Any advice for somone that is worn down?

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tiredjim
New Member


Date Joined May 2009
Total Posts : 3
   Posted 5/2/2009 7:07 PM (GMT -7)   
I have been dealing with Crohn’s and chronic pancreatitis for about 14 years. I also have degenerative disk disease (lumbar disc), a compressed T8 vertebrate and pinched nerve in the cervical area. I had a fusion a couple years ago but now the two vertebrate below those are shot. For the last year and a half I have been experiencing extreme fatigue. The crohn’s disease has been in remission for a couple years but cramping and burning eyes continue. I also have asthma. I am tired…very tired and finding it harder and harder to keep getting up to face another tiring day.

I was on Pentasa for several years until it stopped working. I then progressed to Remicade for several years, developed antibodies and now take Humira/ Methotrexate. I think the Humira is part of the problems regarding fatigue but I’m not really sure. Many of you know the story, which do you fear most…the disease or the treatment? My decision has been made and it does not allow for dealing with a bout of crohn’s if it is avoidable.

When I first started Humira I didn’t notice any changes in my energy level and I don’t have times before or after an injection when I feel better or worse. I definitely feel worse after eating but the pancreatitis could be the culprit there? Now on the rare occasion that I go to work I come home early and go to bed. No matter how much I rest I am tired.

I am also playing ping pong with infections. When I am on Humira I get infections. When I take antibiotics I stop the Humira I get inflammation. How about that for a real life catch 22?

I recently spoke to my GI doctor, who is one of the greatest, about the possibility of taking a disabled social security retirement and he was very positive. He actually tried to talk me into it several years ago but I wasn’t ready to accept the possibility at that time.

I am 59 years old and eligible for retirement from my place of employment. SSI isn’t stopping the decision to retire but it would be nice to have it as a supplement. As weird as this might sound my preference would be to continue working. When I was younger I looked forward to the day I could retire but now I wish I could continue to work indefinitely. Has anyone on this board had experience in filing for disability? Perhaps even more important anyone been successful and what do you think the odds might be (all the illnesses noted above have clinical support) for someone with my health issues? I would like to thank you in advance for taking the time to read all this and thus allow me to draw from your experience. If there is a positive for having this disease it is the comfort that comes from others walking the same path and sharing their experience with you.

isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 5/2/2009 7:17 PM (GMT -7)   
I would think that there is a good possibility for you to go on disability.
I am temporary disability right now and I think you are more sick than me.

The one thing that I like about not having to work is it reduces stress.
Not that my job is stressing me out, its the fact that I was constantly calling in sick and I just did not handle that quite well because I always want to do my best and when I was sick I felt I let my self down, my boss and my co workers and that wound up stressing me so much.
And when I am stressed my stomach acts up.

I can also take a nap anytime I like, and boy do I need to sleep :S

Good luck with your application hope everything goes well fore you.
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Entocort, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


Curly9878
Regular Member


Date Joined Apr 2007
Total Posts : 165
   Posted 5/2/2009 7:31 PM (GMT -7)   
I understand the worn out feeling....   You are not alone.
28 Yrs
Michigan
Newly diagnosed with Crohns


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 5/3/2009 5:07 AM (GMT -7)   
Hello Tiredjim! Welcome to the forum! Have you had your vitamin levels check recently? Vitamins D and B-12 especially because we Crohnies don't absorb them well. Deficienies are known to cause fatigue. Unfortunately, inflammation in the body for any reason, including diseases such as Crohn's, are known to cause fatigue too. Praying you find something that works for you!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


CatMan
Regular Member


Date Joined Jun 2006
Total Posts : 289
   Posted 5/3/2009 9:57 AM (GMT -7)   
Tiredjim,

I too know the worn out feeling situation. I had a severe case of acute pancreatitis at the end of February. Spent almost 2 weeks in the hospital. I've been on disability since then. Hope to return to work mid-May. Given the feedback you received from your GI, I'd say you should check out the feasibility of LTD. Although you'd like to continue to work, you have a lot of issues to contend with. If you had time to rest, potentially you would be less tired and maybe some of your medical issues would be less intense. Good luck & let us know how things turn out.
Current Medications:

Pentssa, 1000 mg od
Vitamin D
Red Yeast Rice
Calcium/Magnesium Supplement
Nature's Way Primadophilus Bifidus Probiotic
Remicade infusion; every 8 weeks
Ambien, PRN
Seasilver Whole Food Liquid Nutrition


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 5/3/2009 12:21 PM (GMT -7)   
Hi Jim sorry to here about all your problems god knows you have a lot of them but like everyone else said it could be a vitamin problem it could also be low iron which is really common and can be treated with a tablet or a needle or an infusion another thing i would advise you on would be to drink some boost or ensure maybe your lacking something they don't work miracles but do give you some energy. As for your other question about getting on a disability to me it sounds like you would have no problem getting but than i'm not a doctor,but like your doctor all ready said you should have done this years ago,i have been on mine since 10 years now and never had a problem getting it so best of luck to you on your adventure. Jenn smilewinkgrin
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


tiredjim
New Member


Date Joined May 2009
Total Posts : 3
   Posted 5/3/2009 6:30 PM (GMT -7)   
Thanks to all. I appreciate very much your taking time to share your understanding.

Tiredjim
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