Considering Ileostomy (Young, 24years old.)

1. My life is WAY better post surgery (12 years ago). I take no meds, see a doctor 1X per year, travel abroad, and basically do what I want to do when I want to do it. My life is predictable.

2. My only regret is not doing it sooner. I stayed very ill for 2 years trying to save my colon. Those are two years I can't get back.

3. Nothing. I do everything and I eat everything.

4. Only to the point of when to share my story. I had jpouch surgery and even though I look like a colon person, my plumbing is different.

Sue

Just to chime in as an ileostomate who could but chooses not to have a jpouch: I had my colon removed almost 7 months ago and have no issues whatsoever- life is as good as it was pre-UC for me now. There was a period of a couple months after surgery that took adjustment, mostly because I had a re-opened surgical incision (due to infection) that was extremely close to my stoma. Once that got repaired and fully healed, all my issues ended. Nowadays I not only have no symptoms of pain, fatigue, urgency etc anymore but also I do weights, play tennis, bike, hike, travel a lot, etc and I don't have any logostical issues, no leaks, no smells, and I don't go to the bathroom any more than I did pre-UC. No one (except my wife at night) can see that I wear an appliance. I spend a grand total of about 2 minutes changing my pouch on wakeup every five days. i happen to be married to a wonderful wife, but no issues in the bedroom. It has not had any impact whatsoever on my self-image.

Both jpouches and ileostomies can have fantastic outcomes. Do your research on each. As well as on stuff like the k-pouch and BCIR if they apply to your situation. I personally just didnt want to risk the chance of chronic pouchitis and/or a failed j-pouch, even though the statistical chances of that are VERY low; also, in my case, the discovery that external pouch life for me was a complete non-event influenced me (I got an end ieo after step 1 of a 3 step jpouch path) - had I had issues with the ileo after the adjustment, I may have opted to try a jpouch (and still could if I want to, but I simply don't- I love never having to hold it in at all).

Note also that an end ileo performs fantastically on average compared with the flat, non-protuding loop ileo that jpouchers have to endure at some point in between surgeries. Those seem to be a royal pain. Of course, on this forum as per jpouch.org,you'll see mostly people looking for help, while mosty happy ostomates and jpouchers alike tend to stop hanging out in forums.

I certainly don't want to diss the jpouch- I just wanted to chime in that I am an extremely pleased ostomate. (for the polar opposite, there is NCOT).

Post Edited (Probiotic) : 11/20/2013 12:02:22 PM (GMT-7)

OK, I'll chime in too.

1. My life is 100000% better since surgery. Like many others I was homebound and in diapers prior to surgery. I had a lot of other problems due to UC like anemia, arthritis, weight loss, bone loss, etc. I've gone back to work and needless to say I'm out of diapers.

2. No regrets whatsoever.

3. I was into heavy weightlifting before I got sick with UC and I haven't gotten back into it yet. Part of it is fear of hernia (but I have a j-pouch now, so my hernia risk is lower than if I stuck with the ileo), part of it is that I am still weak and fatigued from being sick for so long (but that would be the case whether I had surgery or not), etc etc. Most of the time I don't sleep through the night... but again, I didn't sleep through the night with UC pre-surgery either. I can't think of anything that I lost due to surgery except my scarless belly :)

4. I was never able to date while I was sick with UC because I was in a lot of pain and often incontinent. As soon as I had my first surgery (colectomy with a temp ileostomy), I was able to start going out again and I met someone within a month or two. The ileostomy was not an issue between us and it really didn't affect dating much at all. Now that I have a j-pouch I think it would affect things even less (but I'm single at the moment :)). I only go to the bathroom about as frequently as a regular person with a colon, so I would have to tell someone for them to know that I'm pooping and peeing, not just peeing. I'm not the type to keep it a secret but I think I would be able to keep it secret for quite a while if I wanted to!

Best of luck!

Wow. Thanks for the quick replies guys! Definitely happier knowing there's a surgery possibility that seems like it really improves quality of life.

What are the key differences between J Pouch and Ileo? I've read J Pouch you can still actually go to the bathroom in the normal way if you get sick? Or did I read that wrong?

I had surgery three years ago and I am really happy with the decision. I chose a permanent ileostomy because I felt the outcome of the surgery was more predictable, I didn't want to go through multiple surgeries, and I felt it best matched with my lifestyle, hobbies and career.

1. How much better/worse is your life post surgery?
My life is better. I too have a job I love that was quite competitive to get. I work as a park naturalist and lead multi-hour hikes or do nature-related presentations up on a stage. Urgency and my job did not mix as I couldn't just leave my group on the trail or leave the stage and dash off to the restroom at a moment's notice. My other big passion is rock climbing which was hard to do with urgency. Fortunately, my UC didn't get really bad until the final severe flare-up that led me to choose surgery. For my initial 10 years with the disease I did okay and, other than a few bad flare-ups here and there, my disease was well-controlled with mesalamine pills and enemas. Once my disease worsened in the final year though, I had no patience for the ways it was negatively impacting my life. One 16-day hospital stay where I saw my health deteriorate at a frightful speed was enough for me to want to boot my colon out for good. I always feel thankful that I had a disease where there was a surgical option that allowed me to get back to good health again fairly rapidly. Life is so wonderful now. I go on trips, hang out with family and friends, eat most any food, snowboard, hike, rock climb, do yoga and work everyday at my dream job.

2. Any regrets?
Nope. I am glad I got surgery as soon as things got bad and didn't waste precious years of my life feeling ill and waiting for a cure.

3. What can't you do now that you could before?
My ileostomy hasn't stopped me from doing anything and I am at the point now where I hardly even think about it during the day. Other than the way I go to the bathroom and the need to change my appliance every four days... the only other major change is that I do have to carry a water bottle when I run and I have to pack quite a bit of extra water when I hike and rock climb. One is more prone to dehydration after ileostomy surgery.

4. Have you found dating/relationships awkward or difficult?
I am married and my husband was very supportive of my surgery. It has not impacted our relationship negatively. If anything, the whole experience has strengthened our bond.

Best wishes with your decision!

I haven't had surgery, but just want to send support your way. I am one of the stubborn ones who has avoided surgery for a long time, and I have to say in hindsight it may have been much smarter for me to have surgery 5-10 years ago and gotten on with my life. Work would have been easier, I would have maybe gone to college more, and dating would have been much, much easier.

I'm presently looking at surgery as an option, but am in remission from Remicade. I have issues with Remicade though, so that is why I'm looking.

Good luck to you.

I just want to chime in my support.

I've had the disease for about 4 years and have run the gauntlet of meds. Currently trying Humira but going through the surgical process. I have a consultation set up for December 4th. This past year to year and a half has been miserable. My health has deteriorated quickly and for several weeks I was almost completely incontinent...that finally "broke" (or awoken, depending on how you look it at) me. I've done tons of reading and research and will try for the j-pouch and if it fails go to and end ileo.

Just the common or even less common issues with the pouch are a lot more bearable than any "good" day with UC as far as I can tell. My butthole is broken, if I can't fix it then get rid of it. It's definitely time. Good luck bud!

I want to sound a word of caution here. I doubt you'll listen to it or even read the whole of my post, but every time I hear people go on about surgery like it was a life-changing miracle, I want to give the other side of the coin.

Colectomy is not a panacea: it is a treatment. It won't turn you into a brand new you. It won't turn you into superman. It removes your colon. That is all.

I had an ileostomy done 9 months ago and it has been the hardest year of my life. The first two months were by the far easiest in some ways, funnily enough. I was on oxycodone and I think that dulled things. Cue a horrendous withdrawal from Oxycodone and then Pred. That was a very difficult time, which lasted several weeks. Then about 6 months after surgery the realisation sunk in one day that my stoma was really for life; intellectually I had always known this of course, but now I knew it at the gut level.

I then went through the worst depression I had ever had. I bitterly, bitterly regretted having surgery. I felt like I had gone against my gut instincts and was being punished for it. It wasn't so much that I didn't want surgery - I'd have had a resection all right (I have Crohn's). But because my entire colon was affected, I couldn't have a resection: it had to be a colectomy or nothing. I nearly cried when I looked up pictures of stomas. Deep down, I did not want an ileostomy. I knew that then, I knew that now.

But I'm stuck with the thing now and having to learn to live with it all over again. Make no mistake about it: an ileostomy is a life-changing thing. It's messy, noisy, and anxiety-provoking. I'm in the rare position of feeling like an ileostomy has increased my bathroom anxieties. Not to the extent of keeping me housebound, but every time I take the bag off or have a brief panic attack about a leak, I am reminded I have no control over my bowel movements anymore. Literally none. I can't even feel the poo coming out most of the time.

People are seemingly so terrified of putting anyone off surgery, they minimise or ignore the downsides and only talk about the upsides. I wish I had sought a wider range of opinions, instead of just trying to be reassured I was making the right choice. I took the wrong tack. People reassured me, I mostly believed them, and ended up feeling a bitter sense of disappointment and loss which stunned me for several months.

Only very recently have I started to feel the darkness lift slightly. But I can't ever see "loving" having an ileostomy. I dunno how it's possible to mourn an organ you can't even see, but I missed my colon: the sense of having an intact, 'whole' digestive system.

Should add that I am in remission. Am single, but not have tried dating. I can eat almost anything, and have come to love spicy food again: the small bowel seems able to handle it quite nicely. I am a bit wary of certain veggies; blockages are my biggest food fear. Only had very slight ones so far which quickly resolved.

So there you have it. My story. Sorry to bang on at length, I guess this forum is the only chance I really get to tell it!

Edit: Sorry to make this post even longer, but I never mentioned having a j-pouch. I dunno how different things would have been for me if I could have had a j-pouch. I had hoped for a different kind of reversal - connection of the ileum to the rectum - but even that probably won't happen now. Even if it did, the failure rates are high and I'd probably have to revert back to an ileostomy. So for me, much of the anger came from wanting to have a j-pouch/reversal and not being able to have it.

Post Edited (NiceCupOfTea) : 11/21/2013 7:06:39 AM (GMT-7)

I just had my 1st step done 3 weeks ago and have 2 more steps to go for my J-pouch. I can't answer a lot of your questions yet because I'm still recovering but I feel so much better than I have in years, I am just thrilled so far. It's a tough surgery but in my opinion it is well worth it (I basically tried all the meds available for UC before surgery).

I'm really enjoying waking up on the weekends and just laying in bed watching TV without having to run to the bathroom like an Olympic sprinter. I even drink coffee now without being 10' from a bathroom.

Probably one of the most important things other than being 100% mentally ready for surgery (maybe 95% ready, I don't think that you can be 100%) is to find the best most experienced surgeon that you can, it makes a huge difference.

I do have a nasty scar on my mid-section because they couldn't do it laproscopically because I was so sick, ended up with 29 staples. I might get it taken care of after all 3 surgeries, but that would be 6 months away. I had really no pain from the surgery, might rate the worst pain that I had either a 2-3. Either the surgeon did a great job or the pain management team was giving me the right meds because I expected to have pain after the surgery probably a 5-7 on a scale of 10.

The ostomy does not bother me so far, it's probably temporary for me but even if it is permanent I just feel so much better than I have in years that I think that it would be worth it. Having UC and severe flares was just wearing on me.

Another good thing to do is to read the blog posts of some of the uc people who have gone through the jpouch process. Bootstrap (used to post regularly here) has a good blog that goes through the various steps. Plus pros and cons of 'the bag' at the end. And tips and techniques and such.

http://ronnielee-fightingforit.blogspot.com/2012/11/about-bag.html

Nater89,

Instead of listening to all of us talk about how much we liked our surgery compared to having UC maybe you should talk to surgeon if you are really considering having surgery, the surgeon can give you more "expert medical information" on what to expect.

There are also Ostomy support groups in most areas, you can go there and learn more about Ostomies from professionals who manage the groups and from people who live with ostomies who are there.

I am NOT discrediting anything negative....I even said it is good to hear both the good and the bad. I am MORE than aware that surgery is not a super great positive experience for everyone. What I was discrediting was NCOT's suggestion that those of us who ARE happy with the outcome are somehow downplaying or hiding some hidden negative feelings we have about it. Some people CAN be totally happy with the outcome of their surgery....and some are not.