Not worrying about what we can't control

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Jen77
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Date Joined Mar 2006
Total Posts : 2690
   Posted 7/26/2008 9:49 AM (GMT -7)   
I'm having a hard time with this. Infact I've been depressed the last few days, and I need to snap out of it. I think it's because I'm tapering off of the prednisone, and worried about what will happen once I'm off. I'm scared to flare up again. That flare up in May was just really bad for me, and I just don't want to go through it again, not so soon (and really not ever). I don't want to have to go back on the pred, and I don't want to even think about going up higher on the Crohn's treatment ladder. But these are things I can't control. I can't control having this. Guess I'm just having a "woe is me" pitty party.
 
I had someone tell me to not worry about things I can't control. Good advice, just how does one person do this exactly? Seems like I don't know how anymore! But I do know that I don't want the worry of this to control my life either. Any coping suggestions?
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapering down from 10 mg again, Asacol, Questran, Toprol XL (for high blood pressure).


Celey
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Date Joined May 2007
Total Posts : 1284
   Posted 7/26/2008 10:01 AM (GMT -7)   
I was recently in a stress center because of my depression issues.... *I was seriously depressed... tired of pain... was having thoughts of ending it once and for all... and maybe getting revenge on my doctors by doing so...

It'd probably be a good idea to get a counselor.... and...

Here's some advice I was given...

"Live through a moment. If you're doing something you enjoy, if you're just sitting and relaxing... if you're outside breathing the air... Enjoy those moments, and don't think about today. Don't think about yesterday. Don't think about tomorrow. Just enjoy the moment."
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 7/26/2008 1:15 PM (GMT -7)   
Hi Jen Good advice given. If you go off the pred. it is there if you need it later so don't stress about that . The darn old flare shouldn't last forever. Jen what maintenance are you going to be on?

Coping .. Go for a drive just for fun
Pick flowers ,plant a bush
Cook your favorite desert
call a friend
read a book

just start planning on enjoying your life .lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Rider Fan
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Date Joined May 2008
Total Posts : 1445
   Posted 7/26/2008 1:40 PM (GMT -7)   
Why don't you want to 'move up the treatment ladder'? It seems you are worrying about two things at once. First, you worry that you are going to get sick again, and then you worry about what you will have to take to keep from getting sick.

Both of these are logical things to worry about; things that we all think about. But given that the only maintenance drug you are on is Asacol, I think you need to seriously think about a plan to keep your disease under control, whether it be medication, trying different diets, different natural meds that people here take, or a combination of the above.

If the asacol doesn't work, it doesn't work, there is not much you can do about it. Take comfort in the fact that we are lucky that we live in an age where there are other options available.
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 10mg prednisone (trying to taper). Udo's Choice Probiotics (30 billion).


yogaprof
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Date Joined Apr 2006
Total Posts : 1665
   Posted 7/26/2008 1:59 PM (GMT -7)   
you are half-way there by using the subject that you did. It is one of life's main lessons that we can't control what we can't control. all we can do is gather information, do our best, let go of even thinking you have control, and sometimes, just look for a bit of diversion! you will know what happens next when it happens, and you will deal with it then. you are learning lots, and when you need to cope with something new you will be able to cope with it.
I am very grateful for having a 12-step background before I got ill (and before I raised teenagers) as it has helped me get at least a bit better at this stuff. big hug to you, yp
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


Jen77
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Date Joined Mar 2006
Total Posts : 2690
   Posted 7/26/2008 2:11 PM (GMT -7)   
I'm also on Asacol, and will remain on it for maintenance. I've been on it for 2 years, and I guess since I flared on it, I worry how it's gonna hold me again. My primary doctor seems to think I'll be okay with just that. I don't know.

Why do I worry about going up the meds ladder? Side effects for the things like 6mp. Some of the side effects sound worse the Crohn's symptoms (although I feared Prednisone just as much). I'm really fearful of the Humira and Remicade because Lymphoma is already in my family (my Mom being one of the people with it). So I feel it's riskier for me. I don't want to trade calming my Crohn's for cancer. I've never found much results from diets and natural methods. Although I would like to try probiotics, just not sure which ones I should buy.
 
This last flare was different then my previous ones. The inflammation in my body was just out of control (as my blood tests showed too). Not only was I having the typical intestinal symptoms, but swelling of my lip, joints, and thumb. It was just crazy to me, and the part that really sent me for a loop. Since I had never dealt with some of they symptoms before, and not sure how something like Asacol will keep the inflammation in my entire body from doing that again.

Guess I'm not sure what I need to be doing next. Getting a new GI is one thing I know I need to do. But since I can only go to the same one office, due to my insurance, I don't have much to choose from in a way of better attentive care.

Like I said, just having a pitty party for myself. yoga- That's exactly what I want to do, I try to strive to be able to have that outlook. I guess I need to focus more on doing that, then just hoping I could look at things that way. Worrying I know does nothing more then make us sicker anyway.


~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapering down from 10 mg again, Asacol, Questran, Toprol XL (for high blood pressure).

Post Edited (Jen77) : 7/26/2008 3:17:23 PM (GMT-6)


sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 7/26/2008 3:24 PM (GMT -7)   
My RA was really horrible for three years, it was life consuming and really life stealing I had a hard time doing anything and could barely walk. I went one step up the treatment ladder for six months I took plaquenil. I had to stop taking it because of the side effects. However that six months on plaq put me into a seven year partial remmission where my life was pretty normal I just had bad knees but nothing unmanagable.
Then last October the RA went totally nuts again and I was as sick as I had been those first three years. Due to some difficulties with my PCP it took me 30 days to get put on prednisone and six weeks longer to get in to see a rhuemy. She put me on plaq but wanted me on mtx-I did not want to go up the treatment ladder it sounded too scary but eventually I relented and now 3 months later I am so happy I did I am symptom free-not something my rhuemy expected and off prednisone.
I tell you all this to let you know that after that first three years it took me more than a year to trust I wasn't going to wake up flaring again. After this horrible flare in October I thought I would never trust my relative health again and I still don't trust it 100%. However, thanks to a great relationship with my Rhuemy and prednisone refills that I hoard I know that if a flare occurs again I have some control over it. Someone in the above post said prednisone is always there for you if you need it again. (When I agreed to go off of it I had mental images of every pharmacutical company in the planet stopping manufacturing it and me never getting a script again) so I just keep some in my house and my Rhuemy writes lots of refills.

In other words going up a step in treatment can have wonderful affects, having a good relationship with your doctor is very important and keeping a full bottle of pred in the house that you don't take but keep just in case can give you a sence of control that may help you to stop worrying so much.
Good luck with whatever you decide.
Sj

Jen77
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Date Joined Mar 2006
Total Posts : 2690
   Posted 7/26/2008 3:32 PM (GMT -7)   
Sj, when you describe that not being able to trust your relative health for a year, I think that's exactly what I'm going through right now. It's like when your on something that's working, but you know you can't stay on it forever (like the pred), it's hard to come off of it not knowing if your going to stay in remission or not.

But I do have some pred left, and 1 refill as well on it. So I guess I can take comfort in that. Even though I'll cringe if I have to go back on it. Kinda of love/hate relationship with that stuff. Worked so well, but awful to get off of!
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapering down from 10 mg again, Asacol, Questran, Toprol XL (for high blood pressure).


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/26/2008 3:42 PM (GMT -7)   
Jen, I have the same relationship with pred but I talked to my doc about it because I was so afraid to go off of it she always insisted that a very low dose could be used for years if I needed it but she wanted to save prednisone maintence for when I truly needed it. However, for my last taper 2.5 mgs for two weeks then stop taking it she wrote a script dispence 90 with 3 refills-enough for a year so I knew I could go back on it whenever I wanted to. I keep a full bottle of 5mg tabs and a full bottle of 2.5mgs in my house. It makes me feel safe.
Knowing I can call my rhuemy at anypoint and count on her to call me back the same day also helps.

Sniper
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Date Joined Feb 2004
Total Posts : 6518
   Posted 7/26/2008 5:35 PM (GMT -7)   
Not worrying. In theory the process is simple.The practice a little more complicated. You do only what you need to do at this moment. You make an ,honest, effort to evaluate trouble on a one to 10 basis, as in , this is bad, but yesterday was worse and so on. When things are really bad you get through them in hours, or minutes. Surly you can take just one more minute of something bad, and then two and so on. Next look for and enjoy every good thing no matter how small. None of us know what tomorrow brings so enjoy today. No one is promised a great future , or even a future. Count your blessings. What is good about your life. There will always be those that appear better off than you and there will always be those less fortunate. Know that you are human and dont be afraid when you have a day of feeling sorry for yourself , a good cry, a sad moment. When you can think more clearly tell yourself your ok and then look for something to put your mind at ease. This is when a good friend comes in . A warm cup of coffee, tea, what ever makes you feel at peace. I can go on and on but in truth it is for you to find your own way. If you look, you will find it. Life has left me with many questions. Knowing there are few answers to be found here has made life better for me. I chose to make life as good as I can under the circumstance. I can do no more. To do less is unacceptable.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


Jen77
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Date Joined Mar 2006
Total Posts : 2690
   Posted 7/26/2008 6:22 PM (GMT -7)   
Words to live by, Sniper! Now if could start doing that, I think I'd actually be healthier too.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapering down from 10 mg again, Asacol, Questran, Toprol XL (for high blood pressure).


Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 7/26/2008 6:27 PM (GMT -7)   
I've been fortunate in this regard- I've got a high tolerance for pain, and I'm generally pretty relaxed. The best thing I can recommend is to not think about it too much. As relaxed as I usually am, if I start thinking about all the things that can go wrong and keep thinking down that road unchecked, I start having some really scary thoughts. So whenever I catch myself doing that, I just think "Well, if it happens, it happens for a reason."

I believe that the suffering we are each forced to endure leads to changes in other people's lives, causing a ripple effect and changing the world for the better. Perhaps through our strength and optimism, we save someone from the depths of despair, and they go on to save someone else, who goes on to save the world from tyranny and oppression, that sort of thing. Or even a more direct line; perhaps because of this pain, I am able to change the world for the better. Regardless of how many people are in the chain, I believe that all the pain we suffer has an eventual positive effect on the world. I've never been a particularly religious man, but faith does play a huge role in my life, and this particular portion of it has proven to be extremely comforting. I hope it helps you as much as it has me.
20, Male, diagnosed over Christmas Break of my Junior year in High School. BEST CHRISTMAS EVAR LOL

(not really)

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