For those in remission

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FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 5/17/2009 2:16 PM (GMT -7)   
Even though I am not actively sick, I still find myself quickly fatigued and sore.  We are moving at the end of the month and I just went through two boxes of stuff and felt like I needed a nap.  My blood work is all normal.  Anyone else experience this? Maybe I am still recouping after finishing my semester...
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4096
   Posted 5/17/2009 4:23 PM (GMT -7)   
Hi Fitzy,
I can never really figure out what is remission for me. I have IBS which I've had my whole life, so I struggle with the difference between a Crohn's exacerbation and severe IBS. As far as the fatigue, I try to just push on unless I'm really anemic. This is such a hard disease to figure out, and I pride myself on being logical! I guess you should just listen to your body and rest when you are tired...you may never get an exact reason for each symptom!
50 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 5/17/2009 4:29 PM (GMT -7)   
I'm never exactly sure if I am in remission, but I feel close enough to comment here you know?
I do get really tired sometimes. I will have a burst of energy that disappears as quickly as it came. I get so tired sometimes I literally cannot move a finger...so I sleep it off and hope it helps enough to get me through what I need to do.
Mine I'm sure has a lot to do with the humira and ever fluctuating dose of pred.

Still, in both our cases I'm sure it can be said we're getting over the fact that we work hard...It seems like there is always something to be done you know? And it's not like anyone else can just do it sometimes.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 5/17/2009 4:54 PM (GMT -7)   
I agree. I always just push through my fatigue too and chock it up to stress and being busy. But now that I am home until graduation I find I notice the fatigue so much more. Now in my opinion, there really shouldn't be much to make me tired but I am just as exhausted as when I was working and going to school daily. I even remember in high school coming home and taking these 3 hour naps. I really shouldn't complain because my fatigue is not as bad as a lot of people's on here. I guess since I am "more or less" in remission (I never totally lose the urgency when I have to *go*) I just kind of wonder what makes me so freaking tired all the time. I guess it is just par for the course.

Even yesterday, we went to our new place (2 1/2 hours away) signed a lease, took pics and measurements, had lunch with a friend, and on the ride back up I fell asleep (hubby was driving) for about an hour and a half. Oh well.


27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 

Post Edited (FitzyK23) : 5/17/2009 6:06:16 PM (GMT-6)


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 5/17/2009 4:59 PM (GMT -7)   
Maybe this is just an as-yet un-articulated equation of chronic disease. "You will be as tired as you can afford to be."

Nixing the gluten helped my energy quite a bit, but I'm still a lazy bum. At least, I feel like one.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
Noticing a real difference with a Gluten-Free diet.
Currently on:
Cimzia (started 2-12-09)
Probiotics, Digestive Enzymes, Forvia vitamins, and calcium chewies
Prednisone free, again! WHOOPIE!


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 5/17/2009 5:20 PM (GMT -7)   
When I got to full remission (no signs of inflammation even with a biopsy) I was back to full energy. Same way while pregnant. When I get the fatigue, but no other symptoms I just assume I've got some low level stuff going on. There may also be some nutritional/absorption stuff at those times for me too.

I do think it is true that you push through it when you are busy and can't afford to notice or take extra time to rest. Hope you get some energy back.
Hoping to stay in remission after the birth of a healthy baby girl. On Pentasa during my pregnancy, went med-free 2 months to nurse (stupid), but back on Pentasa and still nursing.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/18/2009 6:34 AM (GMT -7)   
I am in remission in my gut, but........I am always tired and my bones constantly ache. My husband and I always laugh because I always take my nap before I go to bed. I work all day and when I get home I always fall asleep on the couch and sleep until its time to get up and go take my shower and go to bed. Its a vicious cycle sometimes. So you are not alone.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 5/18/2009 2:26 PM (GMT -7)   

Blood work can be normal when the disease is active.


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 5/18/2009 2:40 PM (GMT -7)   
I feel like I'm some kind of remission when I'm not going as often and don't hurt as much as when I am really feeling awful. Crazy way to look at it? I have the same problem and I just try to sleep a little more when possible. Rest is really a help to less sickness for me. All that moving and cleaning and ending school would be stressful for me so may you are just winding down and feeling it. Hope things get better as you settle into your new place.

yellowfin43
Regular Member


Date Joined Aug 2008
Total Posts : 305
   Posted 5/18/2009 2:45 PM (GMT -7)   
Remission is when you feel normal. Anyone feel normal?
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 8 months ago. Now on Remicade, B-12 injections and iron. Feeling much better!
God Bless. Tony


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 5/18/2009 3:22 PM (GMT -7)   
Too bad 'normal' is such a relative term...especially after diagnosis and living with the disease.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 5/18/2009 4:15 PM (GMT -7)   
I don't know what remission is!
Normal whats normal for us crohnies? Two trips to the bathroom.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

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


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 5/18/2009 10:36 PM (GMT -7)   
The common symptoms of fatigue, weakness and pain are all symptoms of vitamin D deficiency. The following is a quote from the full text of the following article BMJ. It deals with vitamin D deficiency in veiled women asylum seekers from Muslim countries in Denmark:

"We focus on the pathology encountered by the primary care doctors caring for these 11 patients, the length of time between the appearance of symptoms, and the establishment of the diagnosis of hypovitaminosis D3 as well as the women's response to treatment by the improvement of a wide range of clinical symptoms—bone pain, muscular weakness, and fatigue."

The clinical symptoms used to measure improvement match many of the common complaints of posters above. The article says that resolution of the symptoms took about 3 to 6 months. However, they were administering vitamin D injections of 300,000 IU once a month in addition to 20 mcg (about 800 IU) daily tablets. Again, a quote from the full text of the article:

"Treatment for most patients was two intramuscular injections of 18 750 nmol (300000 IU) of cholecalciferol at monthly intervals and an ongoing course of oral calcium (1000 mg) and cholecalciferol (20 µg)."

The kind of vitamin D used to supplement dietary deficiency matters. Fish oil vitamin D can be bad for some people. See: cfs-recovery.org
For better absorption, a vitamin D emulsion works best. Biotics Research Corp makes a good, reasonably priced one called Bio-D-Mulsion - see Biotics products.
about an 8 month supply cost me $20.

For people with resections of their small intestine, absorption may be impaired.

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 5/19/2009 4:49 AM (GMT -7)   
Interesting. I am lactose intollerant so I don't drink milk w/ vitamen D. I also live in a state w/ a long winter so I get less sunlight. I'll try to get more or take a supp. NJmom - when I said my bloodwork was normal I was referring to my iron and b12 levels. To everyone else - I guess I call myself in remission because I feel the best I've felt in a very long time and only usually have urgency first thing in the morning.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 5/19/2009 5:10 AM (GMT -7)   

I also heard about Vitamin D. I guess I need to get with it and buy some....

I was almost to remission then I seem to be flaring again. I did have bouts with exhaustion though. It is frustrating.

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 on Soma and Lyrica

 

 


eva124
Regular Member


Date Joined Sep 2007
Total Posts : 246
   Posted 5/19/2009 6:22 AM (GMT -7)   
i myte try the vitamin d aswel i feel real tired all the time in remission atm
dx 17 aug 2007
21 yrs old
13 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa


WriterMum
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 5/26/2009 7:32 AM (GMT -7)   
My GI told me that Crohn's eats up endorphines (sp?) from the minute you wake up, so even if you are not flaring you will have to push past that. I relate to the napping before bedtime! I do the same thing! You have to listen to your body.

Also, it depends where your Crohn's is as to whether it will show in the bloodwork. I had a severe flare in the last 2 inches of my rectum which required hospitalisation, but my bloodwork showed nothing. Again, listen to your body.

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 5/26/2009 7:51 AM (GMT -7)   

Fitzy, thanks for clarifying...I had assumed you meant the CMP and CBC panel, plus sed rate and CRP.

What some docs call normal is not optimal. What were the exact readings for the iron (serum iron, ferritin, TSAT, TIBC) and B12?


Bluize
Veteran Member


Date Joined Mar 2005
Total Posts : 635
   Posted 5/27/2009 3:29 PM (GMT -7)   

My doc today actually gave me a script for once a month vit D.  She said it would help with fatigue.  Also being the darker months my body wasn't getting it from the sun.

I have no idea what remission is since I've never had it.  I'm hoping to though.

 

Fatigue and some aches sometimes but always D.


Susan
 
28 years with Crohns in the term ileum.  Feb 07 Resection.  No meds currently..but there will be some I'm sure. Taking acidophilus.

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