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Hi everyone

I really appreciate this forum, It has really helped me through some of those really tough days. I guess today seems to be worse than it has been . I'm so depressed. I guess my entire life has been focused on sports, and I identified myself as an outdoorsy, active person. then I got sick. now I am fat, lie around all day because my stomach hurts and I feel sick, and basically can't handle it! I feel like there's nothing else to me, now that I've lost the active part of myself. My husband married me because I was that type of person and he wanted to live an active life together. He says he loves me and just wants to be with me, but I can't help feeling that our marriage is crumbling..or maybe it's just me. I guess I am just venting. has anyone ever gone through this sense of loss? would a grief counselor help? I'm not suicidal, I just don't want to be sick anymore. I kinda feel like running away into the woods for awhile. I stopped taking my meds last week trying to convince myself that this isn't really happening, but then I started feeling sick so I started again. If I don't have health insurance, or any money, how can I even see a counselor or anything. do I have to wait until I am suicidal before I can get issued something by the state or something?

 Reply posted for hope2skiagain.

I hear you and feel you pain (literally). Used to be ultra active, 43 now and have had CD for 20+ years.

As far as your relationship, you need someone who is patient, understanding, supportive and loving. That doesn't mean that you or he won't get frustrated, angry and confused at times. Forgiveness, support and a positive attitude regardless of the situation are critical. When you are down in the dumps, he needs to lift you up. When he is showing frustration with how the disease is impacting your time together, you need to do the best you can to enjoy life and his company. Even getting to a local park for a walk can boost your spirits.

 Reply posted for hope2skiagain.

I, too, used to live an active lifestyle until I was diagnosed with UC.  Do you have UC or CD?  I didn't see it listed.

Anyway, I also became quite depressed because of a lack of inactivity and loss of control of my life.  I know what you are going through.  I also did not respond to drug therapies such as steroids - so my life was extra out of control.

If you have UC and if your doctor agrees, I recommend an ileoanal pullthrough.  I had this done this summer and my life is completely turned around.  This surgery is not for CD only ulcerative colitis.  I am enjoying a return to my former active lifestyle - I can do anything I want!  Check with your doc.

I've never sought counseling for dealing with my disease, but I've been to psychologists to help with other issues.  I highly recommend seeking professional help if you are interested in it.  It can be of great service if you are willing to be an active participant.

Best wishes...

Angie

 Reply posted for hope2skiagain.

Hope2Ski,

Have you tried Bikram Yoga?  It is a fantastic mind/body experience.  The yoga takes place in a very hot room and the poses actually aide digestion.  Try this website. http://www.bikramyoga.com/

This type of yoga has really helped me feel better with my Crohn's.  It always makes my stomach feel tons better after class. 

 Reply posted for hope2skiagain.

I am glad to hear that you went camping.  I completely understand how you feel.  It is hard to imagine that someone else can love you when you don't even know who you are anymore.  Yeah, it is like the bad amusement park ride.  I took a meditation course this summer and I try to meditate about 25 minutes a day.  It gives me peace and perspective. I laugh a lot more than I did before and I feel like I can take things in stride.  And even if you feel lousy, get up and move every day.  Do whatever you can do physically without overdoing it.  Make it part of your routine. Do whatever makes you happy, and hope that you will see remission sometime soon. I believe that in the long run it is about how we accept this disease and that we never give up trying to find what makes it go in remission.  I had a really bad experience a few years ago, that might have triggered my UC.  I planted a lemon tree. (When life gives you lemons...) It makes me smile every time I look at that tree.  It is my reminder that you have to do whatever you can to turn something bad into something good. Hang in there and keep doing what you can to feel like you have your old self back again.  

 Reply posted for hope2skiagain.

Yay! I'm so glad you went camping!! You'll get back to doing things with less and less issues, I'm sure. And  you may learn to make a few adaptations if you need to (know where restrooms are, etc.)
I told you about some of my post-diagnosis life, but also - my son was diagnosed with UC at age 13, in the spring of his 8th grade year. Pancolitis. He was so bad his doctor took him out of school for the last 2 months of the year! - but he got into remission, got off the pred, and a year later was able to go to Honduras with a work camp crew - and he was the only one in his group who didn't get Traveler's Diarrhea! So - really, I think it's helpful not to let this thing define who you are. As a doctor friend of mine once said, "Almost everyone has SOME issue!"  Having said that, talking it out with someone might not be a bad thing - does your GI have a psychologist on staff? I did therapy several years ago for another life issue and found it actually to be extremely interesting and almost fun!
Or - some hospitals or CCFA chapters have support groups.
Good luck to you - I know you'll regain your life!

 Reply posted for hope2skiagain.

thanks everyone. I definately feel as though I'm on a roller coaster! but things are looking up. Iguess you sometimes just have a bad day now and then. Actually, good news. I went camping this weekend! first time out of the house since I got sick 3 months ago.  The second night was a little rough, but I did it! hopefully music mom is right and it won't ever be as bad as it was. I still think I might try to find someone to talk to , but all of your replies were super  helpful. It's so encouraging hearing other people out there get by just fine (especially hearing that people can still have kids)! thanks again everyone.

 Reply posted for hope2skiagain.

Everything everyone has said here is so insightful and wonderful! And I loved Joe's metaphor of the amusement park ride. When we're blue, it does feel as if that is the way we'll always be.
Getting one's head around a chronic illness is huge - especially with an illness that isn't visible and isn't polite to talk about. When I was first diagnosed and was in the hospital, people would visit and say, "well, you look good..." and I'd think, "Well, Yeah! The problem is not in my FACE!"
But - you'll get through it, and I imagine you'll ski again. Gosh, since my diagnosis, I've renovated 2 houses, had 2 kids, taken up horseback riding and have done the English jumping thing as well as Western country riding.....I've taken up singing and have had recitals! Once you begin to feel better you'll grab hold of your life and get going again! Just from your forum name I can tell you're not one to give up. So, be patient and kind to yourself. Maybe you'll be one of those whose worst flare is this initial onset, and in the future if it acts up it'll be minor. I hope so!!

 Reply posted for hope2skiagain.

You can get better and live a normal life again.It's so easy to feel miserable when you are constantly exhausted and nothing seems to be helping.

I am an active outdoors person as well but three years ago my health deteriorated to a constant UC flare, overweight, serious rash, woolly brain  and I was constantly exhausted. The SCD diet has completely turned around my health. Within days of starting my brain cleared, the rash went and I lost  the retained fluid from taking steroids. Over  the following months my weight returned to normal (a bit too low for a while) and the UC has improved enormously (it was three steps forward and two back at first) and looking back it still improves slowly. I have not needed steroid tablets since starting although I do take Mezavant (like Lialda).

Read the books Breaking the Vicious Cycle and Life  Without Bread.
Reducing sugar and carbohydrates makes a big difference, and eating plenty of good fats (butter, animal fats, cold-pressed olive oil and omega-3s) provides energy. I am now an ideal weight although my intake of fat is much higher than before.

Look up Patman's posts.They are full of great references..... I was a person who followed my doctor's advice to the letter and expected the drugs to make me well. Now I see them as great for a crisis but the underlying improvement comes from changed diet.
Don't give up hope.

 Reply posted for hope2skiagain.

yes your life has changed.  I too felt like I wasn't me anymore.  You have a right to grieve- of course.   KNow that you WILL feel better and you WILL do alot or all of the stuff you did before.  It just is hard to believe we will ever feel better when we feel so rotten.  And once you do feel better enjoy!  You will relish every moment- hang in there.

 Reply posted for hope2skiagain.

I heard once that when you get diagnosed with a chronic illness you go through the 5 stages of grief.  You really do have to morn the loss of your health and all the things that go along with being healthy.  I had a really bad flare a couple of years ago.  I felt like I was just sitting around not doing anything with my life, my friends were out doing things and all I could do was lay on the couch.  I saw a counselor then and think it helped.  I only went twice since I felt like the counselor helped me regain enough perspective that I didn't feel quite so down and because we felt like my issues were more temporary and didn't need continuous counseling.  The first appointment was actually the most helpful - it was good just to get everything off my chest.  I say that because if you don't think you can afford to make counseling a regular thing it may help to just go once.  Also sometimes practices have a sliding scale based on income, so you could call around to different offices and try to find someone who wouldn't charge you too much.  I definitely wouldn't wait until you're suicidal to get help though.
And as Joe said, it is important to remember that just because you feel awful now doesn't mean that you will feel awful forever.  IBD is characterized by periods of flares and periods of remission.  Meaning that you will eventually get into remission and back to some (maybe even most of) the activities you love.  I know it feels like its really far away but I've been up and down enough to know that as bad as things are, they will eventually get better.  Hang in there!

 Reply posted for hope2skiagain.

Have you ever gotten on a bad ride at the amusement park and wanted to get off but you couldn't until it was over? The ride seems like an eternity and you think that it will never end. You feel like you can't make it till the ride is over. That is the best way to explain what you are going through. You will get better. You just have to lay low and ride it out. Wait until it passes, until you can function again. You are not in control and can't be in control. Know that this too shall pass. Bide your time. Better days will come.

                                       Joe