Wellness during and after treatment

GROBER

Peristeen transanal irrigation system [ Bowel Motions don't stop part 3]

Basically a follow up to my Bowel Motions don't stop posts describing my tribulations following my low anterior resection of upper rectum and sigmoid colon and a temporary ileostomy reversal which went wrong due to adhesions and scar tissue leading to a further small bowel resection and further anastimosis .
There then followed a series of strictureplasties 6 in all to stretch the original anastimosis. Diameter finally settled at around 18mm and it was decided that any further attempts would result in further scar tissue formation which would be counterproductive. Since then bowel motions have been kept soft with the regular use of movicol once a day and a degree of stability achieved. Unfortunately over the last few months I have become aware of further scarring which has developed at the anastimosis site on one side. This has resulted in everything slowing down again despite me trying to keep all bowel motions the consistency of toothpaste! My GP now tells me my anastimosis is now a bit like an S bend and its this thats causing the problem. She suggests that over a period of a few days despite me continuing to pass some stool things begin to back up leading to my current distressing symptoms. Her suggestion was to employ more movicol but because my diet is restricted anyway this seems to make me feel quite ill unlike in the past. The other alternative would be perhaps to use some form of anal irrigation system to prevent any build up. My question is whether this has proved useful to others with a low resection experiencing slow transit and build up problems? Perhaps its not appropriate for rectal anastimosis patients? I would be grateful to hear from anyone using anal irrigation post operatively to hear of their experiences and if it proved effective in relieving discomfort?
thanks
G
A LINK TO THE PERISTEEN SYSTEM
www.coloplast.co.uk/peristeen-anal-irrigation-system-en-gb.aspx

Grecian

Hello Grober, I am very sorry to hear of your bowel motions problem, you have my sympathy, like yourself I was really struggling after my low resection. My ileostomy was reversed after just three weeks, in an emergency operation, which left me struggling with very little bowel control. I endured this for just over a year until my surgeon prescribed me a Peristeen kit, since then I have not looked back.

In answer to your question, yes it has totally removed my discomfort and now I have full bowel control back again. I do a daily irrigation (that is a nice word for enema) at roughly the same time each day, and go the full 24 hours without having to use the toilet again. I do not take any loperamide tablets at all, although I do take a tablespoon of psyllium husk a day, because of constipation problems, but the psyllium sorts the problem out. I can eat and drink anything that I want to, including very hot spicy foods. So basically the kit saved my life.

The actual use is quite civilized as you have probably watched the video, you are sat on the toilet whilst pumping in the water, the whole thing works with four different colour coded symbols, blue to inflate the balloon, white to pump in the water, green to deflate the balloon and orange to store the kit.

I would strongly recommend you speak to your surgeon about the possibility of being prescribed a Peristeen kit, which will hopefully sort out your bowel control problems. If you want any help or advice please feel free to PM me, or post on the forum.

All the best

Richard

Grecian

Gosh, it really makes it worthwhile when a member sends out a cry for help, people take the trouble to answer the call, and then the OP totally ignores the replies.

I know we all deal with this disease in different ways, but I do not think that cancer takes away our manners. I know that I am in a small minority with poor bowel control after my operation, but when people in a similar situation ask for help then ignore any replies posted, I find it very depressing. This has happened on several occasions now, and for me I will not be posting on this forum again. Wherever this 'journey' takes me I really cannot be bothered to post again.

Stillme

Hi @Grecian although I haven't been in the same position as you as can completely understand how it must feel to offer and give help and advice and feel ignored. I do hope you stay as all I can say is that I sometimes just type a word in the search and find old postings that really help me so I am sure that many people have benefitted from your time and effort and help, it's just unfortunate that you don't know it :x:

Kareno62

Hi @Grecian. I'm wondering if @GROBER missed your reply as he wasn't tagged in and may not have noticed if his post had slipped down the board due to more recent posts? :x:

Lizalou

Hi @Grecian

I can understand that you must feel very frustrated after giving such a detailed (and personal) reply. But as @Stillme has pointed out, your time has not been wasted, as others will be reading your information via the search facility.

Thanks again for your information and best wishes for a healthy future.

GROBER

Hi Richard,

I have only become aware of your reply and can only offer my sincere apologies for not responding to your reply as I have not been on the forum for a bit, and as others have surmised missed your extremely helpful post. I had in fact given up on getting any further feedback. One concern I had was whether with a low rectal resection there was any "room" for the inflatable balloon part of the apparatus. It would appear my fears were unfounded. I have made a request to my surgeon via my GP about this a couple of weeks ago but have heard nothing back so far. As Lizalou has pointed out your post may well prove invaluable to many other forum members as well as myself so was not wasted by any means. Thank you once again for taking the time to give such a detailed reply to my enquiry It was much appreciated.
Graeme

ps not sure if my forum post notification facility was working properly.

pps thanks also to Kareno62 for tagging me about Richard's reply

GROBER

Just an update to the Peristeen Saga --- Finally been referred to colorectal nurse team in another hospital some 30 miles away for assessment as to whether anal irrigation would be suitable for my problems --- but only after lobbying my GP on and off for 3 months. Unfortunately in the meantime I have developed a rather alarming set of symptoms whereby after a couple of days of difficulty passing bowel motions I'm waking up in the middle of the night with elevated heart rate/shivering/ shaking and feeling generally unwell-- only relieved by "getting vertical " and walking about a bit. This means loosing a lot of sleep and very little appetite. Sometimes for no apparent reason after a few nights of this bowels open and I get evacuated many times- its as if there's a backlog which gives these alarming symptoms only relieved with the bowels opening. Feels as if my large bowel just stops working or gets inflamed? Wonder if anyone else has experienced these sorts of alarming symptoms while lying down?