20 times a day too much???

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soccermom3
Regular Member


Date Joined Aug 2007
Total Posts : 38
   Posted 11/7/2008 1:01 PM (GMT -6)   
I had step one of a two step j pouch July 3 - six weeks later August 19, I had my reversal.  Only one complication - a complete obstruction in Sept - it cleared on its own after 4 days with a NG tube - YUCK!  So here is my question, I probably go to the BR at least 20 times a day.  I don't really feel bad - maybe a little tired.  I'm just wondering if this is normal this long after surgery.  I'm not taking fiber or immodium.  I have found that immodium and lomotil have never helped - and I am a little nervous about taking fiber pills especially after the obstruction.
 
Any advice would be appreciated.

Diagnosed Pancolitis 5/05.
 
Waiting on Insurance to approve Humira 
Hospitalized 2/08 Severe Flare
Hospitalized 3/06 Severe Flare
Remicade - every 6 weeks
Imuran - 150 mg per day
Asacol - 9 pills per day
Prilosec
Zantac


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 11/7/2008 2:45 PM (GMT -6)   
I think 20x per day is too high for 3 months out. You might want to talk with your GI or surgeon about what more you can do. Did you try taking up to 8 imodium/lomotil per day? What is your diet like? There might be some changes you can make to your diet to lower frequency.

Sue
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


spongebabe2pants
Regular Member


Date Joined Jun 2008
Total Posts : 94
   Posted 11/7/2008 3:43 PM (GMT -6)   
My surgeon told me I'll be taking fiber for the rest of my life. If you're scared of fiber, try applesauce. I haven't had my reversal yet, but it works wonders for thickening up my output; and the thicker your stool is, the longer it's going to be able to stay in your j-pouch. Or maybe talk to a nutritionist about your concerns about obstructions and see what they have to say. My suregon is putting very few restrictions on my diet. He said that for the first week or two after my reversal I should stay away from meat and other things that are hard to digest, but after that I should be able to eat whatever I want. Of course, within reason and I'll always have to pay attention to how my body reacts to things.

Honestly, I can't think of anything other than fiber (fruits, veggies, whole grains, metamucil) to help reduce the number of times you go to the bathroom.
Ulcerative Colitis since December 2001 (age 15)
in remission for 6 months in 2002 followed by severely active disease
1st j-pouch surgery done on July 30, 2008


psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 11/7/2008 5:55 PM (GMT -6)   
I have had the same problem with the bathroom frequency. my doctor put me on metamucil, the powder form. I noticed that the powder form helps bulk up some of my bowels, so I only go 5-6 times a day as opposed to 20 and when I do go, I have formed soft stools, rather than watery diareah. I had a total colectomy with my ilieum attached to my rectum back in aug 2008. i also have alot of food intolerances as well because of the surgery. My bowels are good now, as long as I eat the foods I can tolerate and have the metamucil powder, 1 tablespoon 2 times a day. I get the orange flavored one because it tastes just like orange juice. I have been on it for 2 weeks now, and within a day I noticed a big difference.

soccermom3
Regular Member


Date Joined Aug 2007
Total Posts : 38
   Posted 11/7/2008 6:01 PM (GMT -6)   
Thanks for the replies - maybe I will try some applesauce.  As far as my diet goes - nothing much there.  Honestly, I barely eat anything.  Just crackers during the day and a light supper. 

Diagnosed Pancolitis 5/05.
 
Waiting on Insurance to approve Humira 
Hospitalized 2/08 Severe Flare
Hospitalized 3/06 Severe Flare
Remicade - every 6 weeks
Imuran - 150 mg per day
Asacol - 9 pills per day
Prilosec
Zantac


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 11/7/2008 8:33 PM (GMT -6)   

I think your problem with high frequency is due to NOt getting enough to eat.  It sounds contrary but it's true.  You need to eat more to get through the adaption period.

Spongebabe, not everyone takes fiber.  In fact do not listen to any doctor or jpoucher who tells you to avoid this or that or that you will always have to do this or that.  It just isn't true.  We all react to things differently.

 

Sue


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


Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 11/7/2008 9:02 PM (GMT -6)   
It's definitely an adjustment period. I had a temp colostomy after rectal cancer 9 years ago, just about all of my sigmoid removed, along with 15 inches of my colon and my gall bladder. I've been left with multiple bm's a day, at least a dozen or more. Sometimes up to 20. Small in amount but constant through out my day, as long as I continue eating. I went on a low residue diet after my ostomy takedown, kept a food journal, reduced my stress as much as possible and exercised. I still follow the LRD about 75% of the time, I now take a pediatric amount/dose of a stool softener (Colace) each evening, eat smaller meals than I did prior to cancer, I feel much better if I have very light meals but instead of 3 a day, I opt for 4 to 6. I also drink a lot of water, if I can manage it. At least 6 full glasses a day. I stop eating solids after dinner, by 7 p.m. so I can get a decent night's sleep without needing to use the bathroom. If hungry after 7, I drink 1 or 2 tall glasses of water.

Did I do ALL of these things within the first 6 months or year after my reversal? Oh no, it was definitely trial and error. Some patients find that extra fiber in foods is helpful (bran cereals or muffin, fresh fruit, etc.) or fiber supplements (I tried both liquid and pill form, didn't help....in fact Metamucil you stirred into water made my gut overly active, as if I had just taken a Fleet's Phospho Soda treatment! Yikes, it made things awful for me....).

I personally believe now that A. we are what we eat. B. keep a food diary or journal. C. never apologize for how you are feeling or accommodations you need (to stay home or have your own hotel room/bathroom if traveling with others or to decline a social invite) D. give your body time to heal and be patient in determining what will help you the most and finally, E. talk to your doctor if you try a LRD, make sure it's okay for you to be on it. My doctor approved of my diet but did not initially suggest it (he said and I quote, "eat anything you want and enjoy life, take Immodium!".....well I live in Cincinnati and we have a specific local dish here called Cincinnati Chili! I can never, ever, never eat it again! Sure, I can eat anything I want - wrong! But I learned this the hard way......)

You will figure all of this out too. You may find that fiber helps you the most. Or that it makes it worse. You will find your what I call my magic or go-to foods - bananas, plain yogurt, Club crackers, applesauce, white rice, instant mashed potatoes, plain white bread you buy in a local bakery, plain english muffins are all foods I keep on hand on a regular basis.......

soccermom3 - I wish you my very best thru this adjustment phase. It is not easy. So hang in there and vent with us.

Marsky/Mary

Post Edited (Marsky) : 11/7/2008 8:05:33 PM (GMT-7)

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