A month after takedown/ reversal-a few questions

[Gravelyguy]

High Everyone,

So I passed the one month post takedown mark and all is going pretty ok most days. But I have a few questions. A little background, I had a very low rectal tumor. So low, in fact, that the 2 local surgeons that saw me early on both said I would have a permanent colostomy which I was ok with as long as it helped me beat this and be able to spend more time with my wife and kids. As it turned out 2 small metastasis were found in my liver which gave me a trip to Mayo in Rochester. After meeting with the liver surgeon I was referred to Dr. Larson a colorectal surgeon who, as the title implies, was able to save me from the colostomy. So I really have no rectum left.

Anyway, most days, if I behave myself, I have a fairly decent routine going. I wake up and usually have a fairly “normal” BM. I then go about my day with a few scattered very small bm’s until evening when it is fractured city, many trips to the bathroom over a couple of hours. It is this time that I tend to have an accident or two which if I didn’t have a sense of humor a could be a real downer. Anyway I am glad to be In the spot I am in and wish all could be at NED land. My questions are is this fairly normal and what have people done to get the fragmentation down?

I was given the eat whatever you want but in smaller quantities diet. I have found a few things that seem to trigger it but I don’t really know how long it takes to get through you so I don’t really know.

[NHMike]

Your post is of interest to me as my reversal is scheduled for next month.

I have read accounts of many people and it's easy for some people from very early and quite difficult for others. So it isn't necessarily easy to tell how you will do based on what others do because there seems to be so much variation in outcomes. I suspect that I will get some training in the hospital after surgery. I do expect that I will try to manage how things go by controlling input.

[scohow66]

Hi - I too had a very low T2N0M0 cancer in rectum. Had LAR and temp ileo with clear margins and no lymph involvement. Been 15 post LAR and about 8 months from takedown of ileo. I have definitely suffered from LARS probably in a major way if looking at the definitions. 13-20 BM's a day, clustering, fragmentation, etc. It has not stopped me from travel and doing most things. I tried FODMAP diet and other things, but no real triggers for me so I eat and drink what I want, but avoid nuts and carbonation...the former caused a minor bowel blockage so just avoid them now. I also was taking 2 servings of phsillim husk fiber (get on amazon if you don't want to use Metamucil, etc) and Imodium daily to try and control things, but with varied success. I did reach a point over the last week where I had enough so am now trying a daily enema, which has really made a difference. I do it in the morning and it allows me to go the full day without any movements, etc. Now and then I have a little bit here and there, but very tolerable and the procedure itself it not a big deal. My surgeon supports it and recommended it as a next step to deal with LARS and given I am at 8-12 months post reversal. So for now it's fiber once a day, enema once a day, no more drugs and I can eat/drink what I want and feel confident I won't have any issues. Best of luck!

[susie0915]

I also began daily enemas about 15 months after reversal. I didn't have loose stools or accidents, but did have many small movements per day. I tried fiber, Imodium, lomotil, cholestyramine, fodmap diet, and also did pelvic floor physical therapy. The daily enemas have given me my life back. It takes me about 30 minutes in the morning and I'm good until the next morning when I do again. It has helped me gain some weight back as I am not afraid to eat, stop taking any meds to slow things down, and my bottom is never sore, not to mention the positive mental attitude. You may have to wait until enemas are an option, as you have to be sure you're healed, and things may change quite a bit in the next few months. Many do well with fiber and diet changes. Not all doctors are on board with enemas, but it is becoming a more accepted solution for LARS. It was recommended to me by a GI at the bowel control clinic at the University of Michigan. Has made my life normal again.

[ocstacy]

I did reach a point over the last week where I had enough so am now trying a daily enema, which has really made a difference. I do it in the morning and it allows me to go the full day without any movements, etc. Now and then I have a little bit here and there, but very tolerable and the procedure itself it not a big deal. My surgeon supports it and recommended it as a next step to deal with LARS and given I am at 8-12 months post reversal. So for now it's fiber once a day, enema once a day, no more drugs and I can eat/drink what I want and feel confident I won't have any issues. Best of luck!

Thanks for sharing. My mom will be discharged tomorrow from hospital. She had her reversal on 07/24 and was exp. diarrea, but now it's getting better. I know she will have a long recovery. I found interesting about the daily enema. Does it help so you can travel without going so much? One thing, I noticed now that my mom always has to go to the bathroom and she is already getting tired of it. I know it's a lot getting used to. Best of luck

[susie0915]

I did reach a point over the last week where I had enough so am now trying a daily enema, which has really made a difference. I do it in the morning and it allows me to go the full day without any movements, etc. Now and then I have a little bit here and there, but very tolerable and the procedure itself it not a big deal. My surgeon supports it and recommended it as a next step to deal with LARS and given I am at 8-12 months post reversal. So for now it's fiber once a day, enema once a day, no more drugs and I can eat/drink what I want and feel confident I won't have any issues. Best of luck!

Thanks for sharing. My mom will be discharged tomorrow from hospital. She had her reversal on 07/24 and was exp. diarrea, but now it's getting better. I know she will have a long recovery. I found interesting about the daily enema. Does it help so you can travel without going so much? One thing, I noticed now that my mom always has to go to the bathroom and she is already getting tired of it. I know it's a lot getting used to. Best of luck

The daily enema has given me the freedom to do whatever I want and need to do everyday. It takes about 30 minutes in the morning, eliminates the stool in the lower bowel, and I don't go again until the next morning when I go again. I didn't begin doing then until about 16 months after reversal. I tried many things to stop the unpredictable bowel movements and frequency. It was suggested to me by a GI at the University of Michigan bowel control clinic. You mom will probably have to wait before she could begin using enemas. She may do fine in time with just adjustments in diet, fiber intake and using Imodium or lomotil which slows the intestines. I wish your mother well.