More than Slow Transit Constipation?

[Dani09]

Hi all,

Its so nice to find a place to feel im not alone in this awful whirlwind of issues although i wouldnt wish this upon anyone.

I have been suffering from what I have been told is Slow Transit Constipation since the age of 13 years and I am struggling now more than ever. I am now 30 years old.

This was not fully diagnosed until 2013 when I was fitted with an SNS device (similar to a pace-maker for your bowel) and it has been manageable until now. Unfortunately, this year (since January 2018) I have not had any natural movements. I have been surviving off Private Colonics which I have had to reduce to once weekly due to the cost and fitting around my work schedule.

I am still under my original hospital who has advised I need a ‘Wash out’ procedure due to now being impacted and will apply for funding for a new battery as mine is currently dead. I have no idea why the low battery was not picked up before now. They have also informed me funding is very unlikely and the next step if this is not successful is bowel removal/stoma. They are not willing to investigate why I am in the position before offering me a life changing operation.

I am very concerned there is more to this than a slow-transit?

I am beside myself in pain and discomfort, and really need to seek a secondary opinion of where I can go from here.

I’ve been to my local hospital recently after being sent to a&e from my GP after experiencing bleeding and using a home colonic kit which was given to me by the hospital. Needless to say this was unsuccessful and leaving me in more pain. My local hospital does not understand my condition or willing to investigate further as logged as a patient at the other hospital, interesting they did inform me a ‘wash out’ procedure does not exist. At the moment its just a waiting game for a new battery if i get the funding all the while im impacted and unable to go have any movements at all.

Most recently i have been asked to take a double dose of Moviprep which is suppose to make you go and completely empty. Guess what - complete fail! I haven't been and its just made me alot more bloated, I look 9 months pregnant.

I take 8xMovicol, 2xSena, Linaclotide, 2xDioctyl and 3xLactulose a day and nothing works.

I feel very alone and like I’m being past from pillar to post.

I am severely impacted, suffering from a distended abdomen, struggling to keep food down after I eat as my body can not digest and I’m in a lot of pain as you could imagine as my bowels do not work at all.

I do not understand why the hospital can not investigate this further. I am suffering each day with more symptoms and taking more time off work.

I’m not a doctor but it’s not difficult to work out if your body is full of toxins of course that will have an affect and result in further issues.

Dani

[Hidden]

I hope this gets sorted out for you it sounds awful.

[Catherine2020]

How can they let you out without helping you clear your bowels first?. Having absolutely no BM for days on end is very dangerous. I would complain to your gp or just not leave a&e till something is done for you to get comfort. Do you do any colonic irrigation? That should shift things for the time being. Till you get it sorted.

[helen1992x]

i really hope you get this sorted i take daily movicol unless i’m in severe pain and get horrible bloating, then when i do go it’s just blood and mucus. i worry a lot that i will get to your stage by the time i’m 30 (i’m 26 in september) as i have been told i have a ‘lazy bowel’ and it takes longer for BM to transit through the large intestine. have you had a colonoscopy and endoscopy? i’ve had both 4 years ago and they’re repeating them next month xx

[Dani09 in reply to helen1992x]

Hi Helen

Yes I have had both those tests back before my SNS was fitted in 2013 however the colonoscopy was an unclear reading as when I took the picolax prior my bowels never clearer (surely they should have picked up on this?)

I have never had a CT scan, I have asked for one as feel this may show something other tests haven’t but they are very reluctant and also do not want to re-do any tests even though all my previous tests were over 5 years ago.

They discovered I had a slow transit through the markers and as soon as this was found they put it down to this but feel their might but something else going on?

[helen1992x in reply to Dani09]

Surely you’d think they’d repeat the colonoscopy if the first one was unclear? I think NHS cuts have a lot to play in this unfortunately yeah they didn’t want to do a CT scan on me either, they did an x ray first thing and that first showed impaction but that was 3 years ago! I’ve never heard of this SNS device! What hospital fitted it? I might mention it to my GP or when I go to see my consultant. It’s horrible that you have to take all those medications on a daily basis. Just 1 movicol makes me feel ill I hope you get this sorted x

[Dani09 in reply to helen1992x]

You’d think...I think that’s where it’s all gone wrong to be honest and that was over 5 years ago.

All my tests are over 5 years old and I’m fighting to get them re-done now.

I had my device fitted at St Mark’s but it has a battery life of 5 years and 5 years later it’s dead and now I have it stuck in me. They are saying they no longer agree with it as there wasn’t enough successful cases although I was okay with it. It is much more expensive than bowel removal and this now what they offer instead of. Disgusting that the option is a life changing operation is offered due to money. I am praying I get a new battery surely they have a duty of care as I already have it in my body. It’s a waiting game and in the meantime I’m left with fecal impaction due to zero bowel movements. Have you ever experienced this?

[helen1992x in reply to Dani09]

Well they usually repeat colonoscopy's every 5 years over a particular age, they don't seem to realise that people who are younger can get serious bowel problems as well! I have a family history of diverticulitis, ulcerative colitis and bowel cancer so I am a bit more aware of any bowel issues because of that and thankfully my GP is taking that into consideration now.

Oh I would've thought they would arrange a repeat appointment 5 years after it was fitted to essentially 'service' it. It's silly having it inside you when it's dead and essentially not doing anything! I can understand your frustration!

Yep I have faecal impaction a few years ago and it was not pleasant at all. They treated that with moviprep and lactulose I believe? I feel a bit sluggish, in a lot of pain and nauseated just going a couple of days without going to the toilet, so god knows what you must be going through right now!

My uncle had most of his large bowel removed due to colitis and had a stoma bag for a year while it healed and that used to terrify me but now, some days I would honestly beg for my bowels to be operated on to help because I am fed up of days spent crying on the toilet because it's too painful and nothing is happening x

[Dani09 in reply to helen1992x]

Hi Helen,

Thank you for your message, I totally agree with you and am pushing for tests to be re-done.

I’m seeing a different colorectal surgeon later this week for a second opinion on where to go from here but as you say you get to a point where I would probably except the bowel removal if that would end all of this!

In terms of the fecal loading I’ve tried everything...I’ve been pumping myself of laxatives all weekend after the double dose of moviprep didn’t work. I’ve taken 8 sachets of movicol a day, laculose, sena, dioctyl, Linzee, enemas and my home colonic kit and still nothing apart from losing abit of grit! I’m going to hospital today to collect something else but it work won’t as my body doesn’t respond to laxatives. My nerves don’t work. They need to think of a didn’t strategy.

[helen1992x in reply to Dani09]

Hi Dani.

Did laxatives use to work on you and now they're less effective? There's so many warnings on the packets that they are only meant to be used for 3 days but I honestly don't know how I would cope without them!

Do you find you eat less to see if you would not want to go to the loo as much? I tried that and sometimes it helps. I used to suffer with anorexia so going from eating basically nothing (I lived off coffee mostly) to then eating normally, I think it shocked my bowels and that's where all this started

Where did you get a home colonic kit? I've always been tempted by them and by mini enemas that you can buy but I am worried I wouldn't do it right and end up hurting myself!

Good luck seeing the new colorectal surgeon this week! Hopefully they have a better long term solution for you! You'll have to let me know how it goes. It's no life when you're just worrying about when you're next going to have a bowel motion and worrying what foods with help/hinder it! xx

[Dani09 in reply to helen1992x]

Hi Helen,

Unfortunately laxatives have never been affective as with STC is a condition where the nerves in your colon do not work so the laxatives also will not stimulate this. I have a stubborn stomach of steak and have never suffered from an upset stomach just chronically constipated.

I am sorry to hear what you have been through, it sounds like you have managed it well and have learnt how to deal with it. You should be proud!

I got given my home colonic kit from the hospital in the hope it would give me relief from the bottom end as the laxatives aren’t working from the top and I think it would if I wasn’t impacted. Fortunately I’m not crippled over I just have a very distended stomach as a result and very uncomfortable, it’s worrying to think of the what if’s and what’s happening internally but that should be up to the professionals.

[helen1992x in reply to Dani09]

HI Dani.

Oh god, so it's been a problem pretty much from day 1 then? That's awful!

Thank you it does suck, especially when I have had some people in my life who just didn't understand. Thankfully my family, close friends and my boyfriend now are all really understanding and get when I don't want to eat much and when I am feeling poorly and just want to get into bed or stay home.

Oh really? I might look into it. I know you can get colonics privately but I was a bit unsure how I would feel about someone jamming a tube up my bottom and flushing me out with water! I found the colonoscopy embarrassing enough, especially when they were like 'Do you want to watch?' Nope! I do not!

That's not very pleasant in itself though when you are really bloated and everything you wear is uncomfortable. Makes you not want to go out and do anything because you feel weighed down by it all!

Yeah it is very horrible to think all the what if's - I've resorted to not going to Dr Google as that makes me fear the absolute worst! x

[Dani09]

Hi Catherine

Thank you for your reply, I have been to my local GP who has given me all the laxatives which doesn’t do anything but I continue to take as it’s my only option at the moment.

The hospital gave me the double does of moviprep to do at home last week which was unsuccessful and I will continue with the Home kit (qufora) but I’m not releasing anything apart from water and a little grit.

My last natural bowel movement was last year and since then my only relieve was from private colonics which has become less of a relief and the person is now on holiday.

It’s appalling...if I go to a&e they send me home, I have been advise if nothing has happened by tonight I am to go and collect another laxative drink. I don’t want to be negative but feel they need to take a different strategy as I’m not responding to laxatives.

Has anyone else had treatment for slow transit/fecal impaction which doesn’t involve laxatives as I’m being told this is the only way.

Thank you for any advise,

Dani

[Iizzy]

So sorry to hear you are suffering so much.

My mother has slow transit and she swears by Ortisol which are small cubes that you chew with large glass of water. She buys them from either Tesco or Holland and barret. They keep her going in between regular colonics.

[Rozzy46]

Dear Dani

I just wanted to say how sorry I am you're suffering so much and not getting any help. I can understand how terribly alone you feel with it. I do hope you can get some help and quickly - the SNS sounds the answer - I don't understand the problem about a new battery unless it's very expensive? Surely cheaper than major surgery? Thinking of you - good wishes.

[missymo]

I have a a time due to some idiot consultant that fail to spot an absess on my appendix causing bowel blockages!! I was in agony collapsing with blockages that in the end I had so many enemas that left me in total agony.there was nothing to come OUT!! Then if course the absess finally burst& I was rush in with poison going all ound my body.took me a year to get over it but my bladder was so damaged that 18 months later I had to have a stone!! "Wee bag but the worst thing is I.m in constant pain& constipation. They put it all down to scar tissue & nerve damage through the vile operations I had to endure.my life was totally wreck! With OR without the stoma I wish you all the luck in the world.x

[Lovemyfamily89]

Hi,

Your story is like reading a horror book and I’m horrified about your situation. Which area do you live in? I think I would be tempted to make a formal written complaint if I were you as I think this may wake up the correct people for you and get you the attention you need.

I have had my permanent constipation problems since birth but I think I have been luckier than you with my treatment. I am in Sheffield and over the years have seen some very good ( and a few bad) experts in this field. I have had various drugs, some lasted a good few years for me, namely Manevac & movicol but when they stop working, life gets very difficult and even more painful. Over the last few years, since movicol gave up on me, I have not found a long term replacement as everything I am given only seems to work in the short term. My current consultant arranged more tests and the pressures in my sphincter muscle were very high. I had the inner sphincter muscle cut several years ago but it’s still high and the outer one is very high too but can’t be cut, so we have been discussing a stoma. I’m reluctant to have a major operation but I have pain and discomfort every day, which has affected my family as well as myself all of our lives and I’m beginning to think that the stoma bag will affect us all less and give me my life back so that I can squeeze in some adventures before it is too late! I have never heard of the SNS machine though and shall look that up to discuss with my consultant. I take bisacodyl and prucalopride. I presume you have already tried prucalopride? If not, could that be worth a try? It’s been working for me for nine months although I can feel that it’s getting less effective by the day! I’m having ‘camera down and camera up’ in two weeks time because apparently my blood tests suggest I could be internally bleeding. If this is correct, I presume it will be the medications which have caused this and if so, that to me is another reason to seriously consider the stoma as I’m hoping it would eradicate the need for the meds. I also have a blood condition that leaves me with low iron but I can’t take iron supplements because of the constipation so I’m thinking that with the stoma, I would be able to take iron supplements which will make me feel better too. Lastly, I have a back problem but darent take painkillers because they constipate you too ( I’m old and falling apart!) so hopefully, a stoma will allow me to take painkillers when I need them which would allow me to go out more and enjoy life more. Maybe the stoma wouldn’t be so bad for you too? I wish you lots of luck- please let me know how you get on.

[Dani09]

Thank you all for your messages, it is so lovely to hear I’m not alone and there are people out there that can relate to my situation. Most of the time I am made to feel this is me and I am to live like this for the rest of my life.

I was good all the time the SNS was working so am fairly confident i can get back to that if I get a new one. I’m just very concerned all bowel movements have stopped as that has never happened.

The SNS is very expensive and more expensive than a stoma although it’s unfair for the NHS to worry about money over quality of life.

I’m based near London and feel I’m dealing with two conditions now, fecal impaction which is caused by untreated slow transit.

The waiting list if I get funding for the SNS is beyond August but what am I suppose to do until then, I feel like my bowel will erupt and that’s actually when i will be taken seriously. Has anyone had to have a clear out before? How was this performed?

[Shirley-peirson]

Dear Dani

This sounds horrendous and can see why you would be very worried.

I too suffer from slow transit ibs c so much so I suffered cardiac arrest due to blocked arteries 4 stents fitted where I wasn't dispersing of my fat and billary sepsis I have also tried every thing after many years suffering I have found a place where I am able to cope and life is good.

Believe it or not it's down to what I eat and Linaclotide and oil of peppermint capsules (fruit veg chicken and fish yogurt) all combined I go every day. I also eat a small amount every 2 to 3 hours rather than big meals don't get me wrong it's taken a lot of dedication and mind training for example if I lapse and eat a sandwich (bread) or a pasty then I suffer for days so it's been a long time with trial and error I feel now I am what I eat and never felt healthier really hope this helps because I feel your pain xxxx

[Dani09 in reply to Shirley-peirson]

Thank you Shirley, that is really reassuring as I am a strong believer that this type of constipation is not one that is treated my diet or laxatives as it’s a neurological condition although discovered years ago heavy meals and carbs is just too much for our bodies to deal with.

I am sorry to hear you went through such a horrific ordeal and thankful you got the right treatment.

I fainted/fitted for the first time a few weeks ago, my periods stopped three months ago and constantly suffer from UTIs and pretty certain this has got to be linked. The DRs are quick enough to treat the UTIs but not quick enough to look into the cause. Very frustrating

[b1b1b1]

You mention your GP several times. You should be under treatment by a gastroenterologist. When you see a doctor do you fully explain how difficult and dangerous and worrying your situation is? It would be good if you can take another person (a close relative or friend) to all medical appointments with you. This can help deal with the fact that you are not getting what you need. Your situation is really dreadful and you should not have to live like this. Try for the new battery, but if that doesn't work a stoma may be the best alternative. I am in the US and find this whole situation appalling. At least things move faster here although the costs can be high. Hugs and xx.

[Dani09 in reply to b1b1b1]

Thank you for your message...yes I have been under a bowel hospital since 2013 and will be seeing a colorectal Dr next week for a second opinion which, I’m counting down the days. You are right things here in London are a lot slower! Fortunately I have amazing support from family and friends but we are like the blind leading the blind.

The forums are great to hear other people’s experiences and the gain knowledge. I’m not against bowel removal if that’s the answer but right now I’m in limbo with what’s wrong and what’s the answer.

[dipsy14]

Have you tried contacting you local member of parliament? Sounds to me like you need extra assistance and having an outside force could be the way to go to get a better outcome than you currently have. Sadly we are suffering the consequences of nhs cutbacks. I had an operation for kidney cancer in January. Supposed to have follow up to make sure I am clear but they've cancelled it four times..... and now I have no appointment at all. My doctor is really concerned as its important but they are still not offering to see me despite her intervention. Cut backs!! I feel for you ... my ibs causes so many problems, the latest to the problems along with my back is now diabetes. I know its all a downward spiral due to the ibs .... the medical profession are not interested.

But I think your case needs special intervention. Have you tried contacting PALS ... NHS complaints team? Or another hospital that you can be referred to, like a specialist unit?

You must feel at such a loss. I know the last thing you need is to fight for your treatment but that seems to be the only way now. I really think that bowel removal will present you with a whole host of other problems!!

No wonder your so scared. Sending you prays and positive thoughts.

So,so sorry I cant be more helpful. X

[Dani09 in reply to dipsy14]

Hi dipsy14,

Thank you for your message and suggestions.

I am sorry to hear you are also fighting the NHS, you’d think healthcare would be a given. It’s a shame we have to fight for what is needed.

I can not believe you they are denying you of a follow up appointment of something so serious. That surely is negligence? Can you not call the department directly to rearrange?

I have reached out to Pals and they listened and didn’t return my call.

I have done the same with my local mp but haven’t heard but yet.

I am waiting for an appt with a colorectal surgeon this Saturday for a second opinion however health professionals are more concerned about my STC and not the fecal loading which is causing me more problems. Like you they like to treat the further symptoms rather than the original cause.

Can’t see a new battery working if they haven’t dealt with that first.

Fingers crossed something will give soon and someone will get back to me with a solution other than laxatives.

[dipsy14]

Oh bless you!! I've been in contact with the department many times, makes no difference. So hope you can get a proper result ..... have you looked to see who in the country is a specialist with the battery? Just a thought. I suspect you've tried everything though.

[drumore]

Hello Dani, My sincere sympathies. While I am no expert on your situation, it seems thatyou are in a similar situation to the one my mother suffered from all her life until we moved to a house in a new area. My Mum lived to the age of 98 .

Mother was having problems and we called in the local country Doctor who asked " How long have you had this problem ? " and promptly arranged an operation where they removed a section of bowel. ----- it was diagnosed as 'Spastic Colon ' ----

Mother never had any more problems ---- Just a thought -----!

[Dani09 in reply to drumore]

Thank you for your message, sound similar in the fact that the bowel is not responsive and logically the only way forward would be to remove it.

I’m glad this was successful it’s reassuring to hear...and how amazing that although you feel it’s life changing it’s doesn’t affect your life clearly. What a fantastic age!

[Betty30]

First of all, Dani, I want to say I'm proud of you...you are a very strong young woman!! This means you are a winner and YOU WILL win this game, by golly!! I don't know how difficult it would be to switch doctors...but I wonder if this is a possibility for you?? I know some things are a lot easier said than done. Take good care now and sending you a big hug! <3

[Dani09 in reply to Betty30]

Hi Betty,

Thank you 💕 I’m a strong believer we are all given the cards we are able to deal with and everything only ever makes us stronger. We will all get there and it’s just so lovely we can try and help with each other’s experiences because the Dr’s don’t truly understand.

I’m seeing a new one on Saturday so fingers crossed it he has the answers I’m looking for 🤞

Dani

[Hidden]

Hi Dani,

You may find there is a much deeper issue than the surface problem.

But one that can be resolved:

sickofibs.com/ibs-triggers/...

You might find it useful talk to your doctor about this and see what he says.

Alison