ramdom questions

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awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 625
   Posted 11/21/2006 2:07 PM (GMT -6)   
1) what does "normal" ostomy-style stool look like?
2) are there any dietary restrictions?
3) how long after surgery before i can drink booze again?
4) how many inches will i lose off my waist? (right now i'm a 33" and having large bowl/rectum/anus removed)
5) is it typical to gain or lose weight from the procedure mentioned in #4?
6) are there support groups for this type of thing, besides online? (i'm in kitchener ontario canada)
7) how do you tell your relatives to leave you alone???? i've accepted this outcome, but my parents are hugely into denial and want me to try other therapies and this and that blah blah blah! drives me nuts, all i want is an end to the pain lol, maybe they need to be in a support group!

any insight appreciated

--matt
Since 1991: Indeterminate crohn's/ulserative colitis

Post Edited (awesomeame) : 11/21/2006 1:13:47 PM (GMT-7)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 11/21/2006 8:44 PM (GMT -6)   

I have a j-pouch but did have a temp ileostomy, I will do my best to answer your questions:

1.  Normal ostomy stool, if it's a permanent ostomy, will be like paste but can vary based on diet.

2.  I had no dietary restictions but that too seems to vary from person to person.  Some have trouble with popcorn and nuts and some vegetables.  My ostomy seemed to handle it all.

3.  You can safely drink again once you are off all pain medications.

4. You won't lose much weight due to organ loss.  An empty colon weighs about 10 ounces.  Toss in another couple ounces of rectum and you are looking at around 1 pound.  However, the stress of surgery and lack of calories during recovery will have you losing about 10 more pounds.  I was so sick prior to surgery that I actually gained weight after surgery and haven't stopped since LOL!!

5.  Most people gain weight once they are healthy but this does vary from person to person.

6.  The CCFA (Crohn's and Colitis Foundation of America) has support meetings in the US, not sure if they have them in Canada but you can check their website at www.ccfa.org  Also many hospitals have support group meetings for j-pouchers and ostomates.  Check at your local hospital.

7.  We must be related!  My family tried to talk me out of surgery and actually came up with some other reasons why I was so ill.  However, after surgery and after I bounced back to good health (rather quickly) they came around.  Go with your instinct, stay positive and strong, and the family should come around.

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
 


pat48ont
New Member


Date Joined Jul 2006
Total Posts : 19
   Posted 11/22/2006 7:44 AM (GMT -6)   
Hi Matt....
I might be of some help. I am 3 months post op of Proctocolectomy surgery. I live in London, Ontario. I had my surgery here in London. I was told after 2months, post op that I could eat anything again. My ET nurse told me a lot and helped me with any questions I had and still have. ET nurses become your best friends and are always there for you. Just remember to always CHEW your food, eat slowly and drink lots of fluids. They will give you a list of FLUIDS that you can drink everyday. The more fluids you drink, the better. I thought I would lose weight, too. WRONG! I figured my large intestine had to weigh at least 5 pounds but it didn't. I started losing some weight about 2 months post op. I am trying to keep it off. I have lost some inches but not where I wanted. Once I am able to exercise again, I will work on the inches. I can't exercise( like at a gym or Curves) yet. I have an open wound in my incision from an infection. Until it's healed, I can only walk. Yes, we have support groups here in Ontario. I belong to one here in London and I am sure you have one in Kitchener area. Try this website: www.ostomycanada.ca I too had family members trying to talk me out of this surgery. They don't understand your pain and what you go through daily. Now that I have a new life, they are happy and see that I am better off. Being an ostomite is 100% better for me. If you have a good attitude before this surgery, it will get you through it. I tell my friends, "it's like changing a baby's bottom, once you figure it out, it's easy" Just be patient. If you would like to email me, please do. I can help you with some little hints that my ET nurse has given me that make a big difference. You will learn so much and a lot of it won't sink in until you face it after you are living your new life. And believe me, it's so much better! My email is: pat48ont@gmail.com Good luck and keep your chin UP!
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