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I had Ulcerative Colitis...

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Ulcerative Colitis
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Posted 12/11/2008 6:59 PM (GMT 0)
I do have advice: have the surgery. I lost all of my 20s and my early 30s to this disease, and now--having had the surgery--I wish I'd understood enough about it to have it done about 15" after I was diagnosed. Get the most experienced j-pouch surgeon you can get near (and if you have a choice among great ones, get the one who does it laparoscopically); you're not going to believe how much better your life will be on the other side of it.

Also: no problem with bikinis; some ostomates can even wear them without a bag showing (depending on where the stoma site is), and some very hardy souls don't care whether a bag shows or not. You'll have scars no matter how you have the surgery done, but I feel proud of mine. My personal feeling is that if even I cared about people not seeing scars, the price of having to wear a one-piece would be nothing in comparison to how much my life has improved.

Take care of yourself!
Posted 12/12/2008 1:02 AM (GMT 0)
Hi Sparkle

I know exactly how you feel, as most of us who have/had colitis would too. I was 24 when diagnosed and tried a lot of meds and was told several times by GIs to get the surgery. I worked out at the gym about 5 days a week and the last thing I wanted was an incision on my stomach and feared my 6-pack abs would be all caved in post surgery. Fast forward seven years and cumulative steroid damage to my bones, it was my time.

The second surgery is some time in March. The physical pain post surgery is bearable thanks to pain meds. One of the most difficult things to deal with is my lack of energy. I hate not being able to work out but I know I'll be back in a few months (hopefully). The best thing is being off all colitis meds, forever, AND I don't have to ever worry about colon cancer. No more colonoscopies either!!

Talking to others who had positive experiences helped with my dealing with deciding.

Anyway I don't regret the surgery as of today. I've heard anyway that like 93% of people are happy with the surgery. You're young, that's to your advantage as well. I just needed to be emotionally ready.

Make sure to write down all the questions you have and don't be shy. The surgeon should be well experienced with j-pouches too.

Good luck and keep us updated!

Cher
Posted 12/12/2008 2:58 AM (GMT 0)
You're more than half way there !!
Posted 12/12/2008 11:47 AM (GMT 0)
I had my ileostomy surgery when I was 10 years old (I'm 42 now). It was the best decision my parents ever made for me. I have to admit it gets me frustrated at times when I read on here and elsewhere how hard some people work to hang on to their colons and how sick they become because they fear surgery. It's only natural I guess, but hindsight is 20/20. I can tell people until I'm blue in the face how much better they'll feel after surgery, but they have to come to the decision in their own time.

Having a bag isn't half as bad as everyone imagines it will be. The Queen Mum lived with a colostomy for 30+ years before she died. John Wayne had one, as did Bob Hope. Fred Astaire had one and Barbara Barry (she played Barney Miller's wife in the TV Series and the nana in Suddenly Susan) even wrote a book about her life with a colostomy called 'Act One: Colostomy and Other Adventures'. Rolf Benirschke played 7 seasons for the San Diego Chargers with his ileostomy - he wrote about his life with UC and his ileostomy too - I highly recommend his book called 'Alive and Kicking'. He's a very active advocate for young ostomates in the USA.

Good luck with your decision.
Posted 12/19/2008 9:32 PM (GMT 0)

Hi All,

I finally scheduled the reversal surgery.  The date is February 23 and I am so looking forward to it.  What's really nice about this surgery is that the surgeon won't have to re-open the incision.

Anyway, it's been about 5 weeks since my first surgery and I'm doing so much better than I was during the initial weeks.  My energy has increased dramatically (no more naps during the day)!!  I kind of feel like I could go back to work, but I'm hesitant due to the pouch; I haven't tried on any of my work pants, and I'm afraid that they'll be too tight around the pouch.  By the way, I sit in front of a computer all day, so it's not like I have a strenuous job.  Maybe I'll just take the full eight weeks.

I have some irritation around the stoma site and my ostomy nurse told me I need to change the pouch every two days, until the irritation goes away.  I also asked the surgeon today if I can carry more than 10 pounds and he said I could, which I am very happy about.  At least now I can do some normal grocery shopping, instead of picking up just three cans to avoid a hernia.

I am rambling on and on, so I'll stop myself now.

I hope everyone is doing well!

Cher

Posted 12/19/2008 10:14 PM (GMT 0)

HI Cher-

I am glad you are feeling better. I was wondering how the whole bag thing is going. How difficult has it been for you to get used to it, change it, sleep with it. Any words of wisdom?

Thanks-

Posted 12/20/2008 2:05 PM (GMT 0)
Hi Jackie

I got used to wearing the bag fairly quickly, although it still is slightly uncomfortable to have the bag and go out to appointments and food shopping.  I worry too much that the bag will just detach from the wafer while I'm out.  It took me a few weeks to feel comfortable with changing the pouch myself.  The visiting nurses have helped immensely.

Sleeping with it isn't so bad; the first couple of weeks it felt uncomfortable to sleep on my sides, but I could sleep OK on my back.  Now I can sleep on my sides fine.  I wake up at least twice during the night to check the bag, to see if it needs emptying, but I fall back asleep quickly enough.

Words of wisdom: stay hydrated - some foods will make you lose fluids really quick, just make sure you replenish well.

If you find that you empty the bag a lot, ask your doctor if he/she would recommend Metamucil and Immodium.

Bottom line:  I would go through the surgery, again, if it meant not having to take steroids and immunosupressants for the rest of my life.

Let me know if you have any more questions.

Cher

 

Posted 12/21/2008 11:52 PM (GMT 0)

Hello,

I just want to mention that for those of you who are considering the j-pouch surgery (or those of you, like myself, who already got the ball rolling), a great resource is www.j-pouch.org.  I found this site quite useful in my determining whether to get the surgery or not.  Some of the people who post in the discussion board are long-term J-Pouchers, and lots of questions that I had were already posted and answered.

I realize the site has been recommended multiple times in this forum, but it's worth mentioning again.

Cher 

Posted 12/22/2008 9:32 PM (GMT 0)
Is there any chance with the UC surgery that it could come back? After reading the posts I am thinking about asking my GI about it. It would be so wonderful to not have to take all this medication.
Posted 12/23/2008 2:28 AM (GMT 0)
When the colon is gone, the colitis is gone by definition.

Some people have extra-intestinal manifestations of UC (eye and joint problems, etc). Those are not necessarily cured by colectomy, though most people find that they improve a lot. Some people actually have Crohn's that doesn't make itself known until after the surgery, and have small-bowel inflammation with symptoms similar to UC. There's nothing you can do to prevent that. And a small fraction of people who get a j-pouch (about 10%) get chronic inflammation of the pouch for reasons no one knows. It's treated with antibiotics.

If you're only on Asacol, that's not actually all that much medication, but I sympathize. I take Imodium to slow down the pouch action, and probiotics. That's it. The main thing, to me, is that my symptoms were never controlled well by anything until I was on Imuran (and then I got dysplasia, which can't be treated with drugs). I wish I'd had the surgery earlier rather than settle for that quality of life.
Posted 12/23/2008 4:53 AM (GMT 0)
To add to what she said, some of the caused by UC, or the effects of the meds for so long dont' go away, but they should lessen. LIke i had this stuff on my hands that is all red and itchy and nasty in the winter, no drs can figure out what it is. But it started about two weeks after my UC started, so i know they are related. and while it didnt' go away after surgery it's not nearly as bad! Some of my other pains and stuff went away too. LIke Charlotte, i take some immodium, usually only if i am gonna go somewhere that i dont wanna have to empty much, and i usually take some gas-x before i go out.
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