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Discussion Starter · #1 ·
Hi, just joined, thought I'd post my story whilst I read posts...

Background

I've recently been diagnosed with constipated IBS. I was originally diagnosed with IBS many years ago, but it was never like this and hasn't seriously affected me until now.

Five months ago I stopped drinking alcohol. Before that, I was drinking little, but regularly - 3 pints of beer a week. Historically I was a much heavier drinker, but have scaled back loads in recent years. As soon as I stopped I was beset with chronic constipation, bad enough that I couldn't have a bowel movement at all without a laxative. No choice but to take Dulcolax (bisocodyl), which I've been on for five months, while waiting for doctor's appointments.

I had a CT colonoscopy & blood tests, which were all clear (phew!) apart form evidence of 'quite a tortuous sigmoid colon'.

I then got a GI consultation. I went private to avoid the 4 month wait, then referred back to the NHS. The doctor diagnosed IBSc, said it wasn't IBD and the tortuous sigmoid colon wouldn't be contributing to it. He advised a celiac blood test and a referral to a dietitian, which I've yet to attend.

He also prescribed prucalopride (Resolor), a relatively new drug for laxative resistant constipation. Its a 5HT agonist working in the gut much like prozac does in the brain synapses. So far, it seems to be helping with minimal side effects (fingers crossed).

I now have several concerns:

I don't want to become reliant on prucalopride as I have been on bisocodyl, because while its helping the important symptom its doing so by masking it, not tackling the problem. Does anyone else have any experience with prucalopride?

I don't want to go back to Dulcolax if the prucalopride loses effectiveness, but I may have no choice. I reckon the Dulcolax was causing inflammation/irritation in the colon, which is not something anyone needs. I hear differing reports, some saying stimulant laxatives are harmful and addictive for long term use, some saying that there is no evidence to support that. What is the consensus?

I want to modify my diet and lifestyle to help me out and I'm willing to put in the work. However, how can I try various diets if the medication is masking the symptoms? I can't come off it if its working, as I really can't have a BM without it.

Diet wise, I'm looking forward to seeing the dietitian. Does anyone have any thoughts on fiber for IBSc? I've had a reasonably high fibre diet in the past and upon reflection, I think I've been suffering from functional constipation for years. I've seen many reputable sources that recommend a high fibre diet. The traditional view is a high fibre diet to bulk stools and aid peristalsis. Fair enough. But won't that lead to even bulkier stools, more straining and more pressure on my tortuous sigmoid colon? Won't that cause more issues in the long term?

The inability to have a bowel movement without medication coincided with stopping drinking alcohol. I suspect the small amount of alcohol may have been acting as a natural laxative and I'd become dependent on it. Maybe this is a red herring, but has anyone else experienced something similar?

Also, has anyone else experienced systemic itching with IBSc? I'm wondering if it was actually exacerbated by the bisocodyl also.

Thanks for reading.
 

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Hi

so sorry for all your problems.

have you had a sitz marker test (colonic transit study--sometimes called a shapes study) it could be that you have slow transit constipation (colonic inertia) and not ibs-c. i was originally was dx'd with ibs-c but after doing some reading here on the board and elsewhere, i began to suspect that more was going on than that so i told my gastro doc i wanted the sitz marker which showed i had colonic inertia. and then i had some other tests which dx'd a long tortuous colon as well as some other problems. my docs told me that my long twisted colon was definitely making my constipation worse, especially since i also had colonic inertia.

about fiber--a number of us here--especially those of us with slow transit constipation--have found that fiber is not our friend. fiber can help with constipation but only if a lack of fiber was causing the constipation to begin with. if one's colon is already moving slowly, dumping lots of fiber in there will just slow it down all the more. we're all different of course, but i found i definitely did best with a low fiber diet.

that's great that prucalopride is working for you! sadly, it's not available here in the usa. i sure do wish it was because i really wanted to try it. i've read a number of success stories. it's a lot like zelnorm was but with a better safety profile.

because nothing else worked for me, my gastro docs told me to take whatever i needed to go, which for me was dulcolax and milk of magnesia (take these two at least an hour apart or you'll get cramping) . my gastros told me dulcolax was safe to take. and i've read a number of articles online that support that. here is one:

https://www.ncbi.nlm.nih.gov/pubmed/15654804

all the stimulant laxatives that were considered unsafe to take were removed from the market years ago. i remember when that happened.

good luck with everything. take good care.
 

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Discussion Starter · #3 ·
Thanks for the reply Annie.

I've not had a colonic transit study. I had a CT colonoscopy, when I got the results the surgeon was very dismissive of my condition, its just functional he said. I saw another GI specialist, hoping to get more info, but again the feeling I got was that its functional, go and see a dietician. Ironically, my local doc's surgery mistakenly made me another GI referral (which I cancelled 'cus I already had one) and it was to the original guy who gave me the scan results. Why didn't he give me that consultation when I got the results?

Unfortunately, the prucalopride now seems to have stopped working, or at least not working as well. Already! I'm going to try and get an appointment with my local doc and see if I can be referred to someone else - no idea who though. There's a relatively local clinic that specializes in functional bowel disorders - I might suggest that.

Overall, I'm not impressed with the medical profession's attitude to my symptoms. It may seem like a mild issue to them, but its wrecking my life and causing anxiety. Living in fear of bowel impaction and a trip to the emergency room. Functional diagnosis? If you ask me, its the diagnosis that's functional, not the symptoms. Or more accurately 'a barely functional diagnosis'.

I see you are very active on the forums Annie, its good to see someone giving their time to offer advice and support. I'm sure many folk on here appreciate it. Hope your own personal issues are under control.
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Hi

thanks for the kind words..

so sorry that prucalopride stopped working . i had that problem with zelnorm which was a 5HT-4 receptor agonist. after doing a lot of experimenting, i found that if i took it only two or three times a week, with an occasional week long drug holiday, that would jump start it into working better. not sure if this method would work with prucalopride but it might be worth a try, since they are similar drugs. also--these drugs work best if you are not too backed up to begin with. if you are, doing a cleanout first helps them work better--start with a clean slate, so to speak.

your doctors' dismissive attitude is a crime. "just functional"!! how would they feel if they or someone they loved had to suffer like this! "just" functional indeed! chronic constipation is most certainly not a mild issue because, as you mentioned, it can lead to impaction which can lead to obstruction which is an ER situation. i've been there several times.

yes, do try the clinic which specializes in functional bowel disorders--that's definitely a good idea. or try a motility clinic or the gastroenterology department at a university hospital if there are any nearby. generally gastro docs who work at motility clinics or university hospitals are much more proactive, knowledgeable and up to date about dealing with chronic constipation than other gastros. that was definitely my experience.

good luck with everything. i do hope you can find a good gastroenterologist who can figure out a treatment plan that will bring you some relief.
 

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Discussion Starter · #5 ·
Had a bad week.

I've had a bad week.

I had a consultation with another GI specialist. he said to stay on the prucalopride and give it time, and continue to use the Dulcolax if I need to (which I do!).

He suggested that I might have slow transit constipation and plans to do a colonic transit test. He also suggested that I adopt a normal/normal fibre diet. I told him that I'm on a low fibre diet, which I've been following, but he said that was for IBS and that if I have slow transit I should be on a normal diet.

I'm now very confused and I don't know the best way to proceed.

I'm afraid of increasing my fibre content, but I imagine I'd need to be on a normal diet for testing purposes during the colonic transit test?

I'm still following the low fibre diet. I'm now feeling weaker and tired all the time (can't stop yawning) and a bit foggy. Maybe its stress or because I'm spending so much time sleeping. I'm drinking more liquids, but it goes straight through me - won't that actually cause more dehydration?

I have celiac and further blood test results to come later in the week.

Not coping well, finding even the basics of life hard to manage.
 

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oh so sorry for all that you are going through--sounds miserable.

that's good that you'll be having a transit test.

but--your consultant's advice re fiber really surprises me.

i don't want to tell you to go against your doc's advice but this was my experience with fiber etc. because i had colonic inertia (slow transit constipation) both of my gastroenterologists and my biofeedback physical therapist told me to do what worked best for me as far as fiber was concerned. i found that i did much better on a diet lower in fiber--about 17 grams a day. my gastros both told me that people with slow transit found that a diet low in fiber usually worked better for them because if the colon is already moving slowly or barely moving at all, adding more fiber to it would just slow it down all the more. which makes perfect sense if you think about it.

here is an article and a study explaining all this. i like their "traffic congestion" analogy:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3435786/

as far as what you eat during the sitz marker--i've had two sitz marker tests. for both of them i was told to just follow my regular (low fiber) diet as much as possible. i lasted about three days doing this but it was a pretty miserable experience because without my dulcolax, i was totally unable to have a BM at all. by the third day i was so backed up i could no longer eat food and so went to a liquid/ soft squishy food (eggs, yogurt etc ) type diet. from what i've heard, lots of people have to do this--you just get too backed up to eat normally during the sitz. i drank a lot of boost to keep my energy up.

during my first sitz marker test, i got so backed up by the fourth day that i developed an obstruction so bad that i could no longer urinate which sent me to the ER. the ER doc told me to abort the test, did the x ray, pumped a liter and a half of urine out of me and told me to go home and do a large volume enema.

if you feel that you are getting dehydrated from all that liquid going right through you, you could trying drinking gatorade or pedialyte to keep your electrolytes up.

if you're feeling weak due to not getting enough food, you could maybe try drinking liquid nutrition like boost or ensure.

i really do hope that you feel better soon.... like i said, it's truly miserable.....and yes, it is hard to cope.
 

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Discussion Starter · #8 ·
Thanks for the replies.

Annie, the colonic transit test sounds awful. Not taking laxatives? They are (as much as I hate it) the only things keeping me alive! Radioactive markers in my body? Sounds paranoid, but what if they don't come out? And x-rays? My gut biome must be ruined already, x-rays will finish it off. Not feeling comfortable with the prospect at all
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especially as the same guy suggested a normal fibre diet. Only problem is, he's the head of GI at my local hospital.

So do I go with the professional advice and have the procedure (as one would tend to) or due I royally annoy them and disregard what I'm told to do? Is it worth doing? Don't worry, I know no-one can answer that, I'm just venting... seems that all the professionals give different advice, which means that some of them have to be wrong.

I think my fuzzy head is post-postural blood pressure drop. Its worse when I get up and if I'm standing, better when sitting or lying down. Got blood test results on Friday. Not expecting them to flag anything but hey.
 

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oh yes--the sitz marker test is totally miserable for those of us dependent (as i was) on laxatives. i'm glad i took it though. i actually told my gastro that i wanted to take a sitz test. all along my docs had been telling me that i "just" had ibs but after doing a lot of reading here on the board and elsewhere, i began to suspect that i had a lot more going on than ibs. and the sitz marker proved i was right. it showed that i not only had slow transit but that i also had outlet problems which prompted my gastro to have me take a defecogram. that test showed that i had pelvic floor dysfunction. then i had an anal manometry which dx'd megarectum and rectal hyposensitivity as well. a colonoscopy showed that i had a long, twisted colon. no wonder i needed to take laxatives with all that going on--i needed dynamite to get anything out lol.

after having these tests, all my doctors started taking me a lot more seriously. so in my case, i feel that having all these tests was truly worth it because they gave me a correct diagnosis.

if you don't pass the sitz markers during the test, they will come out in your stool after the test when you do your post-test cleanout. they don't stay stuck in there.

regarding radiation--i have a number of chronic health problems and have had so many x rays, CT scans and MRIs --as well as six abdominal surgeries--5 of them last year--that i am resigned to glowing in the dark. not that that is a good thing of course but in my case, all this was unavoidable--they were all necessary tests. but that's me. i totally understand your point of view.

and yes--vent away! that's one of the reasons the board is here
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sorry about the blood pressure problems. good luck with your blood test results.
 

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Discussion Starter · #10 ·
So, peeing lots, fuzzy headed, then a blood test result with raised pancreatic amylase. Urgent diabetes test showed negative.

Then I stopped sleeping. Haven't slept for a week (save the odd hour or two) and now I'm on a 7 day course of Zopiclone.

First I find it hard to slow my breathing to sleep. Then if I do nod off, I get a body wide jolt/spasm that wakes me up! If that doesn't happen, and I actually sleep, then I wake up with a panic attack!

After 7 hours in bed spasming I went to A&E. Blood, urine, ECG, chest x-ray, all clear (including normal amylase).

Diagnosis: anxiety. I think my body is telling me I need to be awake because I'm in danger. I suspect the spasms are hypnic jerks. I think the stress of doing the Laxative Rodeo for two hours every morning, plus all the other related anxiety is making my subconcious mind tell my body it should be awake when it needs to be asleep.

And the prime cause, the constipation, isn't something I can ameliorate. Its actually getting worse. My GP is communicating with my GI specialist to move things along, but nothing back so far.

Isn't this fun!
 

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Annie, I just read the article you recommended about less fibre. Makes TOTAL sense and it's something I might actually try. I am like you in that I find adding more fibre (even just a small amount) makes things far worse. This article was very interesting, more doctors should read it and not be so quick to tell people to eat more fibre.

When I was younger and didn't try to eat as healthy, I didn't have as many issues as I do now. Not advocating going for a non healthy diet, but looking for fibre won't be on the top of my list anymore, maybe quite the opposite and see what happens. Everything is worth a try at this point.
 

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oh yes--are are sure right--experimenting with less fiber is well worth a try. good luck!
 
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