Anyone else find prep doesn't clean them out properly for tests?

[Barbie]

Hi guys,

I'm new here. Although I've been diagnosed 12 years I've muddled through but have hit a bad time again and need some advice.

Im quite sure I have disease activity in my small bowel. The CT scan shows thickened small intestine wall on right side (where the pain is) and I had a colonoscopy at the weekend to see if I had a stricture. As always my consultant found patchy severe inflammation in the large intestine and the joint to the small intestine but it was difficult for him to see as the endless bowel prep I had hadn't worked very well. I took:

1 sachet picolax
2 of the magnisium stuff and 10 x senna!!!

I feel that when it works Im squeesing all the fluid out rather than any solid stuff which feels high up?

I have never been able to achieve a complete clear out for some reason and find that he see's the inflammation lower down and stops there. Considering my bloods seems to come back normal and I have had more constipation to normal over the last few years suddenly they are saying I need to treat a flare up. But what they have diagnosed is not where the pain is. I have started back on Pred foam.

I'm due to have the barium follow through on Monday and am really worried now that the picolax is not going to work enough to give clear results and I'l get a telling off even though I know it's not my fault.

I'm desperate to find an answer. I know I have a stomach ulcer and mild inflammation in my stomach also at the moment

Does anyone have any problems with bowel prep not working and any suggestions. If I use an enema will that clean out my small intestine too for the barium test?

Please help x x x

 

[Rebecca85]

I have only had the one colonoscopy so far, but yes I did find I wasn't very well cleaned out, but what was there was liquid so they just suctioned it out. Presumably they can't do that for the barium?

Perhaps you could try a low residue diet for a few days before the prep and then go onto a liquid diet they day before? Then there would be less in your bowels to be cleaned out.

I am not sure but I would guess that an enema would only clean the large intestine, isn't there a valve between the large and small?

 

[Nyx]

My prep for colonscopies has always been 2 Dulcolax 2 days before the procedure (and taken before bedtime). The night before the procedure I take the 2 sachets of pico-salax...the first one at 5pm and the second one at 10pm. It's always a liquid diet the day before too (clear liquids only). I've never had a problem with not being cleaned out.

I hope this helped And welcome to the forum...

 

[Cat-a-Tonic]

I've only had one colonoscopy, but I had the opposite problem - I was cleaned out too well! The prep I took (Miralax & Gatorade prep) made me really, really dehydrated in spite of me continuing to drink clear liquids up until the cut-off point. I had to go to the hospital a couple of hours early just to get IV fluids because I was feeling so horribly dehydrated (I could hardly walk, my vision went blurry, and I couldn't stop shaking, especially in my hands - it was really severe dehydration). On top of that, they messed up my IV so I didn't get rehydrated again very quickly. It was pretty miserable, but that prep definitely did get me totally cleaned out!

 

[Barbie]

thanks guys yep might surprise you but I have only had fortijuices for a month anyway which is why its worrying if there is stuff still in me!! I think it's cos they suspecting a stricture higher up and I think its getting stuck and delayed as I have been getting constipation and then all the water??? It's so frustrating and makes you feel really dirty xxx He did say that cos it was so inflamed in there that the prep might not work properly and it wasn't my fault but it doesn't stop you from taking it to heart and feeling naughty!! xx

 

[Barbie]

LOL thats even more annoying I had severe dehydration too and ended up having a catheter!!! and it still didn't work!!

 

[Mountaingem]

Nope, I am usually pretty ****-and-span inside and don't even need the entire amount of prep before everything is um, running clear.:redface:

 

[Rebecca85]

Fortijuice for a month? Thought that stuff was only a supplement, not to replace all meals? And you still have poo in there? I guess that just shows that there is somethimg wrong, like a stricture or maybe those little pockets (sorry mind has gone blank can't remember the name). Hopefully the barium will work anyway!

 

[Barbie]

yep i know don't ask my care has been a shambles ive been in and out on a gastro ward and none of the staff know about crohns. They try to feed you meals you know you cant eat and treat you like a fussy child. They discharged me without doing a colonoscopy even though I even asked for one! ....no NORMAL patient does that unless they are in agony and desperate. I have even had dangerously low blood sugar for ages and they didn't even test it while I was in. As I'm a medical proffessional anyway its even more frustrating as i know the things they should be doing but to be fair I hadn't even considered that. I just cant tolerate anything else at the moment. I'm going crazy off work and to be honest I know it probably sounds stupid I wish they could just cut it all out cos I'm fed up of living like this. Im dreading the next episode of pain that I cant control at home myself and ending up in there again. I've had the new pain (where the ct shows thickening) for 4 years it started as a niggle and has graduarly made me not want to eat and I feel full all day!!! I just want an end to it and I had forgotten how frustrating this all is.

xx

 

[Barbie]

Forgot to say I then saw my consultant (who i never saw once for 2 weeks in hospital) and he was horrified they hadn't done the proper tests and wasted so much time. Thats how I eventually got the colonoscopy.

 

[Rebecca85]

Sounds like my hospital... You don't live near Nottingham by any chance? Can you manage other clear liquids e.g. Fruit juice and broth just to make sure you're not missing anything vital?

As for finding out what the problem is, if you do have a blockage or stricture further up won't the barium get stuck there and highlight where the problem is? Then you can get proper treatment for it- foam won't help if there is inflammation higher up! Lets hope you get some answers before the next episode of pain. Do you have anything strong at home just in case?

 

[Barbie]

thanks honey no I live near Peterborough! Not too far away. Im managing soya milk for calcium as my calcium levels were rock bottom too. Good thinking Im hoping the barium thing will. He has given me the foam for the disease he found lower down but even then I still don't have the usual symptoms I know the crohns to be! it's completely different. I think the inflammation he has found lower down is probably just recent stuff from all the prep etc as it always seems to flare me anyway!! haha what a muddle. I think and am hoping your right about the barium getting stuck cos thats exactly how it feels inside. I'm in agony within 15 mins - 25 mins of anything even water sometimes. Just makes me feel sicker.

Ive got tramadol reserves here for emergencies only but I tried that last time. I'm beginning to get embarrassed of having to present at A and E cos I work there its so annoying! But it does have its advantages too, I'm beginning to think I was an idiot for discharging myself on Saturday, maybe I should have stayed. I just couldnt stay there while they were trying to force-feed me stuff I know would make me worse! Also it's so embarrassing having to take prep if your not well enough to get out of bed to go to the toilet and have to use a comode behind a curtain. I have to be at home to take prep. What a mess. Thanks for your advice though, two heads are always better than one. Sorry to hear its no better in Nottingham.

xx

 

[Entchen]

Hi Barbie: Good question! I bet that's something that a number of us have experienced.
I used Colyte with dulcolax before my first colonoscopy in late May and the prep was "extremely poor" (according to my GI). I'd eaten low residue before the prep and followed instructions to the letter. Re. your question, the nurse at the hospital told me that an enema wouldn't go far enough to clean it out. As it happened, I'm un-scopable anyway and thus it didn't really matter this time, but I also want to find a solution for next time. It's on my list of things to discuss with my GI, since at some point (hopefully not this year) I'll start needing double-balloon colonoscopies.

 

[Barbie]

i know its so frustrating cos you feel like its your fault and I feel disgusting about myself. I had my first colonoscopy when I was 10 years old and I remember the mean doctor at that time saying in a disgusted way how its "full of muck in here" so Ive always had this thing about worrying I wont be cleaned out properly. Its just something I seem to never have been able to achieve. And I feel all dirty :0(

Really worried about the barium follow through on Monday as you need to be clean for that don't you?

What do you mean you unscopeable?? xx

 

[Rebecca85]

Barbie- i found a great guide on the nacc website. It's designed for non-specialist nurses who are looking after ibd patients. Perhaps you could print off a copy then if you have to go back into hospital show it to the nurses. It does specifically say that diet affects cd so should help with the force feeding!

http://www.nacc.org.uk/downloads/factsheets/GeneralNurses.pdf

 

[Barbie]

Your amazing thank you what a good idea im going to print off as many things as I can and have them ready then I can show them.

I did eventually manage to speak up one day when one of the healthcare assistants tried to feed me weetabix with cows milk (A BIG NO NO for me) and said we cant all be fussy its all thats left and you have to eat it.........I replied....Do you have ANY idea what will happen to me if I eat that Do you have any idea what crohns disease is? When you do come back and apolgise.

LOL I did feel rude but it does have to be done sometimes :0(

xxx

 

[Mary]

I have not had that problem.

 

[Cass]

I bet strictures caused the incomplete cleansing. Did in my case.

A late response in hopes this might help someone... When I was hospitalized to initiate TPN (total parental nutrition) in preparation for a small bowel resection, the timing provided the opportunity to have several days to clear out my gut. Turned out it took three days and three gallons of GoLitely to do the job! It wasn't until about midnight the night before surgery that the nurses were satisfied. Had I been prepping at home, I would have begun the usual one day prior, with the standard one gallon of GoLitely, and risked a bad outcome due to incomplete cleansing. None of my Drs proposed an extended cleansing, I just got "lucky" by having a weekend in hospital to clear thru the strictures. (One excised stricture section had only a BB-sized opening! Ow!)

Perhaps if a Crohn's pt has had symptoms of obstruction, or had incomplete cleansing in the past, ask Dr. if you may start a day (or two) earlier than normal, with the option of refilling the GoLitely prescription. But certainly restrict yourself to low-fiber low-residue diet a day or two prior to GoLitely day.

And it struck me in this thread, that UK hospitals sound frightening for a sick person! I have faint hope we in the US can somehow preserve the high quality of our healthcare despite the planned government takeover.

 

[Jer's Girl]

I have had problems in the past, and I had one Dr that was very mean about it and always acted like it was my fault, and she was disgusted with me. Very embarrassing. She is no longer my Dr however, for multiple reasons.
Once when I had a block, the prep actually sent me to the hospital! It didn’t clear me out at all, it just caused me extreme pain because nothing could get through. It was a very bad time. Could you have a block? I hope not. If you did, you would be in a lot of pain though.
Now I find that what works best for me is to do a liquid diet for about three days before an appointment, then I do the Miralax prep. Basically, you take a few colace, and then you mix a whole container of Miralax with light Gatorade on your prep day. It clears me out really well, and it is so pain free, you will hardly believe that it really worked! You should check with your Dr before you try this, but it works really really well for me, and after years of taking those horrible preps that hurt me like crazy, it was really a nice surprise to find this method. Good luck!

Sorry this method didn't work for you Cat.

 

[Jer's Girl]

I should have read through all of the posts before I posted. Maybe you should have an x-ray and an ultrasound done before you do any prep. It sounds like you might have a block, and if you do, a prep might hurt you. If you are getting some stuff through though, you are probably okay to try a prep like the one I mentioned. Keep us posted barbie!

 

[xJillx]

I've only had one colonoscopy, but I had the opposite problem - I was cleaned out too well! The prep I took (Miralax & Gatorade prep) made me really, really dehydrated

Me too, Cat! This stuff made me violently ill, as did Golytely. Actually, even my GI thinks some of the inflammation found during my test could have been caused by the prep. For my upcoming colonoscopy, I am going to see if there is a prep that is easier on the system.

 

[hannah-rose]

Before I had my colonoscopy I had to drink moviprep - I can't see it mentioned here.

It mixes into a litre of this disgusting salty 'lemon' flavoured liquid you drink the night before and the morning of the procedure.

Well It says you will start going to the loo within one hour of drinking the stuff. I'd been drinking it since 7pm and it was 10pm when I drunk my last mouthful and I hadnt gone at all. I felt so incredibly full and sick it was horrible. Anyway I was very proud for finishing the stuff as it's SO disgusting, but as soon as I got the last little bit in my mouth I projectile vomited about half of it back up! Seriously I only just managed to make it into the bathroom, It was just liquid but I've never been sick that violently before it was amazing!

I then had to go to the toilet all night long, it definitely worked. In the morning I managed to drink about a cup full but every time I took the stuff in my mouth it made me wretch so I just couldnt drink it.

Thankfully what I did ingest did the job but when I turned up for the procedure very hungry and generally pissed off and saw all these little old ladies having the same thing I just felt so sorry for them to have had to drink the prep too. It really is vile stuff.

Oh and then you get violated up the bum by someone you don't know. All in all, a fun day out!

 

[tiloah]

I was "lucky" in a way, they let me do the pill prep. Osmoprep I think it was? Anyway, it was going great until the vomiting. They make you drink so much! I was forcing myself to drink as much fluid as they tell you to and it was just too much for me. I still can't even look at the purple G2s without gagging. It was the morning of the scope. They had me go to the pharmacy and drink some OTC laxative. I didn't really drink very much of it because I still felt so full of liquid I was going to just vomit more, and it was getting close to the cut off (if not already past). They said my prep was "fair to good."

I don't know what I'm going to do when they tell me I can't take the pills anymore.

 

[RFarmer]

I think the feeling of not being done is called Tenesmus or Tenesemus... I did Pico-Salax and Dulcolax for my last colonoscopy. Pooped. Lots. Cramped. Lots. Worst part of colonoscopy? Hell yes.

But I never felt completely empty. Even at the hospital, I was worried if I should go to the bathroom. But, I opposed that action, and heard no mention of incomplete bowel clearance from my GI guy, so...