Considering surgery, please help.

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Regular Member

Date Joined Jul 2009
Total Posts : 170
   Posted 8/19/2009 12:44 PM (GMT -6)   
I have ulcerative colitis, i have had it for around 15 years now, untreated and uncontrolled. I am 28 years old now.

Everything i do flares me up, so i am now considering surgery, to finally gain my quality of life back, i have lost so much weight due to this disease, i now only weight 94Ibs

Can you please tell me about the surgery, about how it feels after surgery, how it feels to live with a bag on your tummy, and how many times you would expect to go to the toilet with a stoma? How does it affect your life?

I can also be contacted privately on my email from my profile


Ulcerative colitis for around 15 years untreated (Im am 28 years old now)

ASACOL, PREDNISONE, PENTASA do not work for me. Western medicines only suppress the symptoms they do not heal the underlying cause!

Now looking at alternate medicines, diet change and alternate therapies. Jini patel Thompson - Healing the gut is extremely good, as well as Breaking the vicious cycle -SCD

Started george's always active aloe vera juice

Started Japanese Acupuncture, Therapeutic massage and Kinesiology

Calcium 3 x a day for osteoporosis

My biggest concern BOWEL CANCER :O(

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 8/19/2009 8:06 PM (GMT -6)   
the surgery is hard and it hurts, i wont lie, but its soooo worth it, and when you wake up you will feel clean thats the only way i can describe it.

Anyway, at firsts its kind of weird to have the stoma, but after a few months i just forgot it was there.
I just empty it when i pee usually. If i have eaten alot, or certain foods then i have to empty more often. Or if i dont want to empty a lot i just take a few immodium.

Other than the 3 minutes or so it takes to empty it and the time it takes you to change it every 5 or 6 days you dont need to worry about it. At first it will probaboy take you 30 minutes to change it. I can do it in 8 now. Its a learning process.
But honestly, i would not tradet his thing for the world! I have a friend who when i told her was sooo jealous, she said, so all this time i have to go in there and sit and wait to poop and miss stuff on tv you can just in there, let it out and be done? i said, yep! LOL
And noone will know, i had been hanging out with them for 6 or 7 months, had changed clothes infront of them, slept in the same bed (not liek that!) went swimming, even pudding wrestling, and they had no idea!
And there is absolutely nothing it will keep you from doing, well except sitting on the toilet forever,lol.
Good luck, and if you have more quesitons ask us!

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 8/21/2009 6:14 PM (GMT -6)   
How does it feel after surgery?
It hurts at first, but they give you really good pain medicine to help with that. And the pain from your colon will be gone, which is the best feeling in the world!

How it feels to live with a bag on your tummy?
You get so used to it that you forget it's there. It is completely hidden under your clothes, so nobody can tell that you have it either.

How many times you would expect to go to the toilet?
I basically empty when I go to the toilet to pee.

How does it affect your life?
Life is so much better, because I'm not sick anymore. I can eat whatever I want and not be in pain. I have lots of energy and live an active life that includes work, exercise, and having fun.

Having surgery was the best decision I've ever made, because it gave me my life back. Good luck with your decision, and please ask any other questions you may have.

Dx'd Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

Regular Member

Date Joined Mar 2009
Total Posts : 22
   Posted 8/21/2009 7:47 PM (GMT -6)   
Has anyone developed a hematoma after surgery?
Dx in 2001 with UC. treated with asocol, prednisone, and rowasa. Cleared up with no problems until 2007. Flared for 2 years. Used colozol and prednisone continually while adding imuran, 6MP, rowasa. None worked. Remicade was my next option. Decided against it and had a total collectomy on June 22. Planned j pouch in September.

Veteran Member

Date Joined Feb 2007
Total Posts : 788
   Posted 8/22/2009 9:57 PM (GMT -6)   
My friend has a bowel resection (she has crohns) and she developed a hematoma. Nothing to worry about.
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."

Veteran Member

Date Joined Dec 2008
Total Posts : 511
   Posted 8/24/2009 9:04 AM (GMT -6)   

I too love my ileo!  I've named my stoma Penelope and I've had her for over half a year and I couldn't imagine life without her.  : )  I am so happy to be better...and the feeling of having no UC is the best thing ever!!!! 

It really is an adjustment having the disease...then surgery...recovery...and then life UC free.  I would especially caution you to the emotional side of things b/c you have had UC for so long...but imagine...after surgery you will no longer have the disease!!!!  It's AMAZING!!!!

There are some adjustments with foods and what-not but you'll catch on.  I indulged in taco soup yesterday with whole corn kernels (not a good idea) and so I'm a little crampy and sore today b/c my body is struggling to get them out!  : )  But I'm pushing the juice and I know I'll be okay...I also know that next time I'm going to chop the crap outta that corn before adding it to my soup!  : )

I chose to have a permanent ileostomy too.  I could have gone the j-pouch route, but I was tired of doctor's, hospitals, and living in fear of more issues that are completely out of my control.  However, I know there are many many people with their j-pouch and are very happy!  : )  To each their own!

Please feel free to email me or anyone else who has email available...that's what we're here for!

: )  Robin
29 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
"Your mind is like a parachute, it only works when it is open."  -Unknown

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