Prolapsed rectum: living with it versus surgery

Posted by ejoy @ejoy, Apr 24, 2023

In December of 2018 I had a full hysterectomy at the recommendation of my GYN. That is another story but important to this post. In 2019 I started having a bulge protrude from my rectum and I thought it was a hemorrhoid. I started self treatment to no avail. I finally saw a GI doctor and was told I had a prolapsed rectum. I had multiple tests performed on my bladder and rectum (just awful) which were all normal. They could not see any link between the hysterectomy and my current issue. (This was the same healthcare system so I am guessing it was in their best interest not to find a link.)

So my question is does any other member have this condition and what is / was your solution? The surgery sounds horrible, the doctor said it is sometimes not 100% effective. 95% of the time it will retract when urinating or having a bowel movement. My greatest frustration is when taking long walks or hiking it and any fecal matter starts coming out.

I am 68 yo and don’t know whether to live with it and only do surgery if it becomes 0% retractable, which could mean being at an advanced age and not healing as well, or do the surgery now while in good health and healing would be easier.

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I struggle with the same question. My rectocele opened two or three years ago, in my early '50s. For me, the problem was not leakage but managing excretion itself. The prolapse is large enough that stools get stuck in it and back up. I have spent the last several years fine-tuning my diet to keep stools soft enough to keep moving but firm enough to make it out of the malformed plumbing without the help of the surrounding structure.

When the bulge you described first happened, I did not understand what it was. I went straight to the doctor but did not get help there. I became so obstipated that I damaged myself when I finally passed too large a load. I ended up in the emergency room but the damage was already done. Then I saw a specialist who discussed surgery and prescribed pelvic floor therapy. Therapy helped, teaching strategies for how to splint, use a toilet stool, and relax the resulting pelvic floor spasming, with which I still struggle.

I had leakage with miralax, which does ease constipation, but I eventually retired it to firm up the stools enough to make it through my malformed plumbing. Now I eat pumpkin seeds, homemade red cabbage sauerkraut, tons of leafy greens, psyllium husk, and guar gum every morning.

But there's no way to undo the actual damage without surgery to seal up the herniation. It's bizarre to be able to feel individual stools from the outside with my hand and have to guide them out myself manually. With the right diet, I have been able to do more without splinting, but to finish, I have to provide a manual assist. And I have nerve pain at my pelvic floor now that I can manage but can't seem to completely resolve.

I have hypermobility and a connective tissue disorder that makes my tissues stretch too easily, which is why I have held off on the surgery so far. I understand that the surgery is often ineffective even in people without this challenge, and even more ineffective in people who have it. I've heard a fair amount of complaints from those say that their other pelvic prolapse surgeries work well but not the rectocele repair. But every once in awhile, I hear from someone who says that it was a godsend. To me, it sounds like a gamble. It could be life-changing, and I could make things even worse, with new sources of nerve pain. No way to know on the front end which way it will go.

I desperately want to be "fixed," but I am worried that the surgery will not hold and I will wind up worse. I've worked really hard to get to the point where I can manage a normal life, which I didn't think was possible at the beginning of this awful story. My onset coincided with the start of the pandemic, when getting away from my small town didn't even seem possible, so I had to learn to live with it. But even now, I worry that I won't always have the strength in my arms needed to splint manually and torque my body to be able to pass stools.

Since it started, I've now had a bunch of medical consults with mixed recommendations. One surgeon recommended I go forward with repair surgery, but others have been less encouraging. I don't know who to listen to. That's why I haven't done it so far, but I share your concern about waiting until I'm older and having the recovery prove even more difficult.

I would be very interested in others experiences with this problem. I share all these details to let you know that a rectal prolapse is in fact survivable, though incredibly frightening at first. With time and practice, things normalize that you couldn't possibly imagine could ever seem normal. At first I thought I would never leave the house again, and it took a long time, but I fully live in the world again. But I still fantasize about a magical surgery that will just cure me from this isolating and painful disability.

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@erin123

I struggle with the same question. My rectocele opened two or three years ago, in my early '50s. For me, the problem was not leakage but managing excretion itself. The prolapse is large enough that stools get stuck in it and back up. I have spent the last several years fine-tuning my diet to keep stools soft enough to keep moving but firm enough to make it out of the malformed plumbing without the help of the surrounding structure.

When the bulge you described first happened, I did not understand what it was. I went straight to the doctor but did not get help there. I became so obstipated that I damaged myself when I finally passed too large a load. I ended up in the emergency room but the damage was already done. Then I saw a specialist who discussed surgery and prescribed pelvic floor therapy. Therapy helped, teaching strategies for how to splint, use a toilet stool, and relax the resulting pelvic floor spasming, with which I still struggle.

I had leakage with miralax, which does ease constipation, but I eventually retired it to firm up the stools enough to make it through my malformed plumbing. Now I eat pumpkin seeds, homemade red cabbage sauerkraut, tons of leafy greens, psyllium husk, and guar gum every morning.

But there's no way to undo the actual damage without surgery to seal up the herniation. It's bizarre to be able to feel individual stools from the outside with my hand and have to guide them out myself manually. With the right diet, I have been able to do more without splinting, but to finish, I have to provide a manual assist. And I have nerve pain at my pelvic floor now that I can manage but can't seem to completely resolve.

I have hypermobility and a connective tissue disorder that makes my tissues stretch too easily, which is why I have held off on the surgery so far. I understand that the surgery is often ineffective even in people without this challenge, and even more ineffective in people who have it. I've heard a fair amount of complaints from those say that their other pelvic prolapse surgeries work well but not the rectocele repair. But every once in awhile, I hear from someone who says that it was a godsend. To me, it sounds like a gamble. It could be life-changing, and I could make things even worse, with new sources of nerve pain. No way to know on the front end which way it will go.

I desperately want to be "fixed," but I am worried that the surgery will not hold and I will wind up worse. I've worked really hard to get to the point where I can manage a normal life, which I didn't think was possible at the beginning of this awful story. My onset coincided with the start of the pandemic, when getting away from my small town didn't even seem possible, so I had to learn to live with it. But even now, I worry that I won't always have the strength in my arms needed to splint manually and torque my body to be able to pass stools.

Since it started, I've now had a bunch of medical consults with mixed recommendations. One surgeon recommended I go forward with repair surgery, but others have been less encouraging. I don't know who to listen to. That's why I haven't done it so far, but I share your concern about waiting until I'm older and having the recovery prove even more difficult.

I would be very interested in others experiences with this problem. I share all these details to let you know that a rectal prolapse is in fact survivable, though incredibly frightening at first. With time and practice, things normalize that you couldn't possibly imagine could ever seem normal. At first I thought I would never leave the house again, and it took a long time, but I fully live in the world again. But I still fantasize about a magical surgery that will just cure me from this isolating and painful disability.

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Thank you for sharing your experience. Thank goodness I have not had quite the issues since mine is a prolapsed rectum and the vaginal wall is strong. I eat a whole food, plant based diet and have no issues.

Again thank you and I hope the best for you.

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@ejoy

Thank you for sharing your experience. Thank goodness I have not had quite the issues since mine is a prolapsed rectum and the vaginal wall is strong. I eat a whole food, plant based diet and have no issues.

Again thank you and I hope the best for you.

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@ejoy, @erin123
I'm so sorry to hear both of you are struggling with this decision. I've had alot of female surgeries in my 60 years, starting with a partial Hysterectomy at 36 yrs, followed by a cystocele/rectocele surgery (40s), a vaginal prolapse repair (50s), and an oophorectomy/salpingo(50s).
All have been successful with no complications so far. What I remember as the most uncomfortable symptom was having to wear a Maxi pad for 6 weeks due to spotting and having to be careful about not lifting heavy objects. I would suggest that you weigh your current discomfort and decide from there. If you are not to uncomfortable or symptomatic, then the surgery may not be the best option for you and perhaps therapy or medication may help. If you're in true distress...consider the surgery and research recent surgeries and outcomes on a Google search. Hoping you get the answers you need.

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@ladyaceintx1

@ejoy, @erin123
I'm so sorry to hear both of you are struggling with this decision. I've had alot of female surgeries in my 60 years, starting with a partial Hysterectomy at 36 yrs, followed by a cystocele/rectocele surgery (40s), a vaginal prolapse repair (50s), and an oophorectomy/salpingo(50s).
All have been successful with no complications so far. What I remember as the most uncomfortable symptom was having to wear a Maxi pad for 6 weeks due to spotting and having to be careful about not lifting heavy objects. I would suggest that you weigh your current discomfort and decide from there. If you are not to uncomfortable or symptomatic, then the surgery may not be the best option for you and perhaps therapy or medication may help. If you're in true distress...consider the surgery and research recent surgeries and outcomes on a Google search. Hoping you get the answers you need.

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That's excellent advice, Ladyaceintx1--thank you. And I'm glad to hear that ejoy is not struggling with the same level of prolapse as it sounds like you and I both have. I'm still very interested in learning about others' experiences with surgical repair options, how long the repair continued to work, and whether it's better to do the surgery before a certain age (if it's going to have to get done at some point). I'd especially welcome advice from those with connective tissue laxity, and I'd also welcome recommendations on where to seek care. I definitely don't have an option to do it locally, so if I decide to do it, I'll have to travel regardless. Grateful for the community wisdom on all this.

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@erin123
Certainly the older we get, the longer it takes us to recover from any type of surgery. That being said, I wouldn't put off the surgery if you're having symptoms that cannot be corrected by any other means and you're very uncomfortable or in pain. At best, you will be relieved of your symptoms and get on with your life. Sometimes yes, the surgeries don't last forever but neither do we, hence all the female surgeries I listed.

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Thank you, and it does become a quality of life issue at some point.

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@ladyaceintx1

@ejoy, @erin123
I'm so sorry to hear both of you are struggling with this decision. I've had alot of female surgeries in my 60 years, starting with a partial Hysterectomy at 36 yrs, followed by a cystocele/rectocele surgery (40s), a vaginal prolapse repair (50s), and an oophorectomy/salpingo(50s).
All have been successful with no complications so far. What I remember as the most uncomfortable symptom was having to wear a Maxi pad for 6 weeks due to spotting and having to be careful about not lifting heavy objects. I would suggest that you weigh your current discomfort and decide from there. If you are not to uncomfortable or symptomatic, then the surgery may not be the best option for you and perhaps therapy or medication may help. If you're in true distress...consider the surgery and research recent surgeries and outcomes on a Google search. Hoping you get the answers you need.

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Thank you! I just have to decide when enough is enough. Very kind of you to share.

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@erin123

That's excellent advice, Ladyaceintx1--thank you. And I'm glad to hear that ejoy is not struggling with the same level of prolapse as it sounds like you and I both have. I'm still very interested in learning about others' experiences with surgical repair options, how long the repair continued to work, and whether it's better to do the surgery before a certain age (if it's going to have to get done at some point). I'd especially welcome advice from those with connective tissue laxity, and I'd also welcome recommendations on where to seek care. I definitely don't have an option to do it locally, so if I decide to do it, I'll have to travel regardless. Grateful for the community wisdom on all this.

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I too hope to hear from someone(s) who have undergone surgery and the outcome.

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@ejoy

I too hope to hear from someone(s) who have undergone surgery and the outcome.

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I’m having tests next week for diagnostic purposes for prolapse or te to eke. I await more replies as well.

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In 2020 (I was 77) I went to my primary doctor thinking I had hemorrhoids. I did, and had them for quite a few years. I was having some pretty profuse bleeding suddenly though. I would sit down on the toilet and blood would splash into the water! It turned out that I had a rectal prolapse and was referred to a general surgeon at our local hospital. He scheduled me for prolapse repair. I was led to believe that I should not wait to do the procedure because of the bleeding. I would advise you to do some research and find the best colo-rectal surgeon that you can to do this. It sounds like it is not an emergent situation for you yet. I had the surgery done and I found that it resulted in a recto-vaginal fistula. I now had stool coming out of my rectum and my vagina!!! The next step then, was to have a 'temporary' colostomy in order to bypass the rectum, allow the passage to clean out before attempting to repair the fistula. My primary doctor said "I hope the surgeon told you a fistula is a very difficult problem to fix". Well, he hadn't...he did say there were several options for treatment. So the colostomy surgery was scheduled. A week or so later I began to retain urine and eventually after a couple visits to the ER for catherization, had an indwelling catheter installed. I wore the urine bags until my colostomy surgery a couple weeks later. My recovery after the colostomy was lengthy but I had home health coming in which helped a great deal learning to handle the care of the incision and dealing with emptying and installing a new bag. Within a day or two I discovered that I was eliminating stool not only into the ostomy bag but through my rectum as well!!!!!! I didn't know this at first because of the nerve block-I had no sensation there and I was wearing Depends as I also had in the hospital. But when I was at home I discovered that this colostomy was not adequate and wasn't functioning as intended.
There's more to the story but what I want to impress upon you is to look online for well-credentialed specialists, even if you have to travel, as we ended up having to do. I researched to find someone who I wish I had found at the beginning. I had my colostomy reversal at UW Madison Hospital. I am able to function without the ostomy bag. It's not the same as before all this started and I have to follow a high fiber diet, drink plenty of water and keep a somewhat rigid schedule. But I am bagless!! I wish you the best of outcomes. Please do your research first.

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