Is there any hope?

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Hi fellow sufferers. I'm Cory. 21 from North Carolina, recently disabled from crohn's. I figured I'd write my little story on how my life is affected by this stupid disease. Ok, I was Diagnosed december of 2008, so about 1.75 years so far. I'm 21. When I really think about it, I beleive I've had crohn's probably my entire life, just didn't know it. Cause my stomach would always hurt when I eat certain things and perform certain activities. Here lately it's just been hell. Almost too much for me to handle. Because not only do I have crohn's disease, I am also bi-polar, manic depressant, and have anxiety. So having this disease only makes things worse when I'm constantly thinking im gonna die. Even thoughts of suicide run rampant through my head because I hate being in pain. I honestly can't tell you all the meds I've been on to try and treat my disease cause there's been so many and all have failed. asacol, pentasa, prednisone, protonix, Remicade IV, Cimzia injections, and atleast a dozen more, my memory isn't to good anymore. (and im only 21, bullcrap right?) What depresses me most is that I honestly think my doctors dont care that I'm in pain and obviously nothing is working. They think I'm a drug addict when I ask for pain meds, and if they do give me some it's some crap like Ultram that does absolutely nothing. HEY DOC, MORPHINE? OXYCODONE? SOMETHING THAT WORKS? No i'm not an addict, i've just taken many different drugs in the hospital over time that I kno what helps the pain and what doesn't. Crohn's is really taking a toll on my life and mostly my social life. I never want to go out because I never have the energy, it's embarrasing when I'm walking in public hunched over in pain all the time. I'm 6'5'' and only weigh 130lbs. When I used to weigh 180 before this disease got worse. I'm honestly feeling like giving up, yea there are people out there in worse conditions but I can't tolerate it. When it feels like someone ripped out my intestines and put them through a meat grinder 24/7 and no one cares, it's too much. I mean, I know alot of people who have crohn's and still work and live a normal life, I can't, I was declared Disabled by my doc cause it was so severe and I don't even get that much help with bills. Seriously, how can you live off 450 dollars a month? Rent, Utilities, Car Insurance, Gas, Food, Cell phone. It's not gonna cut it. So I've come to this, is there really no hope for people with crohn's disease? Is there's any way possible to find pain relief? I'm just sick of the pain, the closure, the hospital bills (over $750k but I have medicaid now), the careless doctors. I just want to be able to do the things I used to do when I had a life, when I had energy. I want my life back. I want to be able to run a mile or two, or even run at all. I want to go out with my friends and have fun without people staring at me cause I'm whencing from pain. There's so much i've lost to this disease, will I ever get it back?
 
Hi Cory.

I wish I could tell you that you are going to get back everything you have lost...that there is light at the end of the tunnel, all that good stuff, but saying it isn't going to make you believe it....

I was diagnosed when I was about 13. Had tried all the drugs there was...every new one that came along, my doctor put me on it, and it worked for a bit, and then the pain and ugliness would come back.

I remember being 21 with this disease. I was in university, taking my nursing degree. (I am fortunate enough to live in Canada, where our hospital and doctor bills are paid for... you haven't had that option up until now, and I am so sorry for that, but that doesn't make it any better.)

I was in university...away from the constant nagging of my parents...could do whatever I wanted to...and all I did was barely make it to class and then back to the room in a basement I was renting..getting as much studying as I could in... and then drink myself into a stupor....get up the next morning and do it all over again....

Finally, like you, I had enough. I went out driving one night, not sure where I was going or what I was doing (I was pretty drunk, I might add)....and the spot was perfect...a curve in the road next to a deep gully.... and a quick jerk on the wheel and I was over....

Well...all that happened was I totalled my car and banged and bruised up my body....pretty stupid... but I figured, "Well shit, if this disease hasn't killed me yet, and I can't do it myself, I might as well keep going"

I quit drinking that night, started paying more attention in school...finallly passed (not without a few bumps along the way, mind you). The depression comes and goes...sometimes stays longer than I would like it to...but life keeps plodding on.

I tell you this story, not to say "See I made it, you can too" because only you can decide that. I don't know how to help you much...maybe find a different doctor...keep trying until you find one that works, but it sounds like maybe you have already tried that route. Maybe some other people will be around to be able to help you out with that.

But I do tell you this story to say, I can understand how you are feeling. I can't help you get out of that feeling, and I don't know EXACTLY how you are feeling at any given time...the doctors diagnosed me with all the same things you have...bi-polar, anxiety, depression...and I found a lot of THOSE meds just made me feel worse....I am not saying that is the case with you...just, I kinda know how you feel.

It is pretty hard to see the light at the end of the tunnel when you are in the bottom of a hole 100 feet under the tunnel. If you ever want to PM me to rant or rave, I am here for you....I don't have the answers...but I am a pretty good listener.....

This group of people here on the forum has helped me more than they will ever know...and maybe they can help you out a bit too....

I hope you find what you are looking for.
 
Although I'm not a fellow sufferer, I have a daughter with Crohn's and have seen her in excruciating pain, it's a horrible thing I know, and I wish for you soon to be painfree. I wish I could take your pain away. Please NEVER give up hope.
Welcome Cory. xxxxxxxxxxxxxxx
 
Hi Cory
and welcome

all I can do is reiterate what Silver said, cos I've been there, done that too!
I did everything Silver did, except drive me car into summit, cos I didn't have one at the time, but that's a different story!
For me, antidepressants nearly killed me, I knew there was something wrong, nobody listened, and to cut a long boring story short, I made my own enquiries, sought help from another GP, and got councelling. there are pain management therapies out there too.
I won't insult your intelligence by saying crap like 'chin up' 'things will get better' blah blah, it won't, but you have to seek help yourself, and your first port of call in your GP, scream in his face if you have to! grab him by the throat, just don't get arrested!
I have some idea how you're feeling, and we're here for you, don't suffer in silence! vent away!
lotsa luv
Joan xxx
 
Cory, I am so sorry to hear everything you've gone through. I certainly hope you get some relief soon. I'm 19 and just found out I have crohns. I also sit and wonder if there is any hope for us. I know its hard but try to take each day as it is. There's a lot of support on here in many different forms. I'm here if you ever need a chat. I hope relief will come to all of us in the future no one should have to live like this.
 
Damn Cory, this disease is not easy as I have found out, but you have to stick it out. Never know what you'll miss if you're not here. I too have found that my doctor doesn't want to hear about my depression. I told him 5 freaking times while at his office last week that I was getting really depressed. He just completely ignored me every time. Friday was a bad day for me as I was very down, irratable and my head was swimming in all the drugs. I yelled at everyone at my house and left out in a fit of rage in my Tahoe. I made it 1 mile and almost flipped the Tahoe. It was very scary how close I came to taking out a light pole when I overcorrected and went across the highway. In my messed up state, I still didn't realize how stupid I had been until yesterday and today. Still bummed out, but not suicidal today, in fact, it has been a pretty good day so far. Don't give up.
 
Cory, I must add and I'm sure I will get a lot of heat for saying it is this. There are other drugs and supplements you can get and takke matters into your own hands. I was once prescribed by a doctor many years ago Xanax 3/day. I was much better mentally on it and managed real well on it for almost 2 years. Since my doctor doesn't want to listen to me about my depression, and before I kill myself, I'm looking into getting some ordered from Canada. I will pay more than on my insurance, but at least I will be able to get it. Another thing I have been doing for the last 15 years has been MJ. It has helped with my appetite and naseau tremendously. Not too mention it has made life a lot easier to deal with. I have noticed over the years though my tolerance to it has gone up. So now the stuff I smoke is so strong it would put a teenager in a coma for a week! Hang in there buddy. Keep nagging that doctor!
 
Hi Corey and :welcome:

I'm so sorry you are going through all this. I'm not surprised that you are having problems with your memory when you are trying to deal with so much, it would be so hard to stay focused on anything long enough to retain it.

You have mentioned the medications you have tried so is surgery not an option for you at this point? I only mention it if it may be a way to resolve your pain and hopefully push you into remission.

I'm sorry I can't be of more help but my thoughts are with you and I hope you find answers and relief soon.

Take care,
Dusty
 
Hi Cory and Welcome to the Forum,
Please dont give up, I cant imagine what you are feeling but I know how bi-polar is being that my daughter has bi-polar extremely bad and I also know the pain you are going through and the thoughts, We have struggled years with my daughter to make sure she gets pulled out of her depression before its to late.
I also deal with watching my granddaughter go through the pain of UC. Please Cory use the forum to talk about things so that you can pull yourself out of the depression, I know it is easier said then done, I know how bad it is to get someone out when they are Bipolar. Know that I am here if you want to chat.
I can not relate to the extremem pain you are going through but I am willing to chat with you to pull you out of bipolar depression, I have been doing it with my 22 year old daughter for many many years now.
try to think positive thoughts.
take care
Rosemary
 
Hi Cory, I've waited to post on your thread because I feel anything I could say would be inadequate. I'm sorry for the obvious hell you're going through. DBergy has found many alternative treatments. Read Mr. Ziggy's stem cell journey on here. There is hope Cory!! You just got to find it!! Are you close with your parents?
 
Hi Cory, I've waited to post on your thread because I feel anything I could say would be inadequate. I'm sorry for the obvious hell you're going through. DBergy has found many alternative treatments. Read Mr. Ziggy's stem cell journey on here. There is hope Cory!! You just got to find it!! Are you close with your parents?

my mom. but they can only do so much. it's mostly the doctors I'm having trouble with. they just want to poke around and make "educated guesses" while i'm in excruciating pain and giant knots bulging out of my stomach.
 
Hi Cory,

Sometimes hope is hard to find. If it seems like hope is lost, for me it means I have to look harder for hope, or realize that it isn't hope that's lost, it's me.

At which point it would be time for me to "ask" hope to find me. "Hey hope? Are you out here anywhere? If you're out there somewhere, please find me. I'm over here!" That's exactly what I would do if I were facing what you face. Nothing to lose, right?

I'm not making fun or taking things lightly either. I have Crohn's Disease, and my flare has been active for a month or so. It's harder and more uncomfortable to do the things I've done without being troubled by my autoimmune disease "flare". They happen, and I get slowed down. Maybe sometimes doubled-over and bound to my bed looking at the ceiling fan.

But wheneverI can walk and move, I try to be constructive in improving my own life, or helping someone else improve their life. This weekend I was out of town giving someone I love a surprise for her birthday. She wasn't well either.

It didn't matter, we had fun and enjoyed life while having pain and diarrhea.

Part of IBD is accepting my limitations. After that, it becomes my job to look hard and find hope, wherever it's hiding. This weekend, I found hope at a community theatre about 45 minutes out of town. With bathroom stops in between.

Both my girlfriend and I have to plan any hope we have to share with each other around Crohn's Disease. The disease sometimes becomes a rude "uninvited" guest, like a loudmouthed little brother, like this weekend. But if my girl and me didn't look for hope, hope would have still been hiding in an out-of-town community theatre, but someone else would have found it.

Welcome to our forum, and hang in with your disease. Do your best looking for the life that is still yours, and how to find hope and fulfillment within it. It's there, but for many of us with IBD, it takes a little more time and work to get there.
 
Corey, just a thought on the suicide thing.. I DO understand completely.... but after a lot of research and soul search I finally made a pact with myself...When I am feeling at the end of my rope and want to end it.... I tell myself that I will wait until the next day to do it.... I mean you have to make sure you got every thing in order anyway.... so tomorrow will be the day..... and so far..... by the time "tomorrow" comes around I am out of the worst of it..... and hell if you're not then you can go ahead and do it right?Nothing lost but a few hours..... but, like I said, so far the next day was just a little better and sometimes I found a reason to keep on keeping on.... maybe that will help.
 
Corey, just a thought on the suicide thing.. I DO understand completely.... but after a lot of research and soul search I finally made a pact with myself...When I am feeling at the end of my rope and want to end it.... I tell myself that I will wait until the next day to do it.... I mean you have to make sure you got every thing in order anyway.... so tomorrow will be the day..... and so far..... by the time "tomorrow" comes around I am out of the worst of it..... and hell if you're not then you can go ahead and do it right?Nothing lost but a few hours..... but, like I said, so far the next day was just a little better and sometimes I found a reason to keep on keeping on.... maybe that will help.

I'm sorry but that is not a healthy way to deal with suicidal thoughts. Especially when you say "you can go ahead and do it". I too suffer from depression and suicidal thoughts at times, and sometimes it's very difficult to keep going. But the way you are looking at it is not good...please, please consider seeing someone to help you, if you are not already. We are all here for you.
 
Hey Hey Hey, Im around your age...20, I was diagnosed at 15 and it was very bad then and I was in the mindset of you but after a year or so it got better. Not in college it is great, no problems whatsoever. So just stick with it and it will get better! Keep positive!
 
I can't tell you how many times I have stood in the kitchen looking at my pill bottles and wonder if I just took them all at once would it end it? I think the thought has crossed most of our minds at least once. For me the thing that keeps me here is my kids. You just have to find that one thing and hold on to it.
 
Hey Cory - my message to you that there is hope and its within you. your flare ups and emotional state are all intertwined and what has work for me was to take charge of your own health and manage your pain because no one else will do it for you.

take a look at the videos at the following site:
http://ucvlog.com/

This guy Deniss changed my life
welcome
 
I can't tell you how many times I have stood in the kitchen looking at my pill bottles and wonder if I just took them all at once would it end it? I think the thought has crossed most of our minds at least once.

Whoa, I dont think I have ever had a suicidal thought in my life. Life is too great, even the worst of it. Just think of everything and anything thats possible. How can you let a little disease control you to that point? My life goals have not changed at all since being diagnosed with this disease, they have been changed for the better if any. Sorry, Im going to be blunt, But dont be a selfish person and think that suicide would be better, if you honestly believe that then you need to change something. And dont blame it on the disease because that is not going away and you need to learn to deal with it.
 
Hi Ethan

I don't think these people are suicidal cos of the Crohns?
Bi Polar and depression are serious medical conditions that require medical intervention.
They are chemical imbalances and out of their control.
little bit more tact required please?
 
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Whoa, I dont think I have ever had a suicidal thought in my life. Life is too great, even the worst of it. Just think of everything and anything thats possible. How can you let a little disease control you to that point? My life goals have not changed at all since being diagnosed with this disease, they have been changed for the better if any. Sorry, Im going to be blunt, But dont be a selfish person and think that suicide would be better, if you honestly believe that then you need to change something. And dont blame it on the disease because that is not going away and you need to learn to deal with it.


Thanks for being blunt. I would never actually do it. However I have thought about it. I have been in a severe flare for two yrs! even surgery has not stopped the pain. Spending most of that time in the hospital or bed. I have no life. What was is gone. I've lost my job, my friends, my house is going to auction next month. My eight yr old tells me I used to be the fun mommy now I am the mean mommy. I am in too much pain to do the things that I love. Camping, hiking, playing at the park with my little one, used to be a dancer (not anymore). I have had three surgies this yr. I keep hoping to see the light but I have not yet. My two oldest daughters moved in with their dad because I cant drive them to school (they don't have a bus) or take them to their activities. My oldest one just graduated (I missed it was in the hospital). My house used to be the place where everyone would gather (not anymore) I have a pool in the back yard that looks like a swamp no one has used it in two yrs. I can't even mow my own yard. The point is this disease changes you or me at least drastically! It effects everyone differently me it has hit hard and relentlessly. On the days I can pick my feet up I DO! and that is all you can do. You just go on. Just don't knock someone or judge untill you have walked a mile in their shoes. The crohns that I have is not little it's a huge and terrifying monster on my back my body is my own worst enemy and sometimes I would rather be dead than be in pain one minute longer. I am sorry if you feel that is wrong it's just how it is.
 
Interesting how this thread which is an introduction took on a life of it's own.

I understand how NFS Extreme and dustydshook are feeling. I think there are others, too. I don't believe there are too many of us who haven't wished they were dead at one time or another. I'm willing to bet some of us have prayed to die, too. No doubt Crohn's causes some terrible pain, and it exacerbates any type of mental condition we have. And even if we don't have a mental condition, Crohn's can give you anxiety and depression. It's part of the nature of autoimmune diseases. Crohn's will give you mental imbalances - another one of it's "Extra-intestinal Manifestations" (EIM's).

Regarding suicide. I also understood what Billie Selene meant. If you put a destructive thought or impulse off TODAY, instead of ACTING on it TODAY, there's a good chance that tomorrow you'll feel differently. And if the destructive thought comes back tomorrow, you put it off until the next day. This is taking a somewhat constructive action by postponing a destructive action and trying to live in the moment or "One day at a time."

Not only have I had suicidal thoughts, I've attempted suicide. I took the actions and came within a couple seconds of ending my life. Depression is also a clinical disease. Most of the time it's not possible to "talk yourself out of depression" with a positive attitude. Depression is a clinical disorder that is very treatable, but it often requires medical intervention. I took ant-depressants for 4 years after my suicide attempt. If I didn't seek treatment and get medical attention, depression would have overtaken me, and I would have probably made another suicide attempt and possibly succeeded.

I have an anxiety disorder, Obsessive Compulsive Disorder (OCD). Although it isn't the same as Bipolar disorder, it creates incredible episodes of uncontrollable anxiety. It interferes with my thinking ability whenever I have an episode. The feelings are similar to Post Traumatic Stress Disorder (PTSD) and panic attacks from general anxiety disorder.

Like Crohn's disease, if a person has an anxiety disorder like OCD or PTSD, you can sometimes have anxiety manifested in all the different ways that there are forms of anxiety disorders. I can have panic attacks and episodes of PTSD, which I have had. But most of my anxiety is OCD, and that's how it usually manifests.

In many ways, however, Ethan has a point. My attitude greatly affects both Crohn's disease, and my anxiety disorder. Since I've recovered from clinical depression and no longer require anti-depressants, I'm still more likely to become depressed than someone who hasn't had depression. So once again, my attitude greatly effects my chances of hanging on to depression, or allowing it to pass through.

I've been depressed on days because of the actual clinical EIM of Crohn's disease. I've talked with my psychiatrist who treated my depression, and he confirms that Crohn's will create depression. Fortunately for me, I know what depression feels like, so I'm able to consciously recognize its symptoms, and then realize it's a symptomatic manifestation of IBD. So I understand that it will eventually pass when my flare is less active. For me, Crohn's depression hasn't lasted longer than a day. Usually it goes away if I get out of bed and force myself to become active.

What I learned about anxiety and depression is that it takes more energy to be anxious or depressed than it does to maintain a positive attitude. In other words, it takes less energy to be happy than it does to be sad. I also learned how to change my attitude and disposition by having another human being, my "sponsor", teach me how to live the 12-steps of alcoholics anonymous.

Living with a chronic illness such as anxiety, depression, alcoholism, and Crohn's disease takes a conscious effort and hard work. It also takes the help of other people, that is face-to-face contact with other people. It also means coming to grips with the fact that I can't survive without other people.

If I take action to help others, my own mental despair becomes lighter - often its completely lifted from my shoulders. But I have to take action. I can't just sit around and "think" I'm dying or "feel so bad" that I can't move. I have to put one foot in front of the other, and I have to do that while I'm "feeling crappy", while my stomach is cramping and has me doubled over, and when I take "breaks" every 15 minutes to shit water. Believe it or not, that takes less energy than giving into depression or anxiety.

Each one of us, no matter how depressed or hopeless we feel, no matter how harshly Crohn's disease tackles us, each of us have tiny windows of opportunities to get outside of ourselves and engage with others in a positive and constructive way. Even if it's getting out of a hospital bed and visiting another person sicker than us in the hospital, or taking time to recognize a nurse who does things over and above "duty" to make her patients more comfortable.

These things are where hope is found. These things are the key to bring the start of healing to ourselves. It takes mentally summoning the determination each one of has to live over and above "surviving". Then it requires, ABSOLUTELY requires, that we take constructive action. Hope won't stay available very long without an "engagement" with action. Constructive action never fails.
 
My eight yr old tells me I used to be the fun mommy now I am the mean mommy.


that broke my heart =/

i went thru similar things and i know how terrible the feeling is. when people you love dont even LIKE you anymore.....but you dont know what else to do. you dont know how else to cope with what you need to. for a while i just pretended that i was my same old self even though inside i was markedly different. it felt easier than dealing feeling like i am the "wrong" version of myself. you know?

do you see anyone? therapy or anything? that might be good. ive been in cognitive behavioral therapy for a few months now and i cant say its AMAZING but it does get you to...consider things in a different light and to face your fears. it has been slow progress for me but thre comes a point where you just have to do SOMEthing you know?
dont forget that your mental health is just as if not more important than your physical health. just the fact of saying "i have a problem and im doing what i can to fix it" for me that helps a lot with the guilt and things like that. you know?

either way i hope you feel better and should you ever need to talk, send me a pm is you want. all the best.
 
IN ORDER DUSTY SHOOK!!!!

hope you're ok?
take care
xxxx

I am o.k., I don't spend all day every day moping around the house. That wasn't the point of the post. The original poster mentioned suicide and another girl mention driving her car off a cliff. I just wanted to reiterate that they weren't alone that other people have had the thought too even if it was just fleeting. This is a hard disease to deal with but I am dealing one day at a time. Thanks for all the love and encouragement it is something we all need, clinically depressed or not. I have a great support system and a wonderful husband with me everystep of the way. However, the thought has crossed my mind on ocassion, the people who are having these thoughts are not crazy and might not even be depressed, most days sick or not I have a very happy disposition and outlook, sometimes you are just at the end of your rope and want to end the pain.

Were the people that had Dr Kavorkian end their lives clinically depressed or simply and completely sane looking for a way to end their pain?

I was trying to be supportive, just saying been there done that, and you ain't the only one. Now I feel as if i have just been diagnosed as crazy and put on suicide watch???

Even with everything that I have been through and am going through I find the time to laugh and smile everyday!

Love you guys!
 
Hi Cory,

I probably can't help except give my support, there is always hope, and support here, (if you need a chat whack me a PM)

It's hard being young with the disease, I had it all through uni and the docs (despite being diagnosed already) saying I was making it up for attention reasons...

Please don't give up. I hope that things start getting better for you soon :hug:

Oh and a big WELCOME! :)
 
I'm sorry but that is not a healthy way to deal with suicidal thoughts. Especially when you say "you can go ahead and do it". I too suffer from depression and suicidal thoughts at times, and sometimes it's very difficult to keep going. But the way you are looking at it is not good...please, please consider seeing someone to help you, if you are not already. We are all here for you.

Well, it has been the only way I have managed NOT to just check out for over 6 years now! I used to have a friend and we had a pact that we would call the other one before we did anything serious....and then spend the evening talking each other out of it... but, about 6 years ago, she finally took the short answer and went without calling me.... so now I am alone in this deal... and so far this is the only way I have kept from taking the short answer myself. Read my intro and you'll see I am playing with more than just Crohn's and add that to being a survivor/veteran from the last war we lost.... (Vietnam) and this is just the best I can do!
 
Interesting how this thread which is an introduction took on a life of it's own.

Joe, I gotta admit sometimes I don't have the energy to really digest your posts as they are usually ahem quite wordy. But this one was well worth the time.

You have to have had some formal writing education as your posts always build your theme and come round to conclude so well.

Cory, I hope you also see the wisdom of Joe's words here!! He really has said it quite nicely:).
 
Hi Cory,

I am no where near as ill as you, but you and so many other people have had it rough. You are very brave. Just talk to people on rhis forum, they seem to be very knowledgeable and maybe they could help give you ideas on how to survive with it all.

If you need someone to unload PM me and i'll be glad to listen and see if I can help :)

All the best
 
Interesting how this thread which is an introduction took on a life of it's own.

Regarding suicide. I also understood what Billie Selene meant. If you put a destructive thought or impulse off TODAY, instead of ACTING on it TODAY, there's a good chance that tomorrow you'll feel differently. And if the destructive thought comes back tomorrow, you put it off until the next day. This is taking a somewhat constructive action by postponing a destructive action and trying to live in the moment or "One day at a time."

Thank You Joe, You explained as I tried to say it! ;-) That hits it right on the head. And I too have tried to committ suicide... 3 times in the past and was found before the job was finished..... no silly calls or cries for help .... just people walking in where they were never expeected to be! THAT is one of the reasons I started developing my ideas on this.... maybe there is a TIME for everyone and you can't check out until your part is done.
 
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