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Veteran Member

Date Joined Nov 2006
Total Posts : 552
   Posted 7/24/2008 11:03 PM (GMT -6)   
My daughter is 3 weeks post-step 1. Doing pretty well. She still finds she tires easily and especially if she is out walking for awhile. She doesn't take walks (it's been too hot) but will come with me on my errands. She usually has to find a seat whereever we are for awhile. Anyway, she finds she gets lightheaded if she walks too much or stands too long (not that it is even for very long, just long enough for her). A few times she feels that tunnel-vision feeling that almost feels like passing out (but not yet near passing out). She does not become pasty feeling or white. She is eating well and drinking lots (several liters a day). Her output is not too much.
Is this still just a reaction to her body adjusting to surgery? Most of the time she feels OK.
--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!  7/3/08-Step 1 j-pouch surgery

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 7/24/2008 11:23 PM (GMT -6)   
Yea, unfortunately, it can take the body that long to recover -- lotsa protein and carbs helps energy levels. I know you said that she is drinking lots, but it is amazing how much fluids are needed by the body undergoing these type of surgeries. The body is still adjusting, so keep pushing the fluids, and slowly increase her activity. She will come around. It took me a long time cuz I was really really ill prior to surgery. Just to be on the safe side, be sure to mention all of this and your concerns to her surgeon/MD so they can check lab levels if need be. Best of luck to you and your daughter.
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

Regular Member

Date Joined Mar 2007
Total Posts : 111
   Posted 7/25/2008 11:16 AM (GMT -6)   
My son went through the same thing, but to the extreme, where he ended up back at the hospital b/c when he was sitting or lying down his blood pressure was picture perfect, but when he stood up it would drop to as low as 65/35 and he would get lightheaded and actually lose his vision for several seconds.  After running EVERY test imaginable, and putting him on IV fluids, they determined it was dehydration and his body adjusting to the ileostomy.  So I know it seems like she is drinking a lot of fluids, but for her she needs a ton. Also try Gatorade or Smart Water or Vitalyte b/c they have electrolytes.  Also, if she increases her sodium intake, she'll retain more.  Hang it there. I promise she'll feel back to normal and this very trying time will be a distant memory.  My son is doing great!!!!

Mother of 18 year old son
Ileostomy on April 18, 2008

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 7/25/2008 11:38 AM (GMT -6)   
I also think this is dehydration. I recommend she drink vitalyte, it's the best hydrating beverage on the market. It contains less sugar than the commercial varities but more potassium. It's the only hydrating beverage sold in the Grand Canyon which can attest to its efficacy. Just drinking plain water is often not enough for ostomates. You can order it in a variety of flavors at

dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 7/25/2008 11:04 PM (GMT -6)   
sounds like dehydration to me also. i had to go to the ER shortly after coming home my BP dropped really low and i was having the symptoms your daughter is having. Took a few bags of saline and was all better!
Now i notice that anytime i start to feel a little bad, i start drinking water

rocky road
Regular Member

Date Joined May 2008
Total Posts : 32
   Posted 7/26/2008 12:56 AM (GMT -6)   
Give your daughter's body to adjust and healed up . It takes time. I had my total colectomy 23May08. I had those symptoms exactly as what you mention. It took me a month and half to adjust. I really manage to take it slowly because I did have problem of hypotension, my body could esily go down to even 55/45 which fainting is possible. After 2 weeks of surgery my only trip was going to the washroom. After a month my trip was going around the house. One week after that ,I walk around 2-4 houses along my neighborhood. Then going to mall, which is diff. because
lightings inside the mall makes me feel like I am going to fall but I don't force myself, I always have to find a sit where I could stable up my feeling then I walk again. If I have a bit of walking, all I can advise to avoid this feeling is have enough sleep . Eat at regular times. And everyday try to increase the load of exercise but don't overdo. Her body will tell her what it can do. Just tell her listen to her body, if she feels she can manage.. go if not take lots and lots of rest. It all takes time.
I am 2 months post op now and I tell you. I could already walk around the mall longer. I still listen to my body though, if I'm tired I take a rest. I also eat lots of carbs, less on meat, I prefer to eat fish,rice,potatoes and breads and water, less juice. Plus a fruit every meal, but I am not eating the whole fruit in one setting, I half it. And going to the washroom is easy, no sting feeling.
God Bless. And don't worry her road to recovery is there. Just be patient.
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