I had a temp ileo. My reversal was delayed due to a 'leak' at the colonic stump or my side-to-end anastomosis with resulting abscess and need for IV antibiotics. I waited another 4 months to heal and then do the reversal. Testing revealed a persistent "leak", another abscess formed and more IV antibiotics. I then wound up with surgery to repair the leak (my surgeon managed to do this noninvasively - he rocks!) and at the end of July, I underwent reversal. WIth this history in mind, I will answer your questions:
For some, Were you given the opportunity to avoid temp ileostomy altogether.?
I asked and this was highly discouraged. The reason that many surgeons to the ileostomy is to avoid the complication of an anastomic ring leak (which is worse than what I had) during the post-op period. I saw 2 different surgeons and both quoted a 20-25% leak rate. This is actually a serious complication which in the post-op period can lead to severe sepsis and death. In addition, diarrhea is a major side effect of the post-op chemo. Many consider it easier to have the ileo during this period and then to re-learn to use regular plumbing once the chemo-induced diarrhea is done.
If so did bowel movement over the unhealed issue give you additional problems? N/A
In hindsight would you have gone for a temp ileostomy had you known? N/A
For others, Post ileostomy reversal how did your bowel movement change?
I am still in the early phase. As others have noted, there is a certain unpredictability that can cause a lot of anxiety. I find that I am ok for 2, 3, 4 days and then I suddenly have to poop over several hours. This can be extremely inconvenient if it occurs at work or during a social event. I am still on a fairly limited diet as I am afraid to advance it since I'm still having issues on a restricted diet. I seem to swing from diarrhea to constipation (the latter often related to imodium that I take for the diarrhea). This actually sounds worse than it is...
For all, Did you suffer any form of incontinence?
Not even once! That was a surprise to me after reading many horror stories on the board. I will say that for the first month after reversal, I mostly stayed at home and frequently had to 'fly' to the bathroom, but I managed to make it every time
How do you cope with urgency?
How do you cope with stomach/ bowel pain?
I have not had any pain, except for discomfort related to gas on occasion.
Have you seen an improvement over time?
Things are definitely better now (2 1/2 months post-op) than they were in the beginning. My surgeon told me that it can take 6 to 18 months to get to a stable place, or what is called "the new normal". I am hoping things continue to improve.
Do any of you wish you had had a permanenet colostomy such has you life changed you feel chained to the loo?
Not yet. I was used to the ileostomy (I had it for 18 months!) but it had a major negative effect on my psyche. I didn't realize quite how unhappy I was with it until I didn't have it anymore. If I eat the wrong thing now, all that happens is that I get diarrhea or gas. I don't have to worry about getting a blockage or blowing out the appliance. And there is hope for returning to a normal diet someday - yay!
Is the LAR or any post adjuvant chemo that causes these changes or both?
I suspect that it is a combination. The LAR procedure can injure nerves in the area that affect the ability to sense stool. In addition, it can affect the ability of the muscles to respond. I am sure that the radiation contributes additional injury to the tissues and nerves.
Is your new "normal" manageable?
It is manageable so far. I have not tried anything overly challenging. I make sure that I can get to a bathroom along the road. I took my first road trip to visit relatives in NYC two weeks ago and all went well. I would like to get to the point that I feel that I can do something away from a bathroom (e.g. go for a hike or other such trip in which a bathroom might not be readily available), but I'm going to give myself a little longer to get to that point.
I thought I copied all of your questions, but I don't see the one where you asked whether my surgeon prepared me for the outcome after reversal. I was certainly prepared by him. He told me all of the details of everything (I asked him about it) on my very first visit to him (only 2 days after my diagnosis). He patiently explained LAR, temp ileo, reversal and the pros and cons of immediate reconnect vs. ileo. He also told me what to expect after reversal, and he definitely did not make it sound any easier than it has been. I guess that is why I like my surgeon - I may not always like the answers but he is a straight shooter and tells it like it is.
Hope this helps!