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How do you find the strength to keep going?

Im sitting here wondering where to start and as I do Im crying wondering why life had to be so cruel and how everyone else finds the strength to keep going with everyday life?

Im just really over this disease and how it affects my life and how unpredictable it is. I have been having episodes for the last couple of months on and off but each time my GP or GI put it down to medication not crohns itself which was great news as I wasn't having a flare and once fixed the med felt better again. Well this time feels different it feels exactly how my first flare was and is scaring the hell out of me. It all start on Friday night had trouble eating dinner then when I did straight to the loo afterwards. Sat morning I woke up with extreme nausea and loss of appetite which last most the day.. managed to pull myself together sat night and go over a friends place to have dinner with the girls and play wii. Had too late a night and woke up sunday feeling like crap struggling eating anything and then threw it all back up anyway. Ate lunch to only have to sit on the toilet for the next half hour or so. Then last night was the worse the nausea decided to stick around all night throbbing thru my whole body which in turn made me start thinking bad thoughts and how much I hate this disease. Didn't get much sleep last night, got up and vomited this morning and thought no you are going to make yourself go to work today.. you can do it Tanya... got ready for work and off I went to only get half way there and have to pull over to throw up. Safe to say I didn't go to work but headed straight to my mums place to have a good cry bout how much my life sucks. Probably doesn't help that my hubby has been away since Friday and gets back tonight so I haven't had anyone at home to just vent to or get a hug. Mums are great for that tho. I got to mums place and threw up again and had another few BM. I went for a 1.5 hr sleep which was great but still not feeling much better. Manage to get some food down and hoping it stays down. I did make an appointment with a GP but ended up canceling as I know they will just say see your spec. So Im waiting on my GI to return my call to see what I should do. I feeling lost and down at the moment and feel bad for not going to work.. I know they understand and there is no use me being there when I end up running to the bathroom to throw up all the time and plus I have no energy I probably just fall asleep at my desk. Sorry Im rambling. It probably also doesn't help that we have severe weather at the moment with gale force winds and heavy flash flooding rain so its just as depressing outside.. bloody cyclone up north bring all this heavy depressing rain!

Why does life have to be like this and how do you all find the strength to keeping going everyday when you are feeling like death.

Thanks for listening to my venting it feels good to get it off my chest... sorry its so long.:depressed:
 
First off, **HUGS**

I'm so sorry you're feeling like this. It's awful how completely this disease affects your life, it's not just something in the background, unfortunately often it takes the forefront. Don't even think twice about not working, you really need to concentrate on you right now, and getting well.

i see you were just diagnosed fairly recently, so are still getting accustomed to having Crohns to begin with, and then it comes and rears its ugly head again. :(

I wish there was something i can say or do, but i just wanted to let you know i can totally relate to how you're feeling. it's pretty miserable to hate your own body. I'm so glad your mom was there for you, and that your hubby is home tonight. Hopefully you can get in with your specialist quickly, and try to get things back under control.
 

imisspopcorn

Punctuation Impaired
Aw Tan, I am so sorry you are struggling.

We all do at times. It does get better once the physical pain lessens....I think once you can get this flare under control, you will be in much better spirits.

The thing that has saved my butt many times is prayer. It gives me hope.

Find something that gives you hope and hold on to it!

I am glad you went over to friends. Don't hole yourself up inside your house and become isolated...I always try to go out, even with pain and D. You can always come home, but I find once I am out and enjoying myself, I feel much better.

((((hugs))))) Feel better
Carrie
 
Tanya, you do need a big (HUG). The worst part of CD is the first few years after being DX. It does take a long time to really get your mind completely wrapped around this monster. Even though I've had this for 24 yrs it sometimes gets you down.
You have to have a great family support group like you sound like you have. That is the #1 defense. It doesn't take away the CD, but it helps you cope with it just by knowing that someone cares and will be there for you during the bad times.
It also helps to have a place like CF to come and vent and to cry on others shoulders that can really understand what is happening to you. This is what I didn't have have for 23 1/2 yrs and now that I have it I cherish it.

I have done the work thing more times than I can count. So many times I have had to detour to port-a-johns that I have discovered on my way to work.

Find strenght in every place you can. Stay strong when you can and let others be your strength when you need them to be.
Good luck hon and keep us up to date.
 
Oh Tan, sorry to hear you are having a rough time! i hate to hear someone normally as upbeat as you, feeling like this!
I can't really offer any great words of wisdom. I was talking to my brother the other night about how i struggle to get through day and he said 'Every day is like open heart surgery for you!'. I know that is an exaggeration but every day, well ALMOST every day is HARD. My bowel symptoms are okay but the fatigue is doing my head in. I feel like i could stay in bed forever but you can't can you?

So i get up and do what needs to be done but I woulnd't say i have in any way a 'normal' life. I guess i function at about 50% of a 'normal' person and just have to make the best of it.

At least you can look forward to some hugs when hubby gets home :)

meanwhile you can have some from me (((((HUGS))))))
 
Thanks guys it really means a lot to be able to come to a place like this forum and get the support that is offered from you guys. Its helps that others know what Im going thru as they too have experience it.
Pam - I did only get diagnose in mid sept so its still a learning curve for me... I think I start to get better cause I have a couple of weeks without pain, nausea, vomiting, bm and then out of no where it hits me again. Im confused as to why it just pops up when I have been doing so well... feels like it doesn't want me to be happy. Its also hard because Im only new to the drugs so my GI is trying to work out if Im reacting to drugs or if im having a flare and unlike most people who inflammation markers are high when in a flare mine have always stayed low. The only time it peaked was when I had a reaction to Imuran.

IMP - thank you for your support and yes it does help to get out even if you don't really feel like it. I had fun that night with my girlfriends and it was nice to feel normal.

Pirate - it does take forever to get your head around this disease I sometimes think Im doing really well with accepting it and then other times Im just like why me, its not fair. This disease plays with your emotions so much makes you feel crazy sometimes.

My GI called me and asked what was going on so I told him bout my symptoms how I was feeling both physically and emotionally and he said that not to take my 6mp today which I already had but threw it up and see how I feel tomorrow. If worse tomorrow I need to call him and he will admit me to hospital so he can do testing and figure out what is going on whether its the meds Im on or having a flare. So that made me feel better that he was quick to get back to me and also wanting to get on top of it all quickly. Plus tomorrow is a public holiday for us Australia Day so I was pretty impressed when he said to call him on his mobile on a public holiday. Im feeling a bit better in my self emotionally after talking to you guys and getting a big hug from mum, plus my hubby called and said they may be home earlier this arvo then tonight so fingers cross.
Thanks again guys you mean the world to me. xxx
 
Thanks Shaz.. I know what you mean 50% function wise.. but why does life have to be like that when everyone else gets to have a normal life... I really hate it when my friends complain bout being under the weather or something like that Im like hey Im like that most of the time. Or my other friends don't seem to understand the disease at all I feel like showing them this forum so they can get a better understanding. I know they mean well but I keep hearing god I wish these doc would get there butts into gear and work out whats wrong with you. Im like I know exactly whats wrong with me and its not something thats going to just be fixed over night. They think if you are taking meds then it should all just be good... ha..ha.. if only. They also had a go about my GI and I of course got defensive because he actually is a really good doc and has been good to me he always calls me back and listens to me etc. they think he is hopeless cause Im still sick. Its funny how some people think.
 
Tan,
I'm glad you are getting help with this flare. Good Drs are hard to come by and your's sounds great. Mine is the same way about calling back and listening. She is really great about moving things along.

Good luck and keep us updated on what's happening.
 
There is nothing fair about the disease, or life for that matter.
I often tell everyone it feels like I got a 'lemon' body and would like
to trade it in for a new one! :tongue:

It's all about the three 'F's for me.
Faith, Family and Friends.

Those three things make life worth living, no matter how crappy it may be.
For me, I know that this life and this body are temporary things and that
when I get to heaven it will all be so much better. That knowledge alone
helps me tough it all out and continue on during my lowest points.
I felt this inner strength when I was deathly ill and dying in the hospital,
and I felt this when I recently faced the loss of a loved one.

keep those you love close. Hope you find relief and happiness soon!
Hugs,

MINI
 

Crohn's 35

Inactive Account
Hi Tan, I tell ya your fears are vindicated as I was feeling the same way lately. I was getting my flares like I was over 17 years ago everything but the vomiting... I couldnt get it under control and I was lucky I got a Gi appt the same day! Week ago and since then had a colonscopy, results were the same as last year, same ulcered areas but no narrowing..having said that it doesnt explain why everytime I eat I am in pain. My husband is gone for 2 weeks out of the month so I avoid meat because if I am going to obstruct, meat will do it. Today was the first day no major pain, although I ate at dinner and it is coming back a bit.

I wonder my self all my adult life how do I do it and what do I do now.. btw 6mp made me ill too, I went off it on a weekend and my gi called me at home to get off of it and told him I already did. That could be the reason. Lets hope it isnt worse.

I still have a bone density (he wants me on Pred but I am refusing, so he wants to know if I could or am I warranted to just do as he says.)

I still have a ct scan to go, I can't believe there isnt nothing more. I guess what keeps me going is saying to myself, this too shall pass.. Some times it does and sometimes it dont. I am sorry I am not much help, just letting you know I know how scared you are, me too! Huge hugs!
 

GoJohnnyGo

One Badass Dude
Hey Tan,

You WILL feel better at some point. And you will be better for it too.

I can already see you lending a sympathetic ear to others. That's why I know you will be okay in the larger scheme of things.

Crohn's is a war. A war in a very real sense as far as pain and suffering goes.

Welcome to the foxhole!
 

merrywidow

mum with a dogdy tum
when you have good days, you look back and wonder how you coped with the bad days.
but you do cope, you have to.
 
Thanks everyone its great to have a place to come to for support.. you guys are great.

Im still not feeling great today haven't thrown up as much as yesterday and didn't have as bad nausea all night so thats probably a plus. Just over feeling like crap at the moment. I go and see my GI tomorrow afternoon to see where we shoud go from here I have to stop my 6mp for now just to see if that makes any difference. Oh well hopefully start to get on road to recovery soon.

Thanks all for listening.
 
Tan, I'm sorry to hear that you are feeling so bad. I have been going through the naseau thing for a few weeks now, so I know how you feel :( I promise it gets better, just hang in there!
I too am new to this Crohn's stuff, I was diagnosed in July 2009 and I've been having the same thoughts as you, it is definitely hard to wrap your head around at times. I thought that I took my diagnosis pretty well but then I started feeling crappy again and I've realized I haven't come to terms with it yet.

I saw that you had a reaction to the Imuran 5 weeks after using it..what kind of reaction did you have? I was on that as well and they think I may have had a reaction but I am convinced it was a panic attack. I go back to my GI in the morning and I want to see if they will let me try it again since I was doing so well on it. (I was on it for 4 months before my panic attack/reaction).

Good luck and I hope you get feeling better soon!!
 
Hi Nic,

Yes had a reaction to Imuran after 5 weeks the doctor thought I wasn't as I had been on the meds for a while but my blood work came back with really high inflammation markers which haven't changed the whole time I have had crohns! I also had similar symptoms to crohns like the nausea, vomiting, upset tummy, rundown feeling and red pinpoint dots on my face, neck, arms and upper back.

I know what you mean by thinking you handled being diagnosed well... I did too, I think I had fooled myself because I felt so great seeing as I was on pred for the first 10 weeks after being diagnosed so my life felt like it was going back to normal and I thought yes I can handle this crohns thing its not that big a deal but then once I came off the pred and was only on imuran I began to have issues again and realised it just isn't that easy. I too only got diagnosed in Sept last year and keep having issues every month very over it all. But hopefully will get there soon. Saw my GI this afternoon and got some blood work done to see if Im having another reaction this time to 6mp, I have stopped all meds 3 days ago and today actually feel alot better, go back and see him again in 2 weeks to discuss my options but if I get worse again I have to call him straight away.

Good luck with your appointment tomorrow maybe your GI can try you on 6mp its the sister of Imuran so very similar just your body processes it differently. Its great to have somewhere to come and talk with others that can relate to how you feel.
 
Hey Tan! So I went to my GI appt today and he doesn't want to put me back on the Imuran right now, because he said that its a good possibility that it was a reaction even though I had been on it for 4 months. I might be moving soon and he doesn't want me to end up sick and have to start all over again with a new GI, so he said I could try Humira for now. Should be starting that within the next 2 weeks! I had prepared myself for the Remi so now I have to readjust and prepare for the Humira :) I'm no good with shots and needles so it should be interesting!!

Hope you get your meds figure out soon so you can start feeling better!!
I'm hoping my positive experience at the docs today will keep my head up and get me through until the Humira starts working for me!!
 
ohhh tan. i have no special words of wisdom for you.

my method of coping is dropping to the floor sobbing whenever my "why is life so %**$#@*%$*#@@% difficult!!!!!" complex gets full. which is often. and usually becuase of things like trying to cook eggs that keep burning. or the plastic spoon i chose to stir the pasta with is melting all over it. or seeing that look of dissapointment/exasperation on a parents face.

i concur with you.
lifes a bitch.

but theres no other choice except to just keep trying to climb out of the hole. no matter if its the 5230958208th time or not.
take comfort in the fact that it is one less decision in your life that you have to make.
 
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I feel your pain Tan. Remember it's still early days. I just came off pred too after feeling quite well and things are taking a downward tumble. It's frustrating but I have to believe that I will find the right drugs for me in the end and I am sure you will too. Hang in there - it will get better for you.
 
Hey Tan, So sorry that you have been having such a rough time. Your doc sounds like a keeper, hopefully he will get you feeling better soon. Also, a nice hug from your hubby should at least help to raise your spirits. Hang in there lady.:)
 
Thanks everyone your thoughts mean the world to me.. well I have been up and down for the last couple of weeks last sunday went down hill but came good after a couple of days.. since then have been pretty good.. fingers cross I stay that way for a while! I go see my GI again on Wed to find out what avenue we are going down next in regards to drugs. Im not sure I was having a reaction to the 6mp considering I was sick again last weekend after being off it for a week. Im tempered to stay off drugs seeing as Im feeling ok but I know that isn't really an option. Will keep everyone updated after my appointment on wed to let you guys know what he says and what drugs Im trying next!

Thanks again you guys rock!
 

farm

Captain Insaneo
Tan,
It's so great that you are feeling good now. I really hope it does nothing but continues!!
 
Glad hear you've made some improvement Tan
hopefully it's a sign of good things too come

hugs for ya
 
Thanks everyone for your support it means the world to me!!

Quick update... I went to GI today and he gave me two options:

1. Go back on 6mp but at a lower dose and see what happens as my levels were all good so may have just been too strong for me.

2. Go off drugs all together and see what happens if I flare I can call him straight up and he will put me back on drugs and get me better quickly.

After talking bout it we have decided to go with the no drugs route and see what happens, I can always go back on 6mp if I don't fare so well... I have been feeling really good lately and have been drug free so far for just over 2 weeks so hoping that it will stay that way for awhile! Wish me luck :)
 
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