Who chose permanent ostomy first over other surgery options?

Me! And I'm 100% happy with it. I did not think I would have been mentally able to face 2-3 surgeries- 1 major surgery is enough. When I weighed the pros & cons of a perm ostomy or a jpouch, it was a no brainer for myself. When someone has pouch problems, they seem to be the sorts of issues that require medications, surgery, & doctor involvement. When someone has ostomy problems, they seem to be worked out by one's self, trying different supplies, & if you have a good WOCN, it's usually a pretty quick fix. After "living" with UC for over a decade, I had no desire to "try" yet another option- I just wanted it gone. I had 3 surgery consults with 3 different surgeons- 2 of whom stated that they did not feel the j-pouch was the "gold standard" it's been made out to be. My GI always pushed for a perm ileo as well. I had 1 looong surgery, ostomy created, rectum removed & sewn shut. Took a good 6 months to fully heal. In the 17 months since I've had the ostomy, I've had only 2 minor leaks. No skin irritation. I don't use tons of supplies, just powder, wafer & bag. Changing the whole thing takes about 10 mintues, my time in the bathroom on a daily basis takes about 5 minutes, to pee & empty. I read the posts by others on here who are currently having pouch issues, & my heart goes out to them. I've got no complaints- sure, the ileo is sort of gross, but I never see it. I wear the same clothes as before, fairly form-fitting. So after I'd made up my mind for the perm ileo, turns out I wasn't a jpouch candidate anyway! Good, took the heat right off that decision. Seriously, I cannot think of one drawback to my current state.

I think if you are fine with the idea of having an ostomy then there is no real reason to go for the j pouch. My decision to go for the j pouch was a no brainer for me because I have two family members with long time j pouches and I saw first hand how well they did all the years with theirs. I knew I didn't want a permanent ostomy if I had a choice. Some people just know in their hearts what is right for them. Listen to yours. :)

Go for it! Sounds like you have made your mind up and are confident with your decision. All good things :) I have a temporary loop ileostomy now (going to give the jpouch a shot) and can say that even though it's been an adjustment, having the ostomy is far better than having UC. Best of luck.

You can have the 3 step and you get to try out the ostomy. If you want to go on to have a j-pouch, it's an option. If not, you can finalize the ostomy instead of building the j-pouch. Of course, you could do the perm in one shot and be over and done with it if you're confident that it's what you want. I have the ostomy right now and I am happy I will have the opportunity to get a j-pouch, but i can say that life with this ostomy pouch ISN'T terrible. it's very liberating compared to UC and it's easy to manage. I thought I would hate it but I don't. Would i like to fart again someday? YES. I hate when my pouch gets full of air and it's been a problem for me since day one. it has improved, but right now, i feel that there is air in my pouch and it annoys me. Burping often leads to problems for me so I have to go empty to get rid of the air. Not the most convenient but definitely better than having UC and sharting or running to the toilet OVER and OVER. Thankful to be done with that :)

If you end up with a successful ostomy and are not bothered with wearing a bag, or by the stoma itself, then there is a very strong argument to be made for going no further. I absolutely didn't want a stoma and put it off for as long as possible. In the end I felt like I had no (acceptable) alternative, so I went ahead and had the surgery. I had Crohn's, so I knew I would never be having a j-pouch, but my surgeon did leave my rectum in for a possible future reconnection.

I was never particularly thrilled by having a stoma, although the first year was the hardest - I really couldn't accept what had happened, to be honest. I'd had Crohn's for 13 years before surgery, and I never saw it coming until pretty near the end. Oddly, I am convinced I would have accepted it better if it had been an emergency surgery, because then the decision would have been taken out of my hands: I honestly think I would have preferred that.

Anyway, long story short, I went into surgery with almost the worst mindset possible and I eventually got used to living with a stoma. Virtually everyone does, unless there are severe issues. I went two years without the subject of reconnection being raised, then I asked my GI about it and he said yeah, why not, and referred me to my surgeon, who also said yeah why not. Had the reversal op in July this year.

It's been a rather gruelling process so far and I have no idea how it will all pan out in the long run. It's a genuine joy to be able to fart the 'normal' way again, but aside from that I am worse off than I was with a bag. I expected to go backwards for a while, but if I'm still like this a year after surgery I think I will regret not having kept the stoma in all honesty.

I may not qualify to answer your question because I was never-ever a candidate for a j-pouch because I had Crohn’s Colitis. It had affected my rectum and I had a stricture in the rectum which had been dilated/stretched twice, rendering me 95% incontinent near the end of my life with my all my “parts.”

However, I did have to make a huge life altering decision over having surgery for a permanent ileostomy or trying Remicade. It was not easy, but for many various reasons I chose surgery over the biological drugs. This was the right decision for me and I have never once regretted going straight to the ileostomy.

During my deciding phase, I researched and researched what life would be like with a permanent ileostomy. It is very common to find much information about j-pouch life, both good and bad, on the various ostomy message boards. So, I had a pretty good education of what life could be like for j-pouchers. Some successful, some not so much.

To me, I repeat, to me–some of “a day in the life” sounded way too much like the life I had been living with my symptoms and my incontinence with Crohn’s. The things that stood out for me were:

Several trips to the bathroom per day.

Possible urgency.

Potential for leaks, sometimes while sleeping.

Butt burn, necessitating the use of creams and for some the purchase of bidet systems.

Often, I had read about pouchitis concerns with a j-pouch.

My advice to you is to keep on researching both the good and bad experiences from actual j-pouchers. As you know, there are some who get along very well and are extremely happy. There are some who wish they had never had it and wish to go back to the ostomy. Some do end up going back. Some of us with ostomies have no issues and are happy with our choice, if it was indeed a choice. Some just cannot accept life with an ostomy.

It is not “one size fits all.” Sometimes, it looks/sounds like it is all or nothing when it comes to j-pouch vs ostomy and there can be heated discussions with no middle ground. It is a personal choice and we all, most of us, respect the decisions of one another and wish each one well in their choices.

My “pro and con” list was the absolute very best tool I had in helping make my decision. It put it all out there in black and white and soon it became apparent to me which decision was right for me.

I honestly cannot tell you what it is like to have a wonderful life with a well functioning j-pouch.

I can honestly tell you what it is like to have a wonderful life with an ileostomy. I no longer have to know where every bathroom is and I rarely use one in public anymore. I empty my pouch 4-5 times per day, taking less than a minute, and rarely empty it over night. There is no longer any urgency and pain. I change my appliance every 5-7 days and I am good to go. I have 3 grandchildren and it hasn’t prevented me from enjoying life with them.

I pooped the old way for 57 years of my life and to be bluntly honest, I truly do not miss it. I know some would do anything to get back to the “natural” way, but I actually like my new normal. Sure, if I could go back to having all the parts I was born with in perfect working order, I would most certainly do it in a heartbeat. We all would. Best of luck to you and keep us posted :)

What are the differences between having surgery with a temp and permanent? So far we have only discussed the temporary assuming I wanted pouch or reconnect options. Is it just that with the permanent they remove and close my rectum? Or is there an actual difference in the Ostomy?

How long do some people go with a temp Ostomy before needing to make it permanent?

Yes, the actual stoma is different.

The loop ileostomy is the temporary one. It tends to be larger and flatter than an end ileostomy and has two holes: one for output and one for mucus (from the anus end). The output can be more watery too, since a loop ileostomy is placed higher up the small bowel than an end one - that's 'cos 1-2 feet have gone into the making of the j-pouch.

Edit: If you have step 1 of a 3-step operation, the first stoma will be an end one. In step 2, that will be converted to a loop one. Nssg said that already, I was just explaining the differences between the two types of stoma.