Hi there. I've been lurking here for a few months and have found information here to be invaluable. Thank you so much for this resource and to all of the contributors.
Back in January of this year, I had a perforated colon, most likely as a result of a diverticulosis episode. Long story short, I had an emergency colectomy. There is still a tiny smidge of my sigmoid colon remaining, and my rectum is intact. It was emergency life-saving surgery, and I'm thankful to be here. I have an end ileostomy. I have adapted to life as best I can with the ileostomy and found products and a routine that seem to work for me. I know for some having an ileostomy is a wonderful life improvement - I have so much respect and admiration. For me, the whole scenario was unexpected, frightening, and is still pretty surreal. If I had/have to have the ileostomy for the rest of my life, I'd/I'll certainly adapt, stay strong, and seek help when needed. That being said, at this point, I am a candidate for a reversal.
I am discussing a reversal with a couple of colorectal surgeons in my area - both with 2 decades of experience. As my rectum is still there, and assuming there are no issues seen with my rectum:
- Surgeon #1 would perform an ileorectal anastomosis (IRA) - that is where my small intestine gets hooked straight up to my rectum
- Surgeon #2 would perform a similar procedure. HOWEVER, he would add a small j-pouch with the end of my small intestine, affixed to the top of my rectum - so as to assist in holding stool - this procedure is called an ileal pouch rectal anastomosis (IPRA). I can't seem to find much information on the procedure with the pouch on top of the rectum (IPRA) - just these two links:
https://pubmed.ncbi.nlm.nih.gov/19318001/
https://journals.lww.com/journalacs/citation/2005/09001/long_term_functional_and_quality_of_life__qol_.27.aspx
So I would like to humbly ask the following questions:
1. Are there any reversed ostomates with a straight IRA in the group (small intestine hooked up to rectum)? And if so, any thoughts on the experience; and updates on where you are now with bowel movements and quality of life would be greatly appreciated!
2. Has anyone heard of and/or had the IPRA procedure?
FWIW, I am leaning towards the standard straight IRA, as it seems there would be fewer features that could eventually fail - at least that's what my gut says (pun intended).
Thank you so much!
Best,
Colin
Hi, I have an ileorectal anastomosis. That connection was formed during my colectomy and I had a loop ileostomy while the new connection healed. Day before reversal surgery they did a test to make sure the new connection did not have any leaks. How many inches of rectum you have will make a difference in the success of the surgery. My surgeon at Cleveland Clinic said that to do a J-pouch for me would be malpractice. Because I don't have a J-pouch I will never have issues like pouchitis. The tissue of the rectum is different than the tissue of the small intestine.
I'm curious why the one surgeon wants to make a pouch if your rectum is ok. I don't know if you feel like this is necessary but you could have a virtual consult with a surgeon at Cleveland Clinic to get a 2nd or 3rd opinion in your case (they are the best when it comes to these type of surgeries, they outrank Mayo in this particular area of medicine/surgery). I did pelvic floor therapy in between surgeries and after the reversal which I would recommend to anyone having these surgeries. I'm a woman and have had 2 babies so my anatomy comes with different challenges than a guy. I've done really well with the reversal but I made sure I could go back to an ileostomy if ever needed. So I keep in the back of my mind it will be ok if I ever have issues with my IRA and need to have an end ileostomy formed. A former surgeon on here helped me understand why the rectum can do what a J-pouch cannot. Happy to answer any questions I can. I haven't had any of the issues a lot of people have with the reversals. I really think in part at least the success has a lot to do with my surgeon and also being proactive about pelvic floor therapy.
I did have complications after the surgery (ileus). I've never had incontinence issues like a decent amount of people seem to have (again pelvic floor therapy- cannot stress that one enough and I was walking at least a mile a day to prepare my body for the reversal). Some people can know when they eat in x amount of time they will need to use the bathroom. I haven't been able to time mine like that. I am flying more when traveling vs road trips because on a plane there is a bathroom whereas with road trips sometimes rest areas are few and far between. I don't eat much when I'm traveling (driving) and stick more to water, smoothies, protein shakes (I'm tired of protein shakes at the moment). I'm only 9 months out from the reversal but I was doing handstands/backflips/and somersaults in the water with my kids this week.
-Jodie
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Thank you Jodie! This is very insightful. I'm happy to hear about your progress and good luck thus far.
Oyyy...an ileus - that happened to me when I had my emergency colectomy + end ileostomy. I still have PTSD flashbacks of the NG tube...ugh. I'm praying that doesn't happen again.
As for the pouch on top of the rectum, from what I understand this is a known procedure, but it just seems to me as though the addition of the pouch is more complex, and may not provide that much (if any) added benefit.
I did seek out a third opinion from a colorectal surgeon who is a friend of a friend - who confirmed there's not really much if any added benefit with the addition of the pouch above the rectum. Thank you for the Cleveland Clinic suggestion - I may reach out to them for a fourth opinion.
I will certainly start in on the pelvic floor suggestion.
Thank you sooooo much. It's great to hear from an actual person who has been through the procedure.
Follow our simple and practical guidelines for eating healthy with an ostomy.
Without inflammatory bowel disease, an ileo-rectosigmoid anastomosis should work fine without creating a reservoir. Commonly, an end-to-side anastomosis is done. Stools should be more liquid and frequent. J-pouches are not usually done for your medical situation and are associated with a lot of additional problems.
Colin, I don't know if visuals help you at all and/or if you've seen this before while discussing options with the different surgeons. I'm a visual learner so this helped me understand a little better how things would look/work. John (gentlejohn) who responded on this post was very helpful to me in understanding my new internal connection as well.
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How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister
Thank you Jodie and John! Yes - I met with my preferred surgeon on Friday and he explained this exact end-to-side connection! The other surgeon very clearly called this 'geometry' a 'j-pouch' - it's even in the written/assessment pre-op plan PDF I have!: "I described performing a J-pouch." I think it was just a terminology mix-up on his end, but enough to not make me feel 100% confident with that particular surgeon.
Thanks again!