Is 5 months post ileostomy too soon for a reversal?

Hi all. Looking for feedback from anyone who has had a reversal or is being considered for one. I am 3-1/2 months post ileostomy and my surgeon has said I am a candidate for a reversal. He wants to scope me next month to make sure everything "looks good and healed" and if it does he plans to do a reversal in March which will put me at 5 months post ileostomy. Originally he told me six months minimum so this caught me off guard. I'm nervous because I don't want to rush into something and regret it. I can't deny life has been easier with the bag but I feel like I ought to at least give the reversal a try. Would love to get some feedback especially from those who have had the reversal to see how they are doing. Thanks!

Hello tudibird. Thanks for your post. I thought I would reply even though I have not been in the 'enviable' position that you now find yourself. Many people who have reversals do not return to this site - which is a pity because they could be very useful contributers to questions such as these.  (The absence of such people might be an indication that everything has gone so well for them that they have got back to their 'normal' lives and no longer need the sort of support that this type of site provides.)  My own thoughts on the subject would be that if you asked for time to consider the proposition and adjust psychologically to prospect of reversal, you could extend the period to over six months quite easily.  Your surgeon should and would understand your need for careful consideration of such matters and hopefully would furnish you with what he/she considers as the advantages and disadvantages of opting one way or the other.   I find that exploring the medical research on such subjects is quite enlightening as they tend  to publish aspects of surgical procedures and possible problems that have arisen in previous cases.

Anyway, best of luck with whatever you choose to do.

Best wishes Bill

Thank you for your input, Bill. I think I will do a little research with the help of my husband (who happens to be a retired nurse). I agree with you that it's a shame more people don't remain on this site after their reversal. I will try to change that.

Hi Tudi. In 2004, at the age of 60, I had a reversal 5 months after my original surgery, which was required because of precancerous colon cells. My J-pouch healed very nicely, and I was back to my old self within 2 weeks. On the whole, I was very satisfied with the operation. I was always very active, traveled a lot, and ate and drank anything. I had great sphincter control, a good body image, plenty of stamina, and an overall sense of well-being. My ulcerative colitis, however, flared up occasionally but was manageable. Unfortunately, six years later, the precancerous cells were again detected in an annual pouch scoping, and it all had to come out. The surgeons fashioned another pouch, a smaller K-pouch, but I eventually declined to have it connected for two reasons. My GI advised that I would be running to the toilet a lot and I would have some leakages. Not my cup of tea. So, for the past 4 years, I have been very content to live with an ostomy. At my stage in life, it is a very small price to pay for good quality of life. It's important that your surgeon feels you are a good candidate for the procedure. You would do well, however, to get a second opinion from another highly experienced colorectal surgeon. There are a lot of factors to consider, and major surgery is serious business. Good luck, and let us know what you decide.
PB

Thanks PB. My current surgeon requested a defecating proctogram on me Friday to see that I still had good sphincter control and that I would be able to evacuate if I was reconnected. The radiologist said I performed well and would send the results on to my surgeon. However, since the study I have had some bloody discharge and my rectum is now bothering me - discomfort and pressure. I don't know if this is because I pushed so hard during the study or if this is because I hadn't used those muscles in 3 months. My concern is I was not fully healed to do this study when I did it. I'm going to contact my surgeon tomorrow, Monday, just to let them know about the discomfort I am having since the study. I just hope I didn't screw things up inside. The radiologist didn't seem to take into account I've lost 1/3 of my rectum and she insisted on inserting the full amount of barium used on "normal rectums" into mine despite my pleas to her that the pressure was killing me. Sigh.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Had my colostomy reversal 2 years ago and all is well. Was supposed to wait 9 months but the doctor checked me at 6 months and said I was ready. Besides the scars, I would have never known I had gone through so much. Totally back to normal. Thank God and all of the great people on this site.

OMG, Tudi! That just sounds like pure torture by your radiologist! I would be so angry! All medical personnel need to listen to what we tell them during these procedures. We can "feel" what they cannot and know when our bodies are trying to tell us something. Hope nothing is damaged and it was just a matter of hardened mucus being dislodged and eliminated (which is perfectly normal) and sometimes does produce blood and discomfort.

Anyway, I agree with the responses thus far. A second opinion, good sphincter control, and YOU feeling you are ready. If it feels too soon, it probably is. PB told me to go where I could get the best medical opinion and I did. I saved my money and traveled to the Mayo Clinic after my doctor was just itching to wheel me into surgery and do a "three in one" operation. Remove a blockage, repair my hernia, and do the reversal. Thank God I listened to PB. The Mayo said if I had allowed my doctors to operate on me, I'd most likely be pooping in diapers now instead of a bag. I didn't let them operate and the blockage cleared after 5 days in the hospital with the dreaded NEG tube.

Mayo said due to the serious and long-term infection I had, I had no pelvic floor muscle left, was only able to defecate 21% of the solution, my sphincter was extremely weak, and I was too overweight for the hernia repair to be successful. So I'm on a 1-year plan now. Lose the weight and get anorectal manometry pelvic training along with physical therapy. Then we'll look into a reversal.

So glad you asked here. The folks on this site are more informed than most medical professionals about the odds and ends of our "ends". What's another month? If it makes you feel better, then so be it. My surgeon was going to reverse me after 6 months, but he said he had never seen a person as slow to recover as me. I could have told him that. Heck, even a pimple took months to heal when I was a teen. I am very slow to recover and even two years after my surgery, cascading effects like vulvodynia, fibromyalgia, and chronic constipation kept me from resuming my former lifestyle. It is going on 5 years now and only in the past year have I begun to feel like I may be ready for a reversal. I've lost 36 pounds, am succeeding in PT, and can actually feel my rectum contract when trying to pass a mucus plug. I know that sounds gross, but a mucus plug is just light-colored poop to me. Before, I had to use enemas, suppositories, gloved fingers, anything to get those suckers out and it HURT! So I know therapy works. It has not been nearly as long for you so your muscles are probably still strong. The longer it took for me to heal, the weaker my muscles got.

Like the Mayo doctors said, the MOST important part of a successful reversal (not including infection and other rare occurrences) is sphincter strength and control. If you are active and in good shape like PB was, the operation can even be done laparoscopically these days. Mayo and Cleveland Clinic are getting very precise in this type of reversal and hernia repair.

Well, good luck and keep us posted. If I ever do get a reversal, I will never abandon this site. I will give everyone a blow-by-blow recital of my experience. It is the one topic that is simply not written enough about here. Whether these surgeries are successful or not, we need to be informed so we can ask better questions of our own doctors and ourselves. God bless you. Should you decide to go through with it, may your recovery be speedy. Loretta

Hi, I had my ileostomy at 29 years old in May 2013 and had the reversal in October 2013. So I had it for just under 5 months. It is a big decision and I, like yourself, found having the bag was a lot easier. I was actually quite upset to see it go. It's been 4 months since the reversal now and everything is brilliant. I'm running, playing hockey, and back to work in a physical job with no issues. I won't lie, the first week after surgery was not pleasant. But I guess it's just the body's way of helping you heal. I read a lot of stories before my reversal about people having up to 20 bowel movements a day which put me off. But after the first week, it has been very good. Nowhere near as bad as having active Crohn's disease! My experience with both operations was extremely positive. I didn't have any issues or complications, and I would recommend having an ileostomy and a reversal to anyone in a similar situation to me. I would have no issues having to go through it all again if I had to, which, previous to the ileostomy, I thought I would be forever mortified by it all. I wish you luck with whatever you decide. If you have any questions, I would be happy to help. Good luck. Tina.

Thank you all for your responses. They are so very much appreciated. I am still angry about how the radiologist insisted on injecting so much barium into my rectum despite my pleas that the pressure and pain were becoming unbearable. Here's the irony of this story. When my study was complete, she said I had done well. However, I now received the report from my doctor and was told that although I showed good sphincter control, I failed to empty the top 1/3 of my rectum (or what is left of my rectum). I'm angry because she "called the test" so quickly. Not 15 minutes after she told me I was done, I found myself in the bathroom expelling the rest of the barium. I don't know now if my surgeon will take that into consideration or not. I missed his call on Friday, so I suspect I will hear on Monday if he still wants to scope me to see if I'm healing inside. I must admit that since the defecating proctogram, I have had almost constant pressure and discomfort in my rectum. I have not been able to pass any mucus either. Today I found it necessary to use a glycerin suppository, and finally, I passed the mucus. Thanks again, everyone, for your input and support. It means the world to me.

I did have a reversal last May, ten months ago, and things are still bad. I still have accidents and have to constantly watch what I eat. Before cancer, I could eat anything. I miss that. I didn't realize I was so emotionally attached to my food. I am back up to my normal weight. I don't really hang onto food long enough to get overweight. I take probiotics and enzymes. That slows things down. I also take a tsp of Metamucil with two ounces of water twice a day. When I have to be out, I eat Imodium and not much food. Thankfully, I work from home. But I miss my normally active life. Since my reversal, I only feel good enough to work out maybe twice a week. Taking private yoga lessons now to work on pelvic floor. There has been improvement but it is in small amounts. I lost most of my rectum to the tumor. Radiation and infection in that area have all contributed to the lack of recovery.
They did no test besides a finger test to see how strong my sphincter was. But it is getting stronger. But I don't know how much it would bother me if I had to go back to the bag. I do like wearing my blue jeans again though, so I am still doing what I can to get things back to close to normal.

I so understand, back in 2012 when I was getting ready for my reversal, I had a barium enema and the nurse was forcing the tubing in, which was sheer torture. Finally, I told her I could not stand the pain anymore and she went and got the doctor. He said hemorrhoids were blocking the entrance, so he got a smaller tube and it worked fine, still uncomfortable but better. I was in rectal pain and spasms for 2-3 days, and I passed a ton of mucus. Hopefully, you are on the mend now. It will get better.