prucalopride/resolor... side effects OMG!

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Ironmum
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Date Joined Oct 2010
Total Posts : 776
   Posted 5/7/2011 3:40 PM (GMT -6)   
After going round and round in circles with various Drs etc over last few months, have finally been diagnosed with colonic dysmotility caused by previous surgery/peritonitis in 2010.

Have started prucalopride/resolor (2mg) today - my GP had never heard of it and had look it up in his book. Anyway.. within 90 minutes (I kid you not) I had the worst headache, nausea, dizziness and then the violent diahorrea started! so far have been 8 times.. and only took the first pill 6 hours ago. I feel SO sick.. it's awful! and to make matters worse I'm still massively bloated and distended :-(

I knew there would be side effects but hadn't expected them to be so violent and immediate.

Does anyone have much experience of taking this drug or know how long these side effects will last??? I'm assuming they will wear off in time.. ?? this is worse than picolax! I'm worried I'll be housebound next week... :-(

Any advice or experience much appreciated.. thanks x
Sarah - 38 year old mum of 2 boys, competitive runner/triathlete, health and fitness writer

June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp ileostomy
October 2010 - Ileostomy reversal - but didn't go well and struggling since.
Currently - not going well...

2much2bear
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Date Joined Mar 2008
Total Posts : 624
   Posted 5/9/2011 11:25 AM (GMT -6)   
Hey sarah
 
well on the one hand it is working and on the other hand you are still bloated...so do persevere  -  may be it will settle down. Its been just a couple of days hasnt it so give it a bit more time.  its a nuisance i know. 
i nearly gave up on it but decided to perserve and side effects went away after a week or so ...( i had incredible lethargy mostly).
 
i am on just the 1mg though for some strange reason. but i take 2 a day withe juice as it does not work effectively for me on its own .

Karen: 49 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR procedure - mucosal prolapse/ODS/diagnosed slow transit constipation
2007: Sigmoid resection (MRI showed twist) - made colonic inertia worse (cleared obstruction though)
March 2009: Total colectomy with ileorectal join and loop ileostomy
23 Sept 2010: Ileostomy reversal - not going well

Post Edited (2much2bear) : 5/9/2011 10:30:26 AM (GMT-6)


Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 5/9/2011 11:43 AM (GMT -6)   
hey Karen thanks for your reply... how are you doing hun?

well 3 days in and side effects are slightly better.. the headaches are gone and the nausea not so bad. Diahorrea has also stopped though... just a few 'dribs and drabs' now if you know what I mean! but things do seem to be moving a little better in general. Not sure if 'better enough' yet.. but it's a start.

I do feel 'brighter' though.. certainly not tired which is odd! isn't it funny how we respond differently to the same thing?! I wonder if you're on 1mg because you had a colectomy? from what I can see on the web prucalopride works on the colon more than the small bowel. Also my GP prescribed it (there was no dose info on the letter from Prof) so that might be different?

I will persevere though and give it 4 weeks.. if this doesn't work, then I reckon my last option is an end ileo - no-one is talking about a colectomy. He thinks the motility 'may' return, but it could take years and may never be the same. I can't live with it that long.

I've never tried prune juice! what brand do you use? do you think it might help?

One thing I have noticed with the drug is that my stomach rumbles and I do feel hungry more which is a nice feeling! not had that for a long time.. just been clogged up, bloated and stuffed mostly ;-) so that's good!

Do you know anyone else who has tried this drug? no-one seems to know much about it..
Sarah - 38 year old mum of 2 boys, competitive runner/triathlete, health and fitness writer

June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp ileostomy
October 2010 - Ileostomy reversal - but didn't go well and struggling since.
Currently - dx colonic dysmotility April 2011

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 5/9/2011 11:50 AM (GMT -6)   
sarah its good your tummy is rumbling - means something is occuring and about to move! Yeah its a nuisance when no one knows when your bowel might start to 'connect' and begin to function again - it is something to hold on to but an unknown and at least you have a plan and that is good.

I just take sainsbury's prune juice - longlife one not the fresh as it is cheaper - it is on offer right now.. it never worked for me before the total colectomy though - only the extreme laxatives. you can try it and see.

i think it is only in europe so far and is relatively new here.
Karen: 49 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR procedure - mucosal prolapse/ODS/diagnosed slow transit constipation
2007: Sigmoid resection (MRI showed twist) - made colonic inertia worse (cleared obstruction though)
March 2009: Total colectomy with ileorectal join and loop ileostomy
23 Sept 2010: Ileostomy reversal - not going well

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 5/11/2011 12:31 PM (GMT -6)   
things not going well here.. after initial excitement that the prucalopride might work and a bit of 'action'.. I'm back to square one huge distention, nausea, rapid heartrate, horrible feeling and last night was up ALL night. Not a wink of sleep. I've been really really careful with my diet and not made any changes since I started the drug.. today has been awful.

It feels like the side effects have worn off, but so has any effect :-( Feeling pretty miserable and very grim today.

Have made contact with my old stoma nurse for a chat and some advice. Both the prof and my original surgeon have said (reluctantly) that they would put the ileo back for me, but saying that it seems' extreme' (how much would they like me to suffer do you think???). I don't think anyone has any idea what I'm going through and how awful this is. I have no quality of life, can't really work, train and am struggling day to day with life, caring for my kids and feel really low. I'd rather have the ileo back and just cope with it than live like this...

I can't see how the motility can return? and I'm not entirely sure I'm able to wait and find out.

My GP has suggested homeopathy, acupuncture etc etc... worth a try I suppose??

What do you think?
Sarah - 38 year old mum of 2 boys, competitive runner/triathlete, health and fitness writer

June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp ileostomy
October 2010 - Ileostomy reversal - but didn't go well and struggling since.
Currently - dx colonic dysmotility April 2011

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 5/12/2011 4:08 AM (GMT -6)   
Sarah
 
why were you up all night?? was it the discomfort etc???   ARe you not 'going' much??? I get how you feel... after all you do have nerve damage to your bowel and it is not really responding to the prucalopride..
 
You could try the acupuncture etc but personally i have been there and i wasted vast sums of money on alternative therapy... however if you can afford it then go for it as you have nothing to lose. At the end of hte day you DO have a malfunctioning bowel and it is very hard to treat conventionally.  Did prof williams say he would give you an ileo if you do not respond to this???  I wouldnt pay attention to the other surgeon who thought you had the bacteria problem. 
 
Yeah i am 'lucky'cause i work from home - i couldnt  get out the house very easily and concentrate otherwise.  It is hard with young kids i am sure as it takes over your life completely. 
 
When do you go back to see Prof williams?  i am sure he will be happy to dicuss surgery with you if this is failing .... after all that is why i had a colectomy cause i did not respond to laxatives very well at all... and in any event that is your experience too..  
 
I have been weepy too at the way things have turned out and geting my head round the fact i will have a bag til the day i die... it is tough but at the end of the day it is quality of life that is important .sori you are feeling low. xx 
 
 
Karen: 49 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR procedure - mucosal prolapse/ODS/diagnosed slow transit constipation
2007: Sigmoid resection (MRI showed twist) - made colonic inertia worse (cleared obstruction though)
March 2009: Total colectomy with ileorectal join and loop ileostomy
23 Sept 2010: Ileostomy reversal - not going well

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 5/12/2011 6:43 AM (GMT -6)   
hey Karen
I was just so uncomfortable, nauseous and bloated with a rapid pulse - when I get like that I can't lie flat in bed and am so uncomfortable I can't sleep at all. I end up being up all night, sometimes with my fingers down my throat trying to be sick - never works. It generally happens at least once or twice a week. Have discovered all sorts of strange TV shows in the middle of the night! Anyway.. last night I had some picolax at around 6pm which cleared everything out and I had the best night sleep in ages (same thing happened when I had the colonoscopy). Feel wiped today, but at least am able to go out - have walked the dog and doing a bit of work this afternoon.

The strange thing is that I still do 'go' but its in dribs and drabs and there feels very little power or pressure to push it out.. sorry for being gross! I'm not like other people with CI on here who don't go for days and days. I guess my problem is dysmotility and that could mean its working in a disjointed way rather than not at all. Oh I don't know!

Prof said to give the prucalopride 3 months (!) and then go back and see him. I'd said in myhead that I'd give it 4 weeks, but after only 4 days I was on the picolax.... hmmmmm.

He has said he would give me an end ileo with mesh support if this doens't work.. but he did say he thought that was 'extreme'... but to be fair I don't think I've really spelled out to anyone just how bad this is... I've always just got on with things and played things down. So I perhaps need to spell it out a bit more! He hasn't mentioned a colectomy at all - which I guess must be an option too??? I don't really know.

I totally agree with you about the acupuncture and other alternatives - I just cant' see how it can work... a friend of a friend suggested I should try yoga as I clearly needed to get my 'head sorted out'... could have punched her!

I would go back to my original surgeon as he wasn't the one who suggested the SIBO thing - that was a GI doctor who I got referred to. I think original surgeon would also put the ileo back for me.. he used to work for the Prof. The main benefit being is that it's local - the trek to East London is a real drag (1.5 hour trip) and puts the whole family under huge strain as we need childcare and my husband works in the City and can't take much time off etc. Kids and friends can't visit etc... HOWEVER.. the prof's surgical skills may be much better and it may now be a complicated case as i've already had one ileo. What do you think??

I'm not surprised you're feeling tearful.. I'm right there with you. It's a HUGE decision to make to have this forever and whilst quality of life is pretty grim right now, the thought of the bag for life is a big one to get your head around. I guess the benefit we both have is that we know it works for us and how much better we feel with it... just hang onto that. I bet in 6 months time we'll be comparing notes and wishing we'd done it sooner! hang on in there hun.. sounds like you're making the right decision to me!
S x
p.s. I work from home too but am a 'health and fitness' writer and a running coach.. pretty hard to stay motivated and write about health when I'm feeling so rough :-(
Sarah - 38 year old mum of 2 boys, competitive runner/triathlete, health and fitness writer

June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp ileostomy
October 2010 - Ileostomy reversal - but didn't go well and struggling since.
Currently - dx colonic dysmotility April 2011

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 5/12/2011 7:18 AM (GMT -6)   
Gosh that sounds awful feeling like you must throw up to feel  better shocked
 
Sounds like you need to keep on with the senna and picolax to keep the bowel emptying properly - honestly if they are what only works then no point in taking the prucalolpide  and prof williams needs to know this.  I have found it hard to remember everything and feeling a bit intimidated by having to talk aboput the nitty gritty gross bowel issues but they have heard it all before... you would not believe what ppl have to do in order to go to the loo!  i am not grossed out at all by anything cause i have been there and done it all....
 
Actually, I used to 'go' everyday in fact but was still diagnosed with CI - i was surprised but made sense cause i just felt like you i was not going effeciently (i also had a bit of a sigmoid obstruction) and it used to take alllll morning long - played havoc with my working life - thank God i was made redundant and found a job working from home.
 
Three months is the usual time he gives to see if something works - same here. you could see him sooner as you are private -  i will have to wait til end May however - he is so booked up. 
 
So your orig surgeon used to work with Prof williams? how interesting.  if so then he learned from him i guess?  what hospital is that by the way???  Not sure about who to have surgery with but would go with whoever has more surgical experience of ileos i'd have thought. 
 
i know prof williams does not do surgery anymore he just oversees it - that is what he told me  - i dont know why that is - he is passing his knowledge and skills along probably cause he is rather old isnt he.
 
Where do you write your articles by the way?
 
Thanks sarah - yes i hope we will be comparing notes in six months' time and living full healthy lives most definately! x
Karen: 49 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR procedure - mucosal prolapse/ODS/diagnosed slow transit constipation
2007: Sigmoid resection (MRI showed twist) - made colonic inertia worse (cleared obstruction though)
March 2009: Total colectomy with ileorectal join and loop ileostomy
23 Sept 2010: Ileostomy reversal - not going well
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