Ostomy - Next chapter in my fight with IBD

Hi all. I originally posted this under surgery, but a lot of the folks responding said I should pose these questions in the Stoma Subforum. So, here goes...

Barring a miracle, looks like I'm headed to surgery for an ostomy in the next month or so. I had hoped to avoid this, have done everything possible not to take this route... but, life doesn't always go the way we hope. So, my question basically is... Any advice, thoughts or stories those of you who've already taken this step willing to share? This is not my first surgery, but I'm hoping it will be the last.

An ostomy gave me my life back and I can't express how grateful I am to my medical team for providing the support. It also really helped to read blogs and watch video's of others with an ostomy.

You may find it better to visit a local ostomy support group prior to having surgery for the support.

Colostomy or ileostomy? Permanent or temporary?

I really have no advice to offer since my surgery was an emergency procedure, but I'll echo what VO said, my stoma's given me my life back! Don't get me wrong, it's a huge adjustment, but so worth it for me in the end. I hope it will be for you as well.

As I commented on Cindy's thread, if it's an ileostomy, one good thing is that you should never have to go through a full bowel prep again. Usually, for those of us with ileostomies, we only need to do 24 hours or so with clear fluids as bowel prep.

If a radiology department ever tells you otherwise, check with your GI. It can be very dangerous for an ileostomate to do a full bowel prep as we can become severely dehydrated.

Susan2 said:

As I commented on Cindy's thread, if it's an ileostomy, one good thing is that you should never have to go through a full bowel prep again. Usually, for those of us with ileostomies, we only need to do 24 hours or so with clear fluids as bowel prep.

If a radiology department ever tells you otherwise, check with your GI. It can be very dangerous for an ileostomate to do a full bowel prep as we can become severely dehydrated.

Click to expand...

I had to do a bowel prep for my ileoscopy, but I found it to be unnecessary as I was already "cleaned out" well before taking the prep, since I fasted on the day before the scope.

My GI insisted, but I think the next time I'll tell him that I'd rather skip the prep.

OK, at this point, the consensus is that it would be a temporary colostomy. However, it has been suspected that my disease extends above the terminal ileum, but has never been confirmed because the inflammation in my colon made going beyond it impossible. So... when they do the surgery.. my diagnosis might change. The other aspect is... that when I originally got ill... back in 2006... I had indeterminate IBD, which eventually was diagnosed as a mixture of Crohns and Ulcerative Colitis... but predominantly Ulcerative. This actually turned out to be good news... as the two competed with each other. When LDN kicked in... it healed the UC infected areas (the majority of my colon) leaving only a few pockets of Crohns areas where ... although the disease went dormant.. I was left with oodles of scar tissue. This time... my disease presented itself differently. The last foot or so or my colon was pristine... but everything above was affected. And my bathroom episodes were also completely different... 1st time, I'd go... with tremendous amounts of bleeding... (litre of blood every other day or so) couple of dozen times or more per day.. and in (sorry if this is too much information) bouts that seemed never ending, you know? Like, I'd wonder how it was possible for a human body to produce such amounts. On this latest version of the disease... I only go about a dozen times per day... in very miniscule amounts... and absolutely no bleeding. The 'doctors' think it is Ulcerative Colitis again (I believe because that was the predominant culprit last time) but I have a 'gut' feeling they are wrong (not that doctors can make mistakes or anything). So, my long winded point is...

I've been told this would be a temporary colostomy... but that would be a best case scenario... yet I wouldn't be at all surprised if... once they open me up.. they discover it is more substantial... and that my prognosis (or theirs) could dramatically change, OK?

And, I might find... once I've made the adjustment... that living with an ostomy .. may be a better option than living with a J-pouch. I've been told that the success rate for reversals is about 70%... so reversals aren't guaranteed. And that, with a J-pouch, I may find that I'm going to the bathroom about a dozen times a day anyway. I'm doing that now... which makes earning my living as a truck driver physically out of the question. So I may come to the realization that sticking with a colostomy may be a better option for me (at least until I'm ready to retire from trucking). You see? I have tons of questions. And my only source of info stems from doctors... (not that they are ever mistaken, right?)

A classic J-pouch would only be used if it is determined to be UC and you have had your entire colon removed. I can only speak for myself and say that for me the ileostomy is a wonderful thing. I have a J-pouch formed and ready to go, but ileostomy agreed with me so much that I have kept the stoma instead of having it reconnected. Life is so good for me now that, like you mentioned with a J-pouch, going back to 10 trips to the toilet a day again is not something I am willing to do again.

I didn't find having an ostomy a big adjustment at all, I took to it right away. The problems I had were needing to be very careful with diet - but I don't think you'd have this with a colostomy. I also seem to keep needing unplanned surgeries, so even though my first stoma was supposed to be permanent, I'm now on my third... though I'm hoping when I've healed some more I can test some more foods and see if this stoma doesn't block as easily as the first two.

Another thing I found - I couldn't learn about looking after stomas by reading in advance - I had to learn by doing, and that way I picked up all I needed to know very quickly, in the first few days in hospital.

I watched videos on YouTube of different people changing their bags and got a lot of helpful ideas that way.

I just watched you tube videos myself after seeing this post it was very helpful.

There are some great videos. I saw one - a 2 year old boy showing off his ostomy.

Elijah explains his new ostomy. This little guy ROCKS!!

I can't do links on my device. Just search. Worth it.