• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Life over before it begins?

Hi guys. Normally I don't get on medical social forums, but I've heard good things about here, and thought I'd give it a go.

I'm sure you all get sob stories every day, and why should another one matter? Well, it doesn't. I don't know you, and you don't know me. I just felt I have to get this out somewhere.


I was diagnosed with Crohn's when I was 16. I was taking my high school exams at the time, and went to the ER on friday night, spent the next few days in hospital with severe dehydration and muscle loss and loss of energy. I was on 8 hour antibiotics and underwent minor surgery. I got out as soon as I could, and sat my next exam the wednesday morning following that earlier friday.

Why? Because I refused to believe that me, 16 with all the hope in the world was going to be diagnosed with an incurable disease. I went to my part time job that weekend and threw up in the staff toilet twice during the day. Forced myself through the second day, and ended up in ER the day on the monday.

Since then, I've shoved it to the back of my mind. I was on steriods, which caused horrific weight loss then Prednisone, which caused weight gain, Omazparole (or something), and finally, Humira.

I got through the remaining few years of high school and the first few years of Uni by ignoring the fact I have a life altering disease.

Now I'm 20, and about to finish Uni. I'm scared, more than anyone else near to me knows. I was going to be in the Airforce, then the Military Police. Those options and many others are gone now, thanks to Crohns.

I may have a chance to join the Police, but its not all I wanted and not something I can do forever. I'm considering an OE or something to get travelling again, but I can't see any way to do what I want to do with my life.

Basically, I'm facing a future of living with my own inadequacy, the timebomb of Humira starting to fail and the improbability of having a family, as I'd never want to inflict what I feel and/or the results of it upon anyone else, least of all children.

I'm more angry than anything else right now, because at the end of the day, its all down to me. I'm the useless one, the inadequacy is my own body's fault. I can't live the meaningful life I once dreamed of, and all the dreams I had are shattered by a world with rapidly closing doors.

I worked so hard in the Cadet Forces, High school and Uni to achieve the grades everyone keeps telling me I'll need to succeed, but in the end, it was all worthless.

Its like I've failed the test of life, and I'm only supposed to be just starting.


I tried my best.
 
hi captain,where to start,ok,its a disease its not your fault,just dumb luck,it can be managed and as you read the forum quite successfully,i,m know your in your 20,s and having a tiny piece of knowledge about the research ongoing the chances of crohns not being better managed or cured in the future are close to nil so it will get better.meantime get back to your doctor and tell them your struggling and they need to look at your meds.the not having a family in the future because of crohns it won,t happen you,ll be fine its not passed on to children in fact some studies suggest its viral related.
Failing the life test,honestly life plans have one thing in common there bollocks!i wanted to be a train driver ended up an engineer in the gas industry for 35 years its been great few bumps along the road,crohns being one of the big ones,but its under control and i feel lucky.speak to your drs,s/family and friends you,ll be fine.all the best,good luck
 
You have failed nothing. You were dealt a bad hand and that is it. You have hope for a cure that might easily come in the next 10 years. Look at Hep C. My brother-in-law died from it in 1999. My best friend was cured this year. Hang tough. It is too soon to throw in the towel.
 

Tesscorm

Moderator
Staff member
Hey CaptainTurkey,

You have not failed anything! And, I'm sorry you are feeling so frustrated right now! My son is about your age and was also diagnosed at 16, so while I don't really know how it feels to have the weight of a crohns diagnosis on my own shoulders, as I parent, I know how overwhelming it can be when you consider that it will always be with you. :( But, as you said, your life is only just beginning, there are many, many people with crohns living full, successful lives - it is possible!!! And, as was also mentioned above, treatments have changed immensely in the past 10-20 years, they will continue to change and improve!!

First off, you really do need to make sure you are on the right meds. It can take a few trials and errors to find what works for you and, even when you find the right med, you may need to change it up in a few years (but not always!!) My aunt was diagnosed with crohns a bit over 15 years ago. She had a really tough time getting into remission, GI finally started her on remicade (very new med at the time), imuran and a very low dose steroid and this put her into remission, two years later, GI removed the remicade and left her with just the imuran and low dose steroid. Since then, almost 15 years, she has been in remission - she ran her own very busy business (literally working 15 hour days during peak seasons) until retirement and now travels regularly. So, if you are not feeling well, be sure you are receiving the right treatment!!! You must be your own advocate; keep working with your doctor and pushing until something is working well for you.

Also, stay on top of your health - you don't really mention that you aren't feeling well now...??? If you are feeling well, continue monitoring your health! From what I've learned here, if at all possible, I believe it's easier to tweak treatments at the first sign of a problem, rather than treat a full out flare. Learn what tests should be done regularly and have a general idea of what the results should be (lots of info on the forum or feel free to ask me or anyone else questions!) - this is important as, more than once, I've found errors in the testing for my son (ie GI orders standard repeat tests and they're somehow missed at remicade centre or results not returned to GI! :ymad:) I don't mean you need to be paranoid about everything but just have a general sense of what should be happening and what looks off...

Something that GIs will generally not suggest but that I truly believe do help are nutritional shakes. As important as it is for anyone to maintain a strong nutritional diet, I believe it is even more important for your body to have the tools it needs to stay strong!! Although my son is on remicade, he drinks one to two Boost shakes per day. I read a study (I can find the link for you if you'd like) that showed patients on remicade who also took in approx. 1100 calories in nutritional formula per day significantly increased the success of remicade. Although I can't convince my son to drink 1100 cal/day in shakes, what he is getting (about 500 cal) can only help. Look into 'enteral nutritional' for more info and have a thought if this is something you might want to try (NOT as a replacement for any meds though!!). My son used enteral nutrition to reach clinical remission and as a supplement for two years so feel free to ask if you have questions on this.

Something else to keep in mind... There are many, many people out there with crohns/UC living active, successful lives but they are not on the forum!!! Most people on the forum are here because they have questions relating to concerns they have or are newly diagnosed. When reading through the forum, it can leave you feeling that the problems never end... it can be a very one-sided perspective. Keep this in mind!! Here's a link to the success stories on this forum - http://www.crohnsforum.com/forumdisplay.php?f=72

Good luck!!!
 
Hi captain, I had exactly these same feelings of failure a few years ago when I graduated from University and was starting out in my career. i mean i still have days like it now. I know it seems like it's all doomed to failure but did you not feel like that at points throughout ur education? And you succeeded there. The world of work is just your new hurdle to overcome, there have been knock backs in my career but thats all they are and if you truly have a passion for something and want to pursue it, you will, crohns or no crohns. Use those voices in your head that tell you you can't do something as your drive to overcome them and not let this horrible disease that is crohns stop your life ambitions. Your a person who has crohns...but it doesn't define who you are.
 
To throw my two cents in...I 100% understand where you are coming from. I wasn't diagnosed until right after I graduated college, but starting in college, I really believed that due to crohns I couldn't have the career I wanted (teaching). After graduation I took a job I didn't want to be in long-term because it allowed me greater flexibility when it came to dealing with my health. Looking back it worked out well for me, and now (7 years, a lot of medications, and a career change later), I'm in a job I love. While it's not exactly what I wanted when I was growing up/in college, it's 'adjacent' and I couldn't be happier. If you had told me this 7 years ago I'd probably have called you crazy. Crohns is a part of who we are but it doesn't define us, and if you want something badly enough, eventually you end up doing what you really enjoy, even if it's not exactly what you had in mind when you started out.
 
we all feel ya man. I made it to 28. just finished law school, got married, bought a big house, then bam! Right in the kisser! Crohn's rocked my world and hasnt stopped, and now I am 46.

Look man, if you are like me then you are absolutely correct, you won't do all the things you had hoped to do. So, change course. Make a new plan, Stan. Life is always what you make of it, sick or healthy. I still have a nice life and have two great kids that are everything to me. They are proof that I still accomplished some important stuff, and you can too. Stop the denial, make the adjustments you have to make, and get on with enjoying life when you can.
 
You are in a sorry state of mind, I'm praying that you can find something to be thankful for. You can't put yourself down the way you do, life is good, unfortunately we have to deal with this disease. Please find something or someone in your life to be thankful for and start looking at the brighter side of life. May God bless and comfort you.
 
Life isn't over my friend, just the course you had charted can not be followed, and that course can always be changed, you are the captain of the ship!

I was diagnosed when I was 24. I was a volunteer firefighter and was looking to go into the Navy and be a hospital corpsman. Needless to say enlisting was no longer an option. Yes I was depressed for a while and my dream got shot down, but life goes on. I made some changes and explored new options. I now work as a department manager for a fast growing convenience chain in the northeast.

Just hunker down, take care of yourself first and foremost. Should you need someone to vent to you can always message.
 
you are too strong and too tough to give up that easy. you can live a very meaningful life and you can move on to do bigger and better things. don't let this disease get the best of you. easier said then done, i know, but you can do it. this broke my heart reading…Im sorry for you :(
 
Last edited:
Hey CaptainTurkey,

Something that GIs will generally not suggest but that I truly believe do help are nutritional shakes. As important as it is for anyone to maintain a strong nutritional diet, I believe it is even more important for your body to have the tools it needs to stay strong!!
I agree entirely with Tesscorm on this statement. Although they don't sound like they'd help that much, nutritional 'elemental' shakes have helped me immensely. When I get a flare up, they can induce remission without the need for steroids with me (at the moment) And I'm currently on a 6 week elemental diet for a flare now. Not only do you restore some muscle mass, you get into remission too. Two birds with one stone I guess. :)

Sure it can be a bump in the road, but it is possible to lead a fulfilling life. I've had Crohn's all through high school, and at the moment I just got accepted into my first preference of uni course; as well as having gained 10kg over the last year at the gym. I'm starting a power lifting program too!

There are going to be days, weeks or even months when you don't feel 100%, but don't think for a second that you're hopeless! :smile:
 
Top