Experiences with LARS and bowel irrigation

I've previously posted on this site re using irrigation to manage LARS.

For over 6 months now I've been using the Qufora cone system with great success - it has given me complete control of my life again.

Previously I was feeling suicidal due to not being able to plan anything (pub, restaurant, holiday, golf and squash matches, etc.) - now I can do everything that I did before the bowel cancer operation that I had 2 years ago. It takes me up to 1 hour when I get up, then I'm ready for the day. for a short while I tried to use it every other day, which was successful in that I didn't need to defecate for two days, but I felt bloated during the second day, so reverted to daily usage.

Currently I'm getting a monthly kit on prescription through my local GP, I've not been told that there's any likelihood that it won't be available via prescription (yet).

My enquiries revealed that it costs between £120 and £150 per monthly pack.

I hope this helps.

Bob

Thanks,

Not sure if the Qufora Cone system would work for me. I've got the Qufora Mini system and I find that I can't pump more than about ½ a bulb of water before it leaks back around the sides, otherwise the full irrigation the Cone provides does sound like sort of thing I'm I'm after.

The Coloplast Peristeen System uses a balloon to block the anus so the water doesn't come out until it is deflated which sounds like it's more likely to work.

I'm looking to see if it's possible to use a full irrigation system on an intermittent basis as the Peristeen system works out at over £300 a month I'm told - if used daily.

Hello there! I am new to this site. I have LARS. I have done a heap of reading and it is the general consensus that nearly all LARS cases are caused by aggressive surgery. I had my ileostomy bag reversed 4 months ago. I had already had one episode of Clostridium Difficile contamination from unclean equipment in radiology during a procedure. As soon as the bag came off all hell let loose and c.diff took me over! I have recently had a Fecal Transplant and that seems to have worked. I am clear of the bug but the symptoms persisted. LARS of course. This past week I have had CT scans which show my sacral nerve or part thereof is damaged. This explains why I have dropsy in the right foot and no control whatsoever, I spend hours on the toilet and have to wear nappies everywhere, plus a lot of pain. I was taking Gabapentin which helped immensely but as soon as I found out it was highly addicitive I weaned myself off it completely.  My CR Surgeon is now suggesting I have an electrode implanted in my sacral nerve. People say it works miraculously but I am quite apprehensive about it. Have you spoken to anyone at all that has had this done? Did it work?

Bob have you heard about the Electrode implant into your sacral nerve? My CR surgeon has been talking to me about it but I am very apprehensive. Apparently it returns you to nearly normal. Have you ever spoken to anyone who has had this procedure? I do not want to go back to the bag.

Dorrie,

I asked my CR surgeon about this and he said it would not be effective in my case - this may have been true or not as he was obviously not keen on this course of action at that time (about 6 months after reversal). 

As you may have seen from my previous contributions, what has worked wonderfully for me is daily colonic irrigation (= water enema) using a qufora cone-based kit. I now do not suffer in any way from LARS, and have been ok for about a year now.

I hope this helps.

Regards,

Bob

As an update I got hold of a Qufora Cone system privately and I've been using it for the last 6 weeks.

I have to agree with jayarrscott - it's changed my life! It takes me about 45 minutes each day to flush out and then I'm good for the next 24 hours without problems - mostly.

I still have to watch my diet and avoid anything (like lots of onions) which give me wind as that drove me to the loo with a good  old 'wind and leak' session but otherwise I've got my life back.

All I've got to do now is convince the CCG to let me have this on 'scrip! I have an appointment with my surgeon on Monday so I'll see if there's anything he/we can do to get this through.

Fecal transplant, sacral nerve electrode - if this is on the NHS which Health Authority are you with?

Hi Bob, thanks for your answer. For some reason I can't define my CR surgeon (who has a Ph.d from Oxford) is not keen on irrigation. He just fudges my enquiries. I wondered if it was because I had had a fecal transplant  - after my ileostomy reversal of course - and the antigen can still be activated to reject the biome even up to 12 months later. Or perhaps because my sacral nerve was damaged during surgery and irrigation won't help.

I am trying to stick to low res. The Liver Specialist and Endocrinologist who did the transplant wanted me to go onto the FodMap regime but Mr C said not necessary. However Ms O said nothing to scrape or disturb the walls of the colon. That is my concern with irrigation that it affects the microbiome. Is it possible for you to replace it with pre-biotic food each day? The role and importance of the microbiome specifically for Colon cancer is just being understood. You could flush barley water up there after the irrigation???? You have the most amazing product in the UK a multiple award winning fermented Barley water.

Because he is a surgeon I feel he "loves" procedures especially new fangled ones. They have done about 100 of the electrode implants throughout New Zealand in the past 12 months with 80 percent success rate. That's 80 people it worked for and 20 it didn't. My odds are I would be one of the 20!!! They told me to look up Medtronic permanent implant and read the information there. 

Because Calendula was recommended to me by the Head of Oncology Radiology, the Senior Consultant in NZ Ms B, I followed that up. I was experiencing severe neuropathy and my hands and feet were bleeding and peeling in great shards of skin. I was completely urinarily incontinent and my hair was dropping out in scads I decided to follow her advice though I was extremely sceptical. I drank the organic tea steeped from dried calendula. Put my hands and feet in the tea water and used a specific Calendula ointment each night slathered on and covered with cloth gloves. Within 3 days ALL of my problems had disappeared. Completely disappeared. I was shocked and confronted really. Ms B told me in hushed tones as if she was being recorded by the drug nazis or spied on by the Auckland District Health board and Pharmac, "We should be prescribing this here really but we are not able to given the Ministry of Health recommendation that there is not enough scientific evidence."  I find this absolutely outrageous but that's an entirely other hornets nest!

However what that has shown me and I now believe to be true, that there is something very simple and very natural out there for every single ailment given my experience with the efficacy of calendula. How to get to that information is the tricky part. It's not easy. Google and Facebook have become the new Brave New World monitors, in true Stasi fashion, of the information we receive. If you Google for anything natural these days you just get the same old medical websites that just repeat the same old standard and useless information.

Hahaha Sorry for climbing on my soapbox but of all people, many of those with cancer or post cancer treatment and surgery are fumbling around in the dark for true help.

I have started drinking Calendula tea again. Taking oral Liposomic Vitamin C because I can't afford the infusions. Increasing soluble fibre and I am going to a recommended acupuncturist this week. I will keep searching.  I am looking for the herb or plant that regenerates nerves. I have found PubMed to be helpful but if you have ever searched on there you will know what I mean about deciphering the verbosity down to the facts.

If you get this information through your site moderator I will be truly amazed!!!!! 

Hi there!!! Hope you are feeling well and getting out and about with a smile on your dial !! It's New Zealand. Yes the National Health only I'm not sure it's officially called the National Health here. Each section of NZ has it's own Health Board and you are usually considered to be "under the ADHB" or the "WDHB" etc etc. I'm under the Auckland District Health Board. If it's a rule of your local Health Board then you can't get past it and no-one can overrule it not even your Consultant! E.G. I got a phone call saying I had surpassed the Ministry of Health allocation of Continence pads and can get no more. Mr C my colorectal surgeon has to write to the Ministry explaining my symptoms, cause and circumstances which will then be considered. It's not funny but it just reminds me of some television skit from Yes Minister in which they debate for days over a poo pad.

On the other hand if there's something new on the horizon, permission granted to experiment with it. The ADHB loves kudos just as much as bureaucracy!

Good Luck with your prescription!