A FEW QUESTIONS...

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ring of fire74
Regular Member


Date Joined Oct 2009
Total Posts : 71
   Posted 10/3/2010 5:17 AM (GMT -6)   
Hello to you all,im a 36 year old male from england and i have had UC now for nearly 4 years,the last 18 months has been real bad and i am going down the surgical route,hopefully the sooner the better.
Im thinking of going for a ileostomy as i have heard that the jpouch can cause a few probs with UC,as mine is worse down by the rectum im afraid it may come back,so with an ileo i would like to think that its gone for good. Im not one bit afraid of having a bag the rest of my life,as i want to get back to having a normalish life.
So,thats question 1. Is a bag for life the best option?
Question 2. Im a very keen runner,will running be safe with a bag?
Q3. How many times a day do you have to empty the bag?
Q4. I work in the food industry,will i still be allowed too?
Thanks for any output whatsoever.
ROF :

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 10/3/2010 7:11 AM (GMT -6)   
Hi ring of fire,
No one can tell you if its the best option for you or not, only you can answer that. As for being able to run, thats a definate, there is really nothing you can't do with the bag on, life is great with an ileostomy for me and I think you will find that we all feel the same way. Of course you can still work in the food industry, there is nothing to stop you from living a fulfilling life with a bag, which we all prefer to call a pouch. I have had mine now for about 18 months due to crohns/ colitis and kept losing control of my bowel and was unable to go anywhere without having an accident, so life was hell for a long time and I believe that with UC this surgery is a cure for you. I'm sure others will be along to chime in and give you their experiences living life as an ostomate, oh and as for emptying the bag it varies some days you may need to empty it 4 or 5 times then other days may only need to empty twice as I have done today, it does tend to be less the longer you have your ileostomy for and also depends on how much you eat and how often you eat etc. Some foods go through faster than others as well, in time you learn all those things plus having a site like this is great so we can all exchange experiences and help each other out. This place is fantastic and all such nice people. Hope I have been able to shed some light on it for you and hope you make the best decision for you, take care and keep us posted on what you decide. Good Luck
Doreen

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 10/3/2010 3:59 PM (GMT -6)   
     Hi ring of fire...I recognize your name from the UC forum.  Sorry to hear you are suffering so.  You probably read some of my posts as I have been on here quite often.
     I agree with Doreen, what type of surgery is up to you.  Thoroughly discuss your options with a GOOD colorectal surgeon.  This is a big decision.  No one was more afraid of surgery than I.  My case is very similar to yours.  I had ulcerative proctitis for twelve years, the last two being prednisone dependent.
     I have a permanent ileo because my surgeon said I was "too old" (63 at the time of surgery, 64 now) to go for the j-pouch.  As a matter of fact, he flat refused to do a j-pouch on me.  He said it would be more stressful on my system than open heart surgery.
     The bag is no problem at all.  I can eat just about anything as long as I chew each bite thoroughly.   We were at Friendly's Restaurant about a month ago and my hubby and daughter were finished their meals before I even got half way through my burger.  But boy did I ever enjoy it!  Something I couldn't eat for quite some time.  I empty my bag about 4 times a day on average....not during the night.  If you don't eat after 7 pm, you won't have to either.
     My surgeon left the anus intact.  That is one question to ask your surgeon.  I have had an anul abscess which had to be drained, not pleasant, about a month or so ago.  Then went on antibiotic (cipro), which gave me an allergic reaction.  I asked why he left the anus intact and he explained that there are more complications when sewn shut.   Who knows?
     Working in the food industry should pose no problem.  I am not a runner, but I see no reason for you not to once you are healed.  Good luck!

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 10/3/2010 5:32 PM (GMT -6)   
I second what everyone else has said. It is your choice as to whether it is best for you, but most of us will probably tell you it is best.
 
Yes, you can run. I danced 6 days a week at Disney World with mine and it was totally fine. The food industry--non issue. They're totally unrelated. Of course you can do it.
 
With UC, as you know, an ileo is a cure for your disease. I'd say go for it, but it's just my opinion. I've only had mine 6 months but I haven't regretted it one day yet.
 
Let us know if you have any other questions!
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 10/3/2010 8:08 PM (GMT -6)   
Just wanted to throw out there that the J-pouch removes all the colon and rectum so it is a cure for UC and it will not come back. Now the J-pouch can have some problems like pouchtitis, but the UC won't come back. :)

and you can still work in the food industry. everyone poops, you'll just be doing it from a different location, lol! Can't discriminate on that!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-Now IBD is indeterminate tests will be done after healing if still UC J-pouch surgery, if Chron's take down of colostomy

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 10/3/2010 9:26 PM (GMT -6)   
I have a permanent ileostomy. How many times a day does one with a J-pouch need to visit a restroom? I believe it is much more often than with an ileostomy.

Dan

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/3/2010 10:40 PM (GMT -6)   
1. i chose a bag becasue i didnt want more surgeries, and im kind of pessimstic.

2. Yes you can still run, you will have to wait a bit after surgery, until you are healed up.

3. i dont see why food industry would matter i was a waitress for a while after surgery.

4. i empty when i pee, i have no idea how many times, it takes me like 3 minutes in the bathroom to empty and pee, so its not like its a hassle

you will feel better regardless of which you choose, so good luck!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

ring of fire74
Regular Member


Date Joined Oct 2009
Total Posts : 71
   Posted 10/4/2010 2:32 AM (GMT -6)   
Thanks very much for all your output of which most of it was very encouraging.
I recognize some of your names from the UC forum too, after deciding about surgery i thought id come and have a look over here,its always good to here other peoples experiences.

Just the thought of spending some quality time with my fantastic 8month old daughter(and wife off coarse) is all the encouragement i need,ever since she was born i have had to cancel things or stay at home and it breaks my heart, and being male i am also a bad patient,my wife has suffered enough too!

I just want the darn thing out now........hoping to hear back from the doc soon!
Thanks again
ROF
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