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Posted 7/14/2011 1:17 PM (GMT 0)
i know alot of succes can be had in the treatment of our old mate ulcerative colitis by using enemas but they are seriously TERRIBLE.

besides the fact of it being uncomfortable and disgusting ( we all get over that i know) i have just found them impossible to keep in.

In all my attempts i have managed to keep in 1 enema over night

i recently got a script for foam enemas and was pretty excited about trying these because i had so much trouble with the regular liquid ones (mesalazine enemas btw i've never tried pred ones)

anywho i got the foam enema ( semi excited about it which is so depressing LOL) anyway it was terrible, for starters the ends of the applicators aren't perfectly smooth, they have a little bit of plastic left from the moulding process so they almost feel sharp which just makes it worse, anyway i did on pump of the foam enema, you're meant to do 2. and it was a TERRIBLE SHOOTING PAIN AND URGE to go to the toilet. Needless to say i was unable to keep it in and it burnt like hell on the way out.

is anyone actually able to keep in enemas on a regular basis?

it seems they're almost impossible when you're flaring and have a badly inflamed rectum
Posted 7/14/2011 1:23 PM (GMT 0)
I am sorry you are having a difficult time with using an enema. The only way I have been able to keep them in is to use it right before bed and go lay down. The less I move the better. Every day it gets easier to maintain the medication. I can now use one and maintain it all night. But it took a few weeks. The medication works best the longer it is in there. But set a goal, say 15 minutes, lay down and watch tv don't move. Every couple nights add 5 minutes.

I hope this helps :)

Mike
Posted 7/14/2011 1:25 PM (GMT 0)
Anthonyv,

Yes, they are very difficult to keep in. I can't do retain the enemas for more than 15 minutes. How were you able to do it for overnight?

I think it takes alot of practice and very strong sphincter muscles - neither of which I apparently have, haha.

Perhaps some of the veterans of the forum can tell you some tips to retaining them longer?

BTW, whatever happened with your pursuit a LDN prescribing doctor? Just curious...

Posted 7/14/2011 1:31 PM (GMT 0)
its not that i can't hold it in, its just the incredibly painful feeling of needing to go to the toilet that overcomes me and i have to go. when i do an enema, its the same feeling as busting to go to the toilet and we all know thats the worst feeling in the world.

i seen a doctor yesterday in regards to that treatment and i presented him information on that, aswell as wellbutrin as i hadnt heard of that either until i did some research. He said he was willing to do anything to make me healthy again and would research it throughout the week and i have a follow up appointment next wednesday.

he also spoke about using HGH as a way of treating my colitis which is very interesting in my opinion, does anyone know anything about this?

really excited to try something new if it might help :)

Post Edited (Anthonyv) : 7/14/2011 7:44:51 AM (GMT-6)

Posted 7/14/2011 3:00 PM (GMT 0)
Well, if you're taking an oral already maybe you could switch to the suppositories. They are much much easier to keep in. And then, maybe you could do them twice a day. They don't reach as high and are less medicine but if you can keep them in it might be worth the switch? Just a thought.
Posted 7/14/2011 3:25 PM (GMT 0)
Ok, here is how I keep in my enema:
shake the enama and let it sit for a few minutes. Then push all the air out of the bottle. Then go lay down and take the enema and don't move for a while. I take mine before bed and keep it in all night. I have taken the foam ones as well and I only take one applicator full. You definately have to use some kind of lubricant with it. I usually use vaseline or hemmie cream. This will help with the burning as well. Again the longer you can keep it in, the better. I use the cortifoam and it works great!! good luck to you!
Posted 7/14/2011 7:31 PM (GMT 0)
I lay of my left side with butt propped on pillow a bit, then hold the enema bottle as upright as possible so as to avoid injecting air.

If I am highly inflamed, I put in just a little bit at first, then remove the applicator. I wait for the sensation to setting down and for the anti-inflammatory effect to start taking hold in the rectum. Once things calm down, i put in the rest and try to go to sleep.

Also it is really important to try to clear out any gas or poop before you put the enema in.
Posted 7/14/2011 7:58 PM (GMT 0)
I'm curious, would suppositories be better for people who can't tolerate/handle enemas?

In my case when I have to have a scope, I opt for taking the pills and drink because the enema's make me feel horrible, and three seconds later I'm on the toilet with wasted enema down to the tubes.
Posted 7/14/2011 8:00 PM (GMT 0)
Lots of lube and watch the angle you insert them in with...I know what you mean about the plastic being rough...you mentioned you're using foam, is it cortifoam as their applicators are generally quite smooth
Posted 7/14/2011 8:47 PM (GMT 0)
There is a small possibility you are intolerant of something in the enemas. Hard to know but the burning sensation makes me think that not the fact that you have trouble keeping them in, everyone has that at first. And almost everyone has the urge to go when first using them. It takes time and repeating them to eventually keep them in longer and longer.

Rowasa now has a sulfa-free version of their enema, perhaps you can get that and try it.
Posted 7/14/2011 11:31 PM (GMT 0)
I dont know what enema you're taking but from the ones I've used I've only been able to hold the budesonide enema. It's a corticosteroid enema and the packaging makes it very easy to quickly get it into the rectum. Also, are you laying down sideways on your left side? The way I use my enema is that I'm lying on my left side, (as in your want your left to me on the surface because you want gravity to work with you and your your left is where your gut starts and then moves upwards to the descending then transverse then ascending colon) on my bed with a towel underneath. That's what works best for me. BTW I am flaring and this enema in particular seems to be working for me. I am able to retain it all night long. I think it has a lot to do with the packaging. The entocort enemas are the WORST for me. I think the packaging and the design is just impossible to get into your rectum. Are you eating late at night? I need to have an empty stomach whenever I use enemas. Even if I eat something tiny like a cookie, I cannot retain the enema because I have this feeling that I have to go to the bathroom. I try not to eat about 3 hours prior to sleeping. This way I know I wont be having to use the bathroom in the middle of the night!
Posted 7/15/2011 12:30 AM (GMT 0)
I totally agree with you, been in the same situation.

I read here to hold the enema close to our body (under armpit, between legs) for about an hour before putting it in, to get it up to body temperature. That's helped a bit (although I just wrap mine in my heating pad for a few minutes) I lay on the heating pad as well, on my left, and put in just a little bit at a time, but I leave it in (I find that inserting and removing it causes a lot of anxiety). I've only been able to do half an enema at a time, and hold it in for maybe 20 min max (makes me sick to think of all the money I'm putting down the toilet, but that's another subject).

With the corifoam, or any other plastic contraption you have to insert, try filing down the rough edges with a nail file. Might make it a little more bearable.

Best of luck!!
Posted 7/15/2011 1:50 AM (GMT 0)
This is only useful for people who have hard time retaining. I have went through 3 full bottles before and gave up, because I could only afford one box of the stuff.

Hopefully you read this and actually try it. Over the years I got tired of pooping money down the toilet because I thought I needed to put the whole thing in there. I also learned some of my hydrocortisone enemas (Teva) bottles had the pieces of extra plastic and some didn't. If you are flaring and stick this in you may as well forget cause you'll cut yourself and bleed worse. So...

I quit sticking the enema in while in the bed... too much anxiety. I start all this in the bathroom with a nice thick towel to lay on.

I would find one of the better applicator tips, use plenty of A&D and use it over and over, until I needed another one. The generic A&D ointment is just about as good.

I would use my first empty bottle, rinse it out, keep a gallon of distilled water in the bathroom and use it as my "check bottle." I would actually also take an empty 16 oz water bottle in there and keep it full of the distilled water so I wasn't lugging the gallon out every time.

When going into the bathroom I would throw the hydrocort enema in a sink of warm water, fill up the empty bottle with the distilled water and use it first to see what was going to happen. If it seemed it was going to stay in I would get up in a couple of minutes and evacuate it out, then use the real stuff. Lay there 15-20 minutes get up and go immediately to bed.

If I got the urge quickly, I would just evacuate out the water and use more to see if the same thing was going to happen.

YOU WILL eventually see the water is going to stay in, then just use the med. The only difference now is you are not flushing the meds you need down the toilet until one stays in.

Most of the time I used about 1/3, maybe 1/2 if feeling frisky, of the enema meds at a time and retained it all night. If you do that it is more effective than forcing a whole one in and holding just a short amount of time. Wipe the tip and use another 1/3 the next time.

Sometimes in severe flares I did this twice a day. I have always had pretty non-responsive UC so this stuff allowed me to keep my colon as long as I have.
Posted 7/15/2011 3:21 AM (GMT 0)
When I first started enemas, I put a pillow under my butt so gravity would help me. As for the feeling, I just breathe shallowly and slowly and just take it. You get used to it.

If none of that works, maybe you can ask for suppositories. That might help with rectal inflammation, and when that's under control you can try the enemas again. Using parts of the enema at different times like Dr-A said could probably help too.
Posted 7/15/2011 10:28 AM (GMT 0)

Anthonyv said...
i know alot of succes can be had in the treatment of our old mate ulcerative colitis by using enemas but they are seriously TERRIBLE.

You do comprehend, don't ya, that criticizing enemas is a tabu subject on this board tongue
Posted 7/15/2011 11:40 AM (GMT 0)
Most of the time I used about 1/3, maybe 1/2 if feeling frisky, of the enema meds at a time and retained it all night. If you do that it is more effective than forcing a whole one in and holding just a short amount of time. Wipe the tip and use another 1/3 the next time.

I've done this also, used 1/2 and enema one night and the other half another night. Those things are expensive when you're paying your own way (high deductible IOW).

I totally agree with Dr. A, just use a small amount and gradually put more in as your colon gets better. Longer retained in any amount is best.
Posted 7/15/2011 3:06 PM (GMT 0)
I suppose using a small amount of Imodium could help with the urge to purge after using the enema.

Getting through the spasming aspect is a learned process...I have had to dump 3 in total over the 22 years. One was because of having to urinate while trying to hold in the enema much later in the night...just couldn't do it.


Fibre supplements, antispasmodics and the odd time imodium (before using the enema) could help.

Yes..using them is definitely a choice.
q
Posted 7/19/2011 7:57 AM (GMT 0)
I have UP and was initially given pentasa suppositories 1g nightly. All was fine and dandy until I moved overseas and they didn`t have them. So I was prescribed oral meds, with increasing dosage as a flare started, then pentasa enemas, then steroid enemas, then oral steroids etc. until I finally demanded a scope where they confirmed a UP super flare- with 12 + loo trips expelling odds and ends, blood, mucous, occasional poop bits etc, . So, I promptly flew home, mid super flare, taking 2 planes over 16 hours in total- nightmare, got a prescription for 1g pentasa suppositories, taken nightly and the bleeding etc stopped within 10 days. The enemas are a depressing nightmare if you are flaring the applicators are painful, all they did was help my trapped little poops evacuate and they did not help me at all. If you are not super flaring but need them as maintenance am sure they would work as you could us them after a morning poop or before bed. Could you try oral meds in combo with the suppositories? I now the supps don`t reach as high but surely the `combo` might work better until your symptom are a bit better??
Posted 7/19/2011 2:26 PM (GMT 0)
Lots of good suggestions. This is what helps me.

1) Warm up the bottle (put it next to the heater in winter or run hot water over it for a few minutes...be careful not to get it too hot!)
2) Squeeze excess air out of bottle.
3) Put lubricant on the tip for easier insertion.
4) Insert it slowly while laying in bed on left side.
5) Sometimes I only squeeze about half a bottle in.
6) Take slow, deep breathes and think positive thoughts while trying to get through the pain of retaining them. This sounds corny, but it helps me. The awful feeling usually goes away in less than a minute for me, so if you can fight the urge for a minute, maybe you will be ok.
7) Lay on left side for at least 20-30 minutes and go to sleep.

They will get easier to retain after your inflammation starts going down. Sometimes I feel the burning feeling but only rarely...I'm not sure what causes this.
Posted 7/20/2011 12:08 AM (GMT 0)
It sounds like you're using the mesalamine foam available in UK, Europe, Australia & NZ, but not in the U.S. or Canada. The applicator that comes with those is different from what we use with the steroid foam. A while back we had an Australian member, Knitty_Cat, who posted here about using the mesalamine foam successfully in combination with an oral mesalamine. Maybe you can look up her old posts to read what she said about her meds, which did put her into remission. (She was writing us from Canberra.) / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 7/26/2015 11:17 PM (GMT 0)
Hi I've read all the messages here because I'm fed up with my proctitis.

Diagnosed in 2007.. I'm 24 and have had endless endoscopies.. medications eg. Asacolon, Imuran (which made my hair fall out) mezazaline, suppositeries, humira injections and purinethol.. nothing works and I constantly end up taking steroids which I'm told will egive me osteoporosis in the near future. I stay in the house as much as I can because if I go in the car anywhere I panic and have a severe urgency to go it's so upsetting and stressful.. I've pooped in public 3 times and nothing compares to the shame. I'm trying prednisolone foam enemas at the moment but they make me pass wind a lot can't hold them in and still have urgency!! Can anyone help? My specialist is exhausted from trying different meds I'm thinkin is it something I'm doing wrong? confused confused
Posted 7/26/2015 11:27 PM (GMT 0)

Frosty123 said...
Hi I've read all the messages here because I'm fed up with my proctitis.

Diagnosed in 2007.. I'm 24 and have had endless endoscopies.. medications eg. Asacolon, Imuran (which made my hair fall out) mezazaline, suppositeries, humira injections and purinethol.. nothing works and I constantly end up taking steroids which I'm told will egive me osteoporosis in the near future. I stay in the house as much as I can because if I go in the car anywhere I panic and have a severe urgency to go it's so upsetting and stressful.. I've pooped in public 3 times and nothing compares to the shame. I'm trying prednisolone foam enemas at the moment but they make me pass wind a lot can't hold them in and still have urgency!! Can anyone help? My specialist is exhausted from trying different meds I'm thinkin is it something I'm doing wrong? confused confused

Hate to say it but you just described the life of 99% of us here. Usually the foam formulations are the easiest to hold. Its really important to make sure you are completely empty before trying them If I have even the smallest amount of stool in my guts I cant hold it to save my life.

How long have you been on them? What other meds are you on?
Posted 7/26/2015 11:34 PM (GMT 0)
Thanks for replying marauder93! The enema is 20mg rectal foam and it burns when it comes out I have been on them for a week? But I can't live life normally it's so hard.. when I'm prescribed oral prednisolone steroids I go into remission they are excellent but my specialist said he won't be prescribing them anymore because of the side effects.. Imuran my hair fell out asacolon oral and suppositeries neither worked everything of tried gives cramping and makes it worse.. I'm currently taking humira injections combined with purinethol which is holding it a little bit as in I have no bleeding just cramps urgency soft stools but I'd love to find that one thing to put me in remission.. wishful thinking ?
Posted 7/26/2015 11:44 PM (GMT 0)

Frosty123 said...
Thanks for replying marauder93! The enema is 20mg rectal foam and it burns when it comes out I have been on them for a week? But I can't live life normally it's so hard.. when I'm prescribed oral prednisolone steroids I go into remission they are excellent but my specialist said he won't be prescribing them anymore because of the side effects.. Imuran my hair fell out asacolon oral and suppositeries neither worked everything of tried gives cramping and makes it worse.. I'm currently taking humira injections combined with purinethol which is holding it a little bit as in I have no bleeding just cramps urgency soft stools but I'd love to find that one thing to put me in remission.. wishful thinking ?

I feel ya. Ive been in a flare with 10+ BMs/day and urgency for the last 6 years with no drugs even putting a dent in it (including pred) so I know what your going through.

You can maybe try doing half doses of the rectal foam and work your way up if retention is an issue. Something is better than nothing. You can also maybe look into increasing the dose/frequency of Humira, possibly switching to Remicade, or maybe even looking into Entyvio.

Do you take any alternative therapies like supplements etc?
Posted 7/26/2015 11:51 PM (GMT 0)
10+ BMs/day wow! I had something similar 7 years ago when I was first diagnosed so it has gotten a little better! Just not enough to live a normal lifestyle! I've just started taking aloe Vera colon cleanse tablets.. no results yet really.. watching my diet.. can't eat orangescabbage and onions.. food like that only enhances symptoms! Fatigue is a major problem too so taking pharmaton capsules to try keep energy levels up!

Thank you I'll actually suggest those meds to my specialist! I've upped the humira to weekly since last week so we'll see what happens there. I know it's trial and error just a very long trial!! Forgot to mention I was on pentaza as well but to no avail!

Have you ever been in remission for longer than a month or so?
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