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Old 06-28-2011, 04:59 PM   #1
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Anyone considering surgery for internal rectal prolapse?

I had laparascopic ventral mesh rectopexy surgery for internal rectal prolapse (otherwise known as rectal intussusception) in 2009. If anyone else is considering this I might be able to offer some advice. I would also like to hear from others who have also had surgery for this type of disorder to learn how you are now?

 
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Old 06-28-2011, 09:11 PM   #2
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Re: Anyone considering surgery for internal rectal prolapse?

I have recently been diagnosed with an Internal Rectal Prolapse/Intussucception as well as a Retocele and probably uterine prolapse. My Colon/Rectal Specialist recommended Citrucel 2-3 times daily and it has helped my problem immensely. I suffered from the incomplete evacuation problem and straining which caused the excruciating pain from hemmorhoids and anal fissure. So far, the Citrucel is working but if it ever stops, my doctor says I would need a Colon Resection to fix the problem.

I am in the process of getting a 2nd opinion and further testing and I will delay getting the surgery as long as possible, too scary!

But I am curious, I see you had laparascopic ventral mesh rectopexy surgery, did you have other options for the condition? Did you see immediate improvement and no side effects? (I read some of the other thread, but not all of it, sorry) Thanks for any information you might have.

 
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Old 06-29-2011, 01:21 AM   #3
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Re: Anyone considering surgery for internal rectal prolapse?

Rufous57, I too have found Citrucel (also called methylcellulose/celevac) to be very helpful. Who diagnosed you with Internal Rectal Prolapse/Intussucception and recommended re-section? It wasn't Deya Marzouk, was it?

Idkwia, I am considering ventral mesh rectopexy surgery for internal rectal prolapse. In my case this was initially diagnosed as IBS which I believe is a very common tale. I too would be extremely interested to hear from others who are considering surgery for internal prolapse, or who currently have "IBS" with a suggestion of prolapse.

 
Old 06-29-2011, 05:33 AM   #4
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Re: Anyone considering surgery for internal rectal prolapse?

Rufous57 - I am pleased to hear that Citrucel is working for you. I assume you are in the US if you are using Citrucel because here in the UK it is called Celevac.
I would also suggest you look into getting some Biofeedback to help you manage your condition conservatively.
There are many surgical procedures for this condition. The reason for this is because none of them are 100% successfull and so if you have to consider surgery I would suggest you do your research and seek more than 2 opinions from surgeons because opinion is divided.
In my own operation I was out of hospital the next day and recovered with little pain quite quickly. My issue is not fully resolved as there may be other facotrs going on elsewhere in my gut. I may also have a further problem in the sigmoid but this is still to be confirmed.

 
Old 06-29-2011, 08:30 PM   #5
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Re: Anyone considering surgery for internal rectal prolapse?

Quote:
Originally Posted by rmac2912 View Post
Rufous57, I too have found Citrucel (also called methylcellulose/celevac) to be very helpful. Who diagnosed you with Internal Rectal Prolapse/Intussucception and recommended re-section? It wasn't Deya Marzouk, was it?

Idkwia, I am considering ventral mesh rectopexy surgery for internal rectal prolapse. In my case this was initially diagnosed as IBS which I believe is a very common tale. I too would be extremely interested to hear from others who are considering surgery for internal prolapse, or who currently have "IBS" with a suggestion of prolapse.
Hi rmac2912,

For the moment, the Citrucel is working for me. I live in the United States, I am on the West Coast about 20 miles North of Seattle, WA. I was diagnosed by a Dr. Hibbert in Seattle. He did a digital rectal exam, which was excruciatingly painful, I almost passed out! I was sent to see him for a problem with hemmorhoids and a fissure, the last thing in the world I was expecting was to be told I had an Internal Rectal Prolapse/Retocele and Prolapsed uterus, and would need surgery... But after the exam, I went blank and could not absorb anything the doctor was trying to tell me... I went home and then called his nurse and asked her to read my case notes, which she did and it all made sense. The questions he asked, I could tell he knows his stuff. I have lots more to look into, I am getting some 2nd opinions and exploring all options. I am new to this type of medical problem, I only became aware of it in May.

 
Old 06-29-2011, 08:41 PM   #6
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Re: Anyone considering surgery for internal rectal prolapse?

Quote:
Originally Posted by idkwia View Post
Rufous57 - I am pleased to hear that Citrucel is working for you. I assume you are in the US if you are using Citrucel because here in the UK it is called Celevac.
I would also suggest you look into getting some Biofeedback to help you manage your condition conservatively.
There are many surgical procedures for this condition. The reason for this is because none of them are 100% successfull and so if you have to consider surgery I would suggest you do your research and seek more than 2 opinions from surgeons because opinion is divided.
In my own operation I was out of hospital the next day and recovered with little pain quite quickly. My issue is not fully resolved as there may be other facotrs going on elsewhere in my gut. I may also have a further problem in the sigmoid but this is still to be confirmed.
Hi Idkwia,
Yes, I am in the US, and for the moment, the Citrucel is working for me. I am just beginning to understand the nature of this conditon. I appreciate these type of threads, it helps those of us who don't know anything, so thank you for starting the thread and others too... I thought I was going to have a surgery to repair hemmorhoids and a fissure, the last thing in the world I expected was to hear that I would need surgery for an Internal Rectal Prolapse/Intusseception... My prolapse is related to the hemmorhoids and fissure because it causes my sphincter muscles to contract rather than relax and interferes with peristalsis. I was diagnosed in May of this year and I am trying my best to learn what my options are. I fully intend to get 2nd and 3rd opinions, I have to wait to see my Gastroenterologist and I will definitely look into biofeedback. I doubt my small town has that resource available, but I would hope I could find someone to help me in Seattle.

Was your doctor a Colon/Rectal Specialist? Do you think your unresolved issues are due to the surgery or totally unrelated?

 
Old 06-30-2011, 10:35 AM   #7
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Re: Anyone considering surgery for internal rectal prolapse?

Quote:
Originally Posted by rufous57 View Post
Hi Idkwia,
Yes, I am in the US, and for the moment, the Citrucel is working for me. I am just beginning to understand the nature of this conditon. I appreciate these type of threads, it helps those of us who don't know anything, so thank you for starting the thread and others too... I thought I was going to have a surgery to repair hemmorhoids and a fissure, the last thing in the world I expected was to hear that I would need surgery for an Internal Rectal Prolapse/Intusseception... My prolapse is related to the hemmorhoids and fissure because it causes my sphincter muscles to contract rather than relax and interferes with peristalsis. I was diagnosed in May of this year and I am trying my best to learn what my options are. I fully intend to get 2nd and 3rd opinions, I have to wait to see my Gastroenterologist and I will definitely look into biofeedback. I doubt my small town has that resource available, but I would hope I could find someone to help me in Seattle.

Was your doctor a Colon/Rectal Specialist? Do you think your unresolved issues are due to the surgery or totally unrelated?
The surgeons I saw were all colorectal specialists. This is a very complex part of the body and there is a lot of things yet to be learned about it. I don't think my unreolved issues are due to the surgery. There is a possibility that at least some of my issues are due to a problem higher than the rectum, perhaps the sigmoid, but as I said this is a difficult part of the body to access properly.
What is it that causes your sphincter to contract, is it the prolapse or the haemorrhoids and fissure? I understand that biofeedback is very good for retraining the muscles but a lot depends on the skill of the person treating you.

 
Old 06-30-2011, 10:40 PM   #8
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Re: Anyone considering surgery for internal rectal prolapse?

I totally agree, the whole process is extremely complicated - there's so much that even the doctor's don't understand about the human body! What kind of symptoms are you experiencing?

Have you had the dynamic MRI and defacography done? (I have not yet had these tests done) My doctor said an Internal Rectal Prolapse could easily be missed on a colonoscopy, which explains why my GI didn't see it. He did not order the 2 tests because he feels confident of his diagnosis via the digital rectal exam.

To tell you the truth, I do not recall the exact explanation as to why my muscles contract rather than relax; I was in such a state of shock and pain from the exam, I missed many parts of the conversation. He did mention pelvic floor training, and as I also have a retocele, that may be affecting my problem.

 
Old 07-01-2011, 02:01 AM   #9
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Re: Anyone considering surgery for internal rectal prolapse?

Rufous, regarding your muscles contracting rather than relaxing, was that described to you anismus? I had never been told by a doctor this muscle contraction of the sphincter could happen as a consequence of rectal structural abnormalities, but had theorised that might be the case, so am interested to hear you say that.

Have they advised that you try a rectal irrigation system before resection?

 
Old 07-01-2011, 03:09 AM   #10
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Re: Anyone considering surgery for internal rectal prolapse?

Hi everyone
I'm migrating over from the previous thread, with some thoughts to share on both surgery and conservative measures, that I gathered from a really useful session I had this week with a nurse consultant specialising in colorectal problems (Theresa Porrett at Homerton, who has an excellent reputation for helping people with our condition without having to resort to surgery.)

Hi to Rufus - really interested to hear of your story though I'm sorry to hear you are also having such problems with pain. Do you know whether the lap rectopexy with resection is going to use mesh to support the anterior wall (the new Laparscopic Ventral Mesh Rectopexy, which is now used at several centres in the UK)?

(Quick recap for newcomers to the thread. I have an internal rectal intussusception and rectocele, with accompanying moderately severe perineal descent and some unilateral pudendal neuropathy; more recently I've been experiencing bladder frequency; but no continence issues on either side. The intus is the main cause of my symptoms, which is obstructed defecation/incomplete emptying, and I have to do a lot of manual evac (ughh!). The problems are a result of pregnancy/childbirth (2 daughters aged 5 and 2 now) and I have no previous history of bowel problems. I've tried some biofeedback, used rectal irrigation for extended periods, glycerine suppositories & dietary changes, and have seen several leading UK surgeons/teams including Iain Lindsay (LVMR specialist) and Deya Marzouk (sigmoid resection rectopexy specialist) and the team at St Mark's bowel hospital.

Phew..!

I felt I'd probably exhausted the options for conservative treatment, and that I would have to take my chance on surgery, which I remain somewhat nervous about, even though I know it's almost inevitable for me.)

apols in advance for what is likely to be a fairly lengthy post, but this was one of the most useful appointments I've had for some time, with lots of interest/hope for me and, hopefully, perhaps for others too, whether they're considering surgery or haven't had the success from surgery that they wre looking for.

The first surprise for me was that Theresa has changed her views on surgery for internal rectal prolapse. Historically, homerton - along with many colorectal surgeons - have been fairly sceptical about the benefits of surgery for rectoceles and internal rectal prolapse. Her view was that the older operations were not only often unhelpful in large numbers of people, but also carried significant risks of making things worse by causing even more damge to the pelvic floor structures - tilting the uterus, worsening bladder prolapses etc.

She feels the new ops - like LVMR - are a very different proposition, as apart from the greatly imprved outcomes in a greater proportion of patients, even if they don't they don't seem to carry the risk of making things worse. She now thinks considering surgery, when conservative measures aren't doing enough, is perfectly reasonable.

This is a fairly big shift in opinion and I think supports the view, which we've heard elsewhere, that there's something of a paradigm shift going on in surgery for internal prolapse. This new approach to surgery is substantively different, in approach, outcomes and risks, to the older types. It also strongly suggests to me that if your'e considering this, you should aim to find a surgeon who is very experienced in the new techniques such as LVMR.

(NB, we didn't have time for me to talk about sigmoid resection rectopexy, so I'm not sure what her view on that is)

But she also offered some useful info on conservative measures, which I'll attempt to summarise:

First big surprise to me was her theory that imcomplete emptying, if it results in repeated trips to the toilet to try to expel what's left behind, can of itself cause the prolapse to worsen. This is because both sitting on the toilet, whether you're straining or not, and the involuntary nerve signals that the bowel sends to the brain when it thinks there is something it needs to expel, result in both an increase in intraabdominal pressure and blood to be sent to the rectal tissue, which combine to push any intussusception further down.

So her main objective is try to ensure you can a) expel enough in one go to not need to go back - more on that in a moment
or b) if you can't, try to limit the follow up trips to the toilet and learn to tolerate the sensation. That way, it interferes with the bad nerve signal habits, and gives the prolapse a chance of contracting back up a little, which then becomes a virtuous circle rather than a vicious one.

It's an interseting and fairly plausible theory to mea s I'd been wondering lately why, when I have a few days when I'm away from home (work, holiday etc) and can't do endless toilet trips, I find the symptoms generally seem to improve; and when I'm at home for a few days, able to access the toilet and no distractions from the sensations, it can quickly get into a downward symptom cycle. I'd previously assumed it was purely psychological - about distraction; but this lends another dimension.

But we all know that it's really hard to ignore the fact that you've not completely emptied, so how to improve the emptying in the first place?

First, she's suggesting I go back to using a psyllium husk supplement, but just at night, to try and alter stool consistency so that it's not quite so soft and has a better chance of making it out of the body before the kink between the rectum/sigmoid can block part of it off. Sorry for the ikk factor there but no nice way of putting it...

Secondly, she says glycerol suppositories can be used more than once a day without causing problems. But she also suggested I use stimulant ones, such as Micralax, though from time to time rather than daily, as they stimulate the whole lining of the rectum and are more effective at clearing things out.

As to rectal irrigation (Peristeen), she noted that the changes that Rrmac and I have found over time to how well your bowel works naturally are quite common and not a problem in themselves. It happens because peristeen clears you out by flushing, your bowel doesn't rely so much on peristalsis, so it gets a bit lazy and often a long period of use, you find you can't pass so much naturally.

So, her recommendation was to keep all 3 options - irrigation, suppositories etc, as an armory that you can use as appropriate to try and achieve reasonably decent emptying first or second time round.

she's also limited me to a maximum of 2 follow up toilet trips (ie after the first one of the day in the morning) a day! This is going to be a challenge, but I'm going to try to stick to it for a while and see whether I can get into that virtuous circle again.

Last of all, and of particular relevance to those with possible pudendal neuropathy...

I'm about to start, at the Homerton, an innovative treatment called percutaneous neuro stimulation (I think that's what it's called - I can't find my referal letter). This has been developed by Homerton Hospital with the Royal London - both centres of bowel problelm excellence, and is proving rather effective.

It's a less invasive/expensive way of providing sacral nerve stimulation (SNS), and involves stimulation of the nerve on the tibia (ankle), which is known to replicate the effects of (SNS). It was developed initially for bladder continence problems caused by nerve damage in the sacral plexus, but women who also had obstructed defecation were reporting that had also improved.

They aren't sure why it seems to improve symptoms of obstructed defecation, just that it sometimes happens. Theresa's view was that while it can't actually 'unstretch' my pudendal nerve, it may indeed be able to help it work better in its current state

And, as it's low risk, and may also generally help with my bladder frequency and help tone up my pelvic floor before surgery, it's definitely worht a try.

So I'm starting my 12 week, weekly, sessions next Wed, and will let you know whether it makes a difference.

In summary, I left feeling that if I end up needing surgery, there's a good chance it will help, or at least not make it worse. And that in the meantime, there is quite a lot I can try which may make things easier to manage day to day. Finally, I'm moderately hopeful that the nerve treatment may improve both my bowel and bladder issues to some extent.

Sorry, that was a huge posting. But hopefully some useful scraps of info for people and some new tactics to try

All thoughts and suggestions welcome and gratefully received!

 
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Old 07-01-2011, 08:41 AM   #11
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Re: Anyone considering surgery for internal rectal prolapse?

Quote:
Originally Posted by rufous57 View Post
I totally agree, the whole process is extremely complicated - there's so much that even the doctor's don't understand about the human body! What kind of symptoms are you experiencing?

Have you had the dynamic MRI and defacography done? (I have not yet had these tests done) My doctor said an Internal Rectal Prolapse could easily be missed on a colonoscopy, which explains why my GI didn't see it. He did not order the 2 tests because he feels confident of his diagnosis via the digital rectal exam.

To tell you the truth, I do not recall the exact explanation as to why my muscles contract rather than relax; I was in such a state of shock and pain from the exam, I missed many parts of the conversation. He did mention pelvic floor training, and as I also have a retocele, that may be affecting my problem.
I have had two defecating procotgrams but not a dyanamic MRI although this is something I am looking in to.

You can have anal manometry tests which can probably tell you if your anal sphincter is working properly or not.

 
Old 07-02-2011, 09:50 PM   #12
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Re: Anyone considering surgery for internal rectal prolapse?

Quote:
Originally Posted by rmac2912 View Post
Rufous, regarding your muscles contracting rather than relaxing, was that described to you anismus? I had never been told by a doctor this muscle contraction of the sphincter could happen as a consequence of rectal structural abnormalities, but had theorised that might be the case, so am interested to hear you say that.

Have they advised that you try a rectal irrigation system before resection?
rmac2912, thanks, I would have to call my Colon/Rectal Specialist's nurse to see if that term was mentioned; I was in bad shape when the doctor was explaining these things to me, I wasn't really listening carefully I am afraid. He did say my muscles contract rather than relax and that's what causes the pain. I will explore all options before any surgery, at this point, rectal irrigation hasn't been needed. The Citrucel is taking care of the problem at the moment.

 
Old 07-02-2011, 10:04 PM   #13
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Re: Anyone considering surgery for internal rectal prolapse?

Quote:
Originally Posted by idkwia View Post
I have had two defecating procotgrams but not a dyanamic MRI although this is something I am looking in to.

You can have anal manometry tests which can probably tell you if your anal sphincter is working properly or not.
I have a feeling that is down the road for me, thanks. I also feel this is somehow tied in with my blader problems and retocele also. Will be seeing my gynecologist this next week.

 
Old 07-03-2011, 05:30 AM   #14
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Re: Anyone considering surgery for internal rectal prolapse?

Hackneymum - thanks, once again, for a really useful post. Very interesting, and reassuring, to hear you say Theresa Porrett has changed her views on surgery. This has been my experience with a few people in the last year also. I think that is very reassuring. I agree about the finding the experienced surgeon thing and that is why I have only ever considered Oxford or Bristol for LVMR. More places have started doing it in the 18 months since I first read of it for sure.

It was also interesting to hear what she had to say on conservative measures and I'm glad to hear you feel she might just be able to help you. I get the impression (based on the success rates given for some "biofeedback" in the literature) that some people's ob. def. problems are very amenable to biofeedback and some are not. One Glasgow physio I saw told me she feels some people's bowels used to function to overcome their prolapses, which may have been there for a while, and now they don't, but they can sometimes be retrained to function to overcome anatomical fault. Now, no biofeedback I ever tried may the slightest, tiniest bit of difference to my symptoms..and I need so many hours of "build up" each day to be able to go to the bathroom..that I have this funny feeling that I really do have some very marked physical block to co-ordinated defecation. But I once came across a girl who said biofeedback had improved her ob def symptoms massively..and so, I wonder if what my Glasgow physio said is bang on the mark for a proportion of people with ob. def....meaning that there is always a chance some biofeedback might help you avoid surgery.

I'd like to ask you about the biofeedback.

You said Teresa Porrett told you that "incomplete emptying, if it results in repeated trips to the toilet to try to expel what's left behind, can of itself cause the prolapse to worsen. This is because both sitting on the toilet, whether you're straining or not, and the involuntary nerve signals that the bowel sends to the brain when it thinks there is something it needs to expel, result in both an increase in intra-abdominal pressure and blood to be sent to the rectal tissue, which combine to push any intussusception further down"

This has been my exact worry for the last year and a half. A few of the colorectal surgeons did not even seem to pick up on the concept of ob. def/incomplete emptying symptoms in themselves actually causing prolapse, but because I was so young when I got this I thought the incomplete emptying causing a prolapse (with an additional, unknown factor causing the IE in the first place) was more likely that the other way around in me-and by implication plenty of other people too, and I'd read that prolapse could be caused by long term intra abdominal pressure in a few papers, so that is why I grilled the surgeons on this point. I was finally starting to feel more reassured that I was being too paranoid about the concept of I.E. being the cause of prolapse rather than the other way around!..probably cos one of the experienced CR surgeons said to me (I'm paraphrasing) that having ob. def and IE and prolapse was too much of a co-incidence for the prolapse not to be the likely cause of the IE. The thing is, it is the nurses and physios who, while not always being the same academic high flyers as the docs, actually have the time and inclination to listen more carefully to their patients, and it often seems to me that they are more considered when discussing these issues, so what this lady said to you really makes me pause for thought. I guess the mostly likely scenario here might be a vicious circle with the IE and prolapse worsening each other...among the 40% of patients who improve but are not cured post LVMR, there could be many who actually had IBS-type incomplete emptying as the cause of a rectal prolapse which simply made things worse..meaning that internal rectal intussusception is only the root cause of ob. def in a minority...in theory that is.

..but, I would like to ask you...did Teresa Porrett start emphasising this point to you herself, or did you ask her about the concept of the symptoms themselves causing prolapse?

It is interesting to hear that your symptoms improve when you cannot do repeated toilet trips and does make it sound like her ideas are worth a shot for you.

She mentioned "the kink between the rectum/sigmoid ". The existence of such a kink in many of us is something we've often debated on these boards of late. Did she expand on this at all?


Finally, I was extremely interested to hear of the new, less invasive SNS type "percutaneous neuro stimulation" offered to you at Homerton. I hope Grambar read of this one too.

Apologies if I have asked this before, but how were you diagnosed with "pudendal neuropathy"? Was it during the "ano-rectal physiology" tests - the ones with the probes, where they check for sphincter damage etc.?


Looking into this I see that "dysregulation of the autonomic nervous system may play a major role in the development and perpetuation of irritable bowel syndrome (IBS) symptoms." and " Recently, several reports have demonstrated that percutaneous electrical nerve stimulation (PENS) of spinal or peripheral nerves alleviated symptoms in other conditions believed to arise from autonomic nervous system dysfunction. "..it may well be stimulation of a different nerve, but that is interesting.

You said it involved " stimulation of the nerve on the tibia (ankle), which is known to replicate the effects of (SNS)". .." developed initially for bladder continence problems caused by nerve damage in the sacral plexus,"

...interesting that there is again this bladder link, as you have mentioned that your bladder symptoms have become more and more distressing to you. I too have some bladder dysfunction and most definitely link it with the progression of my bowel problems. I am quite certain that the more distended my abdomen is (and it is always distended), the more difficultly I have emptying my bladder and the more frequently I have to pee! So I agree that they are linked, for sure. Is this due to a shared relevant nerve damage, or does the bowel simply put pressure on the bladder? I do not know. One phyiso I saw got me to monitor the no. of times I had to pee in one day and I clocked up 40! The thing is this doesn't actually bother me, apart from being quite embarrassing socially with friends who have not known me for that many years(!), because it is so minor an inconvenience when compared to my bowel distension and discomfort. But I did mean to mention to you the fact that while I, like you, had absolutely perfect bowel health for the 1st 20 years of my life, I actually started getting bladder problems when I was 9..I remember being sent off to consultants cos I'd started having to pee so often (sorry for all the TMI!)...they never found out why, but it got alot better though it never totally went away, then of course got a bit worse again once I got the bowel problems. I'm detailing all this cos I am beginning to agree with you and others about there being some real link with bladder and bowel neuropathy...that nerve treatment does sound promising, so good luck with that.

Oh, and also, did you decide whether you were going to get an MRI scan, and see if that told you anything? Apologies if I asked you that before.


rufous57, I am really glad the Citrucel is working so well for you. That is called Celevac in the Uk and also worked really well for me - much better than any other med or supplement I have ever tried, in fact. Hackneymum, I did find it to be far superior to Pyillisum, but everything seems to work differently for different people with this disorder.


Finally, I would really like to encourage other users and not-yet users of this board who are reading this thread to contribute - anyone who has a rectal/small bowel prolapse or suspects they might have one, even anyone who has very persistent IBS-C like symptoms or "obstructed defecation" like bowel dysfunction...your experiences and opinions would be greatly welcomed to this ongoing discussion which I think has proved very useful to some of us on the healthboards so far.

 
Old 07-03-2011, 08:10 AM   #15
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Re: Anyone considering surgery for internal rectal prolapse?

Hi all
I've only got time to do a very quick reply to the two responses to my posting before I go out for the day, but I just wanted to clarify a couple of areas, especially in Rmac's
response.

Rmac, Theresa mentioned her theory that incomplete emptying in itself can worsen a prolapse of her accord near the start of the consultation. When giving her my potted history, I'd told her that I thought it had got worse over the last couple of years, in the context of my describing that I have to do a fair bit of manual evacuation over the course of a day.

My initial response to her remarks was one of anxiety - the idea of incomplete emptying making it worse, in a vicious cycle, was something that really worried me. And knowing your concerns about the cause and effect element, I can understand why my report of her comments could worry you too.

I did quiz her a bit more about it (she was good enough to extend a 15min slot to nearly 45mins for me) but we didn't get to go into as much detail about this as I might have liked.

But I didn't get the sense that she was going quite so far as to say that the simple fact of having stool lodged higher up, due to incomplete emptying, causes the prolapse to worsen in and of itself

what she seemed to be saying was that it's more the attempts to shift it, with repeated toilet trips, the sitting, trying to go etc, that causes the problem. Her emphasis was very much on trying to break the habit of repeated multiple toilet trips, and if there's still some stool left after an 'intervention' - suppository, peristeen, whatever - has failed, trying to habituate yourself to the sensation.

I also think you're right that nurses and physios do have a lot more understanding of some factors, including the challenge of managing the interventions on a daily basis, than clinicians. On the other hand, in this particular field, each health prof you meet - nurse, surgeon, whomever, seems to have their own slightly different theory on cause, effect, what works and what makes it worse. And I'm not sure that Theresa's theory is any more likely to be 100% right than Marzouk or Lindsay or Dixon. I guess only time will tell, and meanwhile here's us lot trying to make decisions that will affect the rest of our lives...

And, I guess as ever I'd caution not to read too much into my simplification/possible misapprehension of her theory on this one - I've probably misunderstood elements of it! But I hope to see her again and will cotinue to probe and pass on...

re: biofeedback, she's not actually putting me on a course of this for the time being. I've had a course of it at St Mark's, which she regards as the gold standard, and I know that with my current symptoms, it doesn't offer me so much. the main new intervention for me is going to be the Percutaneous TENS.

Which, sadly, is now even more necessary in my case, since yesterday I had yet more grim pelvic floor health news, when I opened an envelope to find my urogynae had casually sent a copy of the results of the biopsy I had alongside my cystoscopy 2 weeks ago. I was expecting to get the results in person from him, but he'd already told me he didn't think I had interstitial cystitis (IC) and had only done the biopsy as a precaution to exclude it. I'd been enormously relieved about that, since it's really not a great condition to have, especially as it commonly progressively worsens over time and can be extremely painful. Anyway, the biopsy evidently suggests that I probably do have IC after all, just at so early a stage that I don't have the visible changes in the bladder wall yet.

I'm a bit devastated about this but trying to retain an open mind about a) the fact that thiss is another area where there is sudden new interest after years of nothing availble and b) the possibility of getting some help via this course of PTENS I'm about to start for my ODS, which was in fact developed in part to help with IC; and maybe some other more holistic means. The anti-cholinergic drugs sometimes used to treat it are probably not going to be an option for me because they tend to induce constipation.

Thank you, once again, to the designer of the female body. or at least, my female body. great job

Anyway, so be it. I'm making a big effort to keep in mind what's good about my life, even if my pelvic floor is a total disaster zone. Will let you know how I get on with the mental and physical sides...!!

If people are interested, perhaps I could start a separate thread about the bowel/bladder related aspects?
xx

 
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