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Old 03-05-2013, 10:17 AM   #1
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Unhappy Peristeen Rectal Irrigation

I have been referred to a specialist nurse to go through what irrigation is and if i can use it to help me,though i must say i am not keen on it.I had a ventral mesh rectopexy in December 2012 and unfortunately not been successful to the point that i cannot use my bowel/rectum muscles to pass out stools.Its a nightmare and i feel awful.I am straining all the time wish causes me so much pain and discomfort and that is trying to pass soft stools.Does anyone have to do this and have they found anything at all that has helped them ie:irrigation or something else?

 
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Old 03-18-2013, 12:29 PM   #2
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Re: Peristeen Rectal Irrigation

Hi Petite50-I am in a similar situation to you. I am 2 months post-op for my second (unwanted-long story!) rectopexy for obstructed defecation, with no difference to my symptoms-lack of sensation or urge and inability to pass anything without suppositries and movicol. I had tried Peristeen briefly a couple of years ago, but found it a faff and couldn't get the hang of it. My consultant recommended I give it another try, as suppositries are having less effect, and I have sort of got the hang of it. It's time consuming, and uncomfortable, but I am getting some ok results with it. If you decide to try it, would be happy to let you know what works for me. Only problem I have found is sometimes not being able to pass all the water, which makes me uncomfortable and leaves me with a bit of a "sloshy" tummy! If your symptoms are awful it may give you some relief.It really isn't as bad as you think it's going to be, I promise. I'm sure you'll find the specialist nurse a big help. Mine was brilliant at St.Marks hospital, really positive and up-front.
Have you tried Glycerin suppositries? I have used these as the only way of passing any stool for the past eleven years, but they are not as effective since my last surgery. It might be worth giving these a go as they are gentle and easier to use. Good luck - I know how you feel. Wouldn't it be great to just be able to go to the loo normally. Think I'd rather that than win the lottery!

 
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Old 03-18-2013, 03:17 PM   #3
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Re: Peristeen Rectal Irrigation

Grambar, I was wondering if things had got better for you. You'll maybe remember I was assessing the risk of ventral mesh rectopexy several years ago - I had one and it made my problems much much worse, many times worse than before the op. I was expecting it may well not make me better- as had happened to you but not that it may make me worse.

What was the name of the 2nd surgery you opted for?

And did you ever get funding for SNS cos I hear that can actually work very well for some?

 
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Old 03-19-2013, 09:35 AM   #4
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Re: Peristeen Rectal Irrigation

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Originally Posted by rm212 View Post
Grambar, I was wondering if things had got better for you. You'll maybe remember I was assessing the risk of ventral mesh rectopexy several years ago - I had one and it made my problems much much worse, many times worse than before the op. I was expecting it may well not make me better- as had happened to you but not that it may make me worse.

What was the name of the 2nd surgery you opted for?

And did you ever get funding for SNS cos I hear that can actually work very well for some?
Hi rm212-I had a revision rectopexy, where they pulled up the back and front of the rectum, and my problems have got worse since then. With my initial rectopexy I had no improvement, but this is much worse. When did you have your rectopexy done? Wish I could say things improve with time, as the surgeons seem to think, but in my experience it doesn't seem to be the case - although it seems to be different for everyone. What's next for you in terms of treatment? Seems they're revising how they deal with some of our issues. It's so frustrating.
Some good news re SNS though - after a very lengthy battle with the PCT I have finally secured funding for a permanent SNS. Had to go to appeal, as was initially given funding for a temporary SNS, and despite some positive results was then turned down for a permanent one. I've lost track a bit with all that's gone on, but has probably taken at least two years from the initial application to get to this stage. Just waiting for a date now, so fingers crossed!
Petite50, have you had anymore thoughts on Peristeen?

 
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Old 03-20-2013, 08:39 AM   #5
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Re: Peristeen Rectal Irrigation

Grambar I am really sorry to hear that you worsened with the 2nd surgery you opted to have. It seems to be quite common for some people to worsen rather than improve and it makes it a real dilemma for us in assessing our options, doesn't it!

I had the same surgeon as you for the ventral op , which I had at Oxford.

Who did the 2nd surgery you opted for, can I ask? - was this in the big bowel Northwick park specialist hospital in London, rather than in Oxford? I understand you decided against the subsequent posterior starr, as have I. Also, did they give you further detail on the 2nd rectopexy you had, did they give it a name? There are so many types!

I am also weighing up further surgery although this will not be in the same place I had the 1st surgery! It is a really horrific decision and I think realistically now I will ultimately be facing a colostomy bag due to the effects of the 1st surgery, which I don't find at all easy to accept!

Well done on your persistence with the SNS. I am waiting for funding for this but I am not sure it willl come through. In what way did the temporary one help you - increased frequency, urge or volume?

Petite50, although the peristeen system initially seems very intrusive to use and takes a bit of getting used to in its operation, it can work extremely well for many people and give them back more control over their lives.

 
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Old 03-21-2013, 01:24 PM   #6
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Re: Peristeen Rectal Irrigation

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Originally Posted by rm212 View Post
Grambar I am really sorry to hear that you worsened with the 2nd surgery you opted to have. It seems to be quite common for some people to worsen rather than improve and it makes it a real dilemma for us in assessing our options, doesn't it!

I had the same surgeon as you for the ventral op , which I had at Oxford.

Who did the 2nd surgery you opted for, can I ask? - was this in the big bowel Northwick park specialist hospital in London, rather than in Oxford? I understand you decided against the subsequent posterior starr, as have I. Also, did they give you further detail on the 2nd rectopexy you had, did they give it a name? There are so many types!

I am also weighing up further surgery although this will not be in the same place I had the 1st surgery! It is a really horrific decision and I think realistically now I will ultimately be facing a colostomy bag due to the effects of the 1st surgery, which I don't find at all easy to accept!

Well done on your persistence with the SNS. I am waiting for funding for this but I am not sure it willl come through. In what way did the temporary one help you - increased frequency, urge or volume?

Petite50, although the peristeen system initially seems very intrusive to use and takes a bit of getting used to in its operation, it can work extremely well for many people and give them back more control over their lives.
rm212 I had my 2nd rectopexy done at Oxford-I went in for an Examination Under Anaesthetic and woke up to find I'd had a further (unwanted) rectopexy done. I was found to have a grade 4 prolapse, so the surgeon decided to go ahead and do a rectopexy. I'm not sure I would have gone down this route, but I was not given the opportunity to weigh up my options and make an informed decision.

As I understand it, they secured the rectum back and front this time, and although the surgeons congratulate themselves on an excellent result in my discharge summary, my symptoms are much worse! But I am hoping that once I have the SNS in place, if the rectum in back in it's proper place, then SNS will be more effective.

The temporary SNS did not give me any urge, but it did decrease the amount of time I spent emptying, and I had less pain and bloating. I had it for 2 weeks, had to fill in a bowel diary. My consultant felt there was enough improvement to go ahead with a permanent SNS and I hope that it will become more effective the longer I have it-2 weeks isn't really long enough to tell, but it would be impossible to have it for longer as it is so cumbersome. If you are waiting for funding, can I suggest you write to your PCT outlining, in graphic detail, how your life is affected on a daily basis. I gave details about how long I spent trying to empty my bowels every day and how much my social life and relationships are affected.I also gave details of everything I'd tried to alleviate my symptoms, including surgical procedures and biofeedback. I also asked my GP to write with details of how often I'd had to visit my surgery and of the numerous laxatives I'd tried, so that they were able to see that I had tried absolutely everything and that SNS was the only thing that had given me some relief. It's not a great time for funding with the changes in the NHS, but it's worth a go. I really hope you are successful.

Can I ask what other surgery you are considering? It seems the starr procedure is out of favour with some surgeons now, which is slightly worrying for those who opted for it.Have other options been discussed with you?

Like you, I feel I will end up with a colostomy one day and it's not a pleasant thought. However, I did see a colostomy nurse at St.Marks and she definitely made me feel better about it. I was able to look at the devices and ask questions, and I feel I would be able to come to terms with it if it happened. I might even wish I'd taken the decision years ago - I feel I have lost so much over the last 11 years, all for the sake of not being able to go to the loo!

 
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Old 03-21-2013, 02:01 PM   #7
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Re: Peristeen Rectal Irrigation

Your descriptions of what happened to you at Oxford are of very very great interest to me indeed. This is because I did not have one rectopexy operation at Oxford, but instead I had two at the same time! And AS I got so horribly worse my problem has been trying to find out which of these two operations made me worse!!

I wonder if the operation you had was the same as the 2nd of the dual procedures i had done. I think it quite likely that it was, because they seem to perform only a very limited number of operations at Oxford. This second operation i had at Oxford was a described as a modified orr loygue. Worsenings from this second operation would be due to nerve damage at the back of the rectum.

You asked what further procedure i am considering. I am considering a from of bowel resection, but i have not decided yet. You see, this resection is based on a premise that a certain aspect of the ventral rectopexy made me worse- and i am not certain it was the ventral op which did make me worse. One surgeon i saw felt sure the oxford modified orr loygue is the bit that made me worse, but the one who proposes resection feels sure it was the ventral op that made me worse.


So i would be very interested indeed to know whether you and i really did have the same operation. Your 2nd operation should have been named on your discharge letter to your gp- do you have a copy of this, or is there any chance your gp might give you a copy.

Your second operation was not consented which seems very unorthodox. Having heard many things now regrarding all this, i am assuming that it was Mr Lindsey who did your second operation, as well as your lvmr? He was the individual who performed my operations.

Regarding sns, that seems like very good advice and i thank you. The surgeon i saw who thought my orr loygue had damaged me said he thought sns often worked very well for nerve damage from orr loyge, so if we both had that, fingers crossed for us both in getting sns.

What a very valuable resource these boards are- i wish i could name the surgeons who treated me after i had finished with the gentleman at oxford but i am a little reluctant to go into full detail on a public board for their sakes.

As for petite50, please do give the peristeen a shot.

 
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Old 03-24-2013, 07:48 AM   #8
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Re: Peristeen Rectal Irrigation

Grambar:Thank you for your post back.Sorry i have not got back sooner.I am going to see specialist nurse about peristeen/enemas in May.I have tried using suppositries but they do not give me any relief,but i try them now and again just to get some evacuation from my rectum though even using them i am straining.I cannot stop that!!Can i ask how often do you use the irrigation system?I agree with you,winning the lottery pales into comparison.I would rather be health!!!

 
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Old 03-25-2013, 08:26 AM   #9
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Re: Peristeen Rectal Irrigation

Quote:
Originally Posted by rm212 View Post
Your descriptions of what happened to you at Oxford are of very very great interest to me indeed. This is because I did not have one rectopexy operation at Oxford, but instead I had two at the same time! And AS I got so horribly worse my problem has been trying to find out which of these two operations made me worse!!

I wonder if the operation you had was the same as the 2nd of the dual procedures i had done. I think it quite likely that it was, because they seem to perform only a very limited number of operations at Oxford. This second operation i had at Oxford was a described as a modified orr loygue. Worsenings from this second operation would be due to nerve damage at the back of the rectum.

You asked what further procedure i am considering. I am considering a from of bowel resection, but i have not decided yet. You see, this resection is based on a premise that a certain aspect of the ventral rectopexy made me worse- and i am not certain it was the ventral op which did make me worse. One surgeon i saw felt sure the oxford modified orr loygue is the bit that made me worse, but the one who proposes resection feels sure it was the ventral op that made me worse.


So i would be very interested indeed to know whether you and i really did have the same operation. Your 2nd operation should have been named on your discharge letter to your gp- do you have a copy of this, or is there any chance your gp might give you a copy.

Your second operation was not consented which seems very unorthodox. Having heard many things now regrarding all this, i am assuming that it was Mr Lindsey who did your second operation, as well as your lvmr? He was the individual who performed my operations.

Regarding sns, that seems like very good advice and i thank you. The surgeon i saw who thought my orr loygue had damaged me said he thought sns often worked very well for nerve damage from orr loyge, so if we both had that, fingers crossed for us both in getting sns.

What a very valuable resource these boards are- i wish i could name the surgeons who treated me after i had finished with the gentleman at oxford but i am a little reluctant to go into full detail on a public board for their sakes.

As for petite50, please do give the peristeen a shot.
I've never heard of the orr loyge procedure. What does it entail? All my discharge summary says is revision rectopexy - I'm hoping to get more information in a couple of weeks as I have a meeting scheduled. It was not Mr.Lindsay who performed my rectopexy this time round - he did the original, but it was one of his team.

It's so difficult trying to make decisions about these problems, as often the outcome is unknown, and can be so different for everybody. Also very hard for you when you have such different opinions from different surgeons. This is something I have found over the years - which one is right! There's not an awful lot of information out there, and these kinds of problems can be so varied. What a nigthtmare for you. I hope you can come to a decision you fell confident about. Best of luck and I do hope funding is forthcoming for SNS

 
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Old 03-25-2013, 08:34 AM   #10
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Re: Peristeen Rectal Irrigation

Hi petite50-not too long to wait to see your specialist nurse. Which hospital are you under? The nurses I have seen at St.Marks have been brilliant and very sympathetic and understanding. Do you mind me asking if you've had a diagnosis of anything?

I have been using Peristeen most days since I last saw my consultant about 5 weeks ago. I have had some pretty good results, and also times when it hasn't really worked. I have tried to persevere as my nurse had told me previously it may take a few weeks to see some improvement, and it's good to get into a routine with it. I hope you find something that helps. Do let us know what the outcome is. Glad you've replied, felt like we'd taken over your thread a bit - thought we might have put you off! Best of luck and keep us posted.

 
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Old 03-25-2013, 08:44 AM   #11
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Re: Peristeen Rectal Irrigation

Gramber
I have for many many years had a diagnosis of severe irritable bowel syndrome,which my doctor said is the cause of all my awful digestive symptoms.Though i do wonder!!I was diagnosed with rectal prolapse last year then had it operated on December 2012 which as you know left me so much worse off.I have wondered for years whether it has just been severe ibs as i have felt so unwell for so long and keep on consulting doctor after doctor in the hope they find exactly what is causing everything.I dont think ibs should make me feel like this day in day out for so many years.Anyway,i am hoping to get some sort of help through specialist nurse in May,fingers crossed!!but staying open minded,i think you need to.I am also going to try hypnotherapy again and maybe biofeedback.

 
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Old 03-25-2013, 08:59 AM   #12
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Re: Peristeen Rectal Irrigation

Grambar, thanks so much for getting back, as your info is really useful to me.

The orr loyge they do at Oxford as it, was explained to me, is a modifed version of the older type of orr loygue rectopexy. It involves what was described as a very small amount of dissection at the back of the rectum. II could go into more detail here but it may not be suitable for the public open part of a this useful forum. In priniciple, it is thought that damage to nerves at the back of the rectum is responsible for some of the consitpation problems which can develop after rectopexy. Oxford believe that if you only dissect down a small way at the posterio as with the modifed orr loygue, you will avoid these nerves, and thus, constipation will not worsen. They believe that the ventral op will of course avoid constipation as it is ventral. Sadly, this has not been my experience.

It is possible this nerve damage is why I got worse though as i say I do not know, it may have been the ventral op. Finding out which of the ops I had is likely to have made me worse is very important to me but I am having a very difficult time determining this as I was stupid enough to have both together at the same time!!

If you could ask them whether this op you had was indeed a modifed orr loygue when you see them, I would be very interested to here this. I wouldn't be too accusatory about it, you know what these guys are like, but at the same time, we have to find out what was actually done to us to have the best chance at getting better I feel! I will look here for your reply or look out for it elsewhere on the board if you are OK with this. Thanks so much.

 
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Old 03-25-2013, 09:08 AM   #13
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Re: Peristeen Rectal Irrigation

I had the ventral mesh surgery at Oxford Grambar and I have since learned a number of important things about this surgery. †It would seem that they are very keen on these operations at Oxford but other surgeons are seeing problems caused by these operations and are thinking about how to fix them. †

These surgeries are so difficult.

Last edited by Administrator; 03-25-2013 at 06:01 PM.

 
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Old 03-26-2013, 08:12 AM   #14
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Re: Peristeen Rectal Irrigation

This forum is so useful for looking at other peoples experience, don't know what I would have done had I not found this a couple of years ago.

Petite50, I was fobbed off with IBS for a long time, as GPs actually know very little about these conditions. With my symptoms and history I should have been referred long before I was. I would go and see my GP and know that what they were saying didn't apply to me, and I wish I had demanded a referral sooner. These problems seem to be so complex and there isn't a one-size fits all solution. I hope your specialist nurse can be of help.

rm212, I will be questioning the consultant in great detail about which type of rectopexy I had done. I too had been told that a posterior dissection avoided the nerves and therefore constipation shouldn't be a problem-in theory maybe! Not even sure if I am constipated or if I just have an outlet problem-have been told so many different things by different consultants, I don't know what to think!
Don't think you're stupid for having the two procedures at the same time - we are all reliant on our consultant's advice, and without years of medical training cannot have enough knowledge to know if we're making the right decisions. I did a lot of looking on-line at various procedures, and thought I'd made the right decision in having a rectopexy, rather than a starr. Glad I didn't opt for the starr, but the rectopexy has obviously not helped. Hospitals seem to have very different approaches to these problems, and Oxford to seem to have a surgical bias-a consultant at St.MArks winced when I told him I'd had a rectopexy done!We are at the mercy of the professionals I suppose.

agrajag I would be very interested to hear more about your experience. I agree these surgeries are very difficult and complex - I haven't read many positive accounts which is worrying. If you feel you can give us more information that would be really helpful. Thanks

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Old 05-12-2013, 11:27 AM   #15
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Re: Peristeen Rectal Irrigation

Hi Petite50 - just wondered if you had seen the nurse specialist yet, with regards to biofeedback? Hope you're doing okay.

 
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