# I want my life back



## Marv72 (Sep 29, 2013)

Hello everyone, this site has been a god send to me, sometimes you feel like your the only person to feel like you do and trying to explain to other non sufferers usually ends in confused looks and sniggers. I have been lurking on the site for some time and have only just got the courage up to post.
I haven't had any kind of diagnosis but I'm beginning to think after reading many posts on here that I have ibs -c. 
My story started 2 years ago, I have never been regular but it was never a problem, it was just one of those things and I never gave it any thought. Overnight and I do mean overnight my bowels just stopped working. I haven't gone naturally for 27 months. The only way I could go for 18mths was by getting it out manually. This meant I could be sat on the toilet for over 2hrs,sometimes more. Then I would end up with horrendous diarrhoea . It's almost like I've removed a plug and my stomach would just explode.
I've been in constant pain for the whole time,my stomach never feels normal,always feel like I'm going to have an accident,though I never have,full of trapped wind most of the time and very often feel very sick. the pain very often feels like the worst kind of stitch you can imagine. Not one day has gone by when I haven't been in pain. But the worst symptom is feeling like a have a large marble stuck which makes me feel like I need to go all the time. I now take fleet enemas which help but I'm not supposed to do them everyday but often feel like I have to so I can get through the next working day.
I used to be the most outgoing person but these days I hardly leave the house , I have next to no social life and when I do have to go out to work etc etc I get myself into such a state that I almost feel like giving up work and just staying at home . I'm a single mum and not only am I suffering in so many ways but my 15yr old daughter suffers greatly too as I no longer go anywhere with her because of the my fear of my condition and not knowing where the nearest toilet will be.
I haven't had a day out in 2 yrs, no shopping trips with my daughter and often have to rely on others to do some shopping for me. I haven't seen some family members for 2 yrs as I daren't travel,going on holiday feels like a very dim and distant memory
I am desperate for any help and advice that anyone is willing to give me as right now I'm about ready to give up.
I am due to start taking prucalopride in November when I have booked 2weeks off work to deal with the side affects which I understand can be pretty horrific so if anyone has any dealings with this medication I would love to hear your stories
Thank you for taking the time to read this and thank you in advance for any advice


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## annie7 (Aug 16, 2002)

HI--welcome to the group although sorry you have to be here in the first place, of course. yes it is miserable, isn't it, suffering from ongoing constipation.

do you have a good gastro doctor? have you had any tests? from reading what you were saying about having the feeling of a marble stuck makes me wonder if maybe you have some kind of outlet obstruction like a rectocele or possible pelvic floor dysfunction. these and other outlet problems can be diagnosed with a test called a defogram (defecatory proctogram).

and you might want to have your colonic transit time tested as well with a sitz marker test (colonic marker study) to see if you have slow transit problems.

a good gastro doc can order these tests and also help you with a treatment protocol if it turns out that you have one or both of these problems. i've had these tests and more--lol.. i have pelvic floor dysfunction, a moderate size rectocele, a vaginal prolapse and also slow transit constipation.

one thing i have found is that putting my feet on a shoebox--or a step stool, wastebasket turned on it's side etc--while on the toilet helps me have a more complete bowel movement. elevating the feet while on the toilet straightens out the anorectal angle and allows for a more complete evacuation.

good luck with prucalopride! i do hope it helps you. and i do wish we had that med here in the usa. i know it can have a some side effects but still, i'd love to try it!

take care. wishing you all the best.


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## Marv72 (Sep 29, 2013)

Hi and thank you for the welcome. Yes I've had pretty much all the tests done. I have a small rectocele and an intrussuption but not bad enough to have surgery on apparently .also my pelvic floor is shot to pieces apparently which I why I also suffer with an over active bladder. I really want to have the marker test done but my doctor won't send me back to a specialist until I have tried the prucalopride . To be honest my own doctor isn't very sympathetic and just keeps telling me to eat a better diet yet the gi doctor told me that nothing I eat or drink will make any difference to whether I go or not. I'm just glad to find that I'm not the only one who's list of symptoms seems to get longer and longer by the week. Oh and yes I have a stool. I have tried every medicine on the market over the last two years from fiber tablets to suppositories. The only way I can get rid of anything at all these days is to use fleet enemas but I'm finding I have to use these more and more often and getting less and less results. I'm hoping the prucalopride will be a miracle drug but I'm not holding my breathe, sometimes I wish I could just have a bag


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## annie7 (Aug 16, 2002)

yes, it is difficult and frustrating isn't it. especially when you keep trying all kinds of things and nothing seems to work. or else it will work and later quit on you. i've had chronic constipation problems for over 50 years..

you mentioned enemas. have you tried the peristeen irrigation system? or the qufora system? it sounds like they're quite similar. from what i've read that others have said, it sounds like these enema systems can be quite helpful. they are different than regular enemas. i've read someone say that they use both peristeen and prucalopride and have success with using both of them together. peristeen and qufora are another thing that are available in the uk that i wish we had over here. i'll try anything--i'm desperate--lol..

yes--i understand how you feel about sometimes just wanting the bag. i've felt that way too and have talked to my gastros and a colorectal surgeon about it. they all wanted me to try biofeedback first which i did but that hasn't helped much. i've been reading on an ostomy board for quite a while and i realize getting a bag is quite a serious step. many people do say it gave them their lives back but ostomies are a bit tricky to manage it seems. kind of like trading one set of problems for another, as the surgeon told me. definitely a last resort.


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## Marv72 (Sep 29, 2013)

Think I may have to look into those forums myself,as u say yr probably just setting yourself up for a whole new set of problems, I've tried the irrigation systems but unfortunately they don't work for me either.
If someone had told me afew years ago that all this was possible I would never have believed them. Can't believe how much a persons life can change so drastically 
I'm guessing you've pretty much tried everything yourself. How do you cope? Do you have any kind of normal life or do u just cope with the really bad days and embrace the better ones, I won't say good days as in my experience there is no such thing as a good day just a better day


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## annie7 (Aug 16, 2002)

you're right. we have bad days and we have better days and oh yes i do so treasure and am grateful for the better days.

my gastros and surgeon have all told me to "take what i need to go" which for me is a combination of dulcolax (15mg) and 3 TBL milk of magnesia nightly. often with a gylcerin or dulcolax suppository in the morning to help if needed. i've tried all the available meds, supplements,enemas, otc stuff, biofeedback, etc and nothing else works. on a better day the laxatives work well and on a bad day they don't.

and basically i just soldier on through the bad days. i try to stay positive and try to do as much as i can on the bad days. getting things done--even a little bit-- helps distract me from the pain and discomfort and at least gives me the feeling that all constipation misery isn't just sucking my life away. and it isn't--i won't let it!







it certainly does teach us to be strong.

here's a link to the ostomy board i've been reading--it's a really great board. lots of helpful people there. and it definitely has given me a realistic idea about what living with one can be like:

http://www.inspire.com/groups/ostomy/


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## Marv72 (Sep 29, 2013)

Thanks for the link,will have a look at that now. Thank u so much for taking the time to reply to me and for your help. I just hope you find something that works for you there must be something out there that can help us.....guess we mustn't give up


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## annie7 (Aug 16, 2002)

oh, thanks--you're more than welcome.

there's another board i read. it's for people with gastro motility disorders. lots of people on there with constipation problems, just as there are on this ibs board:

http://www.inspire.com/groups/agmd-gi-motility/

and yes i do hope that you can find something --or a combination of things--that helps you. hopefully prucalopride will help.

you're right--never ever ever give up...wishing you all the best.


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## qeiane (Jul 31, 2013)

Im the same its awful also have multiple sclerosis...my bowel rules my life nothing works at all...tried the lot...i have got the peristeen system you talked about its prescription and you need a gp to prescribe at least....look up coloplast who make them.and watch the dvd's or call them...they are mainly for people with ms or spinal injuries but cant see why couldnt be prescribed for ibs....i wish i could have a bag fed ip of the constant pain.had proctogram wed so see if that shows anything


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## Marv72 (Sep 29, 2013)

Sorry to hear your having such a bad time, hope the proctor am sheds some light on things for you. Let me know how u can on wont you?
Every time I got back to my gp I think something may get sorted but not happened as yet . I've tried the irrigation systems with the water and the bags but they just don't work for me at all....hoping the prucalopride will do the trick for me but I won't hold my breathe


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## Marv72 (Sep 29, 2013)

That should have read proctogram stupid spell check!!!!!


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