Surgery type decision and scared

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jla
Regular Member


Date Joined May 2005
Total Posts : 75
   Posted 2/28/2006 7:49 PM (GMT -6)   
I have ulcerative colitis and have had it for 20 years. it has grown severe the past year and a half. i am sick of all of these drugs and the prednisone side effects are tortous.  I am considering surgery, but really scared. I was wondering what peoples experiences were with the j pouch procdedure. Did you feel like you had control when you had to use the restroom or did it feel like you could not make it to the bathroom? did you have leakage problems? i am worrried that i will be running to the bathroom more and not be able to hold it, (which is the problem i already have). i am afraid to have surgery and not to have the surgery.  any experiences with any of the 3 surgery types are welcome!
thank you so much

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17384
   Posted 3/1/2006 10:32 AM (GMT -6)   

     I have an ileostomy due to Crohn's disease.  I've had it for 16 years and it was the best decision I made for myself.  It has given me freedom.  I travel, swim daily and do just about anything I want with it.  I am no longer "chained" to the toilet.  It has given me my life back.  Yes, you have to make a few adjustments to your life, but that's what life is all about.  I've had many things in my life occur that I've had to make adjustments for, but it's amazing how ingeneous we can get and can figure out how to get around a "problem".   yeah   Also, sites like this are a huge help in getting ideas.  The good thing is, if you have this surgery and have ulcerative colitis, this is the cure for you.  When they take out the colon, you no longer will have the illness, I believe.  Hope this helps.

 

Sherrine


lifebegins
Regular Member


Date Joined Jan 2006
Total Posts : 72
   Posted 3/1/2006 10:48 AM (GMT -6)   

I no exactly how you feeling. I had UC for 3years and my specialist said it was one of the worst cases he had seen. I went to the loo up to 50 times a day. I had tried everything they gave me but nothing worked, in the end surgery was the only way I would have some  quality of life.

I had my large bowel removed and a colostomy bag fitted in April last year. That on its own made a huge change in my life. Then 3 weeks ago on 9th Feb I had the bag removed and was put back together again. I now go to the toilet like anybody else, they told me it takes about 3 months for the body to adjust to going normally again, but already I only go about 3 times a day.You do get a warning something is going to happen but you dont have to rush to the loo.

Ive been home 10 days now and dont regret a single thing. I feel great.

Lifebegins :-)
Had UC 2002 - 2005
Meds: Prednisolone, azathiaprine, asacol, fosamax, predsol suppositories, asacol suppositories, predfoam, painkillers, aloe vera juice, special diet ect.
Whole colon diseased, annemia, dhydrated, weight loss ect.
Had 1st operation April 2005, 2nd operation February 2006.
Feel great, aged 29, married,want children now.
 


nmohammad
New Member


Date Joined Dec 2005
Total Posts : 7
   Posted 3/6/2006 2:47 PM (GMT -6)   
Hey Jla

yea at first it is scary to have the thought of surgery...i was the same way. im a 22 college student and that is the last thing i wanted. i tried all themeds in the world but none of it was working. So on feb 23rd i went aheadd and did the surgery. the bag takes some time getting used to, but believe me it is worth it. you arent running to the toilet 20 times nor having the pain in your stomach and GI tract. i still have my staples in, but once they are out i will be movingg about. if you have any questions, please feel free to contact me or any of the members. we are behind you

dip
Regular Member


Date Joined Mar 2006
Total Posts : 45
   Posted 3/26/2006 5:19 PM (GMT -6)   
Hi Jla! I am so glad you posted this thread.  I was just told this past Friday that my doctor wants me to go for surgery.  I am going to meet a surgeon in 2 weeks.  I am also a college student and I am 24 years old.  I have tried every medication and now all have failed.  I get up every night sometimes 4 times to go to the bathroom.  I havent slept for months.  I have been sick for 9 years now, I just dont want to suffer any longer.  It has disrupted my whole life.  I am scared about the surgery, but I just dont know what to do anymore.  I hope my situation gives you insight on whether or not surgery should be considered or not.-Diana

Diana DiPaolo(DIP)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 3/26/2006 8:52 PM (GMT -6)   

I had UC for 12 years, the last 2 were in a semi constant state of a severe flare.  I tried everything western and many eastern practices to induce remission to no avail.  I had j-pouch surgery 5 years ago and it was the best health decision I have made to date.  The surgery and recovery can be difficult, but it has been worth it.  No urgency, no pain, and no more medications.  I live on a diet of fresh fruit and vegetables, foods I had to limit when I had UC.  I recommend you visit www.j-pouch.org  There are over 5000 j-pouchers on that site that can lend support, knowledge, and experience.

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
 

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