Proctogram (xray whilst on the toilet- no jokes) for endo-bowel symptoms. Has anyone else had one?

[lm330]

I am going to hospital tommorow for a proctogram. I have googled it and read the information booklet and it sounds unpleasant to say the least. I am grateful that they are investigating my bowel symptoms, but I am nervous about tommorow. has anyone else had this test?

[Kirsty_Anne]

Hi lovely, I had a proctogram just before Christmas and it really isn't as bad as it sounds. You do have to sit on a commode and pass the barium mix but nobody watches you and its over very quickly. I havebt had my results yet so cant say if it was beneficial or not. Lots of luck xx

[lm330 in reply to Kirsty_Anne]

Hi Kirsty Anne, thank you for your kind words of reassurance I think that the enema before hand was by far the worst part. I can never hold it in for 10 mins and the pain in my pelvic area during this part of the procedure was horrific. Barium wasnt that nice to drink but could have been worse. glad i went along with it anyway. it was really interesting to see the x rays after as he showed me the screen of the moving x ray whilst passing the paste whilst I was still sat on the commode. i think that as long as you havea nice consultant its fine. he was really lovely which makes a real change. good luck with your results!xxx

[Duckybun]

Good luck for today IM, hope it all goes smoothly (no pun intended- just realised how bad that sounds!)

[lm330 in reply to Duckybun]

Thanks Duckybun, haha jokes are very much welcome with something like this i think. lol. my friend texted me "lets hope they get to the bottom of it"... lol. so i wouldnt worry at all xxx

[Becsidom]

Wow I have never heard of this before. I have absolutely loads of bowel issues which each set of doctors cannot agree on what is causing it. Bowel doctors say it is endo, endo doctors say it is some other bowel condition. I have had so many tests on bowel it is unreal but never this. I am having another colonoscopy at the end of this month. Last colonoscopy showed bright red blood all the way through the bowel along with inflamation. They could not find what was causing all the bleeding and they originally said I had colitis but biopsies for that came back negative so they then said it must be endo.

What does this Proctogram show up? What kind of bowel issues have you had that they are investigating? I wonder if it is worth suggesting this to my bowel doctors if after my 4th colonoscopy they still cannot decide what is wrong?!?! They say there is clearly something wrong with the bowel, but what it could be they cannot agree on!

I hope it goes well today and isn't too unpleasant.

[lm330 in reply to Becsidom]

Hi Becci, I have had bowel issues since i was a small child, but there is also a strong link with endo in terms of the pelvic and gynae symptoms which accompany bowel movements etc, and in terms of the time of the month when i have problems, and in terms of the onset severity coinciding with my endo problems.

A proctogram is basically an x ray of your digestive system (mine was of the bowel specifically but they can do the whole thing and they can also do bladder as well). It shows how your bowel functions when you pass a stool. they make u drink barium and also insert more barium paste up your bum and then you have to do things like cough sit straight etc then pass the paste all whilst they x ray you. its a bit weird, but at the time it all passes really quick. the worst thing for me was the enema before to clear out the bowel. the idea is that the barium will coat the inside of the bowel and therefore it will show up any abnormalitiies on x ray. i have written a response below detailing my results as I am very pleased with them. definitely talk to someone about having one. there is nothing to lose. i think its expensive so they will not be keen, but you need to let them know you are aware of your options. it may not be relevant for you, but its worth asking. hope you manage to get some answers soon, and i totally know what you mean about bowel and endo doctors both saying its the other one- they need to work togethyer more. xxx

[lm330]

Hi girls.

so the proctogram showed up some abnormalities in my bowel during passing the motions. So at least we have some idea of part of the problem; although it doesnt help with my of the other endo symptoms i have, but at least now they know why i have trouble passing stools and so much swelling and pain.

Basically they have found that the muscles in part of my bowel are not working properly and it sort of prolapses during the motion and traps part of the stool there...nasty. i dont really understand much more than that at the moment, but apparently it can be fixed with surgery. he says he has never seen this in someone so young as me. not really sure whether this is endo related or not. i had part of my bowel removed before my endo was diagnosed, so its so hard to know nowadays chicken and egg. but at least they are taking me serioulsy now. for ages they kept giving me piles cream and saying oh ya its just piles. aparently my pelvic floor also doesnt work properly but i can have physio for this.

lame that i need more surgery, as bowel surgery is awful, but at least they might sort it. but scared though as last time i had bowel surgery i had unexplained internal bleeding and nearly died. they still dont know what caused it and i maintain its endo related but they say its not. i am not going to have the surgery until after i finish my studies in summer, because i cant face any more right now, and because i am worried about losing a lot of blood again and i want to make my point about the link to endo when i see the consultant. it was only a brief chat afterwards and he was kind to give me some info on the results, but hopefully i will know more when i see the consultant for a full report soon.

hope that some aspect of this story was useful for some other girlies. thank you all for reading xxx

[Emzieeggg in reply to lm330]

Hi there I'm about to have one of these, but iv already been told my muscels down there don't work properly and have had physio and electric therapy which didn't help much I take daily laxitives at the minute. The reason I'm messaging is that iv had this along with other issues most of my life but toilet became harder when I was 24. I read you'd said you had surgery complications and just wanted to say have you ever been looked at for ehlers danlos syndrome? as I'm to stretchy internally due to my Eds and we also get tears easily and bleeding or complications during g surgery. Eds is where the collegen (skin internal organs are faulty) it took me ages to get a diagnosis in the end I saw a gentisist privately. there are different types and cross overs and I'm only mentioning it to you as it's advised we don't have surgery due to risks etc. Sorry if this isn't helpful or sounds rude just thought I'd mention it incase as before my diagnosis I'd of water to know xx tc my email address is [e-mail] if you needed to contact me

[Impatient]

Im330

sorry I'm a bit late , but I do want to thank you for sharing your experience. Very enlightening and informative.

I wonder if adhesions from either endo or more likely from previous surgeries are part of the problem for you.

It could just be muscles damaged or simply cut in previous surgery and complications and they didn't mesh back together properly ..OUCHY

Anyway it must be a huge relief that they are on the right track now and all hope is not lost.

It proves once again we know our own bodies and we know when something is very amiss inside from what it should be normally.

Best of Luck getting rectfied

& keep us posted on how you're doing even if not directly endo related.

someone else will benefit in due course from your experiences. Might even be me.

[lm330 in reply to Impatient]

Hi Impatient,

will definitely keep you all informed, and I really hope that you are able to benefit from my experiences. I think more than anything endo and all the stress and complications that go with it are quite exhausting. It does make you feel angry though when you think of all the years of suffering and people telling you "its in your mind" when you know there IS something wrong. My counsellor suggested writing to my old GP and I am thinking about taking her up on this. I even thought about perhaps enclosing an endo help leaflet to raise awareness, because im sure its only ignorance that stops them from referring more of us sooner, and in my case (and probably many others) if the endo had been spotted when I first started having symptoms in my late teens, then it would not have got anywhere near as bad or required such intensive surgery. You are probably right in terms of adhesions etc. Its so weird because since I have had two laps, i have gained new symptoms in addition to the old ones, so there is definitely something going on. Ironically I never used to have pelvic pain prior to my first lap (although i had it in plenty of other areas). the pelvic pain only started after lap 1. I am worried about further surgery, but I guess we have to weigh up the odds. Im supposed to be getting married this summer and finishing my studies, so there is a lot of other things taking my time and attention right now, but I really do want to start married life as physically and mentally fit as possible. At least he knows what he is taking on lovely to chat to you anwyay. take care, LM xx

[sb95-omo]

I'm just reading this now and have got a Proctogram scheduled for a few weeks time... Did you have any symptoms or side effects after the Proctogram? I'm going camping straight after and don't want to be needing the toilet every 5 mins! Also I read somewhere that die comes out in your wee?!