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Ms nurse - more bowel talk

We went to Northampton Hospital this morning to see an MS nurse who specialises in bowel management.

I’ve been managing with Laxido and glycerin suppositories and i go regularly and easily, but never feel comfortable afterwards, There’s always a feeling of not having fully emptied my bowel, and being bloated and very uncomfortable down there for much of the day.

So she is suggesting I start using irrigation, with a preference for the Peristeen system, though she’s not insisting that I use that one.

I know this has been regularly discussed, but I’m interested to know how any of you get on with this method, especially if it eases the bloating at all. She says it will.

Kev

ps i can’t wait to try it, and long for the day when i don’t have to drink oh so delicious Laxido!

I started using the qufora mini irrigation system shortly before Christmas. I had been using suppositories but like you didn’t feel fully empty.

Qufora only uses 90ml of water and somehow didn’t look as invasive to me as Peristeen. I use it on alternate days, it’s simple to use and is working well at the moment.

Sarah

I’ve often thought with ths constipation thing a manual sucking device might be useful, just to help things along if you get my drift.

Sounds like it but its not a joke and Im not trying to be flippant !!

I now use a qufora mini and works fine most of time. Not to much bloated feeling

Don

It’s the bloat and the unfinished feeling I would like to lose. I’m never constipated as such. I did try a Qufora mini a few years ago when I was managing by myself, but found it hard to get the nozzle right. Now my wife has to help me (brave girl!)so she will be taking care of the plumbing.

Hi

I use the Peristeen system every 2 days unless I’m going out for the day, mainly because I am confined to a wheelchair and need a hoist to get out of it.

So I use it then which gives you the confidence to get out.

You will have to try it a couple of times to get it right but once you are used to it.it does give you some fredom and confidence.

Ronin.

Hi Ronin

Just had my first go on it this morning, under the guidance of the ms bowel specialist nurse. Quickly effective, and easy to do (or rather, be done to- my carer did the working this morning, though most days my wife will).

Four hours later I have my usual bloat and cramps coming on, but I was told that it’ll take a week or so for my system to adapt to the routine. Hope the bloat will ease then. Even if it doesn’t the whole procedure seems preferable to using a suppository and wondering if I’ve really finished.

This might well be no help at all Kev, and if so, I’m sorry. I don’t mean to irritate with unhelpful anecdotal stuff!

I just wanted to say that I had bowel issues for years - constipation and urgency and the like - before finding out I was allergic to dairy. And things are even better now that I have found out that eggs can give me severe migraines and digestive upsets.

I never got anywhere with going to a GP for allergy tests. I was told there’s no test. So I just had to suffer for years then find these things out myself. (And yet my partner had an allergy test for hayfever in Germany and he was given a whole list of specific tree and grass species that he’s allergic to.)

Anyway, what I want to say is, don’t underestimate diet in terms of making things worse, or having the potential for making things at least a bit better. I’m sure you know this already though!

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I have wondered about this, Lapwing, but I’m dubious that my diet is the problem. I had no issues with digestion before my MS set in. I’m pretty sure it’s all to do with slow transit time.

Kev I never had a problem with diet before ms hit either and they’ve since discovered I’ve got Coeliac disease so I have to avoid gluten. I didn’t even consider I had a problem, we found out when they did tests to see where I was losing blood as I was constantly anaemic.

I’m not saying it’s the case with you but sometimes diet is more important than we realise.

Cath x

Cath, I am certainly going to discuss this when the ms nurse checks how I’m getting on next week.

Kev I wasn’t trying to frighten you. It was just accidental I found out I had a problem, but my uncle has it too so there is a family history in my case.

I was only trying to atone for the fact that I was one of those who got upset when people tried to push odd diets onto others when I fully believed that a good healthy balanced diet including all food groups was best. It’s only now that I see that some changes do work.

I have to now follow a gluten free diet (which is driving me insane when I try to grab something quick while I’m out) and I don’t like it at all. The alternative of regular blood transfusions doesn’t appeal. I hope there is nothing like that causing a problem for you, but I just wanted to point out that sometimes dietary changes are beneficial. It doesn’t pay to be stubborn like I was.

Cath x

Glad it is OK for you.

My wife has to do it for me but you will get used to it and it gets less embbarrising.

Yes keep up a balanced diet but the thing is with MS it weakens muscles and you need muscle power to help things transit.

If you are like me ( have to be hoisted out of my chair ) and of course public and disabled toilet don’t have these facilites.

What people don’t understand is you can become isolated because of toilet issues.

What they need to think about is suppose they where say in a theater and needed to go. sat in a chair can’t get out and go to the loo.

It wouldn’t be very nice to mess yourself either in public or at home.

Unfortunatly it’s one of those unpalitable things that has to be done.

You’ve done the hardest part now by realising to maintain some quality of life it will help you.

Regards.

Ronin.

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Hi Kev,

Read your blog with interest. I know the Peristeen system is not for everyone. I’ve heard that the thought Of ‘bowel wash’ is too much for some. My good news is that I have being using this this for six months successfully. Before this I was confined to barracks for fear of being caught short! My world was retreating to the confines of home and was causing me to feel very down.

Initially using the system took a bit of getting used to. It can be a bit fiddly at first. The Peristeen nurse was brill. She took me through using it stage by stage. After persevering for 'bout three weeks at roughly the same time every day I got my life back. I understand most folks don’t need to use it daily - more like every other day. I had suffered from IBS for years on and off - that’s gone too. And, I’m back driving my car.

I hope this is helpful. Talk to your incontinence nurse again and perhaps give it a try to see if it suits you. All the best.

Anne

PS Please let me know how you get on.

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I had a Bowel Scope last year, they sent me an enema kit to do at home before going to the clinic for the scope. Fortunately they sent me two by mistake as one wasn’t enough, not sure they were too happy about me using two but believe me they were both needed. I can’t remember what it was called though.

I was very apprehensive but found it quite easy if I had to do it regularly it wouldn’t bother me at all, in fact it would be far easier than the performance I go through to do it “normally”.

Jan x

Well, I’ve done the Peristeen for 9 days now.

The process itself is quicker and easier than my previous suppository routine. I will certainly keep doing it just for that reason.

However, I still have the unfinished feeling and have to convince myself to call it a day. Whatever happens takes place within minutes, then I feel as though there’s more to happen. There never is, so I’m now only waiting for ten minutes to be sure.

Then later in the day I get increasing discomfort which feels like trapped wind, and this sets my leg spasms off.

I hope to speak to the ms nurse soon to see what she thinks. I’m led to believe it takes several weeks to get an effective routine going so haven’t lost hope of achieving a more comfortable bowel.

Kev

Kev anything new takes time to get used to. You’ve got the right attitude, the continence nurses are very experienced, I remember how frustrated I used to get when I first started self catheterising but after a while I found a routine that worked for me and I’ve never regretted sticking with it. Getting some control can make a huge difference in day to day living.

I hope things settle down for you. MS is certainly not a pleasant illness to live with in so many ways. Take care.

Cath x

Hi Kev,

Have read your blogs on Peristeen system with interest. I have commented earlier. If it’s any help/re-assurance I allow myself 25 - 30 mins for ‘things’ to clear as I’m never sure when my bowel is empty. I have a wee kitchen timer. The whole process takes 30 -35 mins.

Anne

Hi Anne

Thanks for your help. I’ve been allowing myself less and less time to sit, because experience tells me that no matter how much my cross-wired nervous system tells me I could still go again, actually I won’t. So now I’m giving it 10-15 minutes after the main flush. (I have a little timer too.) Then once in my wheelchair all the disquiet gradually settles down.

I spoke to the ms bowel nurse today. She approved when I told her that. She also said that the bloating should gradually reduce, meanwhile try peppermint cordial to sooth it. And I’m going to increase to 700ml of water, having started at 500 and had 600 for the past two days on my own initiative.

Boy do I look forward to it every morning!!

Kev

I take peppermint codial when my bowel starts going into a spasm,i find it really good.

J x

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