Rosemary, thanks for answering regarding the ct scan. you're right, i do have motility issues, but with the ileo it is so easier to control.
Leslie, so glad to hear you're feeling better hon :) i hope you keep feeling good and don't need to ask for that ct scan, but if you keep getting those obstructions so often, pls don't neglect it and ask for that test, it's very important they find the reason for your constant obstructions.
Allie, i'm so sorry to hear you're having such a hard time sweetie. the way you describe your non functioning rectum, i believe an ileo will be a wonderful solution for you. having an ileostomy has improved things greatly for me, i love it! i don't mind taking care of it, it's easy, MUCH easier than dealing with a nonfunctional rectum and doesn't take so much of my time like it did when i was anastomosised. before the ileo i was in pain and uncomfortable most of the time, most foods bothered me and i could get obstucted very easily, so i also started to eat less and less and mostly soft-liquid diet. with the ileo i feel so much better, things are flowing so much better and i was able to add more foods to my diet. it seems i do have a bit slow small intestine, but it's easily controled now with simple things such as pear juice in the morning (fresh squized), pickles + the pickles juice and eggplant salad with mayo (for some reason the one w/o the mayo doesn't work as good as the one with mayo) - all of these foods give me D and flushe everything out. but if i don't combine these foods in my meals during the day, i will hardly have any output.
for the first time after 17 yrs i can finally say i feel good. i always have the fear that things will slow down with time, can't shake off that fear, but this time it looks so much more promising that it will stay stable and wont worsen again, cause it seems the main reason for my motility issues after the colectomy was my nonfunctional rectum, and now that it's out of the way, i shouldn't have further problems.
i have a loop ileo. i also wish i could have my rectum removed and annus shut and have an end ileo, i hate it that i still have to do enemas, even tho it's only once a mon. but they don't do that for ppl like us. removing the rectum is a major surgery and long recovery and they will do it only if the rectum is really sick and put your life in danger, but for us it's just nonfunctional, so there's no way any dr will agree to remove it and they usually do a loop ileo. i hate it that i still have pressure in my rectum. i don't feel it all the time, only in the morning after breakfast. today i had a really tiny bit of gas coming out of my rectum for the first time since the ileo op 2 mons ago.. i guess it means it's time for another enema.
but all in all, having an ileostomy has really given me my life back and the only downside in this is that i still have to do enemas once a mon, i hate it, but it's really nothing compared to the way i was before the ileo op. i guess we can't have it perfect and this is the best we can get.
when you prepare yourself emotionally for this and going for it willingly, like i did, with a full understanding of what it means to have an ostomy, and knowing i in no way could go on the way i was with constant pain and obstructions, then not only that having an ileo doesn't seem so bad, but it seems heaven compared to before.
and one more thing, don't worry, creating a loop ileo is not a major surgery, it's a very very small procedure - my ileo op took only 20 min!!!!! i hardly had any pain after this surgery - needed pain meds only for the first 1-2 days post op. the hard part was the obstructions. at the first 2 weeks post the ileo op you will have obstructions, cause it takes time for your system to get used to the new location of it's outlet, but after 2 weeks it all stopped and i havn't had obstructions ever since.
i hope this helps, and i wish you all the best with whatever you decide to do.