Experiences with Colostomy for Pelvic Floor Dysfunction

Has anyone had a colostomy because you couldn't expel stool through the ano-rectal passage due to your pelvic floor muscles contracting rather than relaxing when you wanted to poop? If so, has it worked out for you? Any challenges or complications? Did you get it reversed at some point or do you hope to get it reversed? What are you doing to see if you can reverse it? I know it's a lot of questions, but, they are all related. Thanks, in advance, for anything you can share.

Hello Mark.

I didn't have quite the same condition as you describe but I did suffer with an internal anal prolapse which had a similar outcome (except with virtually no anal control at all).
The end result was that I had a colostomy. There was talk later (from the surgeon)  of a reversal, but when I explored the matter further there was absolutely no reason that the original problem would not come back if I opted for a reversal. This was a no-brainer and I opted to keep the colostomy and have since managed my life accordingly.

Therefore, if I was to give advice (based on personal experience) it would be to make absolutely sure that whatever caused you to have a colostomy in the first place would not return if you had a reversal. 

Best wishes

Bill 

Hi Mark,

I have a permanent ileostomy because of severe pelvic floor dysfunction. My colon has been completely removed because it wasn't moving, which was a different issue. Now, because of how severe my pelvic floor dysfunction is, it was never going to be reversed, and I had to have my rectum removed as well since I can't pass anything out of the rectum; the mucus wouldn't come out either. I still have my anus currently.

Defecation is a complex coordination of a series of occurrences. Dysfunction of defecation is rare but does occur. Yes, internal prolapse can occur and can be treated. There are also a series of malfunctions of the pelvic diaphragm too. A fecal impaction will also mimic the symptoms. I do not know the expertise of your caregivers or if a defecography was performed. There may be others but the Cleveland Clinic is a center of excellence for this problem. Here is some more information: https://my.clevelandclinic.org/health/diseases/22089-obstructed-defecation I disagree that 18% of the population has the problem. It may be 18% of the patients that they see. Good luck. Keep searching for a solution to your problem.

Thanks for the comments and the link. I have gone through every imaginable test for obstructed defecation e.g. ano-rectal manometry, barium defecography, MRI defecography, multiple CT scans, MRIs, ultrasound, x-rays, flex sig, colonoscopy at places like Mayo Clinic, Houston Methodist, and Johns Hopkins. Had appointments at Cleveland Clinic. Wasn't able to travel there. The tests ruled out things like prolapse, intussusception, rectocele, cancer, IBD. None of the tests were definitive about anismus but had indications for it. Tried every conservative approach including aggressive laxatives, pelvic floor therapy with biofeedback and cognitive behavioral therapy. Nothing helped. After 2 years of trying conservative treatments reluctantly agreed to a sigmoid colostomy hoping that I can continue to work on my pelvic floor and get it to behave properly and then reverse the colostomy. It's been almost 8 months since the surgery and in spite of working with a very good pelvic floor therapist haven't been able to get my pelvic muscles to work the way they need to. On top of that I have been having severe constant pain in my rectum with intense urge to poop through my ano-rectal passage even though it has been bypassed. No pain medication, muscle relaxants, antispasmodics, anticholinergics, steroids have helped with the pain or the tenesmus. It has made my life a living hell. I'm not exaggerating. As bad as it was before the colostomy, this is worse. That's why I am seriously thinking about reversing it and take my chances. I reached out to the community here to see if anyone has any ideas, insights on this that can help me make the decision. Also, I have to convince a colo-rectal surgeon to do the reversal.

My Ostomy Journey: Jearlean | Hollister

So Beth, you had pelvic floor dysfunction and issues with your colon? When you had the ileostomy, did you know it was going to be permanent? How long have you had it?

On the matter of having your rectum removed, was it because you couldn't pass mucus out of something else? Was not being able to pass mucus painful for you? How painful was the rectum removal surgery and the recovery? I read that it can be long, incredibly painful, and very risky. An aggressive colo-rectal surgeon has suggested that I have a total proctocolectomy with an ileostomy. None of the other surgeons agree. I'm scared to death of having to do that.

Hey Mark,

So my colon wasn't moving at all, so it had to be removed. My colon not moving was due to some other issue.

Because of my pelvic floor dysfunction and severity, I knew my ileostomy was going to be permanent. I have had my ileo for a year. Now when I first had my ileo, my first surgeon did it as a loop ileo but was permanent. He did a loop because of the mucus and the rectum, with a loop the mucus is supposed to go into the bag vs the rectum. But that theory has been proven false. I ended up getting a second surgeon and got an end ileostomy and rectum removal. When he went to remove my rectum, it was so badly packed with mucus. To answer your question, yes, it hurts having mucus being stuck in there and your body wants to push it out but your muscles won't let it, so it just sits there and you can feel it all the time. (Well, I could, not to scare you, just want to be real and honest). Now he took my rectal stump but left my anus, so the healing was a little bit different than taking both the rectum and anus. The complications weren't as high, since I still have my anus, I didn't have an open wound. I did still have a drainage tube when I woke up from surgery. And no, I can't pass anything out, literally even water out of my bum.

I will tell you that if a surgeon is telling you not to take the rectal stump or both the rectum and anus and they know you have pelvic floor dysfunction, run away from them. They don't grasp the concept of the fact you won't be able to pass mucus and they will have to turn around and do it after, or you will fight with them trying to plead your case when you already know what your body is doing. Go for the doctor that listens and has some concept of pelvic floor dysfunction. Now I will tell you it isn't common, so a lot of doctors haven't had many cases. We are special and unique. Go with the doc that is listening to you. Do you feel comfortable with the doctor that brought up the surgery?

Don't be scared, think how your life will improve. Living with pelvic floor dysfunction sucks horribly bad and honestly it took them my entire life to find out what was wrong. I haven't been able to go to the bathroom since the day I was born, lived on laxatives in pain all the time, sick to my stomach. I honestly love my ileo and I now have a life where I couldn't hardly get out and go anywhere before. You got this, you are strong and brave, and God will carry you all the way. We are all here to support you, and if you ever need anything or need to talk, have questions, write me anytime! Ostomystrong, ostomywarrior

Hi Mark, my story started in my very early twenties, when I started to have issues with constipation. It got worse over the years, and I saw many doctors and specialists. I had every test in the book and tried every new drug that hit the market to make my poor bowels work. Some offered temporary relief, but never lasted. I had one specialist tell me he was sure it was a pelvic floor problem, that the muscle was contracting instead of relaxing when I tried to have a BM. I knew in my gut he was wrong, but went along with his suggestion and saw a pelvic floor physiotherapist, which did nothing for me. Finally, over three years ago, my bowel perforated and I ended up with emergency surgery and a colostomy. That did not solve the problem, in fact things got worse, as it turns out that muscles in the large intestine were not moving the stool along as they are supposed to do. I had felt that this was the problem all along, but could never convince any doctor of that. The surgeon decided that an ileostomy was the solution, so I finally had that surgery about 1 1/2 years ago, and it worked! I'm finally not in constant pain and discomfort. So, in my case, the only solution was removing my large intestine. Are you absolutely sure that the problem you have is with your pelvic floor muscles? Have you explored the idea that it could be the large intestine muscles? I hope you find the answers and a solution to your problem. Good luck.

Terry

Hi Terry, you also bring up a good point. Making sure all testing has been done. Mark, have they done the balloon test and the defecating toilet test for you?

Yes, Beth, I had the ano-rectal manometry with balloon expulsion test. I just couldn't expel the balloon, not even after trying for almost 10 minutes. Also, in the barium defecography and the MRI defecography tests, I couldn't expel the contrast material. Even though the tests didn't show definite muscle dysfunction, the fact I couldn't expel the balloon and the contrast is pretty good evidence that I have some kind of pelvic floor dysfunction which pelvic floor therapy with biofeedback is not being able to correct. I read what you said in your other reply about my having the total proctocolectomy. I'll consult a few other surgeons and have all tests redone before I decide. Thanks for your support though. It definitely helps.

Hi Terry, thanks for your comment. The one test I haven't had is the total bowel motility study. I will definitely have that done before I get anything else done, whether it is a proctocolectomy with an ileostomy or a reversal of the colostomy.

You have had the tests done that check for your muscles in the booty... Yours sound like my results..those tests are not fun as you know. I just wanted to make sure they did those for you and they were thorough. Yeah that biofeedback I thought was a joke.. They also had tried Botox injections that for me didn't do a darn thing. And anytime, seriously, if I can help, it would be my pleasure. And I am an open book, feel free to ask anything.

Sigh.. I have pelvic floor issues, prolapsed internal hemorrhoids and believe from laxatives and straining for 12 years, developed ulcerative colitis. Sadly, during anal manometry, the doc ruptured my spleen so now I am moderately immunocompromised. I know I need surgery but docs are hesitant to do anything because I have no spleen and the risk of a leak from surgery can be well, devastating. Only Cleveland Clinic in has said they could do the surgeries needed but it would be done in three surgeries. I live in MA. I would need to move to Cleveland, find a safe place to live for a year. Nobody in MA with all the good hospitals will touch me. I will need a temp ileostomy, then a full ileostomy because I have colitis, and then my rectum removed. It is very scary with no spleen and being high risk. I have been looking and asking if anyone with no spleen has had an ileostomy and their rectum removed, but so far can't find anyone who had their rectum removed, which in truth is much worse than my colitis. In MA, they offered me a temp ileostomy, (but to have the temp ileostomy permanently, and leave my diseased sigmoid and rectum (colitis in). Given this they said I may have to go on biologics. That is no fix for me, as I am already immunocompromised, don't need additional meds to further weaken my immune system, and my rectum is more the problem. I am waiting for a consult with Yale which is closer. Anyone had experience at Yale with Dr. Reddy or names of good colorectal docs at Cleveland.

Hi there,

I am really sorry to hear you're in the situation. I'm not trying to sound rude, but are you sure it wasn't a different test that happened to your spleen? The anal manometry test only goes up the rectum and not much farther than that. It checks your rectum and anus muscles.

Good morning Beth. Hope your day is going well. Mornings are the toughest for me. Every day I get out of bed with severe pain and urge to poop even though there is nothing in the rectum to come out except the mucus. I try a small water enema to get the mucus out. But I have to strain hard to expel it and that puts pressure on the small hernia that has developed at my stoma site and also gets my rectal muscles to go into spasm which is very painful. So, I am in a real catch 22 situation.

Thanks so much for offering to answer any questions I may have. I wanted to ask you, if you don't mind, about living with an ileostomy. I've read and heard that an ileostomy is much more difficult to manage than a colostomy with a lot more mishaps and complications.

Do you have issues with leakage and skin irritation? Any bag accidents?

How often do you have to empty the bag?

How often do you change it?

Where in your abdomen is the stoma?

Do you have to be very selective about what you eat?

How painful was your rectum removal surgery? How long did it take to heal? Any complications? Did the surgery in any way affect your urinating?

I'm sorry if these are too many questions, but, I need to know these things from someone with first-hand experience and is living with it.

Hi there,

I don't mind any questions at all. I will first tell you that I have very stretchy skin. I have hypermobility disorder where my skin is beyond stretchy and it has caused me to retract, so now I do have leaking but I have not had a full blowout. My surgeon, in his over 15-year career, has never seen anything like it. So my story is not common when it comes to a stoma. So I don't want you to think it's normal or screw you. But in the first 2 months, it was normal, I didn't have leaks, I changed it every 3 days, sometimes 4. I empty about 5-6 times a day. I run on the thick side vs the thinner side with my output. I wear a two-piece so you can just change the bag in between changing the wafer. I use non-filtered clear bags from Coloplast. My stoma was originally located on the bottom right side of the abdomen, but like I said, my abdomen is odd so I had to have it relocated to the highest point on my abdomen and with it being higher, it doesn't cause any trouble as far as clothes or emptying.

Eating: I don't eat any seeds or nuts or anything with skin, no raw fruits or veggies which is standard for Ileostomy. Besides that, as long as it agrees with you and comes out okay, you can eat steak, pizza, burgers, chicken, eggs, etc. Water and keeping hydrated and electrolytes are crucial with an ileo. I drink water all day, apple juice, and ORS solution, and I will drink a nutrition shake twice a day. I also have gastroparesis and GERD so my diet is different than most with an ileo.

The rectum removal wasn't as bad as I thought it was going to be, he kept my anus and just took the rectal stump instead of a full proctectomy where they take both the rectum and anus. It didn't affect my urination and the healing was about 3 months.

Me personally don't regret it for a second.

Thanks for sharing. This is valuable info as I think about the possible options that I may have to decide on. I have to admit this is very hard for me to wrap my head around. Never thought I would be in this situation as I had no significant health issues until my left inguinal hernia surgery when I turned 66. Things went downhill from there. The hernia repair led to urinary issues and surgery which led to my pelvic floor dysfunction which led to me having a colostomy. I still have not gotten used to having a stoma 8 months after the surgery. And now the mucus problem which is driving me crazy.

Thanks for listening to my venting.

Of course, anytime. I hope I have helped, and I hope that none of it scares you. May I ask if you have accepted having your stoma? Oh yeah, the mucus issue in the booty with pelvic floor dysfunction is zero fun. I am sorry you have to go through that.

Hi Mark,

I had that same issue. After lots of visits to doctors, medications, and laxatives, I went ahead and got the ostomy. I have never liked having it, so I started pelvic floor physical therapy. I've had the bag for 2 years now, and with the P.T., I am close to being able to get a reversal. The P.T. has taught me how to have a bowel movement using the correct breaths and muscles.

Good luck to you

Hi Mark, I'm just seeing this post now, or would have answered sooner. I have lived with both a colostomy and an ileostomy, so I can give you some perspective on both. Because the colostomy did not work for me, due to the fact that the colon muscles didn't work properly to move the stool along, it was a miserable experience. I lived on PEG, lots of it every to allow stool to exit. After close to a year, I finally got my ileostomy, and I can tell you from my experience, there is little difference, except that I can actually function normally with the ileo! The maintenance is the same, and I actually get better wear time now (six to seven days) than I did with the colostomy. I am more likely to get skin irritation issues, but if you find the right product for you, you should be fine. I had to try lots of different pouches, brands, and styles to find the right one for me. I do have to empty more often, but I don't find that too big of a deal. As far as eating goes, I eat anything and everything, and the only thing I make sure to do is keep well hydrated and chew my food really well. I am infinitely better off with the ileostomy, have a better quality of life, and do all the things I did pre-ostomy.

All the best of luck going forward.

Terry

P.S. I should have added, I had my large bowel removed after around six months of getting the ileostomy, and recovered quite quickly from that. They removed the colostomy stoma, and other than a small scar, you wouldn't even know it was ever there.

It was a colon manometry, where they thread wires up your colon to test to see if you have muscle or nerve damage. They clipped the wire too close to my splenic flexure.

Hi Mark. Please message me. I would love to find out information as I have the same condition.

Hey Beth! I would love to talk. I have DDD as well. Please email me at sarichankadyal@live.com.

Hey Beth! I would love to talk. I have DDD as well. Please email me at sarichankadyal@live.com.

Hi Claire. Did you get treatment in the UK?

"ODS" Obstructed Defecation Syndrome, every time I search I get a new name for my issue, thanks.