Soon to have surgery...I hope!

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summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/5/2007 6:24 PM (GMT -6)   
Hi I have had UC for 8 years and nothing is working so I am going to have sugery, I hope.  I went in august to the dr and said i wanted surgery and he tlaked me into remicade. and i tried it and it didnt' work so I lost 6 more months.  Anyway, I went today because things are only getting worse, (i lost 8lbs in 2 day) and i am so tired of being sick.  I have read what all of ya'll have to say and it really really helped me to decide what I wanted to do.  I don't want  the j pouch i want the other kind.  But I don't undertand what it means when it says permanent and temporary.
Also, I know a big thing people worry about is leaks why can't you just put some gauze over it?  Maybe that is stupid. 
I have an appointment 3-14 with a surgeon, and hopefully will have this stupid colon out soon!
How long is recovery time, like in the hosptial time?
 

golfer76
New Member


Date Joined Feb 2007
Total Posts : 8
   Posted 3/6/2007 5:36 PM (GMT -6)   

I had UC for 7 months before it ate a hole in my colon and I had emergancy surgery.  I lost 60lbs and was completely miserable no matter what diet I was on or drugs I was taking.  I sometimes get bummed about it my bag, but quickly think back to how miserable I was before.  It was so worth it for me!  I have had my bag for almost 3 months now.  I just got back from vacation where I did all kinds of activities including swimming and hiking.  That was probably the best test for my bag.  It did almost come off when I went down the waterslide head first and smashed my stomach into the water, but it was fine being in the water for long periods of time without any leakage.  I haven't had any problems with leakage yet. 

I was in the hospital for 10 days after surgery and was at home for another two weeks before returning to work.  Seven weeks post surgery I played 72 holes of golf in 3 days, walking all the rounds.  I was tired and sore, but it felt great to be so active for the first time in months!

Good luck at your Dr.'s appt.


Westcoast Joe
Regular Member


Date Joined Apr 2005
Total Posts : 130
   Posted 3/8/2007 5:18 PM (GMT -6)   
My life has been great since the bag. I play hockey, swim , golf, fish, drink beer and smoke cigars. Life before was horrible. You will almost forget about the bag after a few months. I can wear a belt and any clothes I want. I work 60 hours a week and just got promoted. I had one leak and thats when i ate salted peanuts and while i emptied the bag a piece of a nut broke through. I have had my bag for over a year. You will love it. Joe

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1243
   Posted 3/9/2007 9:35 PM (GMT -6)   
Cattieos said...
But I don't undertand what it means when it says permanent and temporary.
Basically, it's exactly that - a permanent ostomy is yours for life, a temporary one means you can be reversed back to either your original plumbing or to an internal pouch at sometime in the future.
With permanent ostomies, quite often (but it is not mandatory) the rectum and anus are removed either at the time of the original surgery or sometime later on.
Cattieos also said...
Also, I know a big thing people worry about is leaks why can't you just put some gauze over it?  Maybe that is stupid.
Not such a stupid question. When you have a leak, it usually means that stool has gotten under the wafer and is stopping the wafer from sticking down properly. Putting gauze under the wafer will make it leak all the more since it is the act of making the wafer adhere properly to the skin and creating a good seal that stops leakages. Stool will just soak through the gauze (ileostomy stool is a toothpaste like consistency at best). Leaving the stool leaking under the wafer means the stool is in constant contact with your skin. Since stool has enzymes in it which will eat into your skin and cause excoriation (ouch!) you should always change your wafer at the first sign of a leakage rather than trying to patch it up.
I've had my ileostomy for 31 years. It has never stopped me from doing anything other than wearing a bikini (but then again, this body was never built for a bikini anyway). I just wear a regular one piece bathing costume with a pattern, or splash of colour, over my ostomy site and no one ever knows I have an ostomy. I went through most of primary school, and all of high school with my ostomy and only those who I wanted to tell knew about it. Your ostomy won't stop you from doing anything you want to do - only your mind will.
I can't help with recovery time since my surgery was so many years ago but I can tell you that most people tend to be off work for around 6 - 8 weeks after surgery. You probably won't regain full strength for about 12 months but most people tell me they can feel the UC is gone immediately they come out of surgery. Their life usually just gets better and better from then on :)
Good luck.

I have had an ileostomy for 31 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/12/2007 6:41 PM (GMT -6)   
Thanks for the replies!  I am sorry i didnt' post back sooner, my husband takes the computer to work so I only get to use it once or twice a week! 
So, if you are interested in getting one of the pouches, like the K pouch, you would get a temporary one?
When I said that about the gazue I meant over the whole thing, then after I thought about it I realized that would look really weird and probably would show, lol. 
Golfer76-If I may ask, is your job very physical, that you got to go back so soon?  I work at a fish camp as a hostess, sometimes waitress.  Not too much work, usually we just work puzzles, lol. 
Shaz032-Thanks for the info about the bathing suit, I have been worried about that, I got this really cute bathing suit last year and I was really worried I wouldn't be able to wear it, it has a little skirt like though, sort of lookes like a tennis dress so if you can wear one that just has a print and not show i would think mine would be ok too!  I wasn't worried about the bikini either, maybe 10 years ago, but not post baby! lol.
WestcoastJoe-how long have you had yours?  And I am guessing that peanuts are a no-no?

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/14/2007 4:34 PM (GMT -6)   
YAY!!! I went to the dr today and he said I could have the sugery! April 17th! Just wanted to let ya'll know!

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 3/15/2007 8:53 AM (GMT -6)   
I have had a j-pouch for six years.
I do 100-200 mile international hikes with no problems.
I eat everything, nothing is excluded from my diet.
Research your surgical options and find the one that best
suits your lifestyle. Talk with people who have had the
various options. Understand the pros and cons of each
and remember that none of the solutions are like having a healthy
colon but that those days are long over with.

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
 


siddiadn
Regular Member


Date Joined Jan 2006
Total Posts : 28
   Posted 3/15/2007 11:00 AM (GMT -6)   
sue bear have u had any setbacks after the jpouch? also how many bms do u avg a day, also how long did it take u to recover from surgery, ihave uc and im thinking surgery might be the best option, alkso jpouch is for rest of your life right? i hear alot of ppl devlop pouchitis also, so just want to hear from u and and your experience iwth surgery.
 
 
Diagnosed with UC april 2004
Remicade - 3 infusions so far
Asacol - 12/day
Imuran - 100 mgs
 
Also on calcium and iron
 
Have tried all the MEDs prednisone(works only in high doses), enemas.....
Have tried all the natural herbs(some worked for a while) and supplements....
 
"There is no disease that Allah has created, except that He also has created its remedy."
Prophet Muhammad peace be upon him (pbuh)
 
Pondering Surgery......


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 3/15/2007 2:07 PM (GMT -6)   
No, I have not had any set backs to my surgery and feel it's the best health decision I have made to date. I had a 2-step surgery and spent 3 weeks at home after each surgery. I have not had pouchitis yet but understand that for the majority of j-pouchers it's an occasional-problem, not a chronic one. I don't know how often I go each day but it doesn't seem to get in my way. I do get up 1-3 times per night but I know I could control that better if I stayed away from fresh fruit and vegetables, my preferred diet. Life is not perfect but the compromises I have made far outweigh living with chronic refractive UC.

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
 


golfer76
New Member


Date Joined Feb 2007
Total Posts : 8
   Posted 3/15/2007 3:35 PM (GMT -6)   
My job is very active. I do a lot of walking and hiking in rural areas where there are no paths. In and out of my truck all the time as well. All kinds of nuts are ok if you are careful! I have found that I can eat anything if I take my time and chew really good. Good luck on Surgery, you will be so much happier!

Scrappyjrt
Regular Member


Date Joined Jul 2006
Total Posts : 212
   Posted 3/15/2007 4:58 PM (GMT -6)   
I too am having surgery to remove my sigmoid colon,rectum and anus. Things are so bad that I am incontinent and I just can't live like this anymore. My appt is on 4- 24 with the surgeon. I am scared,but more scared NOT to do it. Plus I had polyps removed,6 months ago I did not have any. I don't know yet if my surgery can be done laproscopically,but I hope it can be. I want my life back,I am sick of the pain,the meds,never being able to count on how I will feel,or being able to go out. I plan on my vacation in July,and want to enjoy it. Good -bye,you nasty colon rectum and anus. You are outta me.
  1.  


EricaM
Regular Member


Date Joined Jan 2007
Total Posts : 184
   Posted 3/18/2007 10:48 PM (GMT -6)   
Here's a couple of things I truly enjoyed having at the hospital. The first few days I was pretty much in bed except for few short walks a couple times a day. Because showering was really out of the question I bought the following at Walgreens or you can buy them at Walgreens.com Cannot be found at CVS:

Comfort Personal Cleansing Shampoo Cap-so I could wash my hair in bed!
Comfort Bath Personal Cleaning Ultra-Thick Washcloths, Disposable -to wash the rest of me but make sure you microwave them so they are not cold.

I also had Wet Ones so I could wash my hands after emptying my ostomy and before eating and so on.

Erica

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/19/2007 5:36 PM (GMT -6)   
Scrappyjrt-I feel the same way you do. I am scared, and the closer the sugery date gets the more scared I get. But I am looking at it like this, I KNOW i HATE living like this, sick all the time, on all these drugs, etc... I might hate the bag, it's a possiblity, but I don't think I will. It's one of those time where you have to take a chance. I made a list, you know a pro con list. and my pro list is the whole side of hte paper, and the con lits is 3 things. They are, it might leak, it is kind of gross, and I will have to carry stuff around for the bag. That's it, that's all I can come up with. I can come up with ALOT more cons for keeping my colon in!

siddiadn
Regular Member


Date Joined Jan 2006
Total Posts : 28
   Posted 3/19/2007 8:52 PM (GMT -6)   
i have heard u can have leakage problems, is that something temporary? like after step1 and does it wven happen after the jpouch
 
 
Diagnosed with UC april 2004
Remicade - 3 infusions so far
Asacol - 12/day
Imuran - 100 mgs
 
Also on calcium and iron
 
Have tried all the MEDs prednisone(works only in high doses), enemas.....
Have tried all the natural herbs(some worked for a while) and supplements....
 
"There is no disease that Allah has created, except that He also has created its remedy."
Prophet Muhammad peace be upon him (pbuh)
 
Pondering Surgery......


jpoucher
New Member


Date Joined Feb 2007
Total Posts : 12
   Posted 3/22/2007 7:36 AM (GMT -6)   
 
Some people with Jpouches don't have any issues with leakage, others leak a small amout occasionally and all they do is either wear a panty-liner or I have heard others just tuck a small cotton ball in their bottoms to absorb things. 
 
Sometimes at night shortly after the jpouch surgery some people will have some leakage if they don't wake up in time but again these are very occasional instances and don't happen to everyone.
 
If you are looking for more information regarding jpouches and want more advice etc.  you should check out http://www.j-pouch.org 
 
There are many knowledgable people who post and read to the message boards there.
** Christine **
 
UC dx - 2005
ileostomy - Oct 2005
J-Pouch - May 2006

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