Finding a lifestyle balance

[Ronald]

Throughout my entire life, I've always been one to overindulge, pick up bad habits (and addictions) and fail at moderation. Currently my vices in life are mainly drinking and eating unhealthily. I did smoke, but thankfully managed to kick that habit almost a year ago.

Now I have a diagnosis, I simply can't ignore the fact that I need to change my lifestyle in order to get well again. It's still early days, but I'm struggling. I'm 21 and it's going to take a bit of rewiring and growing up to get myself out of that mindset that to have fun, you must get drunk and eat like a pig.

Drinking alcohol in my late teens and early adulthood has probably been a crutch for me in certain social situations and sometimes I can/do abuse it. I wouldn't call myself an alcoholic by no measure (I drink with friends, at certain times and don't have it for breakfast at least!), but when I do drink it's to...feel it? Anxiety is a huge factor in all this too.

I guess my question is, are there any others here that have had to make some big lifestyle modifications and struggled to do so? I have a genuine desire to be well and reach a place where I can still go out and enjoy life, without putting my health/life at risk. It's time for me to realise I'm not that teenager anymore who can drink/eat/do whatever he likes without consequences. I have a chronic illness and need to take medication for life - which is a new normal for me.

This post is probably all over the place because I just woke up and I hope you understand where I'm coming from. I've been wanting to write this post for a while, but couldn't and still can't really express what I was trying to ask. I suppose this is me putting my cards on the table and facing up to it all.

I still nearly didn't post this, maybe because I'm ashamed. Who knows? Thanks for reading and apologies for the lack of structure, I've woken up and just felt the need to share my thoughts with you all.

Lewis

 

[gotumtum]

Hey Lewis

I get where you are coming from

Although undiagnosed, I have a similar problem, but with sugar.
When I was pregnant I got gestational diabetes, and this opened my eyes a lot about how much sugar I consume. I managed to eat properly while I was pregnant - for the good of my baby i think - but after having her, and all H**L broke loose with my digestive system, I have lost motivation, and energy to fight for a better diet. I have to eat gluten free anyway, with makes it even more difficult.

I really need to get back to eating less sugar, as I don't want to end up with type 2 diabetes ( there is a higher chance if you have had Gestation d) and I know it is better for me.

Its just time, and energy and organisation.
And I need to exercise more regularly too...



I think that part of all this is about overall quality of life - making some changes that are difficult to make now, but make a difference long term. Which is difficult as I like my rewards now!!! Part of the problem is also that I eat sugar when stressed. I think for me it is also about making time for myself and self esteem stuff. I need to value myself enough to prioritise my health and that means planning meals and snacks.

I suppose for me what makes changes easier, is to break it into smaller steps, eg research, plan for various scenarios so I don't relapse (or in case I do!), Small first step then into it. - Though at times when procrastinating I just have to jump into something

I think it is great that you have 'put this down on paper' and its very proactive of you to be thinking this way.

I know that for me exercise makes me less interested in sugar (chocolate!!!) and Pilates with the quiet relaxing bit at the end seems to help too.

Do you think that some sort of relaxation technique/exercise/counselling could help with this phase of your journey? I think it is great that you have shared this part of your journey - I am sure that this thread of struggle with lifestyle modification will ring true for a lot of people. Thankyou for being honest about this and for bring it up. Hopefully it will be the motivator that some of us need

 

[Ronald]

Thank you gotumtum! That's exactly what I wanted to do, put this down on paper and get it out there. I'm glad to hear I'm not the only one struggling with this!

Sugar is one for me too. I think we all struggle with that one. One of the worlds most dangerous yet widely available addiction. Diabetes is definitely something you wouldn't want on top of IBD...more medication.

I agree, I think small changes now will make a hell of a difference for us in the future. I'm sure my quitting smoking already has. I do perhaps need a way of exerting energy. I spend most of my days in my room because I don't have a job at the moment, which sucks too. Exercise is definitely on the cards for when I have my symptoms fully under control. I could do with a hobby too - it's just finding something I'm good at! Since being diagnosed and starting treatment, I have a thirst to do positive things, but I don't know how because I haven't for so long.

Next time I speak to my GP I will mention my anxiety to him and hopefully I can get a referral to a counselor because it's something I don't speak about a lot, but struggle with most days. My journey is a slow one, but hopefully once I start getting better I can inject some life into it.

Maybe we can use this thread in an AA-esque manner and put our vices on the table and help each other with them.

 

[gotumtum]

Yup - I think helping each other would be great - a problem shared etc.....

And I have come to terms with my sugar problem - it is an addiction. I have been eyeing up my freezer hoping to be able to use that somehow to help me...

I think that seeing someone about the anxiety would be a good step - I have a family friend that has severe anxiety - and has come a long way - from being housebound to planning an overseas trip - It has taken time, and energy on his part. But obviously worth it for him. - By the way I have noticed that i get a little bit anxious when I am low in magnesium. I know that this is not going to solve all your problems - but it may take the edge off?

OK - So my next step is to go to pilates next tuesday night. (This actually take a bit of organizing and inconvenience so is actually a big step!) Have just booked husband for childcare -

Whats your next step? - Have you got an appointment booked for your GP or was it just a next time thing...?

Does anyone else have any lifestyle goals?

 

[UnXmas]

Don't be ashamed. All sorts of things can lead people to addictions, or bad habits, or whatever. I've always been such a "good girl" - never smoked, never got drunk, always exercised, ate healthily, got all my school/uni work done... but now I have a terrible addiction to codeine, and no matter how much self-discipline I like to think I have, my body physically responded to the medication and I end up giving in to that physical need. I also end up not eating enough, and trying to do too much and tiring myself out. I may not overindulge in the typical ways people think of, but, for me, not eating is as comforting as overeating is for many others. Anyone can develop addictions, I think it's just that different personalities and different circumstances make them manifest in different ways for different people.

Do you have friends and family who are supportive? I know what it's like to look around you and see so many people taking their health for granted - this was especially prevalent when I was at uni, and there was such a huge culture around getting drunk. But there are people, and people your own age, who will know of other ways to have fun, or who will include someone in their social life even if that person doesn't get drunk like they may do.

I got ill right at the start of my teens - my biggest issue around taking care of myself now is that my health feels like a lost cause. I think this is the hardest thing to get your head round - you're not to blame for your illness. We don't have the ability to control our health, and you shouldn't feel guilty or like you've failed if you're not able to keep yourself well. But at the same time, don't fall into the trap of thinking that if your health is going to be poor anyway, it doesn't matter what you do. You can still have a very full and happy life with Crohn's, and it is still very worthwhile for you to do what you can to improve your health as much as possible within the limitations set by the illness. You will benefit from taking care of yourself.

 

[Cat-a-Tonic]

Speaking as someone who made a major lifestyle change after becoming ill, for me it took hearing from someone else in no uncertain terms how bad I was and how much I needed to change!

I'm talking specifically about exercise. Before I got sick, I would sometimes exercise in an effort to look better - it was purely for superficial reasons. And because it was for superficial reasons, I didn't enjoy exercise at all. I hated it, thought it was difficult and boring, had to force myself to do it and sometimes just skipped doing it if I didn't feel like it. Then I got sick, lost a bunch of weight - and surely lost some muscle mass as well. After a year of that, I spent 7 months on Entocort which as a side effect can also rob you of muscle mass. So basically at the end of all that, I had very little muscle mass. Almost none.

Around that time I got diagnosed with arthritis in my hip, and my GP sent me to physical therapy. At my first appointment, I went in with the expectation that my physical therapist would just assess and work on my bad hip. Nope! She assessed my whole body, and it was not a pretty picture. She told me in no uncertain terms that things were bad. "Your good hip is about equally as weak as your bad hip. Your knees are also very weak. So are your ankles." And so on. Basically my entire body was a mess, even though I was in remission. I knew I had lost some muscle, but I didn't realize (or didn't want to admit to myself) that it was that bad! So when she said it to me, I couldn't hide from it anymore.

Doing the physical therapy exercises felt good, and I realized I needed to work out more than just doing the PT routine. I needed to lift weights to regain some of my muscle mass. And, once I started doing it regularly, I found that for the first time in my life that I really enjoyed doing exercise! It was no longer difficult nor boring. It was wonderful! I had found that, being sick, I'm pretty much 24/7 in the mindset of being "sick girl" - I always have to think about my illness, my symptoms, my meds, etc. It's always got to be on my mind. But in the gym, I find I can put all that aside for an hour or two and be "healthy girl" for a little while. And that's become the best feeling ever. And, because I'm now exercising to work on the inside, no longer for superficial reasons, I find I really stick with it. I'm always motivated to work out.

Sorry that was so long, but that in a nutshell is how I came to change from a person who hated exercise into someone who loves it! So Lewis, if you're looking to change your diet, perhaps try something similar - have an honest look at your diet with a nutritionist or dietician who can tell you in plain terms how awful your diet is, and maybe that'll force you to accept it the way I was forced to accept that I had an extremely weak body. Good luck!

 

[gotumtum]

Hey LewisS

Just thought I would note that I have not gone to pilates tonight!

I am going to focus on getting this assignment done and then work on food and exercise.

 

[Ronald]

Hey

Sorry I haven't posted in a while. My heads allover the place which I'm thinking is due to the prednisolone. I see my GI on the 10th to begin taking azathioprine, so I'm going to bring it up to him then because my anxiety is through the roof. I struggle to even coherently write this post and think of the words to use to express what I want to say, because my mind is working ten to the dozen.

@UnXmas It goes to show how even the most levelheaded people are susceptible to addiction, like you say, due to the most unexpected of circumstances.

I would say I had a supportive group of friends and family, but sometimes it's hard for them to understand the mental health side of things. I strongly believe my crohn's is closely linked to my anxiety, but we only ever get told about the physical symptoms.

I do somewhat blame myself for my disease. Was it the drinking? Smoking? Could I have eaten better? Perhaps some of us are genetically predisposed to the disease, but it takes something to trigger it, like excessive drinking or smoking. But in your case, how could that be? I also feel like others think I bring it on myself. There's always going to be that guilt of not putting my health first in the past (and still even at present). Everything I do, the plans I make, lifestyle choices etc. are dictated by the disease and it's up to me to decide whether I do those things and deal with the consequences later, which more often than not, I do.

@Cat Exercise is one we all struggle with, myself in particular. Your situation is a good example of how I think you need to see (and feel) results in order to start enjoying fitness - I always give up before that point unfortunately. For you, relief of your arthritis is enough to motivate you and I hear exercise is good for mental health too, so perhaps its something I should try too.

@gotumtum I envy your dedication! How's the war against sugar going? My diet is appalling lately which I'm sure isn't helping my blood-sugar levels either. I've also put on a stone (14lbs) in weight, which was expected, but it's happening so fast! Worryingly the weight seems to be settling mainly around my mid section, so I too am kinda worried about diabetes induced by steroids.

Lewis

*this post could quite possibly make no sense at all for all I know.

 

[gotumtum]

Ha - Lewis my plan has one awry - My household is sick, and I have my assignment to do - So my new plan is to get assignment done, and then worry about the other stuff.

I totally understand about the mental health stuff - very difficult to understand unless they have been there themselves

I did read that someone else on here was having anxiety with Steroids, and now takes the other steroid - Um...does it start with B and acts more internally rather than systemically, but is not as strong...Ah here it is

Budesonide / Entocort - Though may not be strong enough, or act in the right area for you.

I can totally understand the self doubt and worry that you are going through, and if I am diagnosed, will probably go through the same process myself. Just keep an eye on yourself and make sure that it doesn't go on for to long as it could be a sign of depression...

Do not blame yourself for this. How many people have lived this way and not developed Crohns? - I believe genetics, luck and biological circumstance result in crohns. In my case if I do have it, I think that pregnancy is part of it too - but not for you i assume!!!

Sometimes when I get overwhelmed, I think well, this is here I am, and we only get one life (depending on your belief of course), and I have to make the most of it. I can spend this time worrying (I come from a long line of worriers!), and sometimes worrying is helpful mentally to work through stuff mentally. But sometimes it is not productive. - In saying that - it sounds like you are coping OK with this diagnosis. It is life changing - and give yourself some slack - Life is hard at times, but it does get easier

A couple of ideas for you to think about - Would it be worth talking to a counsellor about this new phase of your life just for a few sessions? - They can be a sounding board, and sometimes it is helpful to get these ideas out in the world to speak them sometimes lessens them, rather than thinking about them all the time.

Also - One option is to try being gluten free -(this would also include alcohol - but there are some gluten free drinks)

I know of 4 people (including me) where gluten affects mood and increases anxiety levels. - So I totally understand that there could be a connection between crohns and brain - a google search for gut brain connection might have some more info. There was also a thread on here about bacteria in the gut affecting mood and personality.

Also - your vitamin and mineral levels may not be helping the situation - You could try a bath with epsom salts for magnesium - which can be relaxing.

Also exercise can help, and might be an option for you if you have the 'nervous energy' that some people on prednisone mention.

I think the other thing to remember is that the prednisone should not be forever - when do you start tapering? - This could be something to look forward to and keep you going for now.

Sorry this is really long. Hang in there - things should get better soon - and you know what the problem is now

 

[alex_chris]

I guess my question is, are there any others here that have had to make some big lifestyle modifications and struggled to do so? I have a genuine desire to be well and reach a place where I can still go out and enjoy life, without putting my health/life at risk. It's time for me to realise I'm not that teenager anymore who can drink/eat/do whatever he likes without consequences. I have a chronic illness and need to take medication for life - which is a new normal for me.

Lewis

Well, first, there is no reason you will necessarily have to take medication for life. I for certain periods in my life was able to get rid of aza. It is a question of managing Crohn's (not necessarily always with drugs).

As to lifestyle choices, I was never the party guy and while I have been completely drunk a few times when I was younger, it never got me hooked.

I rather always enjoyed sport, being in nature and doing stuff I love (technology related). As all of this is good for Crohn's, I was not forced to cut back on that.

Where I had to make concessions for Crohn's and which took me many years were when it comes to food. I can't eat onions or certain foods principally junk food and for a long time I did not have the discipline to avoid those. I also over seasoned food which got me into trouble. I also was hooked on coke (not the drug, the genuine all American Coca Cola ) which I needed to seriously cut back on.

As to going out and partying, I am older now, so no real need for that, but it is true in most instances a long night of partying (even without alcohol) usually does get me into a bit of trouble with my intestines. But no need to avoid this any more as it is rare anyway.

One question, how disciplined are you with regular endurance sport? It does help a lot.