How to prepare for a successful ileostomy reversal and defecating proctogram?

Me again. I keep writing because I find myself so lost in this whole thing. Question for anyone out there that has undergone ileostomy reversal. I've been told if all goes well and I heal well, I should be able to undergo ileostomy reversal in 6 months. But before that, I will have to successfully complete a defecating proctogram. Because my rectal muscles don't work real well, I did not do well taking this test prior to surgery. I'm wondering if anyone else had to take this test and/or how do you prepare for this after not having used your rectal muscles for so many months? I want to do everything possible out there to ensure I pass this test. Thanks for the input.

I have not heard of that test, but I do know my niece was able to have the reversal done and is not only happy but in her 40's so it was good for her -- she has FAP and may go permanent later as the disease spreads but for now it is a blessing for her to have the reversal. Mine was permanent -- there was no question on that -- I guess I would think of age, surgery stress, and whether this is going to be a problem again.

Thanks for the feedback. I am 48, so of course, I am really hoping for a reversal. I see my surgeon tomorrow for my first follow-up and plan on asking him about exercises/therapy I might be able to do to increase muscle tone of my rectum since it's had problems in the past. I wish your niece much luck in the years to come.

Hi. I have had the test (at the Mayo Clinic) and failed it miserably. I was only able to defecate 21% of the solution. So no reversal for me anytime soon. I was referred to the Mayo Clinic in Scottsdale (believe it or not - this is the closest facility to me that has a non-latex anorectal manometry machine) for 18 months of follow-up therapy every 6 weeks. I am allergic to latex so I must have the non-latex machine. I cannot afford to go to Scottsdale for a week every 6 weeks, so it looks like a reversal is out of the picture for me. I also have a parastomal hernia and chronic kidney disease. The Mayo G.I. told me I cannot do the exercises (similar to Kegels) on my own as I could strangulate my hernia or damage my kidneys. There is a certain way to prepare for a reversal and I am not a candidate for that preparation on my own without the machine and a physical therapist. So I hope your doctor has better news for you. I took Prime Boy's advice and went to the best doctors I could manage (even if it meant traveling thousands of miles), as the doctors in my pitiful little town in New Mexico were going to do the reversal. The Mayo doctor said it was a good thing I did not let them or I would not have been able to defecate out of my rectum or my stoma. From Dr. Hauser's lips to PB's ears. As the years are flying by, I am more and more comfortable with my bag and less and less inclined to take a chance on post-op infection (that is what almost killed me the first time), to feel pain, to risk failure, to leave home, and to go through months of recovery again. I'm with PB on this, as well. I turned 62 on Monday and life is pretty darned good for me. Simple, painless, and even sometimes fun. I garden, entertain friends, cook, bake, clean, walk, dance, and sleep like a baby. I think I'll just leave well enough alone. I hope your doctor is skilled when it comes to explaining the importance of having good sphincter strength before you reverse. Otherwise, you could be pooping in diapers instead of a bag. Best of luck to you and I hope you have easy access to the medical equipment you need to prepare for your surgery. Those who have a reversal soon after their colostomy don't have the same concerns we who have been "on the bag" for a number of years or we who have never had good rectal control do. I'm so glad you took this test so you will be informed and able to make the choice that is right for you. So many have rushed into reversals and their doctors never even gave them this test or prepared them to build this muscle tone before going into surgery. Take care and God bless you. Loretta

Morning,

I have had my ileostomy reversed last August after "3 years," which means my rectal muscles have already forgotten how to work and what to do. Therefore, I am suffering from irritable bowel. However, I am having training and therapy to reactivate or retrain my rectal muscles in order to get my bowel function working again. For those who have had an ileostomy for less than 1 year, there is a better chance of returning to normal shortly.

I do Pilates to strengthen my inner abdomen (core) muscles while carrying an ileostomy. So, you need to help yourself by doing exercise. I used to hate exercise, but remember that you have to live with this body for the rest of your life. If you help your body and treat it well, in your later life it will serve you better. BUT be patient with yourself. It is NOT going to happen overnight. It is a long process, which means you need to do it regularly (recommended 3+ times a week). But it takes at least six months to build up the inner strength. After the first month of forcing myself to go to the gym (Pilates class) three times a week, it gets easier and easier as your body gets used to it. And now, if I go on holiday for a couple of weeks without doing it, my body seems to crave exercise. So, as soon as I come back, I will have to get back to my usual routine (because I do not have the discipline to do it on my own).

Good luck and all the best,
Jo

No, but I wished they had done it so that I would not have gone through the reversal. My reversal happened on June 10, 2013 and by July 1, 2013 I had my ileostomy back due to an emergency situation. I will keep my ileostomy and will not try the reversal again.

Thank you all for the input. I met with my doctor today for my 2-week follow-up. He basically said there are 3 criteria for me getting a reversal - I have to get off all pain meds, be eating better, and be able to pass the defecating proctogram test. Even if I get off pain meds and start to eat better, he said the deciding factor will be the test. I do feel fortunate to live just outside Baltimore so I have an excellent doctor at Johns Hopkins Hospital. Of course, I'm keeping my fingers crossed I'm able to have a successful test but realize there is the chance I may not. Prior to my surgery, I failed miserably but, as the doctor said, the one advantage I have is he was able to physically see my problem and remove it - my bowel had literally knotted itself into a 360-degree knot. He said that is a positive thing and that once I recover, my stool should move much more freely through the rectum. Again, thank you everyone for your input. It really helps.

Hi Tudibird,

I hope you are keeping well and getting easier with your body by now. As mentioned, I have a very irritable bowel. However, I have been referred to St. Marks Hospital for biofeedback where they teach me how to retrain rectum muscles in order for stool to pass easily and normally. Now, my symptoms have improved slowly, which means rectal muscles are getting stronger. Therefore, I believe it would be easier in your case as you haven't had an ileostomy for over years. Have you had a date for a possible reversal yet?

Wrap warm in this chilly weather.

Hi Tudibird,

I hope you are keeping well and getting easier with your body by now. As mentioned, I have a very irritable bowel. However, I have been referred to St. Marks Hospital for biofeedback where they teach me how to retrain rectum muscles in order for stool to pass easily and normally. Now, my symptoms have improved slowly, which means rectal muscles are getting stronger. Therefore, I believe it would be easier in your case as you haven't had an ileostomy for over years. Have you had a date for a possible reversal yet?

Wrap warm in this chilly weather.