Pelvic Floor Dysfunction, Constipation, Ileostomy??

Hi.

Sorry you are having so much trouble. I can relate. I have dealt with severe constipation my whole life (I'm 36), but only a year ago, it got so horrible that I had to finally get help. I also have bowel incontinence, so when I do have a bm, it just happens when and where it wants to, I have zero control. My problems are mostly caused by severe nerve damage from being born with Spina Bifida. So, I also have the pelvic floor dysfunction, as well as extremely weak (useless) muscles in the rectum, etc.

Not sure what you have tried as far as treatments…I have done biofeedback (2 separate rounds of it), lots and lots of meds, diet changes, lifestyle changes, bowel retraining. Lots of fun stuff. My GI sent me to Mayo in Aug. this year for testing. They finally decided that although they do not expect the constipation to change much, they are going to do a colostomy (Jan. 2015), which will at least fix the bowel incontinence, and they will also remove my very badly prolapsed rectum. (Also having a hysterectomy and bladder sling surgery at the same time, for other reasons. I have a history of bladder problems and had an augmentation w/ stoma for that in 2006.)

An ileostomy is a really giant step to take. Have they done testing to show that your colon is the problem? If the colon is healthy, I can't imagine any doctor would do that surgery, because removal of the colon is a huge deal that comes with many of it's own problems. Unless you have testing proving that without a doubt your colon is the problem, I would run from any doc that suggests removing it. Your colon really does a lot as far as putting water back into your body, therefore removing it from the waste. Without a colon, your output would be much thinner, to the point where you can get easily dehydrated, and you will have problems with things like medication absorption because everything moves thru you so much faster. They will not remove your colon unless they are certain it needs to be done. It's so much more than a bit of a lifestyle change.

At Mayo, I had a VERY long test done, (between 7-8 hours straight with not moving)…colonic motility testing. From what I understand, it's not a super common test, but in my case, a very necessary test. That told them everything they wanted to know about my colon and more! And for me, there were some issues in the colon, and some things they couldn't even really explain or make sense of, but they concluded it would be too much of a risk and potentially cause too many problems in the future for them to remove it. They will remove a small section of the end, but said overall, my colon is healthy enough to stay put.

I'd be happy to talk to you more about the kinds of treatments I have tried and what you're going thru (mentally as well as physically) and what you've tried, etc. Currently, I have to do a "bowel purge" every 10-14 days (otherwise, I almost never have a bm ( I've had less than 10 episodes of having bms not purge induced in the past year)), which consists of drinking 1/2 gallon of bowel prep (like they make you use to prepare for a colonoscopy), plus taking double doses of my daily meds, which I already take rather high doses of (Linzess, Dulcolax, Miralax). Pretty miserable life lately…really bad nausea, bloating, cramps, gas, trouble eating, etc. Now I've started having issues with some upper GI stuff, and they are actually wondering whether the lower GI stuff is just so "full" that it's actually backing everything up and is the cause of the upper GI stuff. I'm waiting to hear back from my doc about whether he wants to pH testing or another endoscopy, or just toss in more meds. It's amazing how much constipation can screw up your life.

Is there anyone you can talk to at the hospital or clinic about a way to get the biofeedback treatment (for pelvic floor dysfunction) even if your insurance is saying they won't pay? I guess I would ask someone at the clinic who knows about insurance and if there's any way to appeal it or anything possible to get the treatment you need. There are also lots of meds out there that may help you, many of them are meds designed for other purposes that cause diarrhea as a side effect for many people, but end up helping people w/ severe constipation. Please email me or respond on here if you want to talk more. I am willing to share my info/story with you if it will help. All the different med names, etc., whatever.

I know you are probably feeling desperate for relief and like you are alone, no one understands, no one will help you. And it's really tough on a social life or work life or any part of life when you don't feel good most of the time. Been there. I know it's really hard, and frustrating, and your quality of life isn't too great right now, but there is hope. That is one thing I have learned in this past year. There is hope. People do care. And they will find a way to help you. Just keep asking for what you need and letting them know as much info as you can about anything you notice as far as things that make it better or worse (even slightly) or any patterns you notice. I guess I just figure the more info/clues that I can provide to my doc about what's going on, the better able they are to understand what's happening and find an effective treatment.

Like I said, I know you are looking for anything that will help, but an ileostomy is a huge deal. A surgery that would only be done if doctors determine that the colon is definitely without a doubt the cause of the problem and that nothing can be done to help make things better. Sorry to dash any hopes you had of a seemingly easy fix, but I would be surprised if that turns out to be the answer to your problems. I know I had high hopes at first that surgery would fix everything, but even in my case, they know that I'd be better off keeping my healthy colon, continuing to do some form of a purge and taking meds, rather than removing it and chancing that I wouldn't have further problems. I'm still trying to wrap my head around going thru all the surgery and having a high probability that I will continue to have issues w/ constipation (although maybe not AS bad). The good thing is that there are tons of meds and combinations of meds, and new research will provide new options in the future. So again, there is hope that at some point, I will not have to do the purges anymore, and I will have a better life. For now, I do what I can to accept it, work closely with my doctors to figure out what's best for right now, and keep moving forward.

Sorry this is so long. I just felt like I could really relate and I might be able to help. The people on healing well are wonderful and will give you lots of good advice. Also try the IBS forum for advice too if you haven't yet. (The IBS forum sometimes tends to be a little slower paced, but give it a shot. Just try to be patient!)

Take care and please let me know if you'd like to talk some more or if I can help in any way.

Post Edited (Sunny13) : 12/4/2014 2:38:30 AM (GMT-7)

I am scheduled for a loop (reversible) ileostomy on 5/5/15.

I have a lot of problems, but neither my GI nor my surgeon has told me why the ileostomy is necessary, what it will accomplish, or what needs to happen before it can be reversed.

I was diagnosed with Crohn's in 1991, but it's been in remission since my bowel-re-section in 1998, and for roughly a year, I've been having problems with fecal incontinence, abdominal pain and fatigue, which is why I saw my GI.

I believe, based on what I could understand of my MRI results, that I have pelvic floor dysfunction and colonic inertia, though no one will discuss the results with me.

I am currently in the process of talking with as many specialists as possible and searching for second and third opinions. I refuse to undergo such an extreme surgery without even knowing why. I am very upset about the way my GI and surgeon have been dodging my questions. It doesn't give me a great deal of faith in them.

I have no idea whether or not an ileostomy would be beneficial to you (or to me, for that matter), but I do want you to know that Sunny13 was incorrect about something: an ileostomy does not mean the removal of your colon.

I had/have colonic inertial as well and a pelvic floor prolapse that was repaired and removal of the sigmoid colon. Things worked well after the prolapse repair for about three months then stopped. Later I was also diagnosed with pelvic floor dysfunction. I had an ileostomy on 11/11/13 and now a peristomal hernia that needs a repair. I have had two months of pelvic floor therapy and supposedly things work and I now know how to use my muscles correctly. Even though I have a chance for an ileo-rectal anastomosis I'm going to have a thorough discussion with doctor after my second defecography test to see if I want to do this. If the hernia is repaired, life with an ileostomy is not that bad. Initially before I herniated I felt like I got my life back and felt great! You do have to learn how to eat again and there are foods that are definite "no nos" because of the possibility of causing a blockage, but in general most people seem to live good qualities of life. There is even a triathlon being organized for August in Seattle from an ostomy support group for ostomates! There are also ostomy support groups that you can inquire about and do some visiting and research before hand. It's not a death sentence. Look at the United Ostomy Association home page and look under support groups. There should be a contact phone number so that you can visit a group and ask all the questions that you want. It takes everyone a different length of time to adapt but you will get through this and life will get better. Good luck and take care. I'd be happy to answer any questions you might have.