Lack of Support System... suggestions?

Hi everyone!
I'm not new to HealingWell but I am new to the chronic pain forum. I spent some time on the j-pouch and ulcerative colitis pages in my past. Lately though, my stomach is pretty under control--god knows I should eat better and work out--it's my pain that is bothering me.

In January 2009, when I was 21, I had a colectomy/creation of J-pouch surgery, then in March I had both the ileoanal anastamosis and the reversal of that procedure, there was a leak. Anyway, until about a year ago, I thought I was out of the woods. Then this chronic pain shows up.

I had spent so much time in hospitals with so many legitimate medical concerns that going to the ER became my first instinct when I had major stomach discomfort. I did this for much longer than I should have. My most recent ER visit was in May, which is my new record out-of-ER/hospital-time. They never found anything (else) wrong with me, and told me that I was starting to look like someone who sought pain meds. I was just looking for a reason for the pain!

The reason is likely adhesions--I also have PCOS, so there's a good amount of scar tissue down there. The [most effective] solution has been acupuncture, after much trial and error.
I work with a pain specialist, but I'm not in love with the clinic. I would do acupuncture everyday if I could afford it, but between working two jobs and going to school (and taking care of an unruly dog) I don't have the time--or the money.

I can't help but feel alone. I'm 26 and feel 62. I'm constantly exhausted and aching, I come home and automatically plop down on the couch to vegetate. I don't have many friends of my own anymore. My boyfriend is wonderful and supportive, but he, along with several friends, sometimes forgets that I'm not a healthy young person.

I used to be close with my mother, but she has moved in with her boyfriend recently and we speak significantly less these days. I know of an Ulcerative Colitis/Crohn's support group around here, but that hasn't been my biggest problem these days. It's the pain, the fatigue, the weakness.

I know it gets better if you get up and keep doing it, take care of yourself and get/stay in shape--but it's hard work! I honestly don't know if I can do this the rest of my life, but what choice do I have?

I just can't help but feel like it would be easier if I knew I wasn't alone, if I knew that other people could do it, and so can I. If you have any ideas for me please let me know, I really appreciate you reading my post, feeling slightly less burdened already.
Thank you,
Kelsey

Post Edited By Moderator (Blessedx8) : 12/30/2013 1:56:07 AM (GMT-7)

Hi Kelsey and welcome to CP!, which I might add has over 140,000 registered members!! That's a statement to how not alone you are in your pain.

This forum is a great support means and has awesome, caring, and decades wise people who are always here ready to help. You've come to the right place.

Please dont take offense with our questions as the more information we have about you and your journey the better answers we can give.

Are you on a anti-depressant? Most CPers find it's an important part of our coping abilities. Are you being treated with anything other than acu-p? What all diagnosis have you been given? What kind of healthcare team do you have and what kind of specialists do they include?

Here's the thing Kelsey that's the answer to all CPers search for how do I live like this?

Always except that pain will be your constant companion and although you may not eradicate it, you can manage it to reasonable numbers. Your search for a team of Drs, therapists,RPHs, meds, methods and modalities starts the day you do accept that. You keep an open mind to trial and error, there will be some, find a PM whose willing to work with your team and you to aid in making your pain as manageable as possible.

When your untreated and undertreated is when your life looks overwhelming. You deserve the best quality of life offered but with CP much of that's going to depend on your dedication and hardwork finding and keeping it.

That's the secret to how to live with CP. The support for most comes from here, not so much family and friends.

Again welcome and others will stop in today to lend their support and advice and to welcome you.

Good luck on your search!

When you're still having periods, Iron is extremely important.