; they question my order. And there are lots of things that reduce me to tears. And I just have to tell myself "It's not what you ate or did, it 's that you have Crohn's disease". And I've basically never had a good doctor. The last one was the worst - what a joke - so I'm trying to get started with a new doc.
But now I've gotten to the part where I have actually, as a matter of pure, simple fact, lost 2 jobs for absenteeism. I'm a really well-qualified and highly experienced worker in a couple of somewhat related fields. And it's official: they think I'm making it up! It's so awful! It's just so awful, they actually think I'm lying, when what I've been doing is literally killing myself trying to fulfill my job duties, and failing! I try so hard! And people actually think the OPPOSITE! That I'm some lying pansy trying to get away with something! I lie in bed with my phone and my laptop for a meeting! And it really is true: nobody knows squat about this disease. This org CCFA, is our best friend, increasing awareness. But the truth is no one knows or cares. I can't even get a decent doctor!

 Reply posted for lwoodinoly.

FINALLY PEOPLE THAT UNDERSTAND!!!!! I'm 23 and was diagnosed when I was 21. I was on prednisone for 6 months last year and gained 50 pounds and coming off them was worse than Crohn's. Unless you have it you really don't understand. Crohn's has taken a huge toll on me physically, emotionally, and mentally. I am thankful that the cramping has stopped but I'm still on the toilet a dozen times or more a day. I have also sat on the toilet many times crying. I have anxiety attacks as well because of Crohn's. Some days I feel hopeless. My mom is always telling me I should eat this but not that and I'm like Mom no you don't understand that doesn't help. It's so hard to find food that won't mess me up. Crohn's controls my life. It's hard to go out to places because I'm wondering do they have a bathroom. Last New Year's I was in Tennessee with friends and I couldn't even go out to Nashville for New Year's because I knew a bathroom would be extremely hard to find. I love to travel but that's hard because what if I have to use the bathroom and there isn't one? It's really embarrassing but I've even had accidents on myself. I would love to be in a relationship but its so hard to be in one when this controls your life. 

So I really feel your pain. It's also so nice to read that I'm not the only one. It's nice to vent to people who understand. 

 Reply posted for lwoodinoly.

FINALLY PEOPLE THAT UNDERSTAND!!!!! I'm 23 and was diagnosed when I was 21. I was on prednisone for 6 months last year and gained 50 pounds and coming off them was worse than Crohn's. Unless you have it you really don't understand. Crohn's has taken a huge toll on me physically, emotionally, and mentally. I am thankful that the cramping has stopped but I'm still on the toilet a dozen times or more a day. I have also sat on the toilet many times crying. I have anxiety attacks as well because of Crohn's. Some days I feel hopeless. My mom is always telling me I should eat this but not that and I'm like Mom no you don't understand that doesn't help. It's so hard to find food that won't mess me up. Crohn's controls my life. It's hard to go out to places because I'm wondering do they have a bathroom. Last New Year's I was in Tennessee with friends and I couldn't even go out to Nashville for New Year's because I knew a bathroom would be extremely hard to find. I love to travel but that's hard because what if I have to use the bathroom and there isn't one? It's really embarrassing but I've even had accidents on myself. I would love to be in a relationship but its so hard to be in one when this controls your life. 

So I really feel your pain. It's also so nice to read that I'm not the only one. It's nice to vent to people who understand. 

 Reply posted for mbishop.

I feel the same way. I was diagnosed with Crohn's in March. I went through a period of feeling lost and sad, and then i started to mentally get better after discovering CCFA. Now i feel those emotional tolls again, even worse. i dont think i really accepted the fact that this takes some major time to heal, and there's no cure, so you will have to face these things forever. that's a lot to handle. and very overwhelming. i think the hardest part though is the yoyo effect- one day you feel like you are literally dying and then a week later you feel a little better- you think, oh it must be going away and i'm on the uphill side to feeling normal again, then again- one week later you're feeling awful again. i tell my husband all the time that it mentally messes with you because of that, always up and down. and you cant escape it. its not like a job where you can go to another company, not like a relationship where you can move on, its your body- you cant escape that environment. so its hard to emotionally keep your mind right. everyone always says- stay positive- but at some point i feel like you forget how to do that. 

I am 38 but was diagnosed when I was 20.  I tell everyone you go through steps to acceptance with anything.  This disease along with UC affects your mind as well as the body.  It is awesome to have a place such as this website to have friends who understand.  One thing to remember is that people who don't have IBD, won't know anything unless you tell them.  Try to educate yourself about the disease.  Remember you have IT but IT doesn't have you.  I think everyone has two ways of looking at being diagnosed...you can either sit and complain or go out and help spread the knowledge and end ignorance about this disease.  Help others most of the time you will help yourself in the process.  
You have already made the first step and that is by checking out the CCFA website.  

You are a fellow "CROHNIE"!!!  I have also learned that laughter about the illness helps alot.  I am here for you anytime you need to vent!!!

 Reply posted for lwoodinoly.

I am a 31 year old female who was diagnosed with Crohn's 2 days ago.  I've had digestive issues for about 6 years that I just dealt with, but started having abdominal pain about a month ago which caused me to get a ton of tests over the last few weeks.  Just had my first colonoscopy this week which was how I was ultimately diagnosed.  It's been a rough month...for awhile not knowing what was wrong with me, and now knowing that I may never feel normal again.  Even when the pain is bearable, it just gets old after awhile.  I'm usually good at controlling my emotions in public, but I've been losing it a lot lately.  Part of me feels sorry for myself, but more than anything I feel bad for my husband and my friends and family that have to put up with me.  They've all been so kind, but I think that eventually my complaining will get old.  People keep asking me how I am and I find myself saying "I'm fine" when I'm really not fine but I don't want to be negative all the time.

I was really happy to find this site.  I think it's great that people with similar diseases come together to talk about how they are doing.  It seems like most people don't know much about Crohn's and those who do think that it just means you have chronic diarrhea.  Even though some of what I've read on here scares me a bit, it's also made me feel a little lucky that my disease hasn't progressed too much yet.  I am not in need of surgery and don't have any fistulas that I'm aware of.  My doctor is hoping to start me on Remicade soon, possibly next week.  I have sympathy for everyone who has this disease, whether they have it worse than me or not.  It's comforting to know there are so many people out there who understand what I'm going through.   

 Reply posted for lwoodinoly.

To me the most important aspect of coping is to find and keep using those who understand and support us. i belong to a support group and find that just being able to express absolutely anything with those people makes the load alot easier to bear. I am 62 years old and was diagnosed at age 25. In those days there was only 1 drug available and it didn't help me much.  I believe that with any lifelong uncureable disease (and there ae many) how you choose to cope means everything. Try to find a support group or communicate with one online. Find a dr. with whom you can connect and keep them aware of any problems or changes. Understand that your family cannot totally understand what you are going through, even if they try to do so. Finally, it took me years to understand that depression and grieving are necessary parts of coping. Not lingering on those 24 hrs a day is necessary too, and harder at times. Although I am not a recovering addict, I do repeat the serenity prayer outloud and often because it gives me comfort and reminds me that there are things I cannot change but for the most part i can control them and keep on functioning as best as possible. I was diagnosed with two different types of cancer in 2010 and found that having Crohn's would prepare me for that. Because of eadling with Crohn's for my entire adult life i can cope with just about anything else MOST of the time.

 Reply posted for lwoodinoly.

I am 20, and was diagnosed 2 years ago. I know exactly how you feel.
I had a breakdown today, because I just want to be a normal person again. I want to go out to dinner with my friends and eat whatever I want. I want to wear flattering clothes. I want to have the energy to leave the house. 
My doctor wants to put me on Remicaid.  The idea of being on chemo-lite at 20 has me scared [wit]less.

Explaining my situation to my friends and acquaintances has really helped me.  My first year of college, I didn't tell anyone, I figured it wasn't their business. After a bad flare-up where I missed class for several days, I explained crohns to most of my department. Everyone has been so supportive and genuinely curious.  My friends are aware of what I can and can't eat, and provide food I can eat at parties/what-have-you. I am happy to answer everyone's questions, they usually make me think of symptoms in different ways.  When I'm in pain and being unfriendly, everyone is patient, where before they would get angry.

Even though I "know" I have a chronic disease, it hasn't really sunk in.  When I'm writhing in pain, it's easy to think "why me?!" But I don't dwell on what's happening TOMORROW, let alone decades down the road. As more people are diagnosed, new treatments will be developed. I have to believe this will be curable some day, or I would dissolve into tears on an hourly basis.

We DO understand you, we've been there.
And to end on a hopeful note: There's a GORGEOUS guy in one of my classes. Rugby player, tall, blonde. Guess what he has? Crohns. We'll have to get together for seedless bagels or something ;)

 Reply posted for lwoodinoly.

Hi,

I just wanted to say that your post made me cry. I also have Crohn's disease and I've felt the exact same way. I am very fortunate to have a supportive family and I live with my boyfriend who is also very supportive of me through my illness, but at the end of the day, none of them understand it. I know that sometimes my boyfriend gets frustrated because I almost always feel like crap and we can't do things together, go out or be intimitate as often as most couples are. It really takes a toll on me. I've recently fallen into a depression and anxious state due to my Crohn's. I am seeing a psychiatrist (recommended by my doctor) because I was balling my eyes out in her office. I'm tired of missing work, feeling like crap, being in pain and not being able to live my life. I am starting Humira very soon and I am trying to be optimistic that this will allow me to live a normal life. I haven't talked to anyone about it really. I just let it boil up and I get really upset. I hope that you are feeling better and will feel better in the future. I hope we all do. =)

 Reply posted for lwoodinoly.

Hi,

I'm in my 40s and have had this since I was in 6th or 7th grade (a very tough time to be told you're different and won't grow for a while!) but can very much relate. I think we all go through the range of emotions from anger to denial to fear. And working full time and trying to do everything our friends and colleagues do, and not seem different is very challenging. I am lucky to have a very understanding boyfriend/partner and my job is finally being flexible knowing my situation. However, it never seems that anyone truly understands unless they also have a chronic disease, that isn't visually obvious to others. People often don't understand that we can look fine, but not feel fine. or that commuting on three trains can be extremely stressful because we have to worry that a bathroom is nearby and available on short notice!

Hang in there. I'd like to say it's easy to find support groups in person, and there are some, but I haven't found that many fellow CCFA members who are into going to in person meetings. Probably because we are busy trying to do everything else. I like the online community a lot though. And I like the advice of the others who said you will find friends and family and a boyfriend who understand, and they aren't easy to find (unfortunately) but there are employers who also are great and supportive. One of my goals this year is to help those who are "non traditional" with our special needs, can work and be considered contributions and make a living, and get the support and flexibility they need given their/our unpredictable conditions. 

Finally, HUMOR and LAUGHTER are by far the best way to deal with it! If you can laugh about it, you will find others will too!

Hang in there!
Tracy

 Reply posted for mbishop.

Thank you for the response. I often feel like there is no one to talk to, no one who really gets it.  You just can't unless you've been through it.  And even he I think my overly emotional post might of scared some off.  

It's just all so overwhelming, and those I have told seem to think they know more about it what I should do to manage it than I do.  My mom has been constantly telling me, eat more veggies, eat more grains, it is healthier for your bowels.  I keep telling, things like that make me feel worse! The concept that something most regard as healthy could actually make someone feel bad, she just doesn't get.  And hence my point.  If you don't have it, you don't get it.

So what I really need are people such as those here, who have had the same struggles.  People who know what it's like to have no appetite for days and to have to force yourself to eat.  People who know what it's like to sit on the toilet and cry.  The fear of knowing you have a lifelong disease that will need constant care and not knowing how you will be able to pay for it all for the long haul.

It's a lot, and any support I can get means a lot. Thank you.

 Reply posted for lwoodinoly.

It does get better with time in terms of handling it.  Your close friends may not understand exactly how it effects you, but eventually they will come to understand the inconveniences you suffer.  Your family may or may not ever get it.  No matter what, you aren't alone.

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