Recently diagnosed, first surgery, not working, depressed and lost

[LittleOrphanTristannie]

I was diagnosed with crohns last April after years of painful symptoms attributed to IBS, finally after an entire week of worsening pain due to an obstruction I went to the hospital and they gave me an enema and laxatives, then left me to get worse as my abdomen got more swollen and the pain became so bad I started smashing my head off the wall and couldn't stand, sit, lie down, or do anything that didn't hurt.

I was finally xrayed after they tried to discharge me when the enema released the little bit below my blockage, and I argued with the nurse that the doctor needed to examine me again before discharge. He came back and saw how distended I was and ordered the xray. After that they finally put me on pain killers, and I was admitted about 16 hours later to the general surgery floor. I spent two weeks there waiting to get a colonoscopy, was put on high dose of prednisone, and became manic. When I finally got my scope done, I woke up from anesthesia and they kept going with the scope despite how much pain I was in.
I was discharged a few days later, and spent two months fighting with 10 doctors over getting adequate pain relief.
I had 4 strictures, and kept experiencing obstructive symptoms on a regular basis.
The mania from the prednisone caused me to run around acting crazy and I managed to destroy my life, losing my home, my job, most of my belongings, and most of my friends, and since my family has tried to erase me from their lives since I was abandoned by my mother at age 7, I couldn't turn to them for support.

Fast forward to now. I've been out of work since April, on odsp, just had my open surgery, and spent 3 weeks in hospital right before Christmas. I'm healing, but I'm depressed, I'm feeling like life is pointless, that I'm just going to get sick again, or that something bad will happen like going on remicade and getting cancer, and I want to work but have no skills other than as a cook, and restaurants are one of the worst places for a person with crohns to work given the long hours, low pay, high stress, and lack of rights for workers. I just can't go back there as I feelblike it contributed largely to the severity of my disease when I was finally diagnosed.
I dont know what to do, I actually think about jumping every time I am waiting for the subway, not that I would do it, but I think about no more pain, no more loneliness, no more struggling to survive.
I wonder if other people have felt like this after their first year of crohns?

 

[Sophabulous]

You have come to the right place, please don't feel alone. What you have been through is enough to make anyone feel lower than ever.

Sometimes life just sucks for no good reason doesn't it? I had the worst year of my life last year, looking back now I can hardly believe I got through it.

Being diagnosed was just a small part of those feelings as I had a lot of other issues at play, and I wasn't as advanced as you are in terms of disease activity/complications.

Trust me when I say, I know how much a bad working environment can cause you to ignore things longer than you should, and make you feel like you are letting the side down when you're not well. Even to the point where you continue working making yourself worse than ever because you can't afford to be off sick or change career. I have 100% been there.

I write this at nearly 2am my time, in pain and miserable when I have to make a decision in a few hours whether I'm going to work tomorrow or not. It sucks.

What sucks more is forcing yourself to carry on when you're just not ready. I can only imagine how crappy it is as I hate being off work with nothing to do, but there's been SO many times I've gone in regardless and the expectations on me are no less regardless of how much I'm struggling and I wish I'd stayed at home. Sometimes you have to pick your battles, and if your body and mind aren't ready, they aren't ready.

If you are feeling really hopeless my suggestion would be to try and volunteer somewhere for small periods of time and build up based on how you feel. It will give you some sense of purpose on your own terms, without the anxiety of having a contractual obligation. It will look good on your CV for the future too.

Take your time, you and your body will know when you're ready. Talk to your GP about how you are feeling, you are most definitely not alone and they will understand how this can take a toll. It's more crazy NOT to be depressed when living with something like this in my humble opinion.

Take care

 

[valleysangel92]

Hello there,

I'm so sorry you're going through such a rough time. Crohn's a really brutal illness, and I think many of the emotions that you are feeling are quite normal for people dealing with chronic illnesses. If you've just had open surgery then this will increase those feelings, surgery is a massive shock to the system both mentally and physically, and its very natural to struggle emotionally in the aftermath of this.

Having an illness like this is a lot to get your head around. I've been diagnosed with this for over 4 years now and there are still times where it does hit me like a ton of bricks that this will be with me for life, but I can honestly say that it does get easier. I totally understand that it's isolating and difficult not being able to work, I'm in that position myself and it does make things hard, but again, it gets easier. It will take time to find a treatment plan that works for you, but once you do you should be able to slowly step up your activity levels and go back to work again. I know you say you work as a cook, and that it's all you know, but there are so many transferable skills in there and while working in a restaurant may not be suitable anymore, you could look in to working somewhere like a school or even just seeing if there are any part time roles that would be more manageable. Volunteering somewhere could be an excellent way to get back out there and get some confidence, I know my consultant has recommended it as a first step for me when I feel ready to try working again.

You are not alone anymore, you can come here as often as you like, you can vent and scream and let it all out and no one here will ever judge you. We are all in the same boat and I can almost garuntee that we have all felt the way you do at one point or another. Try to be kind to yourself, remember that none of this is in any way your fault, no one asks for this rubbish, but you're here, you're fighting. Having that surgery would have been a very scary step and taking a lot of courage. Please don't give up on yourself, you can do this. We're all with you.