Crohn's Disease Forum » Support Forum » Mental Health Support » Am I going to die soon? Is life worth this much emotional destruction?

09-09-2013, 09:00 PM   #1
Join Date: Sep 2013
Location: Wrexham, United Kingdom
Am I going to die soon? Is life worth this much emotional destruction?

My name is Luke, I'm 21 from Wales, UK.

A couple of months ago, I was rushed to hospital and had an emergency abdominal operation. I had had stomach pains and cramps for about 4 years and did what any man does, and "coped". Last month, the doctor's confirmed I had Crohn's.

My Crohn's specialist introduced the idea of the J-Pouch. Like others have said before, I understand this will affect my social/sexual life, dramatically. Therefore, I have decided not to have the J-Pouch.

I have been hit with a massive wave of, what I believe to be, depression. Since the operation I have lost all but one friend...lost my girlfriend of 5 years...been out of work for a while (and not going back for another 10 weeks) causing me to fall into debt...lost weight and not being able to recuperate any of it, causing my gym sessions to be pretty much inadequate. Told my parents I was going to basically harm myself, fatally.

I just feel like breaking down all the time. Crying. Is there much to live for with Crohn's? I feel I will never have an intimate relationship with the J-Pouch, and I like being sexual. I'm 21! I'm scared of not being able to venture out backpacking because of medicines I will have to take. I'm scared new job opportunities will be crushed because of the Crohn's. Other days, I'm fine and forget all about the Crohn's, apart from the constant toilet breaks

What are my average chances of living a long good life without any more operations, J-Pouch, etc? (I have had the ascending and most of the transverse colon removed so far)

Is life really worth living if there are so many operations involved, crippling my sex life?

Should I just man up, balls to the wall, get out there and have fun? Not worry about the Crohn's, not take any medication/operations and see how long I can last?

What would you do in my situation? Maybe I should go see a doctor about the possibility of depression. I'm just isolated, left behind, up and down aaarrgghh!

I feel like I've just vomited my thoughts out in an unexplainable fashion. I apologise
09-09-2013, 09:31 PM   #2
PsychoJane's Avatar
Join Date: Mar 2011
Location: Quebec

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It is not always an easy situation to deal with crohn. I too have encountered ups and downs from it and it takes time to, let say, learn to tolerate what it may brings. The manifestations are highly different from one patient to another and the pain and psychological distress associated with it will as well differ. One thing is sure, the accumulation of factors that surround the diagnosis and active phases and limitations we encounter (or feel we will be facing) are enough to lead someone in the world of depression. Sometimes, it is worthy to discuss these symptoms with your doctor to try and see if a medication or some counselling(which has helped me) can be appropriate.

When you refer to the J-pouch surgery, I assume you are relating to the possibility of having a stoma in between? It can indeed influence your social, sexual life but in theory, it should not prevent you from living it. I have had an ostomy since the age of 14 and it has brought me a decent quality of life and I have a totally normal social life and a normal relationship too. It does have an impact on the physical appearance, but please, do not believe it ruins it all and make things impossible.

As far as backpacking goes, everything can still be possible. I just arrive from a 2 weeks courses hiking scotland and camping every nights. These are on average 12 hours day with lots of physical involvement and, even though it was a little harder on me (mostly because I have some joint pain lately) than it was on other participants, I managed to do pretty much everything. I then headed to cuba for an extra week. You can spend your whole days out in the water if you want without worrying about a thing. My worst enemy was the travelers diarrhea but that happens to everyone(well not all but many) that end up eating some unusual bacteria. Shit happens! I've also biked the island, 80-130km a day in the past during a 2 months long trip. I went on several crazy adventures in the past 10 years enjoying my youth while I was not flaring. This is part of my personality but I feel the need to fully enjoy any moment I ain't sick and these periods can be fairly long in my case but they did require the help of surgery in my case. There are things that you need to adjust in consideration to your needs but you can allow yourself not to feel like the limitations will be endless cause it can allow you to get a quite good quality of life.

As far as not being treated, or not getting surgery. I don't recommend that unless your condition is stable and you have reached remission (which can happen). It varies in time for everyone. It can take a certain amount of time to reach that point but it worth hanging on to it.

Most important, you are not alone, we all share the path! Hang in there!
Diagnosed UC 1999 then refractory CD.
Past Meds: Prednisone, asacol, cyclosporine, cyclophosphamide, mp6, Humira

Currently taking: Omega-3, D-3, med-free for the time being.
~~Oh! n sorry if what I write seems strange at times, English is not my main language!~~

You'd like to chat and feel facebook would ease this point,
send me a private message and i'll do so =)
09-09-2013, 09:45 PM   #3
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Join Date: Sep 2009
Location: New York

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I'm not going to sugar coat the reality, this is a very hard disease to deal with physically and mentally. You are going through a really rough time now but you will become a stronger and more resilient person. Crohns doesn't mean your life is over. When you are in remission you can enjoy everything in life like a regular person. I know remission seems impossible now but with the right treatment you will find relief and can resume your day to day activities. Please don't give up hope.

I also don't think seeking help from a psychiatrist through talk or medication is a sign of weakness. We all suffer and can use a hand sometimes and let the meds take the edge off.
09-09-2013, 09:55 PM   #4
Forum Monitor
Join Date: Apr 2009
Hello Luke. Many people on this board have experienced similar feelings of defeat or depression at various times. If you are seriously considering harming yourself I urge you to see a counselor ASAP. I just started seeing one this summer and although I adamantly refused in the beginning I found that after a few visits to her office I came to enjoy the time there. I have always been the type to try and bear the suffering as much as I possibly could and I have lost friends and a long term relationship because of it. I found the having someone just to talk to about how bad I felt or how angry and dark I had become was surprisingly calming. I feel that since you are so young you definitely can bounce back from what you've been through. It does take work though, there's no denying it. I wish you all the best and please remember that harming yourself does nothing good for you.
09-09-2013, 10:55 PM   #5
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Join Date: Aug 2013
Location: Sacramento

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Luke, you've been through a lot and sounds like you are still struggling, and who wouldn't be! Please, know that remission is possible. You have gone on so long without medical management, please try to find a good MD and he will help you find the right treatment and get stabilized. Once stable, you may actually feel better than you have in years.
09-09-2013, 11:35 PM   #6
Join Date: Aug 2013
Location: Ontario
Hi Luke,

I'm sorry you're feeling down and I totally understand how you feel. I am 22 and recently diagnosed with Crohn's after 5 years of bathroom hell and not being taken seriously by doctor's. And I also feel like I'm breaking down. I have my good days but there are some days where I'm miserable and I feel trapped in this disease.

I unfortunately have struggled with depression throughout my life and have seen some professionals about it. I like it because I can vent without judgement, my family etc knowing how I feel since I normally keep it bottled at home. I have also wanted to harm myself but years ago. But whenever I think about how bad I felt then I think about how happy I am still here now. All the things I would have missed out on like school, work, time with my family and enjoying what life has to offer. I never turned to self harm as an outlet but I did turn to writing. I actually did today after so long and I just wrote out exactly how I feel and it helps because I still get to keep my thoughts to myself but they aren't bottled up anymore. I felt better today after writing it takes some of the weight off my shoulders. So maybe that is something you could try

When I was diagnosed with Crohn's I asked my doctor about life expectancy and he said Crohns will not interfere with how long I live. YAY. There will still be hard times but at least we have our whole lives to make it a happy one.

I know it is probably the most annoying advice but its the truth, you deserve a girl who is supportive and helpful with your health and lifestyle. Who sees you not just the Crohns. Whether you have the Jpouch or not. Talk to your doctor about other helpful options that don't involve the jpouch, pros and cons of it, etc get all the information you need. And maybe once you start feeling better, accept this new challenge in your life and feel confident, etc you will feel better about the jpouch. Everything is an adjustment, don't feel defeated.

And if you feel that maybe people don't understand what you're going through, etc or need someone to listen you have this site! you have tons of people from all over the world with similar and different experiences but are all there for you and willing to offer some advice and listen when you need a vent sesh or have any questions or concerns.
You don't have to do this alone.

Everything takes some time but don't give up on yourself. You CAN and WILL get through this.

09-10-2013, 05:16 AM   #7
Senior Member
Join Date: Mar 2013
Location: Coatbridge, United Kingdom
Just got say I agree with everything on here it will get better,get to the doctors again tell them you,ve got a serious case of the blues who wouldn't,t in your will get better keep that thought.i know your ill just now but try to exercise even walking it helps with the blues.all the best
09-10-2013, 05:45 AM   #8
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Join Date: Oct 2011
Location: Cincinnati, Ohio

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I could be wrong but I thought they don't recommend the J-pouch for crohns, only for ulcerative colitis?

Please check this out before you make any decisions.

Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
Vitamin D3 1000mg
09-11-2013, 11:11 AM   #9
Join Date: Oct 2012

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You're very unlikely to die soon. There are much worse diseases to have than Crohn's, which people manage and still enjoy living! Life is certainly worth living when you have Crohn's.

You are very new to this - it took me a good couple of years before I figured out what people meant by telling me I would accept being ill. It is possible you will learn to adapt - keep trying to do the things you want to do, but if you really find you can't, find alternatives.

I think the depression you're feeling may largely be a result of the sudden shock you have experienced. It's well known that a major surgery - especially an unplanned one - can cause depression. Your mind and body have been through an awful lot in just a few months - drastic mood changes are sometimes unavoidable.

I know a lot of people may try to help you by telling you that you may go into remission, that your disease may become mild. This may be the case, but I don't think it's helpful to always be pinning your hopes on a future that's only a possibility. I find it helps me a lot more to accept that I'm going to be ill and work on enjoying things with my illness, rather than waiting and hoping that I might get better.
09-11-2013, 01:25 PM   #10
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Join Date: Jun 2012
Location: Surrey, United Kingdom

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Hi Luke

Just wanted to give you some support. One of the lowest points is the bit between when you are first diagnosed and coming to terms with something that will always be there. It especially tough when you're young and it appears that life's over. I can speak from personal experience as I was your age when diagnosed and then had surgery.

Seek whatever help you think you need. As others have said it is not a sign of weakness, it shows you're already on the road to managing this awful disease. Crohn's and depression are very common topics on IBD forums. When I was diagnosed I would simply have been told to pull myself together. Attitudes have (or should have) moved on.

Are you going to die soon? I've survived into old gitdom but I did actually ask my consultant recently which, of the various complaints I've picked up, would finish me off. He replied "the Crohn's won't kill you".

Things will improve. Periods of remission are great because the physical pain can go away but there is always the mental aspect to deal with because you know that symptoms could return at anytime and you need to be able to accept that.

There's an active IBD/Crohn's community on Twitter that support each other when they are feeling particularly low. It might be worth checking it out if you haven't already.

Stay strong
Wrestling The - the companion website to my, shortly to be published, book on 4 decades of Crohn's and other issues

Not taking Crohn's meds at present. In the past - pred, pentasa, aza, entocort, infliximab - with varying degrees of success

Currently on :
Loperamide/Colesevelam to keep the BAM at bay
Propanolol/Omeprazole for PVT
B12 injections

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