HealingWell
Search Close Search
☰

my ostomy/jpouch experience so far ( 21 year old male)

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/18/2013 9:20 AM (GMT 0)
gday im 21 years old and had UC since i was 8, this whole time it was moderate to servere and i also developed osteopenia/osteoporosis from prednisolone

late last year i had signs of low grade displaysia in my bowel and i also had a follow up test a few months later so i decided it was time to have the surgery

i currently have the temporary ostamy and have since july and am going to have my reversal in feb next year

the surgery itself was by far the hardest thing i have ever had to go through, i was in hospital for 23 days, got an infection, didnt sleep for over a week, had fevers that were 40C plus for ages and had night sweats so bad i needed to have my sheets changed twice a night for the first 6 weeks after the surgery

once the worst was behind me i have been feeling better and better

having the ostomy is basically a non issue, i have a very supportive girlfriend and im sure this is a big part of why im happy to live with it ( i could see the confidence issue if you were single)

my life is completely normal at the moment and more normal then it ever has been, when i dont get enough sleep i feel tired. When i had active UC when i didnt get enough sleep i would be throwing up in the morning at work

im no longer bleeding daily and suffer from anemia and other accosciated problems.

another thing is that my sex life is completely normal, wear a stretchy band around ur mid section and its like its not there

my greatest fear with the whole surgery besides it not working was having an ostomy and how horrible and disgusting it would be

the past few months have made me realize that this is ALOT better then living with ulcerative colitis every day

anyway this is my experience so far and im happy to answer any questions
Posted 11/18/2013 11:40 AM (GMT 0)
It's weird to think you were only 8 yrs. old in 2000, when I decided to go back to college to finish my degree!

At that time I had already had UC for 20 years! My UC was always described as Proctitis, so the doctors usually avoided the talk of getting an operation.

Since the year 2000 I've had about 3 or 4 fairly strong remissions, so I usually just try to watch my diet (except during the Christmas season!).

So sorry to hear you had to deal with this during your younger years but at least medicine has improved a lot. Glad to hear it is working out for you.

John
Posted 11/18/2013 11:40 AM (GMT 0)
Anthony,

Sounds like you've had a tough time of it, but you've come through it - and I'm glad to hear that you're happy and starting to feel good.

And it always helps to have supportive people in your life!
:-)
Posted 11/18/2013 12:41 PM (GMT 0)
Anthony,

Thank you so much for sharing your story.  I have only a few years with this terrible disease, but feel that surgery is not far away.  Reading about experiences such as yours is very valuable.  Sorry you had such a hard time. 

Was there any particular reason your surgery was so hard and you had such a problem with fevers and such?  Were you in relatively good health at the time in a good hospital with a good doctor?  I got the impression from some other posts that this was the easiest of the 2 or 3 surgeries involved. 

Glad to hear the ostomy bag is a non issue.  I, like I would guess many of us who are uninformed have the most concern about that.   

Posted 11/18/2013 1:19 PM (GMT 0)
Always nice to hear success stories. Too many times we don't hear them because people are out enjoying their lives. Thank you for taking the time to post because it helps people more than you know. Especially younger people such as yourself. :)
Posted 11/18/2013 1:26 PM (GMT 0)
Thanks for the kind words guys

Step 1 of the surgery I would imagine is easier if you have a Sub total colectomy and the j pouch not formed yet. Then step 2 the j pouch is formed that's why people have a hard time

I had my whole large bowel including my rectum removed and the j pouch made and connected and a loop ileostomy done all in one surgery. So step 1 and 2 together

Health wise I felt alright but I had been taking a low dose of prednisone for over a year and was anemic. Not to mention all the other meds I was taking

I also managed to get an infection which is another reason I felt so crap. The surgery is an absolute nightmare. Maybe I have a low pain tolerance but I dealt with having servere UC for years while working full time in a labour intensive job ( not fun when you're that sick)

I was also very nauseous for a long time after surgery and the pain killers made me sick. Words do not describe how much throwing up hurts after the surgery either.

I look back now and feel so good that it was worth it but if you're gonna do it prepare yourself mentally as best u can because it'll be the hardest thing you'll ever do

I'm back at work now and I would consider myself 100% health wise and feel so much better then I have in the last 10 years
Posted 11/18/2013 1:44 PM (GMT 0)
Wow. You are amazing. So glad to hear it is all working out so well for you now.
Posted 11/18/2013 1:46 PM (GMT 0)
awesome v man - another happy pouch pooper :-)

and yay to your supportive gf !
✚ New Topic ✚ Reply