ozziej wrote:Hi Steve,
Your question is very valid. It's a tough one. I can only give my opinion based on my personal experience. I had a ULAR at age 56, losing all of my rectum and sigmoid colon. I was reversed 12 weeks after the resection. I now have major LARS. It's manageable but, like you, so was my temporary ileostomy. My understanding is that a permanent colostomy is generally easier to manage than an ileostomy, so it's likely that a permanent colostomy would have given me a better quality of life.
A lot depends on the lifestyle you lead. Working, socializing and travelling are all very challenging with LARS. Having said that, a permanent colostomy is not without its challenges. The most effective treatment for LARS seems to be daily enemas. Once a routine has been established, these are no more cumbersome than managing a bag.
Age really isn't a determining factor. What is really important is how low was your anastomosis? If you have at least some remaining rectum then your chances of developing LARS are reduced. A straight coloanal connect like me greatly increases the chances of LARS.
It is usually possible to reverse the reversal. Indeed, I know of a few people who were reversed and then made the decision to move to a permanent colostomy. So you could always try reversal and then, if quality of life is not acceptable, opt for a bag.
Wishing you all the best whichever path you choose.
NHMike wrote:Hello Steve,
Mike,
Did your surgeon say no to enemas because it was too soon after reversal when you asked? I know there needs to be a healing period. I was almost a year and a half after reversal when I began doing them. I am on that LARS page and there are some that were given the okay or surgeon even suggested enemas early in their recovery process. I have been doing them for 2 years now and don't know how I would be at this point if I was still dealing with alot LARS issues.
I'm almost 60 and had a reversal at the end of July last year. It was quite horrible the first couple of weeks but part of that was that I didn't know what to expect. The surgeon told me at the first post-op that the first week is horrible and that it can take a year to get to someplace normal. Things have been on an improving trajectory but there are still a lot of issues that I have. The surgeon offered a permanent colostomy if things were too difficult. There are times when I thought that the ileostomy was easier to manage than LARS but the downside is that you require regular supplies and I found that the ileostomy limited some of my activities. I would really like things to work out with the reversal but I can't say at this time that they will.
There are methods to improve outcomes such as the enemas that have been mentioned but my surgeon said no when I asked about them.
Furthermore, I have scar tissue around the reversal site and they can cause or contribute to small bowel obstructions which are extremely painful.
There is a facebook group dedicated to LARS and you'll get a lot of tips on how people deal with it. I think that all of the people there do have the option for a permanent colostomy and chose to deal with LARS instead means that a lot of people prefer dealing with LARS than a permanent colostomy. I used to be on that Facebook group but got kicked off of Facebook for using a privacy browser which blocked their ability to do tracking and apparently they don't like that.
Good luck on your decision - if you have questions on what happens after reversal and when, ask away as there are lots of people here that have had them. There are folks here with permanent colostomies too and a lot of us have probably had ileostomies.
susie0915 wrote:NHMike wrote:Hello Steve,
Mike,
Did your surgeon say no to enemas because it was too soon after reversal when you asked? I know there needs to be a healing period. I was almost a year and a half after reversal when I began doing them. I am on that LARS page and there are some that were given the okay or surgeon even suggested enemas early in their recovery process. I have been doing them for 2 years now and don't know how I would be at this point if I was still dealing with alot LARS issues.
I'm almost 60 and had a reversal at the end of July last year. It was quite horrible the first couple of weeks but part of that was that I didn't know what to expect. The surgeon told me at the first post-op that the first week is horrible and that it can take a year to get to someplace normal. Things have been on an improving trajectory but there are still a lot of issues that I have. The surgeon offered a permanent colostomy if things were too difficult. There are times when I thought that the ileostomy was easier to manage than LARS but the downside is that you require regular supplies and I found that the ileostomy limited some of my activities. I would really like things to work out with the reversal but I can't say at this time that they will.
There are methods to improve outcomes such as the enemas that have been mentioned but my surgeon said no when I asked about them.
Furthermore, I have scar tissue around the reversal site and they can cause or contribute to small bowel obstructions which are extremely painful.
There is a facebook group dedicated to LARS and you'll get a lot of tips on how people deal with it. I think that all of the people there do have the option for a permanent colostomy and chose to deal with LARS instead means that a lot of people prefer dealing with LARS than a permanent colostomy. I used to be on that Facebook group but got kicked off of Facebook for using a privacy browser which blocked their ability to do tracking and apparently they don't like that.
Good luck on your decision - if you have questions on what happens after reversal and when, ask away as there are lots of people here that have had them. There are folks here with permanent colostomies too and a lot of us have probably had ileostomies.
AppleTree wrote:I have no bowel and the DRs had to cut into my sphincter muscles to get clear margins. Due to an infection, I had my reversal very soon. I do remember the 1st 2 weeks of very painful clustering, but they gave me strong pain killer and told me to try to time things around that. But it hurt like crazy. But, as promised, my body adjusted.
When I feel the urge to go, I move to the bathroom, but do try to hold it as long as possible. Trying to train those muscles to give me a bit of extra time when I am out in public. My issue now is slight fecal incontinence on some days, fine others, and explosive runs others! So, I do watch what I eat.
I get a Sandostatin shot every month and take 6 lomotol a day. I have gone from 150 to 103 and I am 5'8".
The surgeons feel the surgery was a success. But, unless I can gain some weight, I question that! But. I am functioning!
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