Intussusception, enterocele and rectal prolapse can I avoid rectopexy?

Submitted by Foxface on January 25, 2015 - 5:19pm
Body: 

Hi Ladies,

I am new here and hoping you may be able to give me some advice. I did actually join several months ago when I was looking for information on rectal and uterine prolapse, but only recently had my own full diagnosis. I am 25 years old, have never had children though this is the one thing of all of this which bothers me the most - hoping to be able to get pregnant and to carry and give birth to a child. For two years now, since I had a laparoscopy for endometriosis and a mild amount excised from my pouch of douglas I have had prolapse symptoms - for a long time I did not realise it was that for a long time, and it did take a while to convince my GP that I thought thats what it was and to refer me to a specialist. To cut a long story short the first female pelvic floor specialist I saw did a proctogram test and discovered I had an intussusception, enterocele and rectocele - she did not tell me this she just said my pelvic floor was a little stretchy, but she needed to refer me elsewhere for a further opinion as due to my age she did not know what to do about things, I have been somewhat of a mystery to many doctors with all my symptoms, my age and not having any typical reasons for prolapse.

Anyhow I have now months later seen a specialist privately who has looked over the xrays, proctogram MRI and colonoscopy I have had and says defiantly I need to have a ventral rectopexy. My bowel has telescoped down into my rectum, actually today for the third time it slipped right out about 2-3cm when I beared down to go to the loo. I have read about the correct toileting position here and have started trying it, but so far not having any more luck. I am so scared now and worried. I do not want to have surgery, but i cannot continue to live like this either, is my prolapse to far gone to be reversed or managed? Before last January I had never had constipation in my life before, and would not say I had excessively strained really ever, I suffered with loose bowel movements and would have to go very frequently but they would just fall out me so to speak. A year ago i began to have very bad rectal pain, constipation (even if it is very soft stool) rectal bleeding small amounts to begin with but in the last few months so much i have ended up in A&E on a drip. I can no longer splint to help move the stool through from my vagina which is stuck in my rectocele, I have to digitate the back passage because I can actually feel the full thickness prolapsed bowel (which from my colonoscopy was very thickened and inflamed) I can only pass stool with enemas or bisocodyl suppositories and bisacodyl tablets also sometimes to move things through, these days it is always soft, often liquid but still I cannot pass it without many trips to the loo with no success but when finally I can go I have almost no control over the liquid/soft stool at all. Its ruining my life - this weekend I have not been able to go out once as I have had so much pelvic pain and have been back scared I will soil myself if I do go out :(!!

I have seen a lot on this forum about retroverted uterus mentioned - can this cause prolapse or be a major factor? I have felt that my uterus may have a lot to do with my pain and symptoms, at least with my front ones for sure, but I feel as though my uterus is blocking my rectum to some extent - when i digitate I can feel it there - i'm sure it is my uterus because the pain I feel is uncanny. before my lap my womb was anteverted - 2 years ago, and on my MRI recently it was retroflexed (kind of bent over on itself) I tried to push both my GP and the colorectal (prolapse) doctor to tell me if this could be causing me any of my symptoms or if this had anything to do with my rectal prolapse but both acted like it was no big deal at all. I feel like it is a huge deal and I want to understand why it would have moved so much?!

I'm sorry for such a long message, and for my lack of enthusiasm right now, I am so exhausted with this its a lot of effort at the moment even to write this. One part of my brain wants to ring the hospital and say get me in for surgery tomorrow!!! because I just can't cope anymore. But the main part of my brain is telling me the odds are not good, this is not something anyone I know has ever had, and when I search online all i see is people talking about problems they have experienced since! I'm 25 years old and have the rest of my life ahead of me. I don't want to live like this for the rest of my life, but i also do not want to risk further complications and problems, and I want somehow to be able to have a miracle baby (I have endometriosis/possible adenomyosis and both my tubes are apparently blocked also). If anyone here has managed to reverse internal intussussception I would so much like to hear your story, because I am so scared of this becoming a medical emergency and having no choice left in surgery I am going to keep on reading this website and try it out, but I am worried it is already too late for me? *I have searched on here but not found one under 'intussussception' but not found any, I may have spelt wrong or I guess it may be called something different outside the uk?* Sending all who are struggling with pain today best wishes, it is amazing to see how christine is helping so many women!!

Forum:

Surviving60

January 25, 2015 - 5:33pm

Hi Foxface and welcome. The subject has been discussed on this forum on more than one occasion. Spelling may indeed be an issue, and in addition, I believe there are problems with the indexing on the search feature of this forum, because sometimes I need to use Google to find something that I know is here (sorry Lanny, but yes it's true). I will look and see if I can find you some posts. But meanwhile, I want you to absolutely positively say "no" to any kind of surgery, for the time being. It isn't going to improve your condition, something which I think you already know.

If you can adopt WW posture and begin to get the organs into proper alignment, not to mention the rest of your body from top to toe, things might start to get better. I don't claim to know much about this problem and it's possible that you will eventually want to do a consult with Christine. But for now, if you throw yourself 100% into the posture correction and get those organs forward into the belly so they aren't pressing on all the wrong things, you may start to see a difference. More later - Surviving

Foxface

January 25, 2015 - 5:41pm

Thank you for your quick response. It is comforting when I am feeling so low this evening, I will search and see if I can find any more information. I could not also find anything about the ventral rectopexy surgery they are saying I need. I will not go ahead with anything, I don't want to either but I am very scared about what might happen if I don't as this seems to be getting worse day by day. I will watch the video and start trying to do whole woman posture everyday. The doctor has said it is possible I may have an underlying disease or syndrome like a connective tissue disorder which has caused this, but I also no nothing of this, I wonder if any other whole woman who have experienced prolapse very young have also any of these problems? Thanks so much, I will try to remain positive and keep researching the whole woman ways xx

Aging gracefully

January 25, 2015 - 6:05pm

Hi foxface,
I can't speak on the prolapsed bowel into the rectum, because I have never experienced that, but I have had a retroverted uterus from a young age on. The pressure of the uterus pressing on the rectum did cause me trouble with having bowel movements, and I noticed from doing this work, it has been lifted off my rectum substantially. I also think my bowels were squishing their way down along with my pelvic organs. It was a wonderful feeling when everything started feeling more lifted and pulled forward into the lower belly, and bowel movements have been so much easier for me.
Maybe a consult with Christine would be helpful for you with your particular bowel issue. I am really not quite sure how that would come into play with all this.

Surviving60

January 25, 2015 - 6:44pm

I think this blog article of Christine's is one of her best, and would be a good read for you, Foxface.

https://wholewoman.com/blog/?p=948

Surviving60

January 25, 2015 - 6:52pm

Here is one:
http://www.wholewoman.com/forum/node/2278

cleo

January 31, 2015 - 8:20pm

I have the same as you. I was diagnosed with intussusception and a rectal prolapse. I was 56 years old and I have had this for years. I am now 67years old. No, I don't even mention this to my doctor. I was told by the colorectal surgeon my doctor sent me to I had this problem. The doctors in the hospital wanted me to have a rectopexy operation too. I cannot go to the toilet sometimes and other times I have loose stools. At the moment I am feeling constipated. I eat mostly vegetarian now with fish sometimes. I have had some wine and potato chips and I feel awful now. I have to stick to a decent diet but sometimes I have chips. It's making me a bit nauseas. I'm scared as I hardly ever see my daughter's baby who is now two. She has other grown children but I don't want her to know what I have wrong so she won't worry. I never tell my sons or family anything. My husband of course knows. He doesn't know what I should do and neither do I. Anyway I won't not have an operation myself but I hope you stay on this site to get some help. Doctors cut our muscles and I believe then we are worse. I hope this makes sense. I have tried water but I'm having to go to the toilet to pass waterworks too much if I continue this way. I need help sometimes but I won't talk to doctors about this anymore as I'm trying to live without an operation.

cleo

January 31, 2015 - 8:56pm

My cousin had an operation for prolapse and the prolapse came back again. She was a nurse so she knows more than me about all this. I am writing to her soon so I will ask her how she manages so many holidays without giving up like me. This problem to me is embarrassing as I am always looking for a toilet. She is my age. In her sixties.

Surviving60

January 31, 2015 - 10:01pm

Cleo, if you are smart enough to avoid surgery, then you know more about prolapse management than your cousin the nurse. Being a medical professional and having a blind trust in doctors does not serve women well when it comes to pelvic health. - Surviving

BeingHuman

March 22, 2015 - 3:40am

Just wanted to check in and see how you're doing. I think we're in the same boat... I still need diagnostic tests to prove it medically but I have all the signs... I can't get anything out of me more than liquid BMs. Just prescribed Linzess and hoping that will make a difference, but no matter how good the BM is, it won't make a difference if there is something obstructing the exit hole! Kind of lost on what to do.. hope you're well...

Foxface

January 19, 2018 - 8:33pm

Thank you for all your comments. Cleo I am so sorry to hear how bad things have been for you. I really hope that you can find some relief from your symptoms soon. I found that talking to people about my difficulties was very hard at first but really helped me. I hope the more you talk about it the less embarrassed and the more informed you will be to help build your own recovery/management of this horrible stressful and life ruining condition.
Being human: I am also so sorry to hear of all your troubles. I have read through some of your other posts and it sounds as though you have been having a horrendous time with your bowels also. Some of your symptoms sound similar to mine and so I thought it may be of use to you and others to hear where I am now - please don't take this as advice to do what I have done, this is just an honest update which is unbiased towards surgery or whole woman only holistic approach as I am yet to be able to say if the surgery I have had has worked or caused me further problems and I hope sharing this will not cause any offence to others on this site, as I have made a decision I felt I had to for my own situation but I am not in any way denying the major risks I have taken in doing so.

So 3 weeks ago I had a laparoscopic ventral rectopexy. I opted to have this surgery because for several reasons I could no longer cope with my symptoms and my situation was very really becoming a medical emergency. I very much wish that whole woman was something I had know about years ago, or even just a year ago when I believe my own situation could have avoided surgery. I did not enter into this lightly whatsoever. I researched with vengeance all possible outcomes and all things which could go wrong, I saw 3 different surgeons, quizzed them at length and listened to all separate viewpoints in deciding what to do but ultimately I made the decision based on listening to my own body. I know one might say that because I went with a doctors fix in the end I was blindly trusting as surviving60 mentioned, and I agree with your terminology and the concern in doing this however I would argue that I was not blindly trusting. I weighed up all the information I had from many many sources including a wealth of good information from whole woman and decided to proceed with the surgery at my own financial cost. To briefly explain the seriousness - I was having extreme pain (so much so I could not do the whole woman exercises without crippling stomach pain), my bowel was full thickness externally prolapsing, I was loosing a scary amount of blood, everyday my symptoms were getting rapidly worse, I lost function over my bowel with leaking on top of the complete obstructed defecation. Anal physiology test confirmed that due to the fact my colon had telescoped down into my rectum and externally, my sphincter muscles were very very weak - the consultant commented this was bad even for a 70yr old (the average age they see with this problem) I am just 25. I paid for all my hospital notes, X-rays and proctogram DVD and studied all of this and I really felt that in order to try to get some quality of life back I needed to go for the surgery, correct toileting posture although helpful in taking offs strain could not for me put the 15cm of inflamed and bleeding colon back up into it's correct position - this fault I may have been born with, and when seeing the images I felt strongly that at this stage I had to risk surgery. The enterocele I had was also very problematic - my small bowel was fallen down through an obliterated pouch of Douglas (probably as result of bad surgery for endometriosis) and was trapped between my vagina and rectum causing pain and impossibility of sex - pain and bleeding as well as adding to my inability to ever have a normal bowel movement - despite probiotics, very healthy eating and correct toilet position.

Refreshingly the surgeon's I saw were all able to give me a wealth of information about the rectopexy with diet information and all the risks as well as benefits openly given for me to consider, my surgeon himself did not advocate kegels. I would not have entered into this if they proposed to use synthetic mesh - which can cause all sorts of horrendous issues. I have had biological mesh used - the structure holding my colon back into place is my own bodily tissue. This procedure does not cut the bowel at all it just lifts back up into place - therefore it avoids causing nerve damage and recovery is much quicker and better than resection. I was told (and I round down these figures as I have a chronic distrust for doctors) there is 70% chance of success rate. This is an across the board figure however. There is only 50% chance of pain improvement. I can say happily tho that despite initial bad pain/swelling etc and initial problem of my bowel being asleep for several days after surgery I do not have any pain with bowel movements now at week 3, I also no longer have obstructed defeacation, leaking, or my bowel coming outside of my body! I am taking probiotics, fibre supplements and using correct toileting as I must ensure I have loose bowel movements whilst I am still healing. But for the first time in over a year I have managed to have care free bowel movements everyday this week without using enemas or suppositories and a massive amount of laxatives - and even then I was still needing to manually remove stool!! I would just like to point out though that this is week 3 and I am fully aware that some people (I have been told 15% I would round that up to maybe 30%) have reoccurring rectal prolapses and a small percentage get worse complicated problems after (this is a lot more common with synthetic mesh for obvious reasons), so I still have a way to go before I can be sure this has worked and if anyone is interested I will keep updated at later date and honestly will share any problems I encounter.

I believe Christine's approach to correcting prolapse, is fantastic and despite actually having surgery I will be following whole woman now as the surgery will not 'fix me' it has in my eyes just given me a second chance with my bowel back up in it's correct position, and I must ensure I do not get a full thickness rectal prolapse again, and to continue to keep my bladder and womb prolapses in check - I am determined I will have a baby (I will have to have a c section but I am happy to take this option over the risks of strangulated prolapsed bowel again) and will never ever have a hysterectomy despite my endometriosis/adenomyosis also which doctors will continue to say means I will need one eventually!

I can't wait to continue on my path to feeling like a whole woman. I hope this has been helpful to anyone who is in a similar boat to mine and I hope this isn't offensive to anyone who persuaded me not to have surgery. Xx

Please see my update. Surgery failed with a year. Redo failed. Now have ileostomy and still mesh complications and complications from metal tacks used in op + nerve damage + sex issues.

Surviving60

March 25, 2015 - 10:32am

Hi Foxface - WOW, that is quite a story and it is very clear that you did your homework and did not enter into this lightly (as many do, who are not even remotely facing the challenges you have faced). I truly do hope that you will keep us posted on your progress; it is valuable information for women in your situation and it will help others make the right decisions for themselves. Wishing you a continuing recovery and all best possible things to come. Stay here with us!! - Surviving

BeingHuman

March 25, 2015 - 11:16am

Foxface I am so glad I checked in and that you were there to report back with such an amazing story!! I love the way you thoroughly went into this with eyes wide open and understanding the risks. My symptoms have intensified rapidly in a short amount of time and I would like to fix things before they get worse. I love the WW approach and have invested in the materials, but with intuss it just seems physically impossible to remove a very important obstruction/blockage element to the rectum by just posture and breathing! I am not sure if we are allowed to share email addresses but would love to ask you a few more questions directly. Wishing you a healthy and speedy recovery. Be well

gr8fl

March 25, 2015 - 1:19pm

for a speedy recovery. Thank you so much for sharing your story! I wish you all the best as you continue the healing process. gr8fl

mom30

April 1, 2015 - 1:41pm

thank you for sharing everything! keep us posted on how you're doing!!

Aussie Soul Sister

April 1, 2015 - 5:52pm

Foxface - thankyou for sharing,
Best wishes for a speedy recovery and success with your whole woman journey.

Aussie Soul Sister

Mamaoftwo

September 20, 2016 - 11:55pm

Hi there Foxface! You sound like a brave logical woman, and I hope you are still doing well post-surgery. Im wondering if you have any updates at all? I am hoping to learn from your experience as I have some of the issues you had before surgery (although not as severe!). Best wishes x

Foxface

January 19, 2018 - 8:24pm

Hi all, I am really sorry this has taken me so long to update. But it's not right I have left positive messages on here regarding rectopexy without following up properly. Only reasons I can give is that I went into dark places mentally with all that has happened. I certainly would not reccomend the surgery to others now. I have had a lot of problems since, I now have a ileostomy, and I also experience prolapses of the ileostomy much harder to manage 20cm of your small intenstine falling out of your stomach... :(. Initial results of rectopexy were good, lasted not long however as my previous posts mentioned it gave me wonderful feeling of correction for a short time. The complications from the mesh are not nice (understatement) and prolapse also returned. I'm really sorry for bad news re those suffering with rectal prolapse. It is really tough, I was in a terrible way, but even reading back how I was prior to surgery, and how I am now I would not go back and do it again. It's been traumatising. The problem with results are likely due to people like me, who were good for a short time. There is not enough or reliable long term evidence. I had a redo within 1yr and the redo made me even worse, then emergency stoma. Foxface x

Surviving60

January 20, 2018 - 10:30am

I am so very, very sorry to hear how all this has turned out. You put everything that you had into this decision. Given your situation, you had a right to expect that things would be better......once again let down by the medical establishment. You are brave and selfless to come back here and share your story. If it saves even one soul from jumping from frying pan into fire, it will be worth the effort and pain of telling your story.

One of the most insidious aspects of these surgeries is the way in which they are judged as successes or failures. If everything is still holding when you go back for your follow-up (and what is that, 6 weeks?) then it goes down in the books with a gold star and no one ever wants to hear what happened after that.

Thank you so much, Foxface, for coming back to report. Our forum, and the internet in general, are powerful avenues for the spread of information that doctors don't care to share. With lots of gratitude and hugs to you. - Surviving

Christine

January 20, 2018 - 12:08pm

Dear Foxface,

I am so very sorry to hear your story, and extremely appreciative that you would take the time to share your outcome with us. We will always refer others considering rectopexy to your story. {{{Foxface}}}

As it happens, my WW Practitioner Training class is today, and our lesson is on prolapse surgery. Of course we will be discussing your experience!!

Please understand, readers, that Foxface's severe bowel problem arose after surgery for endometriosis. As soon as I complete our new menopause program, I will address the condition of endometriosis, which I believe is caused by pathogenic bacteria.

For now, the reasons behind the conditions of bacterial vaginosis, sexually transmitted diseases, including HPV and HIV, and cervical cancer are clearly outlined in my inexpensive lecture, The Miraculous Self-Healing Vagina. This is vital information every woman needs to know. The subject of endometriosis will be added to this series.

Sending up prayers of peace and love for you, dear Foxface.

Christine

Lacy Ann

January 20, 2018 - 11:13pm

Major hugs to you foxface and your outstanding bravery! Wow! I'm speechless, my heart aches for you and yet I admire your deep courage in not only posting here, but mainly surviving all that you have!

everhale

January 21, 2018 - 11:23am

Thank you for sharing your story Foxface. I am deeply in awe of the courage and strength you must have to get up every day to live your life in spite of the pain and trauma you have experienced (and still experience). Please know that many of us are sending you healing energy, strength and encouragement. You are young, smart and determined so I pray you will find relief in non-surgical ways moving forward.
Best wishes, everhale