Life After Loop Ileostomy Reversal: What to Expect?

Any advice? I have a loop ileostomy and had an ultra-low anterior resection, and I'm wondering what life will be like after reversal.

Has your surgeon said how much rectum they were able to retain?

Hi Sean,

Were they able to preserve the sphincter, or was it removed with the cancer? If it's there... you should be golden! If not, all bets are off. Not sure what else to say... just make sure you ask your surgeon the same question!

;O)

Thanks very much for your reply. I will ask the surgeon on Monday. I'm afraid of having very little control, which would mean the quality of life wouldn't be great. I'm wondering if I could opt for a colostomy instead of a reversal. That would leave me with some control. Anyway, thanks for the helpful response. Kind regards, Sean.

Hi. I am new to this group, so I hope I am not overstepping my boundaries. It's very possible that you have a decision to make that many others do not get. With that said, it's not an easy one. I also was told I may have that ability. My surgeon said he would be able to remove my cancer tumor without taking any sphincter muscle. He also told me that my tumor was so close that I should consider a permanent colostomy. He was adamant that I would suffer from LARS and use the bathroom more than I would find comfortable.

I had an unrelated intestinal operation 25 years ago. That surgery did not require a bag as it removed some of my colon and small intestines. It did, however, leave me with the inability to absorb the bile the digestive system creates. I take medication for that and have forever. So I have had some small taste of LARS. The day of the surgery, I told my surgeon that my goal was to have all cancer removed, and if that means a bag, so be it. Well, at the end of the day, I ended up with a permanent colostomy. I had two tumors, one behind the other. My surgeon said I would have lost muscle. Funny that I still need to take my medication to absorb bile, or I have all liquid output.

If I can say one more thing, a permanent colostomy is just that, permanent! No going back, no changing it. What if they find a new cure or medication for your issue? With a reversible ileostomy, you have options, including a future operation to reverse it, and or to make it permanent then, or perhaps both.

Hi there, thanks. I'm new to this forum also, and thanks for your time and information. Much appreciated.

I only have 4 cm left of my rectum and the surgeon has said to me that although it would be possible, the chances are I would be left with a degree of incontinence, which is something I wasn't willing to live with.

Thanks, Sally,

Hi there, yes, today he told me I had 2 cm of rectum left. Any advice would be appreciated. Should I keep my ileostomy, or should I go for a reversal?

Oh no, I'm not telling you which option you should choose 😃. What did your surgeon say today? Are you sure he said you have 2 cm of rectum left?

Hi there, yes, he said 1 to 2 cm is all that's remaining, and it's my decision whether to go for reversal or stay as I am.

Hi again, Sean. Did your doctor say with confidence that 1-2 cm of rectum would make a successful reversal for you? To put it in perspective, I have 8 inches, so 20.32 cm, of rectum. But that's it, no abdominal colon… 8 inches of waste storage. For me, that works, but I don't think you can ignore the critical part the length of rectum left plays in a successful reversal.

Thanks, I'm really confused, not with you, but with everything really. I had an ultra-low anterior resection, and they removed 315mm of my rectum and colon (even though I know the rectum is on average 150mm, so they must have taken some of my colon also). I had a low cancer tumor, stage 2 to stage 3. I had 6 months of chemo and finished that in January this year. Now it's time for me to decide if I want a reversal. He told me that my exterior sphincter muscles are good and I could learn to use them when controlling my going to the bathroom. I'm not so sure that's really going to work for me, but I don't know. However, he definitely told me I had 1 to 2 cm of rectum left. I have to decide. He told me all the usual stuff, getting used to my new normal, etc., and if I couldn't cope after reversal, he would put my ileostomy back. But he wouldn't put a colostomy on me because there's too much scar tissue in that area. It's not an easy decision. I simply don't know what to do.

Hi, I'm in a very similar position and also confused! I am actually only 3 weeks post loop ileostomy but had an ultra-low anterior resection. I'm getting on pretty well with my bag and after reading the horrors of LARS (especially as I've also had radiotherapy) and speaking to one stoma nurse, I had pretty much decided to not do the reversal, only to be told yesterday by the more experienced stoma nurse that I have to do the reversal or else continuing ‘bowel surveillance' becomes too difficult in the future as the mucus along the unused bowel becomes like snow so they cannot check for new tumors. I am now really gutted and scared but also wondered if anyone has been told this too as I can't see much online about it at all? Just feels like another thing I didn't know.

Hi there, thanks for your reply. I think we're pretty similar. I am reading the horror story online also and was told the same as you concerning the bowel surveillance, but I'm also worried about quality of life (constantly needing to use the bathroom, having accidents, etc.). The only good thing is that the surgeon has said to me that if I have too many problems with reversal, he could put the ileostomy back, which takes me back to square one. I think I would have rather had a colostomy, but it's not going to happen now, he told me. Any advice I could give you with your new ileostomy is to watch you don't get dehydrated. I take sips of Dioralyte between meals. Remember, this is very important. I also take 2 loperamide 30 to 60 minutes before all meals, and I eat my last small meal at 6 or 7 pm because I don't want to be up all night emptying my ileostomy. Water won't keep us hydrated; we need to take Dioralyte to replace electrolytes. These are just my experiences since surgery. Please keep in touch, and I'll keep in touch. If you don't want to, I'll respect that. Anyway, good luck with your ileostomy and future decisions. Kind regards, Sean.