How to stay comfortable?

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RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/17/2009 8:19 AM (GMT -6)   
We all know how difficult it can be to lay comfortably while in a bad flare.  What do you do that seems to work? 
 
I have to lay on my back with my legs straight and arms down next to me...if they're above my head it seems to cause irritation, as does having a leg bent. 
 
I just wonder if there's anything you do that works better than what I'm doing...or if you have found some funky position that makes all the difference.  : )
 
I do have pancolitis, but the flare is being maintained primarily from the center and to the left side of my colon.  If that makes a difference.
 
Thanks!!

: )  Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Meeting with a surgeon next week...and hopefully scheduling the surgery by the end of the month!


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 1/17/2009 10:13 AM (GMT -6)   
I find that the fetal position works for me. I also use a heating pad for cramping and back pain.
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 10 mg Prozac, VSL #3
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/17/2009 11:23 AM (GMT -6)   
Robin,

It appears from your sig that you are contemplating surgery and very soon. I too have pancolits (I was also diagnosed in May of 2007) and surgey often enters my mind.

A couple of questions:

Did the remicaide not work well for you?

Are you having trouble with weight?

Ever had a problem with large bowel movements/amounts?

Thanks and I hope you feel better soon.


Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!
01/03/09 Trying a few new things...I'll report back after 90 days


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/17/2009 2:24 PM (GMT -6)   
bbc...

Remicade has not worked at all...it makes the slightest bit of difference but enough to reduce the prednisone. I've been on prednisone for almost two years and making due with the 20mg b/c when I'm on 40mg with the Remicade my immune system is severely attacked and I cannot handle any form of infection. I'm just now without any open wounds, so my GI and I decided to stay and struggle with the 20mg until the surgery.

I'm having a horrible time with weight gain. I've packed on over 30lbs and the only way I can get it off is if I fast for a week at a time...and that's not fun. I'm currently unhappy b/c the Remicade has caused some solidity to the bm's, but that hurts even more to pass through than the liquid...the Remicade also causes me more gas, and that's always a pain...literally. : ) I've consistently had a great amount of blood in each stool, and am just so very tired.

My family has finally caught on to my struggles and sadness...it's becoming more and more difficult to mask the longer I'm suffering...and they are really pushing for something to be done. It is do hard to get through the day feeling the way I do. I drive out of town for work and the past couple weeks I've been slouched against the door/window b/c it's too hard to keep my head up. I have been drinking Ensure at least twice a day and I'm noticing a little change in my energy...but not much. I'm also taking B complex twice a day and dissolveable B12 tabs whenever I think about them. I'm desperate for energy and just for the motivation to get off the couch.

So, I'm ready...I am not going to wait for a miracle drug or any kind of funky home remedy. The fact is, with pancolitis the entire colon is diseased and it is sometimes the most difficult to treat b/c the below the waist meds do not reach the full length of the colon. My body just is not reacting to the treatments, and even a week after my 5th infusion, which was only 4 weeks after my 4th, I'm still bleeding, still have extreme urgency, and still not sleeping through the night. I'm sad and tired.

I've never been in remission, so battling this through a pregnancy, first year with our baby, staph infections, abscess removals, and just the constant burden of needing a bathroom...we're ready!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Meeting with a surgeon next week...and hopefully scheduling the surgery by the end of the month!


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 1/18/2009 7:07 PM (GMT -6)   
I sleep on my back. I prefer to start out on my tummy or side, but when I'm flaring I find I can't move at all without stirring up some urgency and waking myself up, so during flares I have to try to go to sleep on my back and stay that way.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder, then Forte, now a stronger one (50 billion). Doing much better, but still having some bad days. 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16284
   Posted 1/18/2009 9:50 PM (GMT -6)   

I like to lay on a heating pad or with my dog on my back. It always comforts my tummy when I have something warm on the front or the back or both.

Best of luck to you Robin. I can't wait to hear about the success of your surgery and the happiness you find afterwards. I know how frustrating this illness can be and I am thankful for every day I feel halfway normal. It will be nice when you are healed and this is all behind you.

Peety, I have that issue with moving positions too. Sometimes I flip in the night and suddenly I get the urge. I hate getting up for a poop in the night.


Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 1/19/2009 7:50 AM (GMT -6)   
sleep on my back, flat out legs straight also. ALso even just rolling over made me have to run for the bathroom. FOund my arms crossed over my chest (vampire style)( like you're in a coffin ) was the most comfortable for me. As I got better I found I could cross my legs. Can finally roll over or sleep on my side now and finally have begun to sleep well again. Even make it through the night. All though I do get up fairly early... Have my first BM, take my meds. Then I go back to sleep for an hour or so. Get back up, shave, and shower. SOme where through the second awakening I have my second BM, normally just a small one. Get ready for work and leave. On a really bad day I might have a third BM before leaving. I've found though, that getting up early and takin those pills with all that water helps. Gives me time to have that second small BM without the rush and worry.
 
38 yr old male, NE Ohio, diagnosed Aug 2008, but been with symptom since Nov 2007
30 mg pred, 9 balsalazide, rowesa nightly, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera tabs
Following gluten free diet as well as spinach/sunflower regime
**down to 25 mg of pred 12/25/08 **down to 20mg of pred 1/7/09
MED CHANGE: 1/13/09-- 4 Lialda, 2 Pamine Forte, 1 Florajen3 probiotic, 2 Aloe Vera tabs, Rowesa every other night, 20 mg of Pred, Lomotil as needed, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol
 
 
 
 
 
 
 
 
 
 
 


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/19/2009 8:03 AM (GMT -6)   
Isn't it crazy how crossing our feet while laying in bed...or the position of our arms makes sugh a huge difference in our tummy?!

I do have to lay perfectly flat, straight and still in order to find comfort. If I turn or roll then I just keep on rolling out of bed and run to the bathroom.

Thanks you guys...it's also nice knowing that I'm not the only one laying like this...I'm sure it looks as though I'm trying to avoid my husband like the plague, as he's normally sprawled out toward me, and I look as though I'm ready for a stretcher.

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Meeting with a surgeon next week...and hopefully scheduling the surgery by the end of the month!


RyanF
Regular Member


Date Joined Jan 2006
Total Posts : 358
   Posted 1/19/2009 11:50 AM (GMT -6)   
I have a bed buddy.... and before anyone thinks less of me... a bed buddy is a bean-filled sock-like tub thing with two handles on either end that you can put in the microwave for a minute and have about 30min-1hr of comforting warmth. I heat mine up, take my meds (enemas-- ouch!) and grab my buddy and head to bed. I cannot sleep on my back for long so I end up on my side at some point but the bed buddy is flimsy and will suit any need. I love that thing! When it is really cold my wife will warm it up and put it in our bed before we go to sleep-- when we get in it is nice and toasty.

You can get them at your local Walgreens or online at Amazon.com
Ryan


Meds:

Began Humira on Jan 10 2009


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/19/2009 1:50 PM (GMT -6)   
Hmmm...the bed buddy sounds nice! I'm going to look into those.

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Meeting with a surgeon next week...and hopefully scheduling the surgery by the end of the month!


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 1/19/2009 3:08 PM (GMT -6)   
I can't sleep on my left side- the moment I lay down on my left side, I have to jump back up to go to the bathroom. If I get into bed and straight onto my right side, sometimes I can sleep like that, but if I roll over at all, I have to go to the bathroom instantly, it will even wake me from my sleep. So, as most others have said, it seems laying on my back is the most comfortable. Also, when I sleep on my side, my hips, back and knees are always KILLING me in the morning- especially my hip joints, where my femurs connect to the pelvic bone. If I put a pillow between my legs it helps a bit, but not much anymore.

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Azasan 100mg

 
 


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/19/2009 10:49 PM (GMT -6)   
ediekristen...

I don't know if I've asked you before, but could you tell me more about the long term side effects from your prednisone use? How long were you on it and what are you symptoms now like? I'm scared that after my surgery and once I'm entirely off the prednisone I'll see some long term effects...I've been on it for almost 2 years...most of that time 40mg, but for the past couple months it's been at 20mg.

: )
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Meeting with a surgeon next week...and hopefully scheduling the surgery by the end of the month!

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