How do you deal with the fear of pain?

[Jer's Girl]

I know it sounds obvious, but I have developed a severe fear of being in pain. I have had severe Crohns for 14 years and am now finally feeling like I might be going into remission thanks to having an illeostomy for six months and letting my bowels rest (just had my reversal five weeks ago if you do not know my story).

Although I am still recovering, I am doing very well, for really the first time ever. I am going back to work next week (a whole new set of fears there).

My problem is, that I have been in pain for most of my life, but nothing compares to the pain I have been in this year. Before my ileostomy, I was in so much pain that I actually wanted to die. The only thing that made me not do something to end it was my family and the hope that things could get better soon.

After I healed from surgery, which took a few months of pain, I felt absolutely great. For me, an illeostomy meant no Crohns pain at all. I had my ostomy for six months, then I decided to have it reversed. My feeling on that are too complicated to go into right now. Long story short, I am grateful to get a few more years without the bag and hope to not need one again, but I do miss a lot of things about having it, such as really being Crohns free, pain free, eating what ever I wanted and being able to live life in a whole new way. Traveling was so fun without the fear of cramping and pooping myself!

Any way, during my recovery time from my reversal surgery, I have had some problems with my bowels waking up that were extremely painful and caused me to go back into the hospital again for a week. That pain was so intense, I couldn't even speak, and the scary thing was, it took a really long time to get out of it. I am used to suffering in waiting rooms, but this was day after day of pain meds not even touching the problem.

So now I am doing well, but the fear of being in pain like that again is infecting my life. More than one time this year I have been in pain to the point that I honestly felt like I couldn't take it any more and I am so afraid of being in that position again.

I have been to the hospital at least ten times this year, most trips for several days to a week.

I know that I need to learn to live for today and appreciate what I have now and not worry so much about the future, especially since things are starting to go so well.

This fear of pain is just new to me. I have always dealt with pain, I guess this year I just reached what I felt was my limit.

Any way, I guess this is more of a rant than anything so thanks for listening. I really am grateful to be alive and feeling better every day.

 

[fadingsun430]

I think everyone who experiences chronic illness develops fears and anxiety related to their condition. I, too have thoughts off what if this happens, or what if i get sick at school, work, etc. For a long time i was feeling better physcially, but mentally i was still depressed and anxious about the future. I couldn't enjoy my remission because i was always thinking things like what if my pain comes back and im miserable again, what if i lose all this weight again, what if i have to put my life on hold again. But the truth is if you think about all of these things you will drive yourself mad. I meet with a psychologist to talk about my fears/anxieties and i found it has helped a lot. Although i take no medication for my mind, i find talking to someone and learning relaxation techniques such as deep breathing, etc has helped. It is obvious stress plays a role in the disease and learning to cope with your anxieties is important.

 

[xoxava]

I totally understand what you feel. I was also at a point I'd rather die then go through the pain and nothing could make it better. I also got afraid of eating bc I knew I would hurt and it would just come out anyways. I think its normal to be afraid esp with the pain we have to go through. Hope you hang in there!

 

[effdee]

I just tell myself I can get through it because I've already been through worse when I was younger.

 

[vonfunk]

I just tell myself I can get through it because I've already been through worse when I was younger.

I'm the same, In all honesty I can never say 10 at the hospital when they ask how much pain I'm in. Because nothing has ever been as bad as when I had my first flare.

I know it will never experience the same level of pain I once was in, well unless I got shot in the groin, I think that would probably be worse.

 

[Astra]

Hi Nicole

I think Cognitive Behaviour Therapy would work well with you.
It works by changing the way you think (cognitive) will change the way you act (behave) and not dwelling on the past, but the here and now!
It is very effective and it does work
Talk to your doc about this and ask for a referral
here's a link

http://www.nhs.uk/conditions/cognitive-behavioural-therapy/Pages/Introduction.aspx

hope you're ok hun, hang on in there, you've come so far!
Joan xxx

 

[Shannon]

I too dread pain but I like to think that I (as well as a lot of us, surely) have developed a greater tolerance for it, and it seems like the little things trouble me less, which can be a blessing. That being said, I am extremely proactive about pain and I don't let it get to 3 out of 5 without some action, because of fear it will escalate. The only problem I really have is sometimes I let the fear affect my eating habits, like if I've been in pain for awhile, I will refrain from eating as frequently because I just can't take it anymore.

 

[Katiepede]

Hi Nicole

I think Cognitive Behaviour Therapy would work well with you.
It works by changing the way you think (cognitive) will change the way you act (behave) and not dwelling on the past, but the here and now!
It is very effective and it does work
Talk to your doc about this and ask for a referral
here's a link

I had CBT a few years ago, not associated with pain, but because I was having very bad panic attacks when I tried to go places where there were no loos. I found it to be very useful... and although if I am having a bad time health wise I still get a bit panicky, I can put my techniques I learnt into practice, and I haven't have a severe panic in a long time.

I wish you the very best of luck xxx

 

[CDDad]

Hi Nicole,
You have dealt with enough this year for 100 people. Just want to wish you a pain free future with your reversal.

 

[MADiMarc]

Hi Nicole,
You have put how I feel into words. I am glad you came here to "rant." I have been on this site for a very short time but have read some of your posts and can agree with Joe that you have been through the ringer this year for sure.
I went to a psychologist for a bit to deal with what I thought was simple anxiety over my disease. Turns out like you I was afraid of future pain. The strange thing is, I always would just deal with it when it got here.
I don't think there is a magic cure for this (if you find it, please let me know) but if you take refuge in your family as I do with mine, it seems to help.
I wish a pain free day for you and an anxiety free future,
Michele

 

[Jer's Girl]

Thank you all so much for your responses! Sorry it took me so long to respond, but I have been reading them and getting strength from your words.
I am back to work today for the first time after five weeks of being off. So far so good, although I am feeling a little barfy. I’m not sure if I am really sick, or just so stressed out that I have made myself sick. Either way, I am going to stick it out.
For the past few weeks I have been doing okay, so I am just going to try my best to think positive, live in the moment, and really hope that things are looking up for me pain and illness wise.
Thanks again guys! I am so glad I have all of you to help me navigate my way through the ups and downs of this disease. Also, I will look into CBT. Thanks again everyone!

 

[acg101]

Hi Nicole - Happy to hear you are back to work !
Having the fear for pain, only one of us chronies can understand. There is no other pain worst that I know of, so its normal to have this feeling.
You are a strong girl and always willing to help others... you deserve a break!
The diet that kept me pain free for a while was glutten free, but I lost weight. I had no pain.
Big hug to you