Purpose beyond the Crohns

[MizzSarah]

Im not grieving much over having Crohn's anymore. Not to say there are days when I'm just so over it. Now I'm trying to find purpose beyond this life diagnosis. I have a job which is great but I don't see my body being able to keep up with the requirements of the job forever. I have a lot to think about and carefully consider as there are just some things that work against the Crohn's.

How are you guys coming along with finding your purpose beyond the Crohn's?

 

[Sophabulous]

Im not grieving much over having Crohn's anymore. Not to say there are days when I'm just so over it. Now I'm trying to find purpose beyond this life diagnosis. I have a job which is great but I don't see my body being able to keep up with the requirements of the job forever. I have a lot to think about and carefully consider as there are just some things that work against the Crohn's.



How are you guys coming along with finding your purpose beyond the Crohn's?

Really interesting topic. I was ecstatic when I was diagnosed because I thought it would be a case of steroids, long term maintenance treatment and then life would get back to normal. Finally an answer with a solution rather than all the uncertainty and self doubt.

Unfortunately my case was quite severe/advanced by the time I was diagnosed because I put a lot of my symptoms down to stress, and 8 months later I'm back of steroids again having done liquid diets etc since April without much joy. I failed to take into account that I was going to have to settle for doing less and reducing my lifestyle accordingly. Even though I've now done those things I do feel cheated.

I know eventually I'll strike a balance that suits but it's very frustrating for me in this interim. My work have tried to accommodate me as best they can, but we're a very small workforce and we can't cope if I'm not up to stuff, so I have to kind of get on with it even if it makes me weaker for longer. I've always been offered sick notes etc but I don't want to be off, I just need to do less of the physical stuff. That REALLY grates on me because I've always been quite strong and active and I hate not being able to pull my weight like I used to.

Ideally I would like to go part time to be more productive at work but still have energy/a personal life at home but finances just won't allow it at the moment

 

[ronroush7]

My father used to say that everything happens for a reason. Just know that there is a lot of support in this forum.

 

[MizzSarah]

So many of the things you said I so relate to. I was ecstatic when I was first diagnosed. I had gone on my entire highschool education being sick and none of the doctors could explain away what was going on with me. I was relieved. It didn't even cross my mind how I would have to change a lot in that moment. I was just so happy. Now, I'm more aware of what comes with a diagnosis. Frequent doctor trips. Lots of medication. Hospital stays etc.

I just hope soon I'll know what's the meaning behind all if this. What is suppose to come out of this? What am I suppose to become?

Really interesting topic. I was ecstatic when I was diagnosed because I thought it would be a case of steroids, long term maintenance treatment and then life would get back to normal. Finally an answer with a solution rather than all the uncertainty and self doubt.

Unfortunately my case was quite severe/advanced by the time I was diagnosed because I put a lot of my symptoms down to stress, and 8 months later I'm back of steroids again having done liquid diets etc since April without much joy. I failed to take into account that I was going to have to settle for doing less and reducing my lifestyle accordingly. Even though I've now done those things I do feel cheated.

I know eventually I'll strike a balance that suits but it's very frustrating for me in this interim. My work have tried to accommodate me as best they can, but we're a very small workforce and we can't cope if I'm not up to stuff, so I have to kind of get on with it even if it makes me weaker for longer. I've always been offered sick notes etc but I don't want to be off, I just need to do less of the physical stuff. That REALLY grates on me because I've always been quite strong and active and I hate not being able to pull my weight like I used to.

Ideally I would like to go part time to be more productive at work but still have energy/a personal life at home but finances just won't allow it at the moment

 

[Lizzie]

I am trying to enjoy a more home-centred life than I would have without Crohns, and to appreciate my comfortable home, lovely pets, enjoyable television and music collection, and the garden in summer etc. That's a sort of purpose. I also try to help people more than I would have without the Crohns, so it's made me less selfish I guess. However, I am older now (in my early sixties) and it may be a bit easier to narrow your horizons at this age and to find meaning and purpose in smaller things. That's on a good day, of course - on a bad day Crohns gets me down just as much as it would at any age, young or old.

 

[Sophabulous]

I think in a way we can appreciate things more because we might have to suffer more to do them and trade off the pro's and cons.

That alone is humbling. If this doesn't give you some compassion towards others who struggle for whatever reason then in my opinion not much will. Maybe it's as simple as a different perspective and that's the purpose of this otherwise rubbish disease. To be kinder and more understanding of others and lead by example.

To paraphrase Wilde

"We find our way by moonlight and our punishment is that we see the dawn before the rest of the world."

Enjoy the small things, soak up the sun, spend time in the garden and smell the flowers. Don't sweat the small stuff, enjoy the good and the best things in life are free. Just got to take all that on board myself now ha ha!

 

[Cat-a-Tonic]

I feel like for me it's always a work in progress (that's not necessarily a bad thing, it means I always have a goal to strive for).

A big thing for me is fitness. Before I got sick, I never used to like working out. I thought it was boring and difficult and not worthwhile. Now, though, I have such a greater understanding of how important my health is, and I find that I really enjoy exercise! In the gym, I can pretend for an hour or so that I'm healthy, because I feel healthy in the gym. Most of the time, my illness is on my mind - if not in the forefront, it's in the background, always. But in the gym, my mind is filled with thoughts like, what rep am I on, and paying attention to my form, and listening to my muscles, etc. It's like there's no room left in my brain for sickness when I'm working out. I love it! This is corny, but it's almost like I transform into a superhero when I'm in the gym - most of the time I'm mild-mannered Sick Girl, but in the gym I turn into my secret identity, Healthy Girl. And if I can get back into remission (working on that now, just started LDN recently), the dream would be to become a personal trainer and work with people like us, who might have illness that holds them back in some ways, but still wish to work on their fitness. That's the goal, not sure if I'll get there but it's a nice dream to reach towards. I gotta get into remission first.

I'm also working on myself in other ways. I know I'm a big complainer, so I'm trying to be more positive and have more gratitude for the good things I do have in my life. I'm not naturally a positive person so that's been a bit challenging, ha ha, but I think I'm getting better at it slowly but surely.

 

[ronroush7]

I think in a way we can appreciate things more because we might have to suffer more to do them and trade off the pro's and cons.

That alone is humbling. If this doesn't give you some compassion towards others who struggle for whatever reason then in my opinion not much will. Maybe it's as simple as a different perspective and that's the purpose of this otherwise rubbish disease. To be kinder and more understanding of others and lead by example.

To paraphrase Wilde

"We find our way by moonlight and our punishment is that we see the dawn before the rest of the world."

Enjoy the small things, soak up the sun, spend time in the garden and smell the flowers. Don't sweat the small stuff, enjoy the good and the best things in life are free. Just got to take all that on board myself now ha ha!

Amen

 

[RNGirl]

Thank you Cat. Very inspiring and well written post. You are inspiring me to try to start exercising. I am 61 almost 62, have worked 30 years as a nurse. I'm worn out and tired and crohns has made me even more tired. The one area of my health I have neglected is my own self care. Always giving 1000% to everyone else. Think it's time to hit the tread mill and do it for me!!

 

[ronroush7]

I feel like for me it's always a work in progress (that's not necessarily a bad thing, it means I always have a goal to strive for).

A big thing for me is fitness. Before I got sick, I never used to like working out. I thought it was boring and difficult and not worthwhile. Now, though, I have such a greater understanding of how important my health is, and I find that I really enjoy exercise! In the gym, I can pretend for an hour or so that I'm healthy, because I feel healthy in the gym. Most of the time, my illness is on my mind - if not in the forefront, it's in the background, always. But in the gym, my mind is filled with thoughts like, what rep am I on, and paying attention to my form, and listening to my muscles, etc. It's like there's no room left in my brain for sickness when I'm working out. I love it! This is corny, but it's almost like I transform into a superhero when I'm in the gym - most of the time I'm mild-mannered Sick Girl, but in the gym I turn into my secret identity, Healthy Girl. [emoji14] And if I can get back into remission (working on that now, just started LDN recently), the dream would be to become a personal trainer and work with people like us, who might have illness that holds them back in some ways, but still wish to work on their fitness. That's the goal, not sure if I'll get there but it's a nice dream to reach towards. I gotta get into remission first.

I'm also working on myself in other ways. I know I'm a big complainer, so I'm trying to be more positive and have more gratitude for the good things I do have in my life. I'm not naturally a positive person so that's been a bit challenging, ha ha, but I think I'm getting better at it slowly but surely.

That is great

Amen

 

[Cat-a-Tonic]

You got this, RNGirl! Enjoy your workouts! If I may give you a few bits of advice - start out slowly, don't push yourself too much at first. Listen to your body, and if something hurts or is uncomfortable, stop doing that and try something else. There are lots of different types of exercise and not all are created equal. You mentioned the treadmill - I personally cannot jog due to hip arthritis, so if you find you're in pain, maybe try something else that's lower-impact on the joints, like bicycling. And, most importantly, make sure you're doing something you enjoy. I find I really enjoy weight-lifting, it makes me feel strong and awesome. And because I enjoy it, I stick with it. If you aren't enjoying your workouts then you're not going to stick with them. So find something you like doing. Have fun!

 

[Sophabulous]

You got this, RNGirl! Enjoy your workouts! If I may give you a few bits of advice - start out slowly, don't push yourself too much at first. Listen to your body, and if something hurts or is uncomfortable, stop doing that and try something else. There are lots of different types of exercise and not all are created equal. You mentioned the treadmill - I personally cannot jog due to hip arthritis, so if you find you're in pain, maybe try something else that's lower-impact on the joints, like bicycling. And, most importantly, make sure you're doing something you enjoy. I find I really enjoy weight-lifting, it makes me feel strong and awesome. And because I enjoy it, I stick with it. If you aren't enjoying your workouts then you're not going to stick with them. So find something you like doing. Have fun!

Great advice, I love Pilates but desperate to try a bit of Zumba or Clubbercise for something a bit more upbeat to get the endorphins pumping! Trying to get a colleague to sign up with me so I've got a buddy to have a laugh with. I can't stick to exercise if I'm doing it by myself lol

 

[Cat-a-Tonic]

I'm honestly the opposite, I don't like working out with others. I think that's mainly because I'm a huge introvert, and when I'm working out I just like it to be me and my weights and my music and my muscles and that's it. My focus is 100% on my workout, and I think other people would distract me away from that. Plus I get into my own head so much during workouts that I'm just incredibly awkward if other people do try to talk to me when I'm working out! At the gym one time, a lady I used to work with saw me working out and she came up to me and asked me how work is going. And I was so into my own head that having a conversation about work was suddenly so foreign, so I was like, "Huh? Work? What's that? Oh, that thing I do? At the place? The workplace? I guess it's fine? I don't know? Okay bye!" It was seriously the most awkward conversation ever. I just cannot, I guess, be at all social and work out at the same time. It takes all my concentration just to do one or the other, so I cannot do both simultaneously. That's just me though!

 

[Sophabulous]

I'm honestly the opposite, I don't like working out with others. I think that's mainly because I'm a huge introvert, and when I'm working out I just like it to be me and my weights and my music and my muscles and that's it. My focus is 100% on my workout, and I think other people would distract me away from that. Plus I get into my own head so much during workouts that I'm just incredibly awkward if other people do try to talk to me when I'm working out! At the gym one time, a lady I used to work with saw me working out and she came up to me and asked me how work is going. And I was so into my own head that having a conversation about work was suddenly so foreign, so I was like, "Huh? Work? What's that? Oh, that thing I do? At the place? The workplace? I guess it's fine? I don't know? Okay bye!" It was seriously the most awkward conversation ever. I just cannot, I guess, be at all social and work out at the same time. It takes all my concentration just to do one or the other, so I cannot do both simultaneously. That's just me though!

I can totally relate to that! When it comes to totally relaxing I need to be alone for hours at a time. Candles, hot bath, good book etc. I am incredibly introverted with people I don't know well and don't feel comfortable with. I have 1 good friend I can spend time with who isn't 'draining,' in the loveliest possible way, and she lives 3 hours away now. Bloody typical!!

Exercise to me is a more energetic undertaking and it helps if I have someone else there who I know and trust, and who knows me and my condition (hence the colleague), to keep me motivated and encouraged to keep going even if I really don't feel like it. Left to my own devices I would retreat into books, candles and hot baths even knowing they wouldn't improve my health as much and make me feel as good.

Many moons ago I used to cycle to my horse morning and evening with just my headphones for company. That was nice in the summer but in the winter I hated it, even before I got ill. Nowadays i love the effect of exercise when I have the energy to do it. Then again I love the effect of a nice shower and clean hair when I have the energy to do it after working all day [emoji23]

The daft thing is I always feel better for doing both, it's just a case of stating motivated enough for the payoff! I went to Pilates on my own and stuck with it as far as finances would allow. I just have a mental block about anything higher octane I suppose! I might try to swallow the anxiety and go on my own a couple of times to see if that helps to face up to my fears [emoji6]

By the way, if you haven't already if definitely recommend reading 'Quiet' by Susan Cain. Fabulous book and have me a lot of confidence!

 

[Norton]

This is such an important topic. I have had Crohns for nearly 40 years. I was diagnosed at the age of 18 when I was preparing to sit for Oxford University exams in the UK. Suddenly I could see the life I had planned disappearing. Back then there was a lot of discrimination - did not get into a university because of the Crohns and jobs. But I made a vow to myself that I was not going to let the Crohns win. Despite being hospitalised many times, having a major operation, bad bones from steroids etc I have kept that vow.

I became a lawyer, and then after a particularly bad dose of Crohns in 2000 decided to change careers and start running a charity. I have now been a CEO for 16 years. There are times when this is really hard - pain, diarrhea, etc, but for me work is a huge therapy and keeps me centred. I also think that with Crohns because I was so ill when I was 18, it made me realise at a very young age that life is for the living. You have to grasp it.

And what ever purpose you find will be right for you. It will be somewhere - what is right for you will come to you.

Stay strong and good luck.

 

[Sophabulous]

This is such an important topic. I have had Crohns for nearly 40 years. I was diagnosed at the age of 18 when I was preparing to sit for Oxford University exams in the UK. Suddenly I could see the life I had planned disappearing. Back then there was a lot of discrimination - did not get into a university because of the Crohns and jobs. But I made a vow to myself that I was not going to let the Crohns win. Despite being hospitalised many times, having a major operation, bad bones from steroids etc I have kept that vow.



I became a lawyer, and then after a particularly bad dose of Crohns in 2000 decided to change careers and start running a charity. I have now been a CEO for 16 years. There are times when this is really hard - pain, diarrhea, etc, but for me work is a huge therapy and keeps me centred. I also think that with Crohns because I was so ill when I was 18, it made me realise at a very young age that life is for the living. You have to grasp it.



And what ever purpose you find will be right for you. It will be somewhere - what is right for you will come to you.



Stay strong and good luck.

That's really inspiring, Oxfords loss! I bet very few of those who got in are as tough as you [emoji1320]

 

[Norton]

HI Ronroush, thanks for your comment, Oxford was totally cool with the Crohns. It was Durham University which was not!

 

[MizzSarah]

I wish I could find my purpose...quicker. Most days I just feel like an extra body in a room--just wandering with no real direction.

I've quickly went to school.. got set up in a job in the event of my then undiagnosed medical mystery to worsen. I've altered just about everything in my life. Now I don't know exactly what to do.. 23 just got so much more complicated

 

[Red Rabbit]

There are a lot of things that I can relate to here. Exercise is a great thing to get into and I did this before I was diagnosed with crohns in the form of Karate. However after two major operations, I am unsure whether I could do this again safely. I know it would Be a real benefit to me.

Like MIzzSarah, I also am thinking about Crohns all the time whether consciously or not. I also ask myself what purpose is there to everything. I'm a lot older at 44!

I should change my career because it's far too stressful, but changing a career is difficult to do and I need to keep in the work I do to earn enough. Life is stressful enough and Crohns has sucked all the joy out of it.

Ironically, with all that I have gone through you would think that I would embrace every day that I am not ill but instead I am lost and empty, tired and have no motivation to do anything

 

[MizzSarah]

Keeping this forum alive. I think it's important.

 

[MizzSarah]

I read an article that talks about the metaphysics of illness. I don't know if I agree with what they explain as the reason many of us have gastro related issues. Thought I would share and open a conversation about what you may think has contributed to your illness

SMALL INTESTINES (Assimilation and absorption of nutrients):

IRRITABLE BOWEL: Refusal to take charge. Not assimilating and completely scattered. Victim mentality. Trying to please everyone.



COLON (Collects, stores & moves waste products of digestion):

CROHNS DISEASE/COLITIS (Abdominal pain, diarrhoea, constipation, bleeding, ulceration): Inflexible opinion, fear of letting go of things from the past. Holding onto old beliefs and ideas that they feel fear and guilt about. Insecurity, fear and nervousness when confronting the unknown, strong belief that you are not good enough. What is twisting and distorting you?

 

[MizzSarah]

Been thinking more about my purpose now that a whole bunch of things are going wrong. 2 steps forward and a million backwards. It's just so hard to think about 'purpose' when your so fed up. Pretty sure the last thing anyone should think about is their life meaning when your defeated as can be.

I want my life to have some meaning here. I look at those articles about people making an impact before they pass on and here I am--with lingering questions about what good I have done or will do.

I still believe that sometimes god will heal and then there are some causes where he sometimes intentionally allows sickness to accomplish his sovereign purpose but what is his purpose for all of this? To build character?

 

[cmack]

I believe this disease is to test my will. I also believe it is to help me find others who can relate to me, even in the darkness of the darkest hour of the night. I believe this is a battle cry for a cure. I believe!

 

[Bufford]

I realize now that my purpose is of being put out to pasture to enjoy life and the fruits of decades of toil. Living with undiagnosed Crohn's for most of my working life resulted in the long journey of walking the darkest valleys. I came to believe that life itself was only a journey through darkness.
That all changed once I got the illness under reasonable control. I took early retirement. Life slowed down enough that I could keep up with it and suddenly depression departed and the sun shone down on me for the first time in decades.

The colostomy surgery and the pain of recovery have all been well worth it, and I am making the most of my remaining time. Some of the best things in life are slowing down, and stopping to smell the roses.

 

[Sophabulous]

I realize now that my purpose is of being put out to pasture to enjoy life and the fruits of decades of toil. Living with undiagnosed Crohn's for most of my working life resulted in the long journey of walking the darkest valleys. I came to believe that life itself was only a journey through darkness.
That all changed once I got the illness under reasonable control. I took early retirement. Life slowed down enough that I could keep up with it and suddenly depression departed and the sun shone down on me for the first time in decades.

The colostomy surgery and the pain of recovery have all been well worth it, and I am making the most of my remaining time. Some of the best things in life are slowing down, and stopping to smell the roses.

That is so true, I was only suffering undiagnosed for a couple of years and I thought that was unbearable enough!

I'm glad to hear that you're enjoying life now