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This is so unfair. What did I do to deserve all this? I always played life by the book. I was a 3.98 GPA student in college, the depth of my criminal history is 1 traffic ticket in 21 years, I have never used or even abused drugs and alcohol, and I had over an 800 credit score 2 years ago.

False optimism aside, the reality is this illness has completely destroyed every aspect of my life. It has ruined my income earning ability, my relationships, my overhead and living expenses, my attitude, and everything else about my life. I just don’t know how to get out of the position I am in.

I have had to tailor every aspect of my life around this illness and I am angry and tired of it and all the senseless suffering.

Sorry for the negativity. I am just venting. I need help!

 Reply posted for rethomp1974.

I feel exactly the same way.  I have had Chron's since 1994.  I was pretty lucky until the last 3 years or so.  I am on Humira and Methotrexate, and feel like nothing helps.  I have been in the ER for severe pain, and feel like none of the doctor's understand.  I am sooo tired all the time.  It is hard to be a proper mother to my seven year old, and feel like a financial drain on my husband.  I too am sick of this!

 Reply posted for rethomp1974.

I just wanted to say thank you to everyone for taking the time to read my post and for leaving their positive feedback. Thank you again.

 Reply posted for rethomp1974.

You said it! 

Hang in there and continue to fight for your health in the way that makes the most sense to you!  Everybody's path of illness and path to a better life< whatever that ends up being, we often need to frequently redefine >  is different. 
And I am so proud of you for putting up a strong voice for those that need it.  we have a culture of avoidance in this country.  We need to remember that social pressure can affect change.  Props to you when you tell people that their behavior is socially unacceptable!  I bet you do it out on the street too.  You just made my day.  Brownies for you!

 Reply posted for rethomp1974.

I hope things have turned around in a positive for you and your Crohns. I read most but not all of your posts and i have to say not once did i see the mentioning of God or your spiritual side. Ive had Crohns for 11 years and yes it has taken a lot out of me in every aspect imagineable as most of us with this have realized. My faith in God is the only thing that has kept me afloat and moving forward with Crohns disease. As the saying goes " Things can be much worse ", cant they ? Pick up your local newspaper and read about everyday tragedies that affect families. I hope you do believe in God and know that through Faith ANYTHING is possible.

 Reply posted for rethomp1974.

I am another Crohn's pal. Here what I learned this month

1. Fighting with Crohn's is like driving a car. At some point, we have to stop and wait for the green light. It is  not a choice, but it is part of the rule. We must follow the signs or we get send to the hospital
2. My friend who had Crohn's for 20 years told me that he is drinking raw veggie juice daily. He recommended me reading "Green for Life" and try to get more fiber into our diet. He was able to maintain his weight and get some energy back, and most importantly he finished MBA in nursing. He is claiming up the ladder again. 

 Reply posted for alanschachter.

Okay, I agree Alan diet makes a difference in everyone overall health despite IBD. However, people like my dad and George Burns ate whatever they wanted whenever they wanted with absolutely no problems at all. There are many people probably 2 billion or more who can eat whatever they want whenever they want and never ever develop any sort of diet related ilness. In addition there are at least 4 billion who eat whatever whenever and never ever develop IBD. So please explain your theory about diet. Are you trying to say that IBD is caused by diet? There is no proof and I just explained in a very simple non scientific way how this just isn't true.

Is my diet restricted. Definately yes! Does this make a differnce in how I feel and the degree of my IBD symptoms? Definately yes! Did this cause my IBD? The jury is out and I highly highly highly doubt it!

I think diet and some supplements help, but i also think there are many profiteers in a modern day society who are capitalizing and praying on the hopes and fears of others. Consequently they sell how to books, supplements, etc, etc, etc. just to make a buck. In my mind they are unscupolous socialpaths who have no concious.   

 Reply posted for rethomp1974.

People don't get illnesses because they did something bad. You didn't do anything to deserve this - you just have the unlucky genes that gave you Crohn's or UC (not sure which one you have)  My husband has those genes and so does my 12 yr old daughter.  She is supposed to be having the time of her life right now and she is laying in the hospital during Spring Break.  It sucks. Big time.  It could also be a lot worse.  I barely have the energy to get thru each day so I am not going to waste what little I have wondering "why us".  I totally understand you are angry and you have every right to be. Believe me, my anger gets the best of me and I do really stupid things.  Sorry I don't have something wonderful to tell you - there is no cure right now. Just wanted you to know you are not alone

 Reply posted for alanschachter.

Thanks for getting back to me. Okay, so in my last post I meant to say Stanford University Hospital.

Stanford University Hospital got back to me and they said they do not use this medication as a form of treatment. I also saw a pain management doctor today and they said they do not prescribe it either. Phew!!!! this is a difficult medication to obtain. Sad, because it appears as though it is helping a lot of people and the side effects seem very minimal.

I do not have a Facebook account. I do not want to use one to discuss this matter. I don't like the idea that employers and other people can use this info against you. So, is there any other way to discuss this with you? i could call the CCFA and give them my phone number and tell them to please give it to you.

I could really use the help Alan. Please help me!

Thank you. 

 Reply posted for alanschachter.

Alan-

I read all about the LDN treatment. The results they are getting look very promising. I would like to try this medication. I went to my primary doctor and two different GI doctors. None of them use it as a form of treatment for Crohns Disease. All three of them thought I wanted it for pain or alcohol and heroin withdrawls. I was upset at that. I told them to research it on the Internet. Even after one of the GI doctors researched it and read the studies they fefused to prescribe it for legal reasons. They said it is not a standard form of treatment for Crohns Disease (it is an off label form of treatment) and if they prescribed it and something bad happened to me their license would be under scrutiny. They said I must go to a hospital that has an IBD department if I am to try to get this prescription treatment. I have put a call into a University Hospital because they have a IBD department there. My other option is a clinic. I am waiting for the University Hosp to get back to me.

So,  how do obtain this LDN medication?

 Reply posted for alanschachter.

Alan-

I read all about the LDN treatment. The results they are getting look very promising. I would like to try this medication. I went to my primary doctor and two different GI doctors. None of them use it as a form of treatment for Crohns Disease. All three of them thought I wanted it for pain or alcohol and heroin withdrawls. I was upset at that. I told them to research it on the Internet. Even after one of the GI doctors researched it and read the studies they fefused to prescribe it for legal reasons. They said it is not a standard form of treatment for Crohns Disease (it is an off label form of treatment) and if they prescribed it and something bad happened to me their license would be under scrutiny. They said I must go to a hospital that has an IBD department if I am to try to get this prescription treatment. I have put a call into a University Hospital because they have a IBD department there. My other option is another clinic. I am waiting for the univerity hosp to get back to me.

So,  how do obtain this LDN medication?

 Reply posted for rethomp1974.

Rethomp - With  my family it's my daughter, that is the patient.  My heart periodically breaks for her and right now, it breaks for you.  This disease isn't fair and you are right, there is no easy answer or one size fits all cure, if there was, the suffering would be over.  I don't have any platitudes to offer other than to say, "I hear ya" loud and clear.  You more than deserve your life back!  

 Reply posted for breezy.

Thanks for the uplifting words. I am glad your life is back on track. I wish I could say the same. Tomorrow is another day. I will hope for the best. I wish you continued happiness and prosperity.

 Reply posted for simpsonmh.

In addition, tell someone who mourns the loss of a loved one to "get over it" and see how they respond. I mourn the loss of my health and my life and I am refuse to "get over it". I am trying to get beyond it with a cure. I am not 14 years old and tell people to "get over it" because I am lazy and refuse to pick up a book and do some research and try some different treatments. "Get over it"....so lazy and naive. I would be embarrased to associate with someone like that.

 Reply posted for simpsonmh.

Thanks for the encouraging words.

I never looked at it as a game where I win or the disease wins. I have just simply been on an endless persuit for 20 + years to find a cure, not a treatment. If Johnas Salk can do it with Polio so can others.

"Get over it" is a do nothing losers mentality. I dont associate with people like that. Our health is the thread that holds the fabric of our lives together. Our bodies are our temple and we must take care of them so they can carry our souls/spirits through this life happily and comfortably.

I suggest telling the person who told you to "get over it", to get over "get over it" and start putting in some effort to try to help like Alan is doing find some sort of healthy treatment or cure.  Whoever said "get over it" sounds extremely lazy and uneducated.

 Reply posted for rethomp1974.

Hey RE!  I am a Crohnie.  2009 found me with a temp colostomy, more expensives than income, sick, and my job ending.  The company closed.  2011 finds me with a job, propects of a better job, energy, renewed health, optimism, and starting my on business.  I have a friend that is an Orthomolecular Scientist.  He helped me get my life back.  He whispers the word "cure" because the FDA will slap him fines if he says it out loud.  No lie, people, he used the C word and had to close his research lab.  He and I argue over my use of LDN.  I follow the rest of his advice.  I do not eat alot of things in the American Diet.  I just really don't like it.  I would much rather have homemade Mexican over Taco Bell.  I am 46 years old and pass for 30.  I can now dance the night away.

The point of my little ramble is this---sometimes the answer is much closer than you think.  Sometimes it starts with a smile.  Sometimes it is a combination of many things.  Good luck and good health.

Wendy

 Reply posted for rethomp1974.

Hi.  I've had UC far fewer years and it seems had fewer serious syptoms.  I've had some dark days but don't give up because then the disease wins.  After I was diagnosed I posted something about being discouraged, pissed, and upset about UC.  A person replied that I basically needed to "get over it".  I wasn't crazy about this advice but that's the great thing about a forum, you can choose to accept or reject advice... wishing you better days!

 Reply posted for alanschachter.

I apologize for the animosity and free floating hostility. I am just very upset about how my life has turned out due to this illness. Also, I am very skeptical because I have been ripped off more times than I can count. Please understand, I am not looking for a treatment I want a cure. I have spent every dime I have ever earned, approximately $20,000 of my own money and $20,000 in credit cards trying to find a cure.

I feel like I am just trying to achieve what most people take for granted. To be able to eat whatever I want whenever I want. I would give my left arm for that. I would give both my legs if could hold down a job and have the privilege of raising a family of my own. No joke!

My illness is refractory. At my best, I can eat 10% of foods that are available to the general public. At my worse, they feed me through my veins. I have been on TPN twice. I have a severely restricted medical diet. I can't eat or drink anything acidic, dairy related, rough or fibrous. I also have degenerative joint disease and peripheral neurapathy.

Believe me, I despise the medical field. It’s not healthcare, its money care! I could tell you story after story about how many times I have been over-charged, over-treated, misdiagnosed, not listened to, etc, etc, etc.

Sometimes, when I think about all the thousands of toxic pills and loads of injections I have taken just to live with this disease I get very depressed. I have had hepa-toxicity twice.

Before I became sick I always ate very healthy and exercised daily. None of this makes any sense. What did I do to deserve this? Living in your car, with no support system, and being beaten down by this illness is no way to live. I am lonely, desperate, angry, scared, etc. etc.

I miss my old life. I miss my girlfriend. I just want my life back to how it was before. I just can’t do this any longer. I have run out of options and I have nowhere left to go. Even if I cured myself, how do i get back the last 20 years of my life?

 Reply posted for alanschachter.

Thank you for your reply, but do you really think that after 20 years of being constantly sick and frustrated with this disease that I never kept my mind open to alternative therapies? Really, is that what you think? You are insulting me.

You don't know me. I have gone as far as you can go with western medicine, hence stem cell treatment. And, I have gone as far as you can go with alternative therapy. I have traveled to 30+ countries most of which are Amazonian and SE Asia in search of a long lasting cure. I've had my brain waves read by someone who didn't even have a machine for crying out loud. They did it with their hands. Then they proceeded to sell me their "special" supplements.

To be honest, You seem very salesy to me. I knew it was just a matter of time before your replied to my post. You post your so called cures all over this website. I have reported you once before.

If it is so simple to cure people, then why aren't you on the cover of Time magazine for finding a cure and winning a Nobel Prize? Let me guess, it's a conspiracy, right? You are being discredited and silenced by the government and the pharmacuetical companies. Why are there people still posting on these forums that have had the illness for a long time? Do you think they are just dumb and don't know about your miracle cures?

What is your education? Do you have a degree in Biomolecular science? i am guessing not, maybe marketing or business. 

Again, you seem very salesy to me. I am very leary of people like you. I suggest anyone reading this post also be leary of you. Maybe you are just trying to help and I am wrong, but something smells fishy to me. Try your pitch on the newly diagnosed, you may have better luck there.