Remisson depression

[alexlinney]

Don't really know how to say this, especially with those who are in a current serious flare.

I'm currently 19 years old and just finished my first year of uni. I've had crohns since 15 (2012) and had one period of remission during 2014-15 nov-april (five months due to being granted 4-weekly infliximab (i think the same as remicide). Without sounding arrogant I'm a popular person in my home town and have covered my crohns up to everyone with by heavily using imodium and steroids throughout and the early years of diagnosis.

Then I left my home town and moved away to University this september. Had 0 friends, a flat who hated going out/socialising sport and everything thing i was used to be back home. And from the day i started (despite being admitted a week earlier for corticoid IVF steroids two weeks prior to control my flare). But as soon as i started a flare started and continued - my crohns is controlled primarily by stress. In my head before I joined I went to uni to experience the lifestyle of going out making life long friends like all my brothers had before me. but I dreaded going to pre drinks because you would have to ask to go toilet and even worse unlike at home the toilet in the club had no locks on cubicle doors and were not aloud to leave the club and re enter.

Then in march (university ends, end of june)- I'm awarded four weekly infliximab the only thing that contains my illness. I'm free no blood, one bowel movement a day, no fatigue, no cramps. BUT i still can't adapt to uni i go out with same people and hate every minute. I've decided to drop out now and have found an apprenticeship in same field with day release near home.

But my main point is despite the predisone brain pain, constant flare, overall crohns dread now i'm in a somewhat remission and still can't enjoy my life I Hate it 10x more because I have nothing to blame why its so shit.

IN BRIEF: The overall aim of this is to find has anyone (particularly young) ever felt worse like really low that they can't their life sorted despite going into remission. I don't really know how to explain it, like through the years of flare you blame life problems on the crohns and wish it would leave but then you find remission but you still can't be the "old" you. I feel like even in remission crohns controls my life.

Sorry to anyone fighting for remission this will seem really petty but I can't speak to anyone else about it.

Thanks
Al

 

[ronroush7]

Welcome. I am sorry you are going through this. A lot of us here go through depression. You have found a great place for support.

 

[woops!]

Crohns can control ur life even in remission. U still have to give thought to what u do. "If I eat popcorn... Might end up in hospital...so will pass" things like that. U always have to be aware even when feeling good. Who is your support ppl? Do u have some close friend or family who know u have crohns? I kept my disease from everyone for a few years & it stresses me out. Once I was open with some it was a relief for me. Do you have any local support groups u could go too?

 

[Eridon2002]

I think what you are experiencing is normal for your age. Trying to figure out your life. You have focused so long on the crohn's that now it is not forefront in your mind you are thinking about all the other overwhelming things going on in your life right now. Correct me if I'm wrong but perhaps you are finding that your life isn't going as expected and you don't have the Crohn's symptoms to distract you? Don't be hard on yourself, you will figure it out. You are in at an age that is difficult, where expectations and realities sometimes don't fall in line. Is there a counselor or someone you could talk with to help you sort out all your feelings? Having a good support group is critical no matter if you are in a flare or not.

 

[sleepallday]

Sorry to hear that you're going through this Alex.

I know it doesn't sound helpful but please know that these feelings are completely normal (I even think so for young people without Crohn's).

I am in my early twenties and currently at university/ working (plus have also been deemed as being in remission despite constant symptoms). I get it.
Normally any depression I was getting was attributed to feeling inadequate because of my disease or could be related back to it. Last year, I fell into a hole. It was my first year of university, I couldn't work much because I had such bad anxiety from a terrible boss as well as time off trying to recover from surgery, I broke up with my long term boyfriend because I felt like a burden to him (which then caused him to kick my ass out on the street), my mum got breast cancer, I moved back home and I generally felt like a mess.

Moving back home was the best thing I have done though. It built up my courage. I have been acing university, got a fantastic job in a well respected organisation, travelled to China (and will be travelling to Sth Africa at the end of the month - both on full-paid scholarships) and have found friends that truly matter to me. I'm not going to lie, I still do feel like no one reallllllllly understands me at all and am so put off ever getting into a relationship because of the Crohn's but that's okay. It's taken a long time but I'm finally in a comfortable place regarding who I am and who I want to be. You will get there too.

I suppose what I'm trying to say is that it's okay to feel lost. As crap as it is, nothing that anyone really says will make it better - it comes back to you. What you're doing is fantastic and you WILL find something that just grabs your interest and that will make everything better. Perhaps the most important thing is to not let Crohn's rule your life. It will always be there unfortunately but live in spite of it. Decide what you like, what and where you want to go - then do it. Forget the rest, it will come in time.

If you're open to it, mention how you're feeling to your GI or GP. This forum is a great place for extra support too.

 

[alexlinney]

Thank you everyone.

I forgot to add at end of first year I have decided to leave university and have an apprenticeship back home where i will earn the degree i want on day leave taking 5 years, I feel like completing a year away from home is a mental achievement in it self that i can live through flares. My support net work is narrow; I'm an only child, my dad is silent supportive and my mum in early years when I couldn't find control became obsessed with the disease and looking for natural solutions as I was un responsive to anything bar predinsone which was driving me insane. She's still supportive but once infliximab showed a solution and I'm now an 'adult' she's taken a step back.

I'm only 19 but have had my girlfriend for five years I do really like her she's everything I want but she can't speak about my illness especially when I'm flaring as it gets her very upset. Despite this she now beginning to understand the importance of support particually in times of admission to hospital and will come to visit once signs of improvement. I don't forget that In my early years she was very distant and would refuse to visit but I have to take into consideration we were 14 years old and crohns is a very misunderstood disease and with 'fight or flight' her natural response is to run from fearful things.

My only other question is anyone on an infusion i.e infliximab where you need to spend a day off work at hospital to receive this. Does the company allow leave or do you need to take a day holiday every 4/8 weeks?

Thanks
Al

 

[squidinktea]

Hey Al

My first year at uni was vry similar, I moved away for my first year, really struggled with my crohns, despite it being the best it had been in years, depression and anxiety as well as feeling very isolated.

I, too, ended up moving back home and completely changing program. You should be really proud of doing that year on your own and it is great that you are finding what is good and what works for you.

When you have health problems, you wanna just focus on getting better and think that once that happens everything will be perfect and smooth sailing. And when you get there and things are not the way you want, its hard not to get very discouraged.

I am 22 right now, and it took me a lot of changes and time to get to a point where i realised i was happy with how things were. I got back connected with my friends, having my parents near by was good even if they were more hands off as I was starting to take care of it myself, having a supportive bf was amazing.

I didnt make any friends in my first year, but in my new program I found a bunch of people that I really connected with. Expanded my social circle quite a bit, found people who understood when I was havi g a bad day, that i didnt have to lie or push through how i was feeling to be with.

I also got some counselling, and really started trying to communicate about my health and how it was affecting me to the people who I trusted. Having someone to talk to who can validate and work through this with you and is there to support you is very important.

It is good that your gf is working on being there. I think communication is going to be very important and establishing boundaries so both of you feel comfortable and supported is important. I know my bf wants to be in the loop with my health and to be let know when things happen, but also can't be around when i do anything involving needles. It's important to keep communication open about where you are mentally, physically, emotionally, what you both want and need from each other. Maybe try to open the conversation about how she is feeling during a low stress period for the two of you.

Nothing happens magically. It's a slow process taking back and finding what you lost to your illness. Finding a situation that is good for you is the most important. Finding small things, people, activities that make you happy. Finding a good support structure. Work/education that works for you. It took my until one day in April of my 2nd year when i just had a moment of 'I am happy. Just baseline happy with everything' and wow was it incredible.

I don't know where you are but you should look into your country/province/states laws on working with disabilities. You should be covered with it, and most employers i have had have been cool as well as where i get my meds being flexible about my appointment times, but if you find someone being shitty about it you should know your rights as a worker.