Hi Lori, do you have a loop ileostomy rather than an end to allow you to go back to a j pouch in the future? Do you still have an intact anus? Perhaps your anal canal was left to allow for healing of fistulas. The loop ileos are generally regarded as a huge pain with high output, SBOs and are prone to skin issues given their construction. I spent most of the 6 months I had with my loop in and out of the hospital. The end ileo was way easier. I hope it is this time around for me! I wish you the best. You may feel a whole lot better with the end ileo. Good luck.
Hi!
Thanks for the input! As much research as I have done, I don’t know much about loop ileo vs end ileos except for how each is constructed. I had my J pouch diverted in 2016 b/c I was so sick and I wasn’t mentally ready to scrap the J pouch at that point so that is why I have the loop ileo. The plan was to reconstruct the loop to an end ileo when my J pouch was removed/butt closed in 2019, but the surgeon thought that my problems would get better once my J pouch was removed so he did not change the ileo. Problems as in lots of discharge from the end of the ileo that went to the J pouch. Here I am in 2024 and I still have a lot of discharge from that “blind” end of the ileo despite having only an inch of intestine left after the ileo. I hope that makes sense. I really wish I would have been more adamant about changing the loop to an end ileo in 2019. It is hard to go back in for surgery when you are feeling better and this ileo is gorgeous yet still dysfunctional in its own way. My butt is all sewn up and I think I don’t have enough intestine left to construct another j so that is definitely out of the question! Thanks again for your input!!
Hey! I have had both: temporary and end ileo. In my personal experience, the temp has more leaks and more dehydration involved. With the end ileo its less leaks and I am more hydrated than ever before.
If you have any questions, please pm anytime
An end ileo is so much better than a loop.
Loops are meant to be temporary.
I've had both. The loop was a nightmare. My end. Most times I forget about it.
It doesn't burn. Nothing like the loop. That leaked and burnt everyday.
I go seven days without changing my end ileo.
I consider. As I have said many times here and people are probably sick of hearing it.
I'm very fortunate mine works so well. No skin issues. It just works.
Not everyone has the same outcome. And I certainly didn't expect it. But I'm happy with my decision now.
Going in. Was scary. I'll admit that much. But it all worked out for the best.
Richard.
I think this might be an older post but thought I’d weigh in as I just had a pouch excision and end ileo surgery last year (spring 2023). I had my j pouch for 18 years but was very young when I got it, so I’m only in my 40’s now with lots of decades to go with this new end ileostomy. I have zero regrets switching over given how my pouch malfunctioned and the horrid problems it caused, and I was one who said “I’ll never ever get that bag again”. I honestly would have given my right leg to make it all stop. My j pouch was great up until that point.
The surgery, I won’t lie, it’s a hard one. I’d say equal too or harder than the colectomy step but everyone is different. i was in hospital for 5 weeks and home another 2-3 months but even then I didn’t feel strong or able for a while. Sitting is the worst part as if the pouch comes out, they do sew you up! I was told not to leave the pouch in due to cancer risk but that could depend on the age you get this surgery. It seemed that was a risk over a long period, and because it wasn’t getting used, one wouldn’t really know they had cancer there until it was too late. One consideration is if the pouch is left in, I think? you have to have a loop ileo not an end, and the loops are a lot harder to deal with. Plus you have less usable bowel which can cause hydration/nutrition issues.
One year out I’d say my largest issue is hydration, electrolytes and nutrients. It was hard without a colon,but this has been a whole new level of hard. The tipping point from hydrated to sick is much finer than with my j pouch. I also have a lot of muscle and joint issues because of this, like my muscles are always tight or sore etc from going from functional to not enough magnesium or water etc. I’m hoping this will improve over time just as our j pouches took time to adapt.
i hope this was helpful for anyone still searching these topics 
5 weeks?!? Did you have complications? Cleveland clinic kicked me out pretty quickly. I was in 4 or 5 days. I was home for almost a week and ended up in my local hospital with the dreaded NG tube. I have had many NG tubes post op-not sure if that happens to others or not. I spent longer in my local hospital with a bowel obstruction than I did after my surgery. Crazy! That may have been a blessing in disguise because I just sat/laid around for a week. A few weeks after that I was sitting on a hard chair painting some pottery. It was so exciting to be sitting on a hard surface with no pain! I went in thinking I would be sitting on pillows forever and was sitting on hard surfaces in no time!! I am so glad you are doing well now duck11. Our stories sound somewhat similar. I got my J pouch when I was 18 and had my temporary ileo first formed in 2016 when I was 42. I loved that j pouch so much but when things started falling apart, things got a lot worse in no time. Thanks for the ileo input all!! Stay healthy!!
@LORI726 posted:5 weeks?!? Did you have complications? Cleveland clinic kicked me out pretty quickly. I was in 4 or 5 days. I was home for almost a week and ended up in my local hospital with the dreaded NG tube. I have had many NG tubes post op-not sure if that happens to others or not. I spent longer in my local hospital with a bowel obstruction than I did after my surgery. Crazy! That may have been a blessing in disguise because I just sat/laid around for a week. A few weeks after that I was sitting on a hard chair painting some pottery. It was so exciting to be sitting on a hard surface with no pain! I went in thinking I would be sitting on pillows forever and was sitting on hard surfaces in no time!! I am so glad you are doing well now duck11. Our stories sound somewhat similar. I got my J pouch when I was 18 and had my temporary ileo first formed in 2016 when I was 42. I loved that j pouch so much but when things started falling apart, things got a lot worse in no time. Thanks for the ileo input all!! Stay healthy!!
Do you have a end ileostomy now?
@LORI726 posted:5 weeks?!? Did you have complications? Cleveland clinic kicked me out pretty quickly. I was in 4 or 5 days. I was home for almost a week and ended up in my local hospital with the dreaded NG tube. I have had many NG tubes post op-not sure if that happens to others or not. I spent longer in my local hospital with a bowel obstruction than I did after my surgery. Crazy! That may have been a blessing in disguise because I just sat/laid around for a week. A few weeks after that I was sitting on a hard chair painting some pottery. It was so exciting to be sitting on a hard surface with no pain! I went in thinking I would be sitting on pillows forever and was sitting on hard surfaces in no time!! I am so glad you are doing well now duck11. Our stories sound somewhat similar. I got my J pouch when I was 18 and had my temporary ileo first formed in 2016 when I was 42. I loved that j pouch so much but when things started falling apart, things got a lot worse in no time. Thanks for the ileo input all!! Stay healthy!!
No major complications, but I did have an endless ileus, my guts took almost 4 weeks to wake up, but I think my surgeon, whom is nothing short of a hero to me, kept me in to save my mental health given where I came from going into that surgery. I had over 45 bowel obstructions in 2-3 years and so so so many ER visits and hospitalizations, dismissals and even hostility from other health professionals who weren't skilled or knowledgeable enough to diagnose my rare problem, accusations of being a drug seeker since they couldn't "see" my problem and I was at the ER so much, all at the same time I became a mom and Covid started. I developed PTSD from medical trauma and given the rebound that often happens back to the ER (like you had, sorry to hear that!) for these surgeries, she said I could stay until I felt "comfortable enough to go home". I don't think I could have mentally made it through another ER stint after all I went through, so when I was going home, I wanted to make sure I'd be staying there! Every time I'd try to eat, the pain was awful, and I knew if I went home unable to eat with tolerable pain, I'd just bounce back. So I stayed long enough to be safe and she supported me in that.
That makes a lot of sense. I might have stayed there for a year if I had that many bowel obstructions! So painful. Glad things are improved now! That is no way to live.