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I guess I am posting this as a last resort, Ive been mulling over this for months since I had my life ripped from me by crohns. I was trying to become a pro skier, now I lie in bed and knit. I am 24 and thought I had so much to do, and now just dont see any of that happening. I cant work and am costing those around me ridiculous amounts of money and emotional stress. It may be the prednisone making me feel like this, but Im steroid dependent so I cant stop taking them. All I know is that I made a bucket list back in august. now its completed, so what do I do now? Ive told my husband of my intentions, and I dont know if he doesnt take me seriously or doesnt care...either way it makes it worse because I literally feel like nobody would even notice or care if I were gone. I guess you could say Im at the end of my rope. Ive called a hotline once before, but how long can I drag this on for? Its not going away. not sure what to do, guess Im just sitting in limbo trying not to do anything too stupid for the time being, but dont know. I see people I used to know kind of well, like my old boss, and want to yell "please help me!" but what can they do? nothing....so here I am. what do I do?

 Reply posted for hope2skiagain.

We all know how frustrating and depressing it is to be sick with Crohn's. When I was 22, I spent over a week in ICU, and almost a month in the hospital, after my second bowel resection. I couldn't eat, and felt so weak and miserable I just wanted to disappear into nothing. At 5'3", I was down to 88 lbs. Certainly, it felt like I'd never get better. But I did. Yes, it was slow, but just a year later I felt so much better, I felt like a different person.

Now I'm fifty-two, and I hold down a full time job, and I've spent years doing what I love, including writing professionally, and belly dancing. Yes, I still have bad days, but I've learned to be patient. The bad days pass, and I know from experience there will be good days, too.

 Please don't give up hope. Bad things don't last, even if it feels like it'll go on forever. Sometimes you have to try different treatments to see what works best for you--it's not a 'one size fits all' deal. I did get some antidepressants while I was sick, and it did help. Do ask your doctor questions, even if you think they're silly--other folks have probably asked the same questions. And if something doesn't feel right, or if you're having a symptom you're not sure about, let the doctor know about that, too. Make sure you learn all you can about IBD, it'll empower you!

 Reply posted for hope2skiagain.

Hey I only read your first post and it cought my eye. I understand EVERYTHING your going through. I am also steriod depend. I have crohnes as well and it does not respond to anything else. I just started Entocort ec. I have a 16 month old I wanted to be a mommy so bad i went through IVF to have her and now shes here all I can do is sit on the toilet and hold a trash can in front of me. I want to sleep so the pain goes numb.I dont want Anyone to feel bad or cater to me or worrie. When in really bad pain all the ER does is say yeah call your dr, call him and it takes a month to see him. I hate Crohnes and living with it! I pray all the time right now its better but going through the flare ups anr really hard for me as well. Thanks for the time guess I needed to get that out. Oh and I know NOBODY UNDERSTANDS IT!

 Reply posted for hope2skiagain.

Hi,
I'm sorry you feel so lost but we have all wanted to give up at one time or another. I would strongly suggest talking to a doctor about your symptoms. Antidepressants may or may not be an answer . Your symptoms can be related to the prednisone. What helped for me is starting on Remicade IV infusions every 8 weeks. It can help wean you off Prednisone and reduce flareups .. I would recommend talking to your Doctor and discussing whether or not you are a candidate for Remicade. There is a pro NFL quarterback on Remicade and he continues to play while on it...Good luck!

 Reply posted for hope2skiagain.

hang in there baby. i've had this crap (no pun) for 45 years. its hard to get anybody to understand even family. but we're out there and know what its like . one day at a time ,enjoy what you can (even tv) your sick and have permission  to *** .

 Reply posted for hope2skiagain.

Sounds like you are definitely taking steps in the right direction.  It is a amazing the difference the right doctor and a new day brings.  There are a number of professional athletes that are living with either CD/UC.  I don't have their names at my fingertips, but I know for a fact there is a football player, hockey player, and racecar driver.   Keep dreaming big.......if you can dream it, you can achieve it!

In the meantime, take care of yourself.  Stick w/low fiber/residue diet, meds., plenty of fluids.  In combination with your new doc, you should be back to the slopes in no times.  

Be well,

Lizzies Mom

 Reply posted for hope2skiagain.

Im glad you are still with us.  We know how hard it is and you can always come here to vent.  I hope you do realize that it will and does get better. I've had a lot of the same feelings you have had and have been pretty down at times but after a lot of time and my own efforts I have been feeling better.  Im not saying it's going to happen over night but you have to fight yourself because sometimes it is just easier to give up but please don't give up, your life is worth it and you may think that you wont be missed but I know you will.  

Keep your head up and remember you are also allowed to have bad days but don't let those days takeover.  Stay positive 

 Reply posted for hope2skiagain.

Im glad you are still with us.  We know how hard it is and you can always come here to vent.  I hope you do realize that it will and does get better. I've had a lot of the same feelings you have had and have been pretty down at times but after a lot of time and my own efforts I have been feeling better.  Im not saying it's going to happen over night but you have to fight yourself because sometimes it is just easier to give up but please don't give up, your life is worth it and you may think that you wont be missed but I know you will.  

Keep your head up and remember you are also allowed to have bad days but don't let those days takeover.  Stay positive 

 Reply posted for hope2skiagain.

well, still here. And although things are spiraling out of control with my disease, I somehow feel better about it all. This forum is awesome, and it was just so nice to hear other people out there get it. I saw a new dr. and she was awesome! what a world of difference that can make. She even let me know one of her patients is an olympian! so maybe there is hope. I have a ct on friday that will determine whether we go with surgery. But I actually feel like I'm moving in the right direction towards recovery now. Atleast we're looking at doing something now instead of just rotting away on the pred.

thanks all for you positive vibes...really helped me get through and hopefully I can be there for someone in the future.

heidi

ps, while I did have to cancel skiing for today, I looked back over some footage of some of the great runs I've had, and it made me think there's gotta be more turns in my future...waiting will just make it even better when I do get them  :)

 Reply posted for hope2skiagain.

Lots more healing vibes from another competitive rider now back enjoying life and sport. Don't give up hope.As others have said already, it's so important to find a way to control IBD rather than to let it control you.

Four years ago I was in pain, exhausted, taking 60mg pred a day and couldn't see any hope of improvement. I had to give up riding (and many other things) for about a year and no matter how hard I tried to avoid stress, sleep well and eat well my uc was completely unpredictable  and going downhill rapidly. I think I was most frightened by the randomness of my symptoms.

Talk to your doctor, keep taking your medicine and do a bit less knitting (easy for me to say, I'm an absolute knitting failure) so that you have time to start doing some reading and internet research. The more you know the more you can take charge. Life without Bread, Elaine Gottschall, Prof A Ebringer, Gary Taubes and Hyperlipid have transformed my life.And yes, I do think the effect was like magic. Just rather slow magic and I  still take mesalamine every day without fail. I started one day at a time with almost no hope except that I had little to lose.

Your forum name is the best. It cheers me up every time I see it. Don't ever think you wouldn't be missed. Get angry with the disease - and even better, get angry with the doctors that tell us that what we eat can't help.

Cyber hugs from the UK   xxx

 Reply posted for hope2skiagain.

Hi:

The one thing you MUST always remember is you have Crohns. Don't let Crohns have you. Accept the fact that you may not realize your dream of being a professional skier. That doesn't mean that you can't be physically active. A lot of satisfaction can be realized from helping others. Do you have a Crohns support group that you can go to. Find some way to help others. Especially the challenged. Nothing will make you quit feeling sorry for your self faster than working with challenged children.  As far as your husband is concerned, it is RARE for a spouse to really understand. They say they do but usually only people who are living with a life long disease can truly relate. There are exceptions but rarely from a spouse or in-laws. Come on the board and vent. We all know what it's like to live with this. Good Luck. Marilyn    

 Reply posted for hope2skiagain.

You must stick around, the show has just started and it is a full length feature film. It is the drugs and disease making you think this way. You will have better days. You are in the abyss right now. "THIS TOO SHALL PASS" Say that over and over and over to yourself. You are not alone. Everyone here and everyone there cares about you. That is why everyone comes to this forum, because they care about each other. We've all been there, where you are at. Don't give this IBD the satisfaction of winning, fight. Give it all you've got, get mad.

                                                        Joe

 Reply posted for hope2skiagain.

I'm so glad that you chose to reach out to the forum. We all completely understand how you're feeling. There are plenty of days that I think "why me?" and feel so hopeless, especially in the worst of my flares. The other forum users have made some great suggestions and I agree about the prednisone - it can cause serious changes in mood. Please keep talking to people. It sounds like you have supportive people around you; please open up to those you can trust. I also went to counseling and started going to massages during my worst flare because I need something, anything to help me learn how to cope. I wrote in a journal every single day to express how I felt and write down all of the things I wanted to do when I felt better. I was (an now am again!) a competitive horseback rider who rode professionally for years. During my flare, I was lucky if I could even be driven to the barn to give my horse a carrot. I had a beautiful young horse waiting for me and I sat on a couch, sick and tired. I felt so hopeless. I wanted to stay connected to horses so I read training books and watched videos and cleaned my equipment and looked at catalogues. Some days, it made me feel hopeless but most days it made me feel like "me" again rather than just the girl with Crohn's.

I did heal from my flare and although it took a long time, I got back to "me" again with the wisdom and strength that comes from managing this disease. I came out the better for it. And I'm sure you will too. Hang in there. Reach out to people. Keep faith. You are in my thoughts. Sending healing vibes your way.

 Reply posted for hope2skiagain.

This forum is a great place to start.  Everyone here can relate from personal experience . . . you are definitely not alone.  So please feel free to vent your fears and frustrations and we’ll share what we can in terms of our experiences, insights and sympathies.  A couple of suggestions:

1. Talk to your doctor about your meds.  That prednisone is unpleasant stuff and can definitely affect your mood and outlook.

2. Monitor your diet and hydration.  As I’m sure you know, certain foods can make things worse.  Also, from experience, hydration is key and these diseases make it very difficult to stay properly hydrated.  Drink your fluids!  :-)

3. Pray, and then pray some more.

Finally, I believe the answer to your question lies in your ‘handle’ . . . “hope to ski again.”  Focus on that and surround yourself with it (pictures, trail maps (I love trail maps!), your gear, anything that gives you peace).  Set that as your goal and resolve yourself to meet it, regardless of how long and arduous the journey might be to get there . . . know that you WILL get there.

I love skiing; the mountains, snow, everything about it.  Unfortunately I didn’t learn until later in life (it was one thing I told myself I wanted to do as I lay in a hospital one summer).  If your plans are to ski professionally, you must be pretty good.  That’s a gift.  Resolve yourself to use that gift; maybe to teach kids affected by IBD?  Know that God has plans for you and, from one skier to another; it would be a shame if you weren’t there to ‘ski’ them through.

Prayers, best wishes, and here’s hoping that I run into you at the top of a mogul run sometime; maybe you can teach me how to get down without embarrassing myself.  ;-)

 Reply posted for hope2skiagain.

Please talk to your Dr about your depression!  Steriods can mess with your mind and there are other medications that can help you feel better emotionally.  I know when you feel like crap you think it's never going to end....but there is always a chance to feel better.  Please get some help. Suicide is a horrible thing for a family to deal with...I lost a family member 20 years ago to suicide and the effects are beyond words.  You can feel better again...please ask your Dr to help you find a therapist and/or psychiatrist. best wishes to you

 Reply posted for hope2skiagain.

You did the right thing by "venting" on this forum.  The people here can relate to how you feel.  Either we ourselves have CD/UC or are parents of young children (like myself) who are walking the similar path.

You are a beautiful, young woman who has a bright future ahead.  I understand it may not be crystal clear to you right this minute, but there is a light at the end of the tunnel.  

I don't even know you, but I can tell you I'm sure there are more people than you think who would be saddened if you were no longer part of their life.   Unfortunately, some people do not recognize that until it is too late.  You've taken a step in the right direction, just by talking with others.  Stick around, life will be beautiful and full once again.  Start another bucket list.   

Wishing you my best.

Lizzies Mom