HealingWell
Search Close Search
☰

Anyone had an elective ileostomy?

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/16/2007 8:26 PM (GMT 0)
Reading everyones posts, puts new questions in my mind! YIKES!  As if surgery in itself wasn't enough to consider,  now I'm truly wondering if I should avoid the jpouch attempt all together and opt for the bag.      What is hard is that its best to have surgery when the colon is in its best health, so when your feeling good,  its harder to say "i want surgery".  but then as soon as that next flare comes up you can't wait for it.     
Posted 12/16/2007 9:53 PM (GMT 0)
I actually can't wait to have my surgery.  I'm scheduled to have step 1 of a 3 step j-pouch surgery at the end of January.  I'll have the bag for awhile after step 1 until I heal well enough to go on to create a j-pouch.  I'm so sick of being sick and I want my life back, I'd actually have the surgery tomorrow if the surgeon had any space available.

Don't get me wrong, I'm terrified of the surgery itself, but right now my quality of life is so low, it didn't take much to convince me that surgery is the way to go for me.  I can't wait to stop taking prednisone and Remicade, both of which really don't seem to be doing much to help my UC right now anyway.  I am sort of hoping that I'll feel so great with the ostomy bag that I might actually wait to have the j-pouch creation surgery so I can just enjoy life a bit, be a better mom to my daughter, a better wife to my husband, and return to my job.

I haven't been as sick for as long as folks with UC seem to be before they opt for the surgery, but over one year sick is long enough for me.  I'm tired of waiting for meds to work, trying more new toxic drugs . . .

Thanks so much for all who have posted here as I'm following this thread closely,

Good luck with your decision!

 

Posted 12/17/2007 1:54 AM (GMT 0)
if you are tired of being sick from UC you really only have one choice, it's a hard choice, it really is. I had gotten to where i wished soemthing would happen that would make me have to lose my colon where i wouldnt' have to decide on my own.
But, here is something to think of, i may have already said this, so sorry if i repeat myself.
You KNOW you hate the way you live now you KNOW you are miserable and that it isn't going to change. And yes, it's possible that you may get a bag and not like it, but you won't be sick and you won't feel bad. You are going into somethng you don't know and it's new and scary, and it's okay to be worried and terrified and all that, but i really think that you guys will be so much happier, regardless of that, you will be healthier!
i hope that post made sense, it's hard to explain what i am trying to say.
Posted 12/17/2007 6:19 PM (GMT 0)
I am so there with you. Before I had my surgery I don't know how many times I thought the same thing - when I was sick I wanted surgery, then I'd get a little better, and I'd think I could wait. I eventually got so sick from the drugs my liver failed, and I couldn't take ANY drugs at all, except super high doses of steroids via IV. So, of course, my UC came back. I almost died, and didn't have a choice about the surgery at that point. Don't follow me. Emergency surgery is NO fun. Because I didn't schedule it, I was soooo sick when I went into the surgery and I was on the steroids. My recovery was twice as long and twice as hard because of it. After all is said and done, I am soo happy with the ileostomy. Even with everything being so screwed up. I go in in January to see if I can have a j-pouch. I am going to try, but if I do get stuck with the bag forever, then so be it. It's not so bad.
Posted 12/17/2007 8:45 PM (GMT 0)
To everyone contemplating surgery,

After 7 years of sprinting to the bathroom umpteen times a day, I must say that having an ostomy is wonderful! Now, I never have the urge to go anymore, and I absolutely LOVE it!! I can sleep through the night, have no pain or sickness, and I do not take any medications anymore. Being healthy is the greatest gift you can give yourself and your loved ones.

I was also scared of the unknown and never knew anyone with an ostomy, so I had a ton of misconceptions that were flat out wrong. I wish I would've found this forum years ago, because I would've had surgery much sooner, and I would not have wasted my late 20's and early 30's being sick.

Tomorrow is my 37th birthday, and I feel so much younger than I did when I was sick. I felt 80 then, now I feel 20! I even got carded for a bottle of wine on Saturday, which made me very happy! :-)

For those of you with UC, surgery is a cure. Good luck with your decision!

Cecilia
Posted 12/17/2007 10:07 PM (GMT 0)
Happy Birthday wishes sent your way Cecilia, i hope you have a great day, Gillian x
Posted 12/19/2007 11:50 PM (GMT 0)
Adrienne,if I was in your situation it would be a no brainer I think!I have long periods of remission with much fewer drugs than you're on.If I had to take that lot and still wasn't achieving decent remission(at least six months at a time with ZERO symptoms)I'd be getting surgery,no question about it!
Posted 2/4/2008 10:09 AM (GMT 0)
Hi All,

I'm new here and this question interests me too. History - diagnosed with UC last Aug (07), had prednisolone, Asacol, Azathioprine, but nothing has stopped it. Recently I've also had Infliximab too, and that isn't holding it. So my consultant is arranging for me to go see the surgeon this week to discuss operation. Although I'm ill (like you princesscolon I've also got related arthritis) I don't think I'm that ill that my quality of life with a bag would be better than it is now - my bowels usually calm down in the afternoon just leaving me tired but I can do stuff in the afternoon. At the age of 28 and only having had the disease a few months I find it hard to accept that I need the operation.

Have you yet decided what to do princesscolon or silent lucidity? I'd be really interested to know. Hope you're all well.

Matt
Posted 2/4/2008 12:19 PM (GMT 0)
Matt,

Welcome to Healing Well. I'm sorry you've been diagnosed with UC. I hope it's okay if I answer your question, because I was in the same position as you when I was 28. I was newly diagnosed with Crohn's, and the doctor wanted to remove my colon. sad I hadn't been sick very long, and I just wasn't ready to go there.

I was determined to try everything before having surgery, which I did for 7 years. I took prednisone, Asacol, Azathioprine, antibiotics, and Infliximab, and went on a vegan and gluten free diet. I would have a couple of good months, but then my colon would flare up again. It was a nightmare roller coaster that I wouldn't wish on anybody.

I developed fistulas, which is when the disease burrows a hole from the colon to another part of the body. Those caused me to develop abscesses, and four GI doctors told me that I had to have a temporary ileostomy to bypass the colon to let it rest and hopefully heal.

Much to my surprise, I liked having an ileostomy! I could live my life without having to know where the nearest bathroom was. I could also sleep 8 hours through the night, which I hadn't done in years. I got my energy back and was able to enjoy life again.

After 8 months with an ileostomy, my colon started bleeding nonstop, even though I wasn't using it. That's when I realized that it wasn't going to heal, and I decided to have it removed. I've never regretted that decision for one second. Looking back, I probably should have had the surgery right away, but I needed to know that I tried every other option first.

I hope the medicines start working for you soon. Medicines, when they work, can put you into short term or long term remission, but surgery is a cure, meaning it's gone forever.

Good luck with your decision. :-)
Posted 2/4/2008 5:03 PM (GMT 0)
Many thanks Cecilia. I'm coming to the conclusion that now is perhaps the right time as consensus seems to be that I'd only be delaying the inevitable one way or another, and it is better to have the op whilst you're relatively fit and healthy and it doesn't have to be done as a rushed emergency!

The consultant is of the opinion that the medicine hasn't worked so far and is therefore unlikely to work - that is the bit that surprises me, as I would have thought it might take a while to have an effect? I have also tried several different diets which have made no difference.

I've had non-stop bleeding since August, except about 1 week when I first started prednisolone. The infliximab has helped clear the related arthritis, but other than that has only made me feel sick! Like you I wanted to try everything do I wouldn't look back thinking 'if only', but the consultant is now indicating he's not prepared for me to wait the next 4 weeks for the next dose of Infliximab which he doesn't believe will work anyway. In the long term realistically even if Infliximab did start to work I could not afford to have regular doses anyway. Azathioprine has had no effect in the 3-4 months I've been on it so far.
✚ New Topic ✚ Reply
12