Please help me - I am exhausted

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wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 6/4/2008 9:58 AM (GMT -7)   
I have Crohn's Colitis, this is my 3rd major flare since being diagnosed a year and a half ago, and the first flare where they didn't put me on prednisone.  I have been sick for about 9 weeks now, and out of work for about 6.  I have had 2 remicade infusions and my bowels seem to be coming back to normal, no blood, not much D, no pain, no cramps, great.  My problem is that I am so exhausted I cannot move some days.  I can't get out of bed and when I do it is to go into the tub where it is comforting.  Then some times I get bursts of energy (like when my niece is here) and I am fine - then I crash later.
 
Please please help me - I did not think I would be this sick for this long - I was supposed to run a 10k this weekend - when i first got sick I looked ahead and thought at least I will be better by then!  I can't spend the Summer living with this extreme fatigue.  My GI drs saay it is just Crohn's - it must be something else - I have also tried going vegan but that doesn't seem to be helping either. 
 
Please someone give me some advice or share their experience - for how long can I expect to feek this way?
 
Thank you & God Bless.
 
Wednesday
 
32 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, Oxycodone, Protonix, trying to remember to take Multivitamin and Calcium, need to start taking Probiotics and Omega 3-6-9
 
Presently healing from a flare and 2 week hospital stay, during which abcess was drained by surgeon


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 6/4/2008 10:43 AM (GMT -7)   
I've had some experience with extreme fatigue this year when I got into a major flare starting in January. My fatigue was coming from a couple of things.

First, I had a UTI. I don't have pain when I get UTI's. I'm like 20% of people out there that have extra-bladder symptoms with a UTI which can be fatigue. My arms and shoulders usually feel really heavy, too, and I just feel drained. Well, I got the UTI cleared up but the extreme fatigue/malise was still there.

My doctor did an Iron blood test (TIBC w/ferratin). My iron was very low. Low iron causes extreme fatigue, among other things, like a rapid heartbeat which I was ALSO having. I've been on Iron supplements (Ferrous Sulfate) for over 2 months now. It took about 3 weeks to kick in, but after 3 weeks, I felt my energy shoot back.

I still get tired just from the Crohn's...but since taking the iron supplements, I've felt MUCH better in the "fatigue" respect. So if you haven't had your Iron levels checked lately, you might consider that a possibility of your exhaustion.

Of course, STRESS is also a major factor in exhaustion. Between your hospital stay and remicade infusions, ANYONE would be exhausted.

Hang in there!
Diagnosed in October, 2004 at age 33.
36/F/SC
Current Rx's: Colazal (generic), Nexium (generic), Ferrous Sulfate, One-A-Day multivitamin, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 6/4/2008 11:13 AM (GMT -7)   
Thank you so much - I am having such a sad miserable day.  Usually I keep a positive mental attitute and have faith I will get through this but today I am very sad.  I want my life back.  I am 32, I want a boyfriend and I want to go back to my job and have a great career and I want to run and go to yoga and go to dinner and cocktail parties with my friends and travel and go back to London and Dublin and today I am just miserable, crying and feeling very sorry for myself.  This sucks.  This is not the life I want.

32 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, Oxycodone, Protonix, trying to remember to take Multivitamin and Calcium, need to start taking Probiotics and Omega 3-6-9
 
Presently healing from a flare and 2 week hospital stay, during which abcess was drained by surgeon


Shellz0711
Regular Member


Date Joined Jun 2008
Total Posts : 54
   Posted 6/4/2008 11:39 AM (GMT -7)   
wednesday2007,
I know exactly how you feel I have those days where my positive "it will get better" attitude takes a back seat and I need to just cry! Of course the prednisone makes those days more frequent than I like. I am 19 and I feel 80 some days because of the joint pain! Yesterday I had to blow off my friend because all I could do all day was lay on the couch. Sometimes you just have to cry and vent to help you get over it. So you just vent away we are here for you.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 6/4/2008 3:38 PM (GMT -7)   
Hi Wednesday Give yourself more time to get the Rem. going it does sound like it is helping you though. I know some days I feel worn out too .Perhaps some ensure will help pick you up I found it was great for me. Cheer up better days ahead.Are you on B-12? lol gail

wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 6/4/2008 4:49 PM (GMT -7)   

Thank you - this is more than feeling worn out some days - this is down and out daily exhaustion and fatigue, and it is lasting kmore than a month now and not showing signs of going away.  Some days I cannot physically get out of bed.

Ccould it be anything else?

 


32 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, Oxycodone, Protonix, trying to remember to take Multivitamin and Calcium, need to start taking Probiotics and Omega 3-6-9
 
Presently healing from a flare and 2 week hospital stay, during which abcess was drained by surgeon


songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 6/4/2008 5:16 PM (GMT -7)   
my opinion----have your blood levels checked---iron---and b12---all of these contribute to energy depletion

Im tired alot too and had some days where i felt just as you did---mine was potassium levels and b12 levels being low---you need some bloodwork ran just to double check before assuming its something other than Crohns

everytime Ive thought I have something else--I find out its related to the Crohns and think MY GOD how many things come with this disease

I hope you feel better soon!!!

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Diagnosed with severe Crohn's colitis in May 2005--spread to ileum and small intestine as of April 2008. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Currently on Remicade every 8wks, 40mg Pred, Pentasa.


songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 6/4/2008 5:22 PM (GMT -7)   
my opinion----have your blood levels checked---iron---and b12---all of these contribute to energy depletion

Im tired alot too and had some days where i felt just as you did---mine was potassium levels and b12 levels being low---you need some bloodwork ran just to double check before assuming its something other than Crohns

everytime Ive thought I have something else--I find out its related to the Crohns and think MY GOD how many things come with this disease

I hope you feel better soon!!!

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Diagnosed with severe Crohn's colitis in May 2005--spread to ileum and small intestine as of April 2008. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Currently on Remicade every 8wks, 40mg Pred, Pentasa.


medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 6/4/2008 5:38 PM (GMT -7)   
you have no pain and no cramps that is super!! my advice is take a year off from work. honestly, speaking in terms of weeks or months is not realistic. could it be anything else? no. unlikely. if you just had a abscess drained and it is likely this is a result of crohns. Its time to decide to go to the tub and soak in salt not for comfort, but as part of your daily regimen to heal. think of your new job to rebuild your body, your other job is no longer in the picture.

wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 6/4/2008 6:29 PM (GMT -7)   
Thank you all for your kind words and advice - I know my potassium levels are low - when I went to the hospital for surgery to get the abscess drained they had to wait a day b/c my potassium levels were so low.  Could that cause it?

32 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, Oxycodone, Protonix, trying to remember to take Multivitamin and Calcium, need to start taking Probiotics and Omega 3-6-9
 
Presently healing from a flare and 2 week hospital stay, during which abcess was drained by surgeon


songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 6/4/2008 7:17 PM (GMT -7)   
potassium being low can cause weakness, muscle cramps, nausea, low BP(which can help make u tired), and many other things

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Diagnosed with severe Crohn's colitis in May 2005--spread to ileum and small intestine as of April 2008. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Currently on Remicade every 8wks, 40mg Pred, Pentasa.


medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 6/4/2008 7:44 PM (GMT -7)   
why does any diverticulitis happen? in crohns these lil bubles under the lining get bigger and become abscess. is it a electrolyte problem? >>there is accumulation of fluid which doesnt wanna re-enter the bowel , rather it sits under the lining. and there is alot of D. seems the bowel should contract to expel this abscess fluid back in to the bowel as waste. Muscle contraction is initiated by calcium, and there are bouts where other electrolytes (like potassium) maybe low or high. energy, however is provided by glucose. glucose needs a electrolyte salt to travel across the lining into the body. yet the lining when inflammed and filled with fluid itself, does not help, (the glucose hasto travel farther thru an inflammed wall). can be table salt, not necessarily potassium. is it the fundamental problem in crohns that the lining is not letting this happen properly, because the lining is dealing with the accumulation of fluid. so it seems fluid has traveled into the bowel lining but not back out.

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 6/4/2008 7:48 PM (GMT -7)   
Wednesday,

I am so sorry you are having such a hard time. When you had your abscess drained did they do a CT scan or any test ensure it was completely drained and healing properly? When is the last time you were on prednisone? I wonder about adrenal suppression if it was recently. As for feeling so sad, you are entitled to a pity day every now and then. Just know that you are not alone, we are here for you and we have all been there and done that at one time or another. When do you see your GI again? Please let us know how you are doing.

Take Care,
Julia
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