Career and relationship with Crohn's

I have just started my work life recently and just wanted to know if people can share their experience in regards to managing Crohn's and still working?

I am not sure what I can expect in the future since my symptoms randomly come and go. I wish I can mostly lead a normal life with this disease. Sometimes, I just come back home straight after work since I am just tired to socialise and maintain relationships with others after work (e.g. dinner gatherings or drinks). Have any of you quit work due to severe symptoms? If so, how do you manage your finances? Any advise.

And does having a fistula affect you in any way from a romantic relationship perspective?

Thanks

Hi, Kancer. I retired seven years ago . After a resection, it was difficult on me physically taking two buses and the subway to and from work. It has been right financially. I have wondered about going back to work part time but have not done anything about it. I have prayed and occasionally someone from church will give us money. I have a wide who has been very supportive with all the surgeries I have been through.

I've been working part time (sometimes almost full time) at my job now for over 17 years. Everyone there knows about my IBD, but in some ways I think it's different because I've been there that long.

Every time a new manager comes, I wait to let them know about my IBD until I've gotten to know them a little. Reason being, I want them to know me for how I work and not because of my medical challenge. If I were in a flare, that might be a little different though.

My husband works too and he works full time and for us that works. My pay check takes care of our everyday needs and his takes care of the more expensive things like car insurance, property tax, etc.

I'm afraid my husband and I don't go out often with others, because of our strange work schedule and usually we're so tired from working. But, once in awhile we're happy to meet with some friends and it's a real treat for us! So, for the most part we're each other's company and that works.

Cross-stitch gal said:

I've been working part time (sometimes almost full time) at my job now for over 17 years. Everyone there knows about my IBD, but in some ways I think it's different because I've been there that long.

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Would like to know if your work is of a high-stress nature?

I literally dragged myself through my career with undiagnosed Crohn's. It was basically a life long torturous trip. Always tired, dealing with pain, planning my day around the toilet, never could get enough rest and being chased out of bed by the alarm clock.
At times I would be accused of being lazy for not keeping up with the tasks which was very very tedious when I had no extra energy to expend.
Then the fistula became infected resulting in a large abscess that required a temporary stoma which I was then told would be permanent. Being close to retirement I went on pension and retired. I could not imagine continuing on with my career in this state, and aging was catching up with me too.

Kancer said:

Would like to know if your work is of a high-stress nature?

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Oh yes, I work in retail and even read last night somewhere that my company is #1 in the places not to work. Which is really sad, because when I first started working here it wasn't so bad.

It's extremely hard for me because I'm between a rock and a hard place. I'm having a horrible time not caring though because I work hard in everything I do and this is no exception. Which is why I was surprised to find out last year that I'm in remission.

I have worked for 17 years full time..only god knows how Ive managed it on times..sheer determination and mental strengh-some days i come in from work mentally and physically wrecked in a state...i have had to have some time off when im in the hospital for treatment (like now) but im right back to it when im well enough. Some days are easy (a normal day to healthy people) some days are tough. I just never wanted to be poor, I've always wanted to build a life for myself, own my own vehicles and house and be independant...maybe that whats drives me through the tough days and i mean TOUGH days. I know not many people could push themselves like i do, maybe its not such a good thing as it is tough on my body (i look after myself 110% otherwise though with a healthy diet, gym, plenty of water, rest, spa days) Plus i don't want to give in to this disease -i will fight to work for as long as i can. Also i use my annual leave wisely and have a day off every few weeks to rest. Work is brilliant if i have a hospital appointment or need to pick up antibiotics from my gp at short notice (im on immunotherapy) but saying that i work hard and don't take advantage so that works for me i suppose as they know i don't take advantage. Also i put some money away when im working to keep me afloat when im ill (it's not fair but life isn't is it). I suggest try it, but don't put too much pressure on yourself.
I find it hard to maintain friendships as im just too tired from work, food shopping, cooking etc so it is a bit of a juggling act. I just catch up when im able to which if im honest is usually every few months.

I’m very up and down with work, there have been times when I honestly thought I would collapse with the exhaustion and malnutrition and other times I cope relatively well. I tend to have a few months of each, but when I’m stressed at work and we’re short staffed and struggling to get everything done it runs me ragged very quickly.

I have to be quite strict in how I manage myself outside work to make sure I don’t overdo it, which is very annoying. Sometimes I’m napping as soon as I get home (and often accidentally sleep through the night fully clothed lol), but when I’m well I can do things in the week after work. I recently drove 2 hours there and back to visit my friend at university and see a show on a Wednesday night which was lovely, but it would be impossible in a million years when I’m not well. It’s hard to commit to plans in advance but if I’m honestly not well enough I’m just honest and my true friends understand.

I used to prioritise work over everything to be honest, I’ve gone in many times when I’m vomiting after just sipping at water and completely dehydrated when in hindsight I should have been in A&E getting fluids. That was before I was diagnosed though so now I know better not to push myself and it’s better to take time off than push through and end up off for weeks. It’s a real balancing act but with some trial and error you should be able to make it work. It helps to have an understanding manager who is aware of your situation and supports you.

It isn’t easy and doctors have told me ‘listen to your body’ but that’s easier said than done when you don’t want to let your team down. It’s the guilt that gets me, but there have been times when due to poor management in the past I’ve been forced into situations where I’ve been completely taken advantage of and end up really ill. My advice would be don’t ever stand for that, as you won’t get any thanks for it and it’s very likely your colleagues and managers won’t have a clue how much more it takes out of you than it does a healthy person. In those circumstances I didn’t find it difficult to be off sick because I know I did my best and any more pushing would tip me over the edge. It might be leaving my teammates in the lurch, but it would be if I carried on and ended up hospitalised too. I still have to justify it to myself which is something I need to work on, as I know deep down I’m doing the right thing and it isn’t my fault or a personal or character failing. I still worry that I’m seen that way but there’s absolutely nothing I can do about it if that’s the case.

My 21 year old self would be embarrassed but what does she know! Some days are harder than I could have ever imagined, but other days it’s great to have a purpose and be part of a team. The balance has shifted significantly both ways for months at a time but overall it’s worth it at the moment. I would love to drop down to part time in a few years when I’m hopefully earning a better wage, or ideally work from home full time. That would be amazing and it’s my aim for the hopefully near future. Anything to make daily life a bit less taxing [emoji6]

Thank you to everyone who shared their story. I am currently at a lucky stage compared to what most people report here as I suffer from anemia, fistula and bloating. But deep down, I know there is a possibility the disease will get the better out of me. I am trying to prepare myself mentally when things go south.

Hoping the best for you.

The experiences shared here are familiar. From what I learned about the workplace is when to say no. I remember when I was in my 20's I had a abscess lanced and drained in the ER and then going on the 4-12 shift and being forced to go home after 2 hours on the job. There is no honor in doing this, and more harm done. I made it to early retirement and have no regrets, now my life is better for it.

If it tells you anything, a few years back I was in a BAD flare and sent home from work because I was in so much pain by my person in charge. Now that person is one of my managers and I'm the person in charge! Kind of strange how the tables turn.

One thing I've learned is to be thankful for the times you're feeling good! It doesn't hurt to prepare for the hard times. But, if you're constantly thinking about that you might miss out on some good/fun things. :hug: