How do you survive day to day?

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Regular Member

Date Joined Jan 2003
Total Posts : 153
   Posted 11/23/2009 11:18 AM (GMT -6)   
Does anyone have thoughts on surviving day to day? I am on Humira, work a full time job, have 2 kids and my disease is pretty much is check as far as D. Pain I'm managing by getting pills from a friend because I can't find a dr who believes in pain meds for chrohns colitis.
I'm tired all the time, my weekends, I have to spend one day just laying around because I don't have the energy to do anything else.
How do you cope with the hopelessness and the fact that I can't have a 'normal' day like other people? I'm on antidepressants and antianxiety meds, but I can't help but feel like my family would be better served by my life insurance than having to deal with me.
Please help!

Sir WipesALot
Regular Member

Date Joined Nov 2009
Total Posts : 42
   Posted 11/23/2009 12:40 PM (GMT -6)   
As you can tell by my handle, it's not a weird question. I'm stuck in what is now nearly a five month flare, can't get off Prednisone... just confirmed that the 6MP ain't working... and now they're going to move me to Humira. It's frustrating. Being tired. Living with pain. Worrying about what's around the next corner. And at the same time, having to deal with all your responsibilities. Very frustrating. But you're not alone.

It sounds like you have a lot of blessings in your life. Don't discount them. Focus on them. And if you're really having thoughts like that which you've expressed about "life insurance", then it sounds like you may need to talk to someone in real life. I don't know you, and I'm not equipped to give the kind of advice you need. But you should definitely talk to someone.

You are not alone, and despite your trials, I'm sure there is much joy to be found around you.

Veteran Member

Date Joined Jan 2007
Total Posts : 656
   Posted 11/23/2009 12:46 PM (GMT -6)   
I'm so sorry that you're feeling such hopelessness, despair, and fatigue. The only advice that I can think of right now is:

1. Get a new doctor! Pain is a part of this disease. If he/she doesn't understand that, your doctor is insensitive.

2. There can be lots of reasons for your fatigue (besides depression and typical IBD exhaustion). These can include B-12 deficiency, anemia (iron deficiency), vitamin deficiency, and calcium deficiency, among many other things. Your doctor should be ordering blood work to determine what the problem is--so that he/she can correct it immediately. At the very least, make sure that you're taking a good multivitamin, a calcium supplement, and plenty of Vitamin D. (I couldn't face taking more pills, so I found soft chewable Viactiv multivitamins and calcium; they come in milk chocolate and caramel flavors, they're individually wrapped, and you really feel like you're having a treat instead of meds.)

3. Figure out one thing, just one thing, that makes you feel better physically or emotionally--and make sure you do it frequently. It can be a warm bath with a good magazine; it can be a trip to Starbuck's or a good bookstore/cafe, where you can have a cookie and browse; it can be a weekly massage; it can be going to or renting a great movie each weekend--or watching a syndicated TV show that makes you laugh; it can be calling someone who knows you, cares about you, and can validate what you're feeling and make you feel like you're a worthwhile human being; it can be snuggling with a pet; it can be shopping--whatever works for you. With all of your responsibilities and worries, you're probably neglecting yourself, both physically and emotionally. It's really important that you figure out what makes you feel better and that you do it, whatever it is.

4. Remind yourself that you're at a low point right now--and that there are higher points, too. The effects of this disease are worse at some points and better at others. We may never get out of the tunnel--but some sections of the tunnel are brighter and airier than others. Better times are coming.

5. Life insurance will never, ever, replace a mom. Never. You're contributing, even when you feel that you aren't. Your kids love you, even when they don't show it. You WILL come out the other side of this misery. You WILL eventually learn better ways of coping with your situation.

6. I'm sure that almost everyone on this board has been through periods of hopelessness and depression, just like yours. You're not alone. And you're a brave and productive person, who's been hit with one hell of a curve ball. But you'll make it--and you'll make a good life for yourself. It just takes time and experience--both of which you're getting every day (whether you want it or not).

Hang in. Everyone in this community has your back.

Regular Member

Date Joined Oct 2009
Total Posts : 253
   Posted 11/23/2009 1:18 PM (GMT -6)   
I like to make lists of all the things I have to look forward to... right now it's a school break and the holidays! Try to focus on the positive. I'm always so grateful to have my family around me because they are amazing. Also I would try to see someone to talk about how you're feeling who can properly counsel you... we have a very lonely painful disease and it's always a good idea to get some perspective. Take care of yourself and feel better!
19 y/o female, diagnosed crohns december 2008
currently taking 500 mg pentasa 4x daily

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 11/23/2009 3:06 PM (GMT -6)   
I think Nawlinscate gave you some great advice. I would like to add getting your Vitamin D levels checked. My blood tests have been coming back great, showing I am not anemic, but I still was really tired all the time and my joints just ached too. Come to find out my Vitamin D was low. I now take 2000 units and it has helped immensley with the joint pain, and also with the fatigue.

I think it might be a good idea if you ask for a referral to a pain mgmt clinic. GI's are notorious about not giving pain meds. But your pain is real and you are suffering, so you do need relief. I get my pain meds from my family doc thank God, but if he was giving me grief I would demand a pain mgmt referral.

Good luck to you!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined Nov 2009
Total Posts : 37
   Posted 11/23/2009 9:42 PM (GMT -6)   
Your doctor is insane, pain is definately part of the disease! Find another health care provider, it will definately benefit you in the long run. I too get depressed and down about this disease we have, I also like to think of the good things I have going for me! Make a list and anytime you feel down try to think of the things that make you smile in life! Top on my list are my wife and little two year old! Make me smile no matter how depressed I get! Best of luck to you!
28 year old husband and father of 1 (soon to be 2!!), Diagnosed with Crohns and resection surgery in Jan '09 (same ER trip), currently not winning the battle with pain, taking: 6mp, Pentasa, Prednisone and every vitamin possible! 

What lies behind us and what lies before us are tiny matters compared to what lies within us." -- Ralph Waldo Emerson

Veteran Member

Date Joined May 2006
Total Posts : 1177
   Posted 11/23/2009 10:04 PM (GMT -6)   
I finally went and saw a therapist today. It was hard to pour my heart out because I find it so emotionally draining, but I think it may help me in the long run. My husband's illness has certainly taken a toll on me. nawlinscate has some great advice, most of which is what my therapist was giving me today. In addition to what nawlinscate already wrote, one other thing my therapist told me today, was to keep a "gratitude" journal - where you regularly write down things you are happy/grateful for, to reinforce the cup is half full rather than half empty perspective. She said write down 3-5 things every day, and I'm going to start mine today.

Also, she said to wear a rubber band on your wrist, to snap it, when you feel the negative thoughts overwhelm you . . . to use something physical to remind you to change your mode of thinking. Once you've reminded yourself, if you can take a deep breath and think a few positive calming thoughts, and then go back to work or taking care of other business, do so. If that is insufficient, take out a piece of paper and write down some positive thoughts . . . the act of taking out a piece of paper and writing something down in itself calms the mind, and makes it think of something positive . . . and then it maybe easy to carry on with regular activity.

Chronic pain is a problem that absolutely _must_ be addressed. Pain can cause fatigue and depression, and I think you need to find a doc who will help control your pain. I agree with the other posters that you need to get this issue either addressed with your current physician or find another one who will treat you as a whole person, with a life to life, rather than just treating one part of you. And yes, part of that, is checking your vitamin levels, inflammation markers, etc, to dig further into why you're so tired and fatigued.

Hang in there. It does get better . . . we will figure out how to live our lives with this disease together.

Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life

Veteran Member

Date Joined Dec 2005
Total Posts : 1768
   Posted 11/23/2009 10:23 PM (GMT -6)   
Ok, this is kinda cheesy, but my Mom sent me this email, and some of these are things that bring a smile to my face even if I'm having a bad day. Since you've gotten some great advice, I just thought I'd give you some happy things to think about.

Natural Highs in Life
1. Falling in love.
2. Laughing so hard your face hurts.
3. A hot shower.
4. No lines at the supermarket .
5. A special glance.
6. Getting mail.
7. Taking a drive on a pretty road.
8. Hearing your favorite song on the radio.
9. Lying in bed listening to the rain outside.
10. Hot towels fresh out of the dryer.
11. Chocolate milkshake (vanilla or strawberry).
12. A bubble bath.
13. Giggling.
15. The beach.
16. Finding a 20 dollar bill in your coat from last winter.
17. Laughing at yourself.
18. Looking into their eyes and knowing they Love you
19. Midnight phone calls that last for hours.
20. Running through sprinklers.
21. Laughing for absolutely no reason at all.
22. Having someone tell you that you're beautiful.
23. Laughing at an inside joke with FRIENDS
24. Accidentally overhearing someone say something nice about you.
25. Waking up and realizing you still have a few hours left to sleep
26. Your first kiss (either the very first or with a new partner).
27. Making new friends or spending time with old ones.
28. Playing with a new puppy.
29. Having someone play with your hair.
30. Sweet dreams.
31. Hot chocolate.
32. Road trips with friends.
33. Swinging on swings.
34. Making chocolate chip cookies.
35. Having your friends send you homemade cookies.
36. Holding hands with someone you care about.
37. Running into an old friend and realizing that some things (good or bad) never change..
38. Watching the expression on someone's face as they open a much desired present from you.
39. Watching the sunrise.
40. Getting out of bed every morning and being grateful for another beautiful day.
41. Knowing that somebody misses you..
42. Getting a hug from someone you care about deeply.
43. Knowing you've done the right thing, no matter what other people think.

Like I said, I know, it's cheesy, but happy thoughts.

I hope things get better, or easier for you. I understand the fatigue, depression, bad days, but there are also good days out there. You have to remember them and look forward to the next one.

I'm glad to know also that I'm not the only one who has one day of the weekend that I sleep and relax. Some people assume it's laziness, but otherwise I'd be exhausted all the time!

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D, sublingual B12, Coumadin

Regular Member

Date Joined Feb 2004
Total Posts : 53
   Posted 11/25/2009 6:27 AM (GMT -6)   
Please don't ever think your family would be better off without you. You are a blessing to your family, disease or no disease.
Female, mid-20's, lives in Australia
Symptoms since 99', Dx 2003, Right Hemicolectomy 2004, Trying to find the magic combination to manage this silly disease :)

Veteran Member

Date Joined Dec 2008
Total Posts : 947
   Posted 11/25/2009 7:18 AM (GMT -6)   
I take this DD one day at a time too, but I also live everyday to the fullest. I won't let this disease beat me!!!!!!!!!!!!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 11/25/2009 10:16 AM (GMT -6)   
We also have another member who reads frequently and posts even less, but is in his 80's I believe, who takes 5mg of Pred to keep his Crohns in check, and been doing that for years.
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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