Bunged up - a tad graphic perhaps in a TMI way

[Happymama]

Hi all, since Christmas I've been only been able to go to the loo without a suppository or two dulcolax in the evening.  I get impaction, there is so little movement in my innards these days. I can't feel any of the usual, sometimes weirdly pleasant sensations, or signals that i need to go bar pressure on my now totally fragged anus.  And wind. I've learned how to interpret every single fart, it's meaning by time of day, what I've eaten and how long ago I went.  Lentils promise much (paaaaaarrrrp) but fail to deliver.  My bug guts have been very well looked after, I eat a lot of resistant starch, which they love.  

 

Every day I go sit, hang upside down like a bat, with the New Scientist between my feet an inch from my nose, and chew my knuckles as I try to visualise the drawdown - and wait for the OUCha!  A very obvious tear happening as i feel it leaves the loo looking as if I've been slaughtering pigs.   

 

My GP has asked for a list of my symptoms since the first in Aug 99.  She's going to send it to the neurologist, probably the last one who promised to find out what was wrong with me, and six weeks later some lad the same age as my son was telling me there was nothing wrong with me, so I don't hold out much hope.  I"m ex forces and that apparently might push the timing along a bit.  

 

Should I list the constipation as a symptom?

 

I have had the doubtful delight of an old symptom (electricution) in a new place a week or two ago, my left thigh for a short while.  

 

Is life not so totally wonderful?

Edited 12 Feb 2020, 2:36 pm by Happymama

[Stumbler]

@Happymama , you should be discussing this problem with your MS Nurse, who should refer you to the continence service.

 

There are the usual solutions, e.g. eat more fibre, drink more water, have your feet raised, etc., but you're probably getting bored of hearing those suggestions.

 

Given the extent of your problems, Anal Irrigation may be a solution. I know, it sounds awful, but awful problems sometimes need awful solutions. And, if it gives you relief......

 

Here's a video about one such system:-

 

Peristeen® anal irrigation system for incontinence and constipation

WWW.COLOPLAST.CO.UK

---

Peristeen empties the bowel by introducing water into the bowel using a rectal catheter. Using Peristeen minimises the likelihood of involuntary bowel leakage and/or constipation.

 

However, please note that I am not medical and you should only take advice from your medical specialists.

 

[Happymama]

Stumbler, I'm still in Limbo.

 

I've recovered, 8 and a half weeks after succumbing.  I feel very different, and have different noises and wind coming from my innards, and have gone naturally for the first time since just after Christmas.  

 

I eat a LOT of fibre, and drink up to four pots of herbal tea a day - the last one a mild soporific. With three small mugs in each, plus water with two meals.  The fibre is inulin, konjac glugommanan, oat bran, flax seed flakes to put in/on food, plus food such as dates, nuts with skins, lentils and veg unskinned.    This is a left over from my keto diet after Christmas to lose the weight I put on at Christmas. I did lose it, felt amazing on the diet, with cognitive enhancement and more energy but constipation can be a thing with Keto but not with my diet!  So I dropped the keto and still had the very severe constipation.  I feel like I"m passing broken glass and it's only just starting to get better.  I have to take pain killers to sit down after.  I have broken the skin on one knuckle after biting it with the pain of going.  

 

Thank goodness it's over.  I've had other new symptoms too, my right eyelid keeps getting ptosis after a period of twitching.  I've had a super agonising pain in my groin, not an electric shock, just pure white pain.  Pulsing.  

 

So the letter will be at the GPs as soon as the (heavy) snow is cleared.  

[Happymama]

Forgot also to say that the most effective way I found to take laxatives regularly so as not to damage my food absorption ability was every four days two Dulcolax in the evening with a lot of water, then a suppository in the following morning.  This would sort out the top and the bottom, so to speak although after half an hour the suppository often didn't do as well as it should have - and I'd be passing something too big to pass unless you're a horse still.  OUCHa.  

 

Not for long term.  Lactulose will become my best friend (yuck yuck yuck, had it when PG with the twins, so full of Relaxin hormones I was I started to fall to bits).  

 

 

[Stumbler]

@Happymama  , I'm glad you put that last sentence on your penultimate post because it cannot be healthy going through what you're going through.

 

Please update this thread when you hear from them.

 

[Happymama]

The recovery was a false one.  

 

Hooray it's over!  Five months of OUCH every time I go, but now it's ouch.  No more Two laxatives every five days.   However, when I eat pork and chicken I now get the familiar churning as my body says 'oy, this is not allowed, it's a problem' after it's learned that they are from food eaten in the past that didn't agree with me.  So nice to get that back.  Not felt such things since just after Christmas.  Mind you the gas I've produced today after last nights sweet & sour pork with rice is probably enough to power the heating of a large town.  

 

I have lactulose and had 30mg this morning to make sure.  

 

Neuro appt, if all the planets align, on 3 September.  

Edited 14 May 2020, 6:37 pm by Happymama

[Stumbler]

@Happymama , well, I'm glad everything is moving in the right direction for you.

 

[Happymama]

LOL Stumbler!

 

 

[Happymama]

Still on Lactulose - Boots charge £7.50 for a bottle, my pharmacy over the road £4.85!  Two weeks from each 500ml bottle, I just swig it out of the bottle, two gulps.  Gah, but I hate it.  However, it works.  And I now know that my system is taking three days to get food from top to bottom, so twice as long as normal.  Without the lactulose, it's 9 days.  9!  

 

Might have to ask for it in prescription, as a lump for two months so four bottles for the £9.20 charge but free for the next two years on CTC.  

 

Still hurts to go but at least it's normal.  

 

Had electric shocks in my right foot for once a few days ago.  Been a while.  

 

 

[Stumbler]

@Happymama , it sounds like the Lactulose is providing some welcome relief for you.

 

However, when you request the prescription, do discuss the present dose that you take and whether long term use is OK.

 

[Catherine]

@happymamma - I have this problem and was referred to a Dietitian at my local hospital. I am vegetarian and do eat a lot of fibre. However there are two kinds of fibre, soluble and insoluble, so it might be helpful to have your diet analysed. I kept a diary for 3 days and then we had a discussion and some changes were suggested. I was also told to drink more water and to try and move more. I'm not saying it worked 100%, and it might do nothing for you, but my situation is more manageable. I now also have two fybogel sachets a day (on prescription) - just in case!

 

 

[Happymama]

I drink a LOT of fluids.  On lactulose, food takes 3-5 days from mouth to endpoint (I know because some foods give me the runs as I'm mildly intolerant and say if i eat chicken on Sunday, it makes me looser on Friday. )  it used to be 18 - 24 hours!   Without lactulose, I'd not go for say a week, so seven days, and have a curry on the 7th.  I took two Dulcolax, and went the next day, with considerable interest, and the last one would be the curry.  So it's all gone.  At the 7-9 day point I just didn't feel like I could go, but get lots of smelly gas and feel kinda full.   And what's there is so big it's impassible unless you're an elephant.  I did try and am still not healed.   Eating a lot of chicken would make not a jot of difference.  I walk the dogs three miles a day and we have stairs.  

 

 I eat a gut friendly diet with lots of resistant starch.  Wholemeal everything and veggie food three days a week minimum.  I eat so little red meat I've had to start taking a multi vitamin with iron, as my iron count was low but I'm not anaemic according to my last blood test.  

 

I'm seeing the neurologist (again) in two weeks.  I'll see what HE says.  He's supposed to be the NE's expert on people with electric shocks, missing muscles, muscular spasms and bowel and bladder problems.  After the last experience I'm not hopeful. 

 

 

[Catherine]

@happymamma - you seem to everything covered. I did wonder if you have considered having a colonoscopy? I had one last year, with the idea that it might rule out other possible causes. It is very easy for medical professionals to blame everything on MS, so I asked to be properly investigated. It's not pleasant, but it gave me peace of mine knowing that it is the MS causing the problem and nothing else untoward. 

 

Good luck with the neurologist, they are not all bad and some can be helpful and kind.

[Happymama]

Hi, that neuro humpf.

 

I went after waiting six months, to be told at the hospital reception that I'd cancelled the appointment the day before i'd received the notification of it.  Left in tears.   Rang GP surgery to get GP to ring me back.  They actually told me that the hospital had cancelled it but if it says on the hospital computer that I did, then they don't need to do anything to get me back.  

 

GP rang, listened, and then said she'll try to find me another neuro because that one had contacted the GP surgery and told them he didn't need to see me as I wasn't severe enough.  This was the man who ten years ago assured me he'd find out what was wrong with me!  GP took on board that now the symptoms are affecting my life negatively because they've moved from comedy value, to life changing (having to take lactulose every day, permanent eye brow and eye lid drop on one side after an evening of argument meaning I have contact lens dryness issues now, if I lose my shin I go down, I get spasms that disable me) and that I got quite upset during the call.

 

I've been at the mercy of my hormones and their lack for 13 years now - it's been a sentence.  I get low mood and depression alternately with deeper low mood as a change.  Feel better now and sense a real change so here's hoping I'm DONE.  

 

 

[Stumbler]

@Happymama , goodness me.

You did right in getting the GP involved to initiate a second opinion for you. Unfortunately, that probably won't be a quick solution, but let's see.

 

Don't let your hospital get away with their inefficiency and your Neuro's dismissal of you. Contact the Hospital's Patients Advice & Liaison Service ( PALS) and let them know what happened.

 

Your rant is fully justified and I'm glad it has had a cathartic effect.

 

[Catherine]

That is shocking. Please do complain as they have treated you very badly. And also insist on seeing a different Neuro, I have done this twice in the past as I was unlucky enough to have been given appointments with two very patronising consultants. I wrote to them both and told them exactly why I was asking to see someone else. I can't tell you how much better I felt after sending those letters (copying in the PALS people), and now see a very caring consultant at the same hospital. You can also request to be seen at a different hospital if there is another one close by.

 

Don't give up, and the very best of luck to you.

[Happymama]

GP has asked me to ring her but I keep getting no answer or engaged - it took me two weeks to get an emergency appt at the dentist when I swallowed half a molar so its probably the same at the GP.  She took two weeks to ring me back last time I asked for her to. I know she's there on Mondays so shall try again next Monday.  

 

The other day I came down the stairs and the tops of my legs felt awful.  A bit achey and weak - and I mean weak.  Both at the same time, just the tops.  I was wobbling.  Scary stuff.  Flopped on the sofa and it cleared.