I wish to know if anybody has a good management advise/ option or good doctor for slow transit colon in Sydney NSW.
I came back from test result review of transit study with no good advise.
Life time decades of chronic contipation and it is not because of doctor's favorite fulid, fiber, excersie...etc.
So I was recommended by gastroenterologist to try FMT. Done it with that very healthy diet for 2 years, after even overdose of senna stopped working, still weekly bloat, food sits there forever, distention, fullness and nausea....many of you may understand.
Then last year rectal prolapse, had surgery and after few several month it is coming back with rectocele which showed in defeacography last month.
Could not bear living like that feeling sick all the time went back to colorectal surgeon at public hospital. I went there because I could not even manage it anymore with (not senna) laxative, rectal laxative, past several month. Try not to but it is difficult not to get affected by this daily.
Today, got result of transit test and it said Slow Colonic Transit. That surgeon told me it is slow but still moves and even with the sickness I feel, there was nothing he could do at this stage, he said it is not as far slow as to suggest surgery.
I am going to biofeedback recommended by my other colorectal surgeon to at least resolve internal prolapse and rectocele.
I’m exactly the same. In fact identical. Surgeons keep putting off surgery. Constipation is awful but the nausea is debilitating. Cannot plan or enjoy anything. Eating because you have to. I have slow transit live in u.k. I have been prescribed resolor aka prucalopride on NHS for 28 days 20mg. I believe it is very expensive privately. I have started on 10 mg by cutting in half. So far so good. Maybe look into this. I truly sympathise had 50 years of this. Good luck 🙅♀️
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Thank you for the reply. It just takes emotional lift off to hear from someone who is going through the same thing and understands . Took forever to even get my family understanding why of " Cannot plan or enjoy anything. Eating because you have to" .
Thank you for the information on your medicine. It seems like it is available in Australia too. ( I was prescribed Colchicine from gastroenterologist for post FMT procedure, but my GP has concern for long time use for the toxicity) .
Did you visit gastroenterologist or colorectal surgeon to get that prescribed?
50 years..my sympathy for you too.
I hope you are managing well enough.
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I am seeing both. Gastro prescribed picosulphate which I refused to take long term. Referred to colorectal surgeon who prescribed resolor. Very early days. I control mainly with movicol and suppisitoties. My family do not understand either. They think it’s in my head. When I eventually ‘go’ after several days I can be in the toilet 10 times over an entire morning. I work and ‘manage’ but I wish my life was different. I remain hopefully that things will improve one day, hopefully for you too. x
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It truely tears me to hear that. There area's study seems to be slower than other disease still there are doctors and specialist think it is just a constipation and nothing to concern (which go on for decades??)
My family too thought I was imagining and over reacting as well until this year.
I have been on movicol and suppositories sometimes microlax mini enema too for last several month, but was told yesterday to get off them all and to try one at a time with minimal. I will ask my doctors about your resolor vs colchicine which was prescribed for motility.
I too wish just a basic of living is not this hard. It is hard to make careful decision on every choice for eating drinking even tea or coffee.
Let's hope things, studies, and treatment options will improve soon and thank you for listening to my winging.
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You are very welcome. I agree with all you say. I cope well and remain positive that when I finally get surgery things will improve. I had bio feedback 17 years ago at the leading bowel hospital in the U.K. St Marks waste of time. Please keep in touch we can share our progress. Take care x
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Yes, will keep in touch. At least I can learn to cope better for now starting with medication combination and dose. and enjoy life as much as I can when I can. You too, take care and lets hope tomorrow we will be having a good day
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Hi, how are you today? Session 1 of the physio biofeedback was about retraining breathing, with ultrasound, posture+ breathing on toilet which happened to be what I already have been doing. But may be this general breathing retraining may do something, so I will just listen to the professional till next Dr review. Dr's initial attempt was to improve the bottom problem but she told me something about what she can help with slow transit too which I am looking forward to at next session.
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Hi I’ve done all that. Made no difference what so ever unfortunately. Resolor is working well but side affects are not good. Good luck
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Thank you. I try not get too hopeful. I guess I got to try as advised my surgeon before asking further options even though in my mind I don't really have patience in trying trying the conservatives...only for few month. I would like to ask doctor next time I see him If surgery is going to improve the situation even a little.
Only on the first time I took it, which was during the day, because my instructions didn’t tell me when to take it but now I take it as I go to bed and usually it works by morning. Occasionally, the need to go to the toilet wakes me earlyier than I normally get up, but not often. I don’t get any side effects this way.
Hi there. So sorry you have this awful issue. I have a similarly long history of this slow transit bowel. I have had periods of time where I’m nauseous and other periods of time with intense lower abdominal pain, other times when I just slowly bloat and my belly becomes hard and very swollen and finally I have to take more drastic action or my haemorrhoids and rectal spasm and pelvic pain get the better of me
Presently the issues are painless but embarrassing because I have fecal incontinence - or more often - urgency - without much warning. But at least no pain or nausea and I seem to have conquered the worst constipating effect of my slow transit/ dysmotility.
This marked improvement has happened since a gastro I saw twice decided to try Constella (Linaclotide) on me. This drug works pretty well for me apart from if I don’t drink enough water or take it too close to eating breakfast and then I’m pretty much tied to the house.
Also I’ve discovered that high fibre foods such as dried prunes and apricots are a no no as then the fecal urgency then becomes fecal incontinence.
I too have a rectocile and prolapse now but they aren’t severe enough to warrant surgery I feel.
A lot of this has to do with a combination of my confirmed and longstanding autoimmune diseases, Sjögren’s and Hashimoto’s, and having very problematic vaginal deliveries of 3 babies. My late mum had all these problems too and I think we both have hypermobile guts.
Like her, I do manage this by myself with some difficulty but unlike her I have researched it and sought medical help - so I will hopefully fare better than she did (4 months in hospital with massive knot being cut out of her intestine followed by MRSA, incontinence pads and a shortened lifespan).
I carry a lightweight rucksack with spares and tea tree wipes and my daily Constella and these props are probably as good as things will get for me. All the other laxatives, suppositories, magnesium and prunes people try helpfully to suggest have only caused much worse problems. It can be very uncomfortable and humiliating but I now know the causes (dryness throughout the gut and autonomic dysfunction) and this helps me self manage.
I too have slow transit, rectocele and I have scar tissue from a sphincterotomy done around 13 years ago plus over tight sphincter muscles. I am currently on 2 x bisacodyl & 2 x prucslopride ( reselor) per night, but I have also been seeing a colorectal surgeon and am considering an ileostomy because I’m so sick & tired of feeling sick & battling the numerous painful toilet trips each day. I have never had a bowel movement without drugs. I was on medication whilst still in nappies and I am 50 years old now. It’s a horrible way to live and truly, most of the time I exist rather than ‘live’. My family are very understanding but it’s awful to inflict all of this on them too. It stops me doing so much which in turn stops them doing things too. I try really hard to get on with my life but it’s impossible. I was told that I’m very lucky my doctor will prescribe the prucalopride ( reselor) as it costs around £72.00 per month. I’m very worried that if I do not have the ileostomy, what will I do, when the prucalopride stop working as I have exhausted all the other drugs. The prucalopride work reasonably well, if you can get hold of them, I would recommend you try them . Good luck 😀
Hi everyone, thank you for the reply. and so sorry you all have to fight your battles. but also good to know that seems like found a better way to manage. After few days from the diagnosis, at least, now I can feel that I don't have to feel guilty or bad about taking something anymore.
Also that YOUR COMMENTS "I now know the causes (dryness throughout the gut ", "considering an ileostomy because I’m so sick & tired of feeling sick & battlin" and ' It’s a horrible way to live and truly, most of the time I exist rather than ‘live’. My family are very understanding but it’s awful to inflict all of this on them too. It stops me doing so much which in turn stops them doing things too. I try really hard to get on with my life but it’s impossible'
Deeply understand above!
I went to phyiso biodfeedback session 1 - I wan not sure if my pooping was correct, but what they taught me on the first day was what I was already doing, breathing, postures, opening mouth...etc it just I did not know if it was correct by professional view. After finding reason why of I am bloated, I dry hard thin stool, followed by pasty thing...etc and fullness plus not moving feeling in colon.. I think I can now find a better way to manage it. Thank you every one for your story and tip!
But yesterday, even not eating much, the fullness, sickness, nausea was terrible and I really wished some Dr would suggest chopping it off... I will try this physio biofeedback for few months first and ask about if my Dr consider that option at next review or better prescription like the ones you suggested.
I hope we all can have a "better bad day" weekend xxx
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. Took forever to even get my family understanding why of " Cannot plan or enjoy anything. Eating because you have to" .
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