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Old 06-14-2013, 01:10 PM   #46
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agrajag HB User
Re: Peristeen Rectal Irrigation

Quote:
Originally Posted by carly33 View Post
I currently spend about 2-3 hours a night doing my suppositories as Agrajag said it takes ages because a tiny bit comes out at a time, I have to do 12-14 suppositories a night. If the peristeen works then 35 mins instead of hours spent on the toilet would be better but still waiting on my appointment with the continence nurse. I do think if the sacral nerve stimulation fails to give me any relief and the peristeen fails I will ask for surgery, as so distressing and painful and my life has been ruled by my bowels for far too long. I was first diagnosed with IBS but of course they took about 2 years to find my bowel had prolapsed, so I was referred to a dietician who put me on a low fibre diet. he also put me on a wheat and dairy free diet but nothing worked and my problems were getting much much worse! Drs give the diagnosis of IBS too much, and after I had camera test done on my report was ulcerative colitis as my diagnosis which was also not right
12-14 suppositories Carly, how awful for you. I used to find before my operation 2-3 glycerols in the morning worked quite well, now they are hardly worth using as they get so little out! I must warn you I sadly had a similar experience with the peristeen: before my rectopexy it would work reasonably to get stool out over an hour or so, but after the rectopexy hours of peristeen use would only move a tiny amount of stool at a time -it just would not work anymore and I had to give it up. I think the rectopexy may have caused some kind of block, maybe linked to scar tissue from the mesh, and that stopped both the glycerols andperisteen being able to get more than a very small amount of stool out. However just cos peristeen did not work for me after my operation does not mean the same will be true for you-I've heard that the peristeen is sometimes specifically used to help with bowel damage after surgery i.e. it must help some with damage after surgery. Hope the milk of magnesia helps you too, try 20mls in the am and 20 in the pm to start maybe?

 
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Old 06-14-2013, 03:01 PM   #47
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Unhappy Re: Peristeen Rectal Irrigation

Hi Agrajag, yeh it's awful doing my suppositories and is very distressing and painful but have used 24 suppositories in the past as I felt so uncomftorable and unrelieved. Yeh before my rectopexy I used to use 4 suppositories a day, 2 in morning and 2 at night which worked fine and they got a fair bit out, but now a rock hard small ball comes out per 2 suppositories. ( I know is grose lol) I have my doubts that the peristeen will work for me as similar to you I just feel blocked up all the time. Will definitely will it a try though and see what happens, waiting for the sacral nerve stimulation surgery also

 
Old 06-15-2013, 01:38 AM   #48
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Re: Peristeen Rectal Irrigation

Miss Collie did my rectopexy in April this year. Mr Wilson is a very nice man, he did an op. for anal fissure back in 2007. For some reason Miss Collie refused to do rectopexy for me in April 2011. I asked GP for another referral in 2011 due to the incomplete evac. and was referred to another colorectal surgeon, Mr Bartolo, he told me I had a rectocele but didn't refer me for surgery. Finally I almost begged my GP for a third referral as I was desperate to get something done about the incomplete evac, had read online that rectocele can cause incomplete evacuation, and that surgery is the only solution for it. Mr Wilson looked at the MRI from Dec 2010 and agreed I had a rectocele and referred me for a rectopexy. he said he'd do it himself if Miss Collie was too busy, that it was her speciality. i then got a pre-sugery to Mr Potter who told me the risks, but I was so desperate to get the rectocele sorted out I knew I had to take the risk, and said I wnted to go on the waiting list for it. Who did your rectopexy?

 
Old 06-22-2013, 07:46 AM   #49
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Angry Re: Peristeen Rectal Irrigation

Hi everybody I too suffer from colonic inertia after my rectopexy in November 2012, my problem has since got worse as I have no feeling that I need to open my bowels until I use 12-14 suppositories a night. I have to remove in manually also as I can't push it out no matter how hard I try, I have got to point I drip with sweat on the loo and nearly pass out. I can't sit for too long and I feel very full in my belly area and my stomach is bloated all the time. I also get chronic anal pain after bowel movement but more recently I have pain there all the time and It feels extremely sore.
I am awaiting peristeen and sacral nerve stimulation surgery also

 
Old 06-22-2013, 07:50 AM   #50
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Re: Peristeen Rectal Irrigation

Carly are you still seeing your Mr Jayne, can he help you, or was it he who recommended the peristeen and sacral nerve stimulation? Also you said you had colonic inertia, did you have a transit test before and after your rectopexy so you know it was the rectopexy that induced the colonic inertia?

Last edited by agrajag; 06-22-2013 at 07:51 AM.

 
Old 06-22-2013, 08:22 AM   #51
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Re: Peristeen Rectal Irrigation

Hi again
I am still under professor Jayne who suggested the peristeen treatment and the sacral nerve surgery. I have asked my GP for a second opinion though as I don't feel as though professor Jayne has exhausted all the options that might be available. I didn't need a transit test as it was clear to the professor from my symptoms and history that it was colonic inertia.
How are you Agrajag?

 
Old 06-28-2013, 03:05 AM   #52
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Wink Re: Peristeen Rectal Irrigation

Carly, I have put a couple more posts further up the page- some of the symptoms you describe here sound rather like mine- although I have managed to get myself into this situation without having any surgery. I did have a transit study which showed that I have slow transit in my colon. That has helped me understand my problem alot better- I think my colon is probably unusually large and bloated- I already know I had a large rectum, as my consultant showed it to me on the proctogram. I have lost the ability to push on the loo- in fact I pushed so much, it has caused major problems with my veins- I have to keep my legs elevated as much as I can. because I can't push I find the only way I can go to the loo is by taking large amounts of Movicol, which has left me incontinent. I am just learning how much Movicol suits me

. At the moment I'm trying 4 all in one go on one day, nothing the next and maybe 3 or 4 the following day. So far that seems to keep things moving for me, but the consequences in the bathroom are dreadful- some days I just can't cope. As many as 15 trips one day. I too have been prescribed Peristeen- should arrive in the next couple of weeks- but I'm not really convinced it will help me- from what I have read on the web,it works really best for people who have a normal rectum and colon. I'm thinking, is the amount of water you have to use ever going to reach the parts it needs to. Anyway, even if it helps me just a little, it will be worth a try.

I think what I want to say to you, is be careful, don't push too much- it has had dreadful consequences for my circulation system. Maybe would be better to increase your dose of Movicol, or something similar, so you don't need to push. I have never had the pain you describe just after a bowel movement, but I did have pain most of the day since last December, building up during the day until evening. Just about three weeks ago it was at its worst- radiating out through my buttocks. However, since starting to take these large doses of Movicol, the pain has completely gone, my stomach no longer feels bloated.Up to about 3 weeks ago, I was taking very small amounts of Movicol, and although it usually produced some results, it never shifted enough, and the pain was still there. If I had understood things better I would have had larger doses earlier, and maybe I wouldn't be in the dredful situation I'm in at the moment. My consultant suggested SNS to me too. I don't think it would work for me though, because surely with it, you would still have to push a little. Let us know how you get on with the Peristeen and the SNS

 
Old 06-28-2013, 03:45 AM   #53
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Smile Re: Peristeen Rectal Irrigation

I noticed somewhere on this board that you mentioned that you had been offered a colostomy at one point. Am I right? I am at the point now that I think, the only hope for me would be to have one. I think nothing else will work for me as I am now totally incontinent. However my GP is saying that I have to have tried everything else first. Am about to try Peristeen in a couple of weeks. Am not that hopeful, but of course if it worked that would be great. Apart from that I cannot see that there is anything else that would help me- I can't push on the loo at all, so anything that might cause straining is out. I am wondering how I can persuade my GP or a consultant that a colostomy is my only hope. I realise a colostomy is extremely serious and has its own risks, but with my problems, I think it my only way out.

 
Old 06-28-2013, 10:04 AM   #54
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Re: Peristeen Rectal Irrigation

Thanks for your posts 21Anne
I have to remove it manually as all the pushing is making me feel sick and my stomach muscles hurt also. From what I have read of your problems they are very similar to mine like you said.
I use up to 12-14 suppositories a night I find movicol gives me severe stomach cramps and even though it makes my stools loose it still won't come out naturally and have to stimulate it with my finger.
I havnt been offered a colostomy but don't know how much more I can take of this, it's ruling my life
Hope you are ok what have drs said about treatment except peristeen

 
Old 06-28-2013, 10:22 AM   #55
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Re: Peristeen Rectal Irrigation

Quote:
Originally Posted by carly33 View Post
Thanks for your posts 21Anne
I have to remove it manually as all the pushing is making me feel sick and my stomach muscles hurt also. From what I have read of your problems they are very similar to mine like you said.
I use up to 12-14 suppositories a night I find movicol gives me severe stomach cramps and even though it makes my stools loose it still won't come out naturally and have to stimulate it with my finger.
I havnt been offered a colostomy but don't know how much more I can take of this, it's ruling my life
Hope you are ok what have drs said about treatment except peristeen
I was offered peristeen and pudendal nerve block. The nerve block was for the pain, but I have recently discovered that if I am taking enough Movicol I don't have any pain. The consultant also mentioned SNS, but I don't think that would help me. The Starr and rectopexy surgery wouild not help me either. Quite glad I don't have to make a decision about those 2 procedures as they sound risky- but all major surgery is, I suppose.

 
Old 06-28-2013, 04:13 PM   #56
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Re: Peristeen Rectal Irrigation

The rectopexy was awful for me, was meant to be going home the next day but they kept me in for 3 days on a morphine pump and catheter. I went home the Saturday morning despite telling them I was in agony went to bed with help of friend at 11am and no no came to see me until 11pm that night!! and ended up back in A+E that same night, then was kept in for another 4 days. I suffered very badly after it but same ppl on ward had same op as me and they were pain free and walking out fine

 
Old 06-29-2013, 01:45 AM   #57
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Re: Peristeen Rectal Irrigation

That sounds dreadful. You have already suffered alot.

 
Old 06-29-2013, 05:09 AM   #58
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Re: Peristeen Rectal Irrigation

Carly33...i also at times have to manually help myself.It is such an awful thing to have to doProblems seem never ending.The rectopexy did not help me and i feel so so much worse since having it in December 2012:-(
I have been using peristeen for a few weeks but not helping me one bit at all but i shall keep trying it and see how it goes,to give it a chance...it just makes me feel extremely unwell,which i certainly dont need!!!I was offered a stoma a few years ago but did not want to go that way but who knows what the future holds for us who are suffering so much.We have to keep strong and also keep going and hoping...take care.

 
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Old 10-01-2013, 08:15 AM   #59
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Unhappy Re: Peristeen Rectal Irrigation

Hello,i have not posted for quite a while and noticed that no one else had either.I do hope not everyone is suffering but for myself it is horrendous all the time for me.I had rectopexy last december and have been having an awful time since.Chronically straining all the time,day in day out to try and pass soft poo!!!so awful.Feel sick,bloated and ill all the time.Does not seem any answers to it all!Have tried so much and more recently,rectal wash outs and rectal irrigation system,to no avail.I should be able to use my bowel properly as the poo is soft and there is plenty of it in my rectum but it wont move without me straining.I also get hemmarhoids as well and my general well being is rubbish...i have chronic fatigue syndrome,chronic dyspepsia,urticaria,severe ibs and recently diagnosed with fibromyalgia,so feeling really fed up and depressed about it all.No one seems to have any answers including so called health professionals.I am going to see surgeon who did my operation next week and also specialist physiotherapist later in the month,who knows what they shall have to say,need a miracle!!!I have been ill for many years and really try and cope with it all best i can and have good support from my husband,but feeling ill every single day does get to you,it is so very difficult.
Anyway thank you for reading and listening.

 
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Old 10-01-2013, 09:57 AM   #60
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Re: Peristeen Rectal Irrigation

Hi Petite
I felt I must answer your message to give you some support. I have quite different problems to you- everyone is different. Amongst other things, I have completely lost the ability to push on the loo and have to take 4/5 sachets Movicol a day to make my stools semi-liquid. But because I don't get any warning when I need to go, I would be completely incontinent, if it weren't for the irrigation system that I have now been using for a month. I tried Peristeen first, but I couldn't get the water to stay in, so I am now using Qufora. The main difference is that Qufora has no balloon. I find it positively painful at times when I am pumping the water in, and I have to repeat the whole operation and use lots of water. However I don't feel bad after the irrigation. While I am sitting on the loo I rub my tummy and stretch my arms round to each side and up in the air to encourage the water to come out. I don't think any advice I can offer you will help, except that you must not lose hope. I had 2/3 months of being confined to the house, before I got my new irrigation kit. I felt so awful that I didn't care whether I lived or died, in fact I thought I was going to die- I have circulation problems in my legs as well as my bowel problems and burning feelings over most of my upper body as well. However, since I have been able to get out again, I am feeling so much better. I hope you are able to get help soon. 21 Anne

 
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