Community Forum

Hello all, I am new to this forum. I have never sought out support for my crohns bc everyone in my family has it. The general attitude is "at least were alive so just stop complaining and push through it." Not much sympathy in a family where 6 of us have it. More just a normal fact of life. How could one of us feel sorry for ourselves for a second when another is suffering as well? But I am just so tired. All the time. Is it just the lack of nutrients? I have lived half my adult life on predizone. Sure, give me that and I will have some energy! And crazy mood swings. I get my kids off to school in the morning. Then go lie in bed until a half hour before they come home. In that time I clean the house. When they arrive home I am great at mothering. Baking, crafts, cooking, errands. But I return to bed at 8pm. I used to push through my crohns. My 20s were a huge success. Two successful businesses, masters degree, acclaim, etc...Now I do nothing. My husband cant stand it anymore. I used to earn more than him and now I dont earn a thing. I am 36. I am tired. I am sad. I feel like my life is over. Is this mental or is it just physical? Am I just not absorbing nutrients? Anyone else go through this? I am not naive. My graduate degree is in counseling psychology. So is my husbands. I just canthink pull myself out of this, and it has been like this for a full year now.Thanks for any and all feedback.

Reply posted for spring sun.

I would ask your doctor to test for a vitamin deficiency. You may need collagen peptides, B12, Calcium, K3, etc. I started taking collagen peptides, I saw a huge difference in my nails, face, energy, and hair. I also take green superfood   .

Reply posted for spring sun.

I am feeling the same. I have for a while. I am smart, educated and wanted more out of my life. 

I am am always tired. I can basically only do my household chores and not a single thing else. I am alone most days and just feel like life is a prison. 

Reply posted for Bart4u.

I agree with you buddy.

Reply posted for thomasclark.

I suffered with Ulcerative Colitis for 10 years while surviving a life of scarcity, pain, and sadness. 

2 years ago I underwent j-pouch surgery, a surgery I dreaded from the start (Thinking back this is probably why I ended up having it. Your mind can't distinguish a bad thought from a good thought, it just attracts whatever you think). Now I am living of life of health and happiness. It is because I practice and exercise my mental muscle with thoughts of health and abundance. I have lived the "hell" within my mind and it showed in my body. I now live the "heaven" within my mind and I am happy and healthy.

You need to create a new habit of health inside your mind in order for it to be expressed outside your body...

I GET IT. Your symptoms will not miraculously disappear. BUT your healthy thoughts, if truly desired and believed in, will guide you towards the answers.

You may find the answers in a new drug, a new article, a new surgery. People have healed themselves through thought alone. It is not common, but it is possible.

Even if you don't believe it, make it a practice to say these words... "I am so happy and gratefull now that I am healthy, happy, and full of abundance. Every day my infinte awareness guides and reveals to me the perfect plan for staying healthy. What is impressed within is expressed without."

I reccommend reading "The Power of Your Subconscious Mind." Your mind is so powerful and these concepts are unknown and unpracticed by over 90% of the population. If you're reading these posts I know that you've already tried to heal your body with an exhausting amount of drugs and natural remedies. Now, start healing your mind.

Reply posted for swagenman.

Hi, interesting to see someone else say " am I just being dramatic?" I always would feel that way- I was like maybe its in my head, maybe it doesnt hurt as bad as I think it does, but then instances would happen where I got confirmation that it was not in my head and it was actually worse than I had let on. My doctor keeps saying how I have such a high tolerance for pain now. I really don't think its in your head at all. Also, being sick all the time is so emotionally draining if not physically. It is really hard to not be depressed and tired, but working out helps me SO much. I really suggest working out as much as you can and wearing clothes you always feel good in. Small stuff, but makes a big difference.

Reply posted for pinkiechet.

I am interested to know if the psychiatry and meds continue to help.  My son is beginning to suffer
with the emotional effects of uc and now possibly Crohns.  Chronic illness is really beginning to take its toll on him as he is only 30, has a nice job, family and home and the pressure to stay positive and work hard is becoming difficult for him.  He also suffers with kidney disease caused by the initial Rx prescribed for the uc years ago.  He can't catch a break and I am encouraging him to look into psychiatry or counseling.

Reply posted for Chrystal35.

I have had Crohns for 45 years and I know how this disease takes away all your energy.  What I find that helps me is I force myself to exercise and after exercising I feel like I have more energy during the day.  The problem for me is forcing myself to exercise.  That is what works for me.

Reply posted for momebac.

Even though this is an older post.  I have Crohns and Short Bowel Syndrome from many resections surgeries it is not that easy living off SSDI.  I got accepted for SSDI but the payments were so little and it was not enough to live on and plus you have to wait two years before you can get accepted for Medicare.  So in that two year span you have to pay for your own health insurance.  I wanted to keep my GI doctor and surgeons so I bought my health insurance with my savings account.  Once on SSDI you can only work and make $1000.00 a month and while waiting to get accepted for SSDI you can not work one day.  So if your application takes 6 months you will be disqualified if you worked one day.  Very stupid rules.  That is why it is very difficult to live on SSDI payments.  You will live in poverty.  I hope people understand that it is very difficult to live on that income.  I had to go back to work because I have a daughter I have to support.  I live a very hard life.  I am always in pain and running to the bathroom many times a day.  I don’t sleep well and I find it hard to get out of bed every single day.  This is an extremely difficult disease to live with but I do the best I can.  I am not going to lie I do get depressed often.  I am sure many others with Crohns and UC feel the same as I do.

Reply posted for copingwithibd.

Thank you for sharing the links! I just joined this group after my wonderful mother encouraged me to. It is so nice to know it's not just me! I often wonder if I'm being dramatic, all in my head, etc., and no it isn't.

Reply posted for spring sun.

I suffer from Major Depression as well as suffering from Ulcerative Colitis. Although I do not believe my depression stems only from having an IBD for 20 years, it sure has made me feel embarrassed and alone. Based on my own personal experiences I would recommend addressing your issues of being tired, depressed and unmotivated sooner than later. If not treated it could possibly lead to severe isolation. I have suffered from isolation and it is a lonely place to be. Wishing you well and sending you hope.

Reply posted for vinny88.

My family also does not understand. I've had numerous yelling matches with my mom on how putting my big pants on and sucking it up will make life better. I've lost my job, my dignity, and I'm depressed. Just getting out of bed is a chore and someday I don't even want to move. I was on antidepressants for years and they helped until they took me off everything in august. I've been a hot mess since then. To make matters worse I'm a mental health professional, so I know what to do but in reality there r no techniques for the pain we endure emotionally and physically. It's like living in a fish bowl and the only time the scenery changes is when I go to a different room. You are not alone, none of us are alone. I think many of us are stuck in the same boat and suffering.

Reply posted for copingwithibd.

This is my life. I am in a fairly new relationship, 1 year, and i feel so bad for dragging him into it. He doesnt want to accept my condition and believes I can will it away. More often then not hes understanding but he wants to live his life. I end up spending more and more time alone. I cant imagine being him especially. If you dont experience something first hand you may run short on empathy. I work everyday because I feel that I must. I have one child and her sole provider. Im weighing out the benefit of being home on SSI or having more income. Im pretty sure Im depressed. I wanted to go back to school but every time I try with working full time I crash and burn. Then throw a relationship on top. Im 39 and feel like Im running out of gas. As soon as I get home I crash. Everyone has suggestions but no one comes to get my daughter to engage her in activities. So I scrape myself up and try my best. I couldnt have a more mature and understanding 11 yr old. She was made for me. I still have laundry and shopping now for 4. I room with my mom with hopes she can pitch in with my daughter at least emotionally and cooking dinner. But more and more she is less dependable and is just uninterested. I would like to think she has sympathy symptoms but it feels she wanted me to take care of her as well. I want to grab my daughter and run away!!

Reply posted for spring sun.

Hi Spring Sun, I realize your post is older but I was still hoping to find people who are going through this. My life has taken a pretty drastic change I have no energy all I want to do is stay in bed and some days it feels like moving mountains just to get up. I'm not sure what to do I work for myself as a hairstylist and standing all day and bending is killing me I feel like an old lady my body just aches and I battled this excruciating pain in my coccyx bone or sacral joint for years now and no doctor has been able to help. I get awful pain in my knees and hips and it makes doing my job seem impossible not to mention I need to be cheery and talking and smiling all day long and I haven't come up with a good excuse yet why in the middle of highlighting someone's hair I have to run to the bathroom because I might cramp my pants. So I've started to have horrible anxiety just thinking about going to work and I'm tired all the time actually tired is an understatement. I don't know if it's depression or the crohns disease or that I had two bowel resections in the last 6 months but if I keep rescheduling my clients I won't have any left. I've had my vitamins checked, iron levels, hormones ( I'm low on testosterone) thyroids and all levels are normal so I'm at a loss because I don't know what to do anymore. Has anyone figured out how to have more energy? Thanks :)

 Reply posted for joelle24.

My son has Crohn's Colitis.  He has cdiff as welwell. Caught it twice from hospitals.  It will kill you.  He had 9 infusions of Remicaide.

 Reply posted for joelle24.

My son has Crohn's Colitis.  He has cdiff as welwell. Caught it twice from hospitals.  It will kill you.  He had 9 infusions of Remicaide.

 Reply posted for thomasclark.

If you have Crohn's, UC, depression, aniexty, etc.  Take those diagnosis and apply for SSDI.  Keep copies of everything.  It wont be easy, but you wil get there if it has made you unable to work.  See you out doctors.  Good luck.

Mom of son with Crohn's Colitis for 6 years

 Reply posted for thomasclark.

If you have Crohn's, UC, depression, aniexty, etc.  Take those diagnosis and apply for SSDI.  Keep copies of everything.  It wont be easy, but you wil get there if it has made you unable to work.  See you out doctors.  Good luck.

Mom of son with Crohn's Colitis for 6 years

 Reply posted for vinny88.

I need to talk to some one on the phone. Does any one have a Crohns group or any numbers to call ?

 Reply posted for marinainma.

I am FREAKING OUT. SOME ONE tell me What to do

Im 39 twice banktrupt. Married no kids Shunned by my family. Supportive wife. But its a slow train wreck. Im check to check. 5 resections later. I cant hold my bowels regularly. No insurance. Desperate for relief. Ive tried it all. Opiates stop all the symtoms. But Im over that. Im alone. Ima fire protection contractor field superintendent. A sprinkler man. No day cares. I cant put my wife threw what I know is coming. I fear the next sir get every day. Take steriods to keep up my wieght. Sooner or later I will be alone and most lily homeless. Anybody have any solutions for all of that ? I need to talk to some one. Before I reach point break. Its the anxiety and money stress.

 Reply posted for victoriawhitt.

Victoria. .I was diagnosed with crohns when I was 16 but I remember being sick since I was 4 years old...I feel like I am EXACTLY where you are now...I feel the same way...im going to end up living on the street having l oooo st everything at this point including (I think some of my sanity)..I am at this point considered homeless...my family is no help.....they live to tell me to exercise more ...take vitamins. ..get out more....dont they realize its not quite how that works....hearing your post made me feel....lets say not so alien...its comforting to know that other peoples lives are affected the same way (not that im happy about that).please dont get me wrong...this is my first forum I've joined and for someone to pinpoint "my life"...I was in awe......I truly hope things turn around in a positive way for you...basically just wanted to say hi and I know your crohns life....she treats us like a &*#$@&.....huh?

 Reply posted for copingwithibd.

Thank you for the links!

 Reply posted for aprils trying.

For April's Trying-
I'm trying to be supportive to my 22 year old son, who has had A Crohn's dx for 10 years.  He is exhausted and so discouraged. I hope your husband is doing better.

Marina

 Reply posted for spring sun.

Wow, you just described me.  Tired, depressed and unmotivated.  However I am okay now, rather than prattle on to my gastroenterologist, I got a psychiatrist to assess me.  You are describing issues that stem from the brain, a psychiatrists specialty.  Why see an internal specialist for depression?  

My psychiatrist put me on a low dose anti-psychotic, for the off label use as an anti-depressant and it also puts me to sleep.  For energy and also depression, Ritalin 30mgs a day.  Why not?  I have oodles of energy and because I am productive, the depression has abated.

I urge you to see the help of a psychiatrist, NOT a psychologist.

Best,

 Reply posted for dturn.

I am so glad people have responded to this! I have had ups and downs since I originally started this thread. The Chinese herbs I take from the naturopath help a TON. Acupuncture helps with the pain. Energy level still sucks. I want to do so so so much l, and I am so weak. Just moved to CO and going to see a Dr here so I can get off the fing predizone. Happy with life and friends and family. Sad with the thought of how many people are suffering like this right now. Sending you all love.

 Reply posted for spring sun.

Just try to remember your not alone and it's hard for people to understand what is going on. Please call me or message anytime you need to vent. I'm here and can understand what it is your talking about. Hugs your way

 Reply posted for copingwithibd.

Thank you for the information!!

Hi Springsun!  I posted a reply to VictoriaWhitt and thought I was replying to you!  sorry.  Please read the post to her.  I also wanted to say fatigue is definitely mentally challenging.  Sadness, lack of motivation, and mental fogginess.  Also I was going to suggest talking to your gastroenterologist about the fatigue and see if something is increasing it.  Like decreased iron, B12, an infection.   That being said I am in remission and still have fatigue.  Balance

 Reply posted for victoriawhitt.

Hi all,

Fatigue is a difficult thing to deal with.  I will I had some wonderful answers, but I will tell you that you are not alone.  Fatigue is a huge issue with IBD.  I think everyone has to find a way that works for them to carry on.  There are many things that can make you feel fatigued, but I know for me pushing through doesn't make it any better for me, in fact it makes me more fatigued and sore.  I need to pay attention to my body and I had to learn about balance. 

Now all of this being said, I am extremely blessed.  I have a loving understanding husband who can support me.  I don't have to work and I don't have children to take care of.  The hard part is creating an environment to rest/take care of yourself so you can get the energy you need to do things.  Balance.  Change expectations.  Our disease is about changing our lifestyle for our health, not trying to push ourselves into some mold you think you need to be in.  Ok honestly I am still trying to learn this!!

I hope this is helpful!  You are not alone with fatigue.

 Reply posted for spring sun.

Sixteen posts on this topic. That's pathetic. I can relate to all that everyone says, except maybe not complaining and pushing through.

Why does no one seem to understand that we are spending our lives lying in bed in pain?

I have no life, no job, no friends. I can't do anything. I used to "fake it" at work, but when the health care system decided to stop treating our pain, I couldn't work any more. That was over 3 years ago. I can't get disability because the Administrative Law Judge deemed my "testimony to be not credible". I am quite sure that I will lose my modest home and die outside alone in a cold gutter within about 7 years. I don't mean to be dramatic - I just keep reviewing my finances, and trying to get help but getting none.

I'm 46, was diagnosed in 2008. I've never been in remission. I'm sick every day. Nobody believes me.

 Reply posted for spring sun.

I, too, suffer from fatigue with IBD.  I look healthy and fake it at work, but then crash immediately when I get home.  It's really frustrating because I can't make plans in advance as I usually need to cancel due to fatigue.  I was always the "dependable/reliable" one in relationships, but not any more.  As a planner,  it's hard to cope with a chronic illness that is unpredictable.

The following two websites help give me comfort and help me feel less alone when I'm struggling with having fatigue in IBD. 

http://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/fatigue-ibd

http://www.fatigueinibd.co.uk/questionnaire/

Wishing you well.

 Reply posted for spring sun.

I definitely hear what you are going through and I can relate as well. I'm very close to completing my degree, but I just took some time off because I just can't stand feeling so sick and having papers due, and tests the next day. I feel so down all the time, but I just want to feek happy and upbeat again. Wishing you the best

    i was diagnosed in 1982 as uc the upgraded to crohns about 1992.  am sure now it was fed to me by food or
 medication. been getting foods tampered in recen two years to cause complications and irritaion. I dont beleave
the medical health care providers would cure if they could, being used as a experimental lab rat.

sorry this may not help you but I have overcome alot to learn the truth. so keep your spirits up and take a long hot
bath. 
 
Les

Hi,
I’m sorry to hear about your constant fatigue. You’re not the only one going through this. My husband’s  Crohn’s just keeps him from everything he’s every attempted at doing with his life. He’s feels held up at home every day and wishes that he could get back to work and be productive, but can’t. He had his first major fair up in college and had to drop out and every subsequent job he’s had since was short lived due to hospitalizations. He’s depressed about it but what’s worse is the impression that other people get about him. Gotta love these invisible illnesses: He’s had tons of surgeries and wears a bag yet his family still thinks he’s brought it on himself and do not provide him with any emotional support and the state thinks he’s able to work but he doesn’t even make it through the grocery store with me half of the time.
 
He felt a little better when he was getting iron infusions but he had to go to the hospital three times a week do get them. Even though he’s been experimenting with his methods, he just doesn’t seem to absorb any of the nutrients he consumes.

And yet even I get crap from friends and family for being with someone who is seemingly “lazy” or “doesn’t appear to be trying his hardest.”

Sorry I am not able to provide any real useful information but I am also looking for the same kind of advise. Good luck to you and take care.

 Reply posted for pooped.

Thank you again Chris for responding.   I love that name.  That was my brother's name - my only blood sibling 18 months apart and very close.   He committed suicide in 1997 at the age of 24.   A lot of my problems probably were induced by stress.  The brain is an amazing organ.  Anyway, I got biopsy results back today - I thought I would have to wait until the 5 of January but they were abnormal, so more blood work for me at 3 this afternoon.   Still inflammation and mucous and now they are saying celiac disease.  Ugh. 

HI Joelle, I can totally relate to your pain and know what you mean when you say you wish you would pass out when in that much pain! I've fallen asleep in the bathroom on numerous occasions because I didn't have the energy to go back to bed. I started taking humira 6 months ago and I feel great with no side effects yet.... and the pain and cramping is rare now instead of daily. I had a fistula for the last 10 years and being on humira has even taken that away but I still have to watch my red meat intake. It's been a painful, embarrassing battle and I sure hope it gets easier! If you have any questions about my experience with crohn's feel free to ask and hopefully I can be of some help Chat again soon, Chris

 Reply posted for pooped.

Thank you so much for responding, Pooped!
You are my first.
I'm glad to hear they prescribed you something finally for your pain.  As for me, I am only on Pantoprozole and now I am waiting on results of my biopsy I had on the 16th.    I just want to have energy and less pain.  I had the worst burning ever 2 nights ago.  I have been up to 4 in the morning every night.  At least once a week I break out in a cold sweats and cramps and have to crawl to the bathroom, feeling like and wishing I would pass out while going to the toilet.  I know this personal and an embarrassing topic.   I wish my doctor would prescribe something for pain.
I hope we can keep in touch.  I really would love all the support I can get.
Again, thank you for taking the time to write back!
Joell Christine

Hi Spring Sun!  This is supposed be a support forum but I finally got my first response today from someone.  I feel your pain and I am still waiting now on biopsy results from my upper and lower endoscopy.  Mine started back in October 2015 when I was diagnosed with C-diff colitis.  It has been downhill since - no energy, excruciating pain.  I am giving up faith on my doctors.  They have not recommended any kind of diet and only have on antibiotics in the beginning and now pantoprazole which does not help at  all.  I am so sorry you suffer they way I do.  Sorry I cannot be of more help but I am new at this

 Reply posted for joelle24.

Hey, i have had crohn's for 17 years now and found out ibuprofen is going to make things worse instead of better, it was difficult  figuring out what meds would work. After having numerous flare ups and being on an iv for days at a time and at the hospital they were giving me demerol for pain and it seems to really help relax my stomach and ease the pain! 

 Reply posted for kims.

vitamin d-- ditto!!! & omg i had no idea low levels of vitamin d could be such a huge contributing factor to fml everything & unbearable pain pain pain :(  i've always taken extra vitamins and supplements, so i figured i had it covered. doc has me taking a massive does of d for 12 weeks, then will retest to see if levels are better/getting absorbed, or if i have to go to injections (or whatever the next step is). wish i could just do that whatever next step now if it might mean sooner relief from this circle of *** i'm currently in.

 Reply posted for spring sun.

Spring Sun-- Minus the close family members with Dx, you basically told my story. Especially the trying to be "supermom" part... Too physically & emotionally exhausted to formulate much of a response right now. Good thread, thanks for sharing...

 Reply posted for spring sun.

I had been feeling the same way.  I thought I was just depressed, but found out from a blood test that I was severely anemic, low on on vitamin D and B12.  No wonder I felt so awful.  Please talk to your doctor about you vitamin levels.  Also, this whole thing all just really sucks emotionally, physically and financially, so remember to give yourself a break as much as you can.

Wow I am so grateful to have found this website on a pamphlet I got at my doctor's.   I am looking forward to reading more this weekend but it is so late now and I sooooo tired.   I can so relate to the fatigue but I keep pushing because I have to work and I have a 17-year-old daughter.  I am in so much pain sometimes I do not know what to do.  The worst was a couple months ago where my daughter witnessed me literally grab my stomach and fall to the floor in pain.  Hard to explain.  I am 44 years old and was just diagnosed.  I was taking 8 to 10 ibuprofen in 2 hours, then tried aspirin, Tylenol, etc..   Nothing works for the horrible cramping and pain I feel in my abdomen.  
What is recommended for pain?

 Reply posted for dturn.

My husband is in the same boat.  He was diagnosed 2 years ago.  He has been through a variety of meds, that will work for a while & then stop working.  At this point, he is taking/using entivyo... next up will be surgery.  He is very down, depressed, tired, grumpy, losing weight and very frustrated.  

I, too, am in search of something that can help uplift him, as every where we turn seems to be a dead end.  Does anyone know of a food, vitamin, that can help?   He really can't eat, as after 2-3 bites, he is full, bloated & continues stomach cramps.  We are both at our wits' end!!

 Reply posted for spring sun.

I am feeling the same as you. I was diagnosed last year with ulcerative colitis. I am curious if my exhaustion is due to vitamin deficiency or depression. I had blood work done last week. Just waiting on results. However, I am so sad and feel very alone. Its hard to get to work everyday and I fear being let go. I was denied disability last year. I have two boys that I need to take care of yet I cant seem to take care of myself.