Lisa, hi I am 6 months with LARS following a year with an ileostomy after Stage 3B rectal cancer and have lost all my rectum and had radiotherapy. It is disheartening to read that your LARS is worsening, and I really feel for you. I have read about a lot of people who have coped with severe LARS in a variety of ways not mentioned here, and I am surprised that your doctors haven't gone through these. I think that, like me, there is always going to be that 'final solution' option of colostomy, and that is something I would have to accept and embrace as many other people have. But if it were me, there are many things I would try first. I can run through an outline in case it is a useful starting point for your research, which I encourage you to do. I find that I cope with really bad days by going 'white and light' on my diet and eating a lot of yogurt—so lots of white bread, white rice, cooked vegetables such as squash and courgettes, peeled fruit, no berries, no seeds, i.e., the opposite of gluten and dairy-free! So I do wonder if that might be doing the opposite of helping... Perhaps. I hate this diet because I love eating high fiber, but if I stick with white and light, I can coax my system back to the place where I am eating high fiber again—with a couple of exceptions such as raisins, which do seem to set off diarrhea at the moment. There are many other things I have tried which I can't say whether they help, but I would say that the probiotic S. Boulardii really helps with diarrhea. I also read about two people who cope with a regular regimen of prune juice and large fiber—one who eats a big bowl of porridge then drinks a glass of prune juice and another who has psyllium husk in the morning, psyllium husk in the evening, and a large glass of prune juice at lunchtime, which clears them out for a day. Less anecdotally, there are studies from the UK, US, and Scandinavia which introduce anal irrigation as a daily strategy to cope with LARS. I have read about people who happily spend 30 minutes a day sorting out this bit of hassle to be clear for the other 23.5 hours. I would consider that if my LARS was ever permanently agonizing. (Mine fluctuates between about 4 different patterns, each with their own associated symptoms and coping protocols, which I believe is mainly the radiotherapy rather than the anastomosis or lack of rectum). If control is the issue, then there is a mild electric pulse therapy that can be administered, which has been shown to help.
There is a lot of info online if you could search on YouTube and go through it. There are also websites specifically for LARS—one is Happy Bums or something—and there are other support forums, so please go on a LARS-specific forum and website because while this one is wonderful for stomas, there are better ones for LARS info and support. My doctors do always dismiss any suggestions that diet is at all related to my bowel changing to one of the painful patterns I experience, and they tell me to just eat whatever I want, to which I suggest that I eat my favorite papaya salad with raw chilies, and they say, "Oh, maybe not that." Well, exactly—we all know that there are some things that cause a certain effect, such as spice or raisins in my case. I sometimes use fasting to settle down after a really painful few bowel movements—just a day or half a day seems to help, and then I move on to bone broth, yogurt, and white and light. But clearly, be careful with fasting if you are not used to it, but basically, it is the same as going for a colonoscopy, but I reverse! I use Imodium to create a backup sometimes when my anus needs a break because it has become inflamed, although I have to then cope with the knock-on effect, which I alleviate with prune juice about 36 hours later. I'm also trying slippery elm, omega-3, and aloe vera, but I can't say there is any clear case of saying whether they are beneficial or not. I also minimize my caffeine to 1 tea a day, eat a big bowl of porridge daily, drink 2+ liters of water, and doing high-intensity physical activity 5 times a week really helps when I'm up to it, and... I am really careful not to even think of pushing. I do pelvic floor exercises 10 times a day and hold my bum in if I blow my nose or sneeze because I am convinced that there is a physical link to one of the patterns I experience. Good luck. I'm sure you'd have a full life with a stoma (I went on a watersports activity holiday with mine and have 2 small children), but there are many things you can try if you want to and if you do so safely. Please take care and be healthy! I hope something in this is helpful to you, and I apologize if I have told you things you already know and are just looking for reassurance. I hope you live well, whatever you decide or end up with.
