Is anybody else in this situation?

[violetcreams]

is anybody else in this situation?

I just can't get this thing into remission. I've been a complete mess for over a year now. I've been on budesonide & pentasa for a year & I started taking azathioprine two weeks ago. It's 2 a.m here & everyone's asleep & I'm in dreadful pain & I feel really sick. I'm feeling so upset & isolated. People don't even ask how I am anymore. I'm sure they're pig sick of me saying the same things. I'm sick of hearing myself saying them. I feel like I can't cope. I feel like I have had enough of this crap quality of life. I understand that I have a chronic health condition but I thought there were supposed to be periods of relative wellness, with periods of flare up. Is it normal for a flare to last this long? For these meds not to take it into remission? Is there anything I can do? I keep waiting for the meds to do something. I have tried to be patient & to trust my consultant but this is going on & on & I can't see any light at the end of the tunnel.

 

[shazamataz]

Hi Violet - I hear you!

I'm not in the same situation as you as this is all only a couple of months old to me, but I do fel your pain and isolation and worry. It is hard for other people to understand and I find myself getting frustrated with even my dearest friends when they say things like 'Keep your chin up' and 'You'll be fine' when they are carrying on with their productive and happy lives and I am sitting here with such an unknown future ahead of me.

Somewhere inside of us we have to find strength to really manage this on our own. I feel desperately lonely at times as I live alone and coming home to an empty house after diagnosis and appontments with all sorts of difficutl decisions to make is not fun at all. Plus being alone means there is more time to think about it and worry.

I don't know exactly how unwell you are, but I have found that getting out and walking helps a lot. I had really let my fitness go before getting really ill and working back on that is not only a positive thing in so far as knowing it is good for my body, but also helps heal the mind as well.

Finding someone who understands I think is really important. I have one friend who has Crohns and has had it for a long, long time and is doing pretty well on the SCD diet and has never had any meds since the original Pred 7 years ago - so she gives me hope! While her liofe isn;t 'normal' by other people's standars she is living well and happy. She is the one I turned to yesterday when things got to be too much. So, if you can, find one of those. There must be a support group in your area?

I don'k know what else to say but hope you get trhough this. As Shantel said, perhaps you may need Pred to quiet things down?

Hugs
Shaz

 

[violetcreams]

Thanks you two. I pretty much slept through the weekend. I was so exhausted!!!! I don't think people without this condition can even begin to understand the fatigue. I'm so pleased I found this site with such lovely people who understand.

 

[Jonhenry]

Hang in there, you might need to switch meds to find what's right for you. Like Shantel said, this site has an understanding of what other people are going through. Dig back through the posts and you'll find alot of good advice and wisdom. This disease sucks, but as alot of people on here prove, it's manageable. Keep plugging away

 

[kjhngisd]

one of the other things about it is that so much of the fatigue is caused by a lack of nutrition. If your body can't absorb the right vitamins and minerals, you'll have no stamina.
And if you can't absorb protein, you've got no stamina.
And if you can't sleep well, you've got no... you get the idea.

The fatigue is part of what steals your life, but it's tough. There are days you need to give into it and days you need to fight back, and learning which is which is so hard... and ever changing.

Best to you violet.

 

[bruscar]

Hi Violet,

I haven't been on for a little while, so sorry if this post is a bit late !!
But basically i am having trouble for the last 5 years with 22 hospital admissions, 5 surgeries and a permenant ileostomy.

On the brightside i have three wonderful children who see a lot of their dad and an incredible wife......and i am still here.


You hang in there me ol' matey, you will beat this horrible disease. To do so you must believe it though, in a utterly confident manner.

I genuinely wish you well.

Bruscar

 

[violetcreams]

Thanks all. Trying to keep remission in sight.