Considering Surgery

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SGRUBB
Regular Member


Date Joined Jun 2007
Total Posts : 67
   Posted 8/10/2009 5:31 AM (GMT -6)   
I would love to know if anyone is feeling like me and considering having surgery? I do realize this is my own personal choice however, I would like to know if anyone has recently had it and how they feel about everything now that the surgery is over.

I have had UC for over 20 years. I am very blessed in that I have had a more mild to moderate case. I am a very healthy and athletic person as well. My BIGGEST fear is that I will not recover well and I will not be able to be active like I was....swim, run, weight lifting, etc. I also have two small kids and I want to be able to have a more normal life. It's very hard to be alone with them say shopping and then have to rush of to the bathroom....we all know this feeling so of course I don't have to explain what I go through here.

Any and all feedback I would love to hear about. I am over it and feel that finally making this decision to have the surgery is going to be the best thing I have ever done.
UC diagnosed in 1985...22 years.


Started Humira May 7, 2008


50 mg 6mp, Rowasa and Cortenemas as needed.
Probiotics and Aloe Vera Gel, and digestive enzymes.


SGRUBB
Regular Member


Date Joined Jun 2007
Total Posts : 67
   Posted 8/10/2009 5:33 AM (GMT -6)   
Oh and by the way, I am not taking any meds currently except for enemas. I am also taking probiotics and multivitamins. I did update my profile but I guess it didn't post yet.
UC diagnosed in 1985...22 years.


Started Humira May 7, 2008


50 mg 6mp, Rowasa and Cortenemas as needed.
Probiotics and Aloe Vera Gel, and digestive enzymes.


MITSY
New Member


Date Joined Aug 2009
Total Posts : 3
   Posted 8/10/2009 6:57 AM (GMT -6)   
I have recently been diagnosed with uc and have been wondering the same thing, I am 30 and do not relish the unpredicatblity of the disease for the rest of my life. With you considering these options have you looked into the risks or down sides over the benefts of being cured yet?
Andy
 
Status:
Just been diagnosed with ulcerative colitis after 11 days in hospital (June 09)
Predisone tapering off now down to 15mg
ascol x 3
lansoprazole x 1
calcium x 2


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/10/2009 7:32 AM (GMT -6)   
With over 20 years you certainly are doing the right thing by thinking about it. Many people with UC have electively had surgery to eliminate the risk of colon cancer.

I had surgery due to prednisone dependency and because I believed I would never get out of the 2 year flare I had been dealing with. Like you I was very concerned about my ability to be active. I hike, backpack, and cycle and I wasn't willing to give those things up. I'm happy to say that my jpouch has far exceeded my expecations in the activity department. Since surgery I have hiked 200 miles across England, 100 miles through both Scotland and Ireland, I've hike in and out of the Grand Canyon, backpacked in the Sierras, and am getting set to go on a 135 mile hike on the John Muir trail in the Sierras. I have no limitations in my diet and I take no medications. I never worry about knowing where bathrooms are and I never thought life could be this good post surgery.

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


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/10/2009 9:31 AM (GMT -6)   
I had UC for 8 years and was just so tired and worn out i couldnt do anything and my son was suffering. So i got this stupid thing out 2 years ago, i have a permament ileo though, i didnt opt for the j-pouch. But it hasnt stopped mefrom doing anything.
Im not a terribly active person, thats just cause im lazy though, lol. But i still swim and go to waterparks and i was going to the gym everyday for a while and i chase my kid all around and go dancing and stuff like that. I havent come across one thing this bag has kept from doing.
good luck!

ruissarr
Regular Member


Date Joined Jul 2009
Total Posts : 80
   Posted 8/10/2009 9:53 AM (GMT -6)   
hey so my wife and i have decided, i am going to have the surgery! i am meeting with my gastro today at 4 to get the ball rolling and get reffered to the surgeon, Dr Craig Johnson in tulsa, ok...i am plain ole excited now! its a hard decision to make but now that i have made it, i am positive and just going to hope for the best...
i met with a friend yesterday that had the pouch surgery 25 years ago, back then it was experimental and they did the whole thing in one surgery, her pouch failed of course since they did it in once surgery.. but she now has a permenant ileostomy and loves it..said it was the best decision she has ever made...
also i was watching videos about the ostomy and these people showed the stoma to be like 2 inches long and as wide as your thumb, i was happy to know that the ileostomy is much smaller =)
24 year old guy, UC since I was 17
remicade for two years, worked OK but got married and was told it could cause birth defects so I quit feb 08. my wife reminded me that i still had D most of the time while on remicade.
Wanted to start a family Jan 09 so dr stopped 6mp, wife got preg in may so I am back on 6mp also lialda and 20 mg pred
 
starting back on at least one remicade IV to see if i can get some relief next week,
most likely having j-pouch surgery this year, within a couple months, so i can be healthy for my baby, meet with my dr about it august 10!


NiRo
Regular Member


Date Joined Aug 2009
Total Posts : 198
   Posted 8/10/2009 9:54 AM (GMT -6)   
suebear - I don't think I am near getting the j-pouch surgery as the first level of drugs seem to be working for me thus far. However, as a new patient to UC, I have been doing alot of reading about all potential solutions to the disease. It seems to me that the worst thing about J-Pouch (post surgery and living with it) is needing to go 6-10 times a day after the surgery (lack of a large intestine to absorb water). How bothersome is that? Thx again for the in sight.
Lialda 4x a day
Rowasa Enema 1x at night
Align (Probiotic) 1x a day
Fish Oil 4x a day
Multi-Vitamins (includes Vitamin D, Vitamin C) 1x a day


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/10/2009 10:31 AM (GMT -6)   
The frequency is such a non-issue as the pouch emtpies pretty much every time one urinates and is as quick and easy as urinating. Emptying a jpouch is nothing like emptying a colon. It takes seconds.

The water absorbtion is not a problem for me but some pouchers do have to watch their fluid intake. I drink 20oz of coffee in the morning and then don't drink anything again until I go to the gym. My diet is very high in fresh fruit which contributes to my water intake. Physical activity makes me drink more than the average person and while on long, all-day, hikes I will supplement with an electrolyte. But for working out in a gym I only drink water. Neither of the issues has been bothersome for me.

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


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/10/2009 2:47 PM (GMT -6)   
ruissarr-the size of the stoma varies on different people. You will want yours to stick out some, otherwise it wont put out into the bag. And how big around it is depends on how big around your insides are. But on average its not very large.
When you get closer to surgery, come over to the ostomy board and let us tell you the things they wont tell you, lol. The little tricks.

And YAY for being healthy soon! you have made a good decision!

SGRUBB
Regular Member


Date Joined Jun 2007
Total Posts : 67
   Posted 8/10/2009 8:42 PM (GMT -6)   
Thanks so much to everyone for your replies.

Andy, I have looked into all the good and bad about the surgery. I think I have been really researching this for the past year. I have been in denial about it I think. I now know that this has to be the best option for me. Like the responses on here, most people that have had the surgery say it was the best decision they ever made.

I am truly thankful for this site and all the wonderful information and help it provides. It is so nice to know there are so many out there that are in the same situation.


So, on another note, I will say that I am thinking jpouch surgery may not be an option for me.
The reason I say this is because during the last colonoscopy I had, which was about 2 months ago, the major problem area I have is with my rectum area and about a foot up from there.
Am I correct in saying that if they do the jpouch, it's reconnected to the rectum? I have not done a lot of research on this. I just figured I would live with the bag and know that I would be happy about it. Living like that has to be so much better then living with pain and going to the bathroom 15 times a day.
UC diagnosed in 1985...22 years.





Probiotics, multi-vitamins, Rowasa Enemas and cort-enemas as needed.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/10/2009 8:50 PM (GMT -6)   
they do reattach it,but i dont know how much, if any of the rectum they leave in or if they "make" a new one
WHen you have a perm ileo (the bag) they will just take the rectum out and sew it up. That was the hardest part for me to wrap my head around, i just couldnt figure out how you takke out a hole! I still dont get it, lol.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/10/2009 8:54 PM (GMT -6)   

You can have a jpouch no matter what the extent of disease is in the rectum.  The jpouch surgery removes both the colon and the rectum; all that is left is about 1-2cm of rectal tissue that surgeons will strip.  My UC was primarily located in my rectum; about 3cms up.  I have had a very successful jpouch for the past 8 years. 

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


SGRUBB
Regular Member


Date Joined Jun 2007
Total Posts : 67
   Posted 8/11/2009 6:05 AM (GMT -6)   
Wow! This is great to know! I did not know this.

So do you go more often but without pain?
UC diagnosed in 1985...22 years.





Probiotics, multi-vitamins, Rowasa Enemas and cort-enemas as needed.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/11/2009 7:13 AM (GMT -6)   
Exactly. No pain, no urgency, and no long periods of straining on the loo.

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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