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My out of control UC

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Ulcerative Colitis
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Posted 8/13/2013 4:01 PM (GMT 0)
Good Morning HealingWell,

I have used this forum for a reference in the past, but I have never posted. I figured the time has come, and made an account.

I was diagnosed with UC in January 2010. I was put on Asacol 800mg and prednisone to get it under control, and it seemed to work. I went to a specialist in 2012 who said I was not retaining iron, and that my UC was likely not as well controlled as I thought (I very rarely flared after being diagnosed and taking my 1600mg of Asacol daily).

In May, I had a bad flare. I could barely move, except to get to the bathroom. After a round of prednisone and increased Asacol, I got about a week's worth of relief before I started flaring again. The middle of July I was back in the doctor's office with another flare, getting more prednisone on a slower taper, and a referral back to my GI doc.

I am still tapering my prednisone (down to 15mg) and I started bleeding again. Back to the GP, who checked for fissures and hemorrhoids and found nothing. So I got bumped to emergent on the GI doc's cancellation list. My appt isn't until Sept, and I am NOT taking prednisone that long. The side effects this time around have been horrid. So the GP put me on Asacol enemas for the short term, because I need to get this under control.

I am really not pleased with the idea of the Asacol enemas. I am a newlywed, and my husband is great with all my medical stuff, but now I need to have a bin by the bed for used enema bottles? And what about retention? Is it likely that I am going to leak enema in the night? Looking at the big picture, I would rather deal with this than a perforated or toxic colon, or more prednisone issues.

I guess I am hoping for some non-horror stories with the Pentasa Enemas, and any advice to make this as non-mortifying as it can be.

Thanks!
-vb
Posted 8/13/2013 4:57 PM (GMT 0)
1600 Asacol is not very much. The prednisone can be good at helping you get to remission but it will not keep you there once you taper down or off, unless you have a maintenance strategy. This is the Asacol but I don't think you were taking enough to keep you in remission. The high dose is 4800mgs daily and a common maintenance dose would be half that, or 2400mgs daily. It is usually a fairly good idea to take oral ASA's (such as Asacol) and rectal meds at the same time. If you attain remission using this treatment plan I would never take less than 2400mgs of Asacol daily, forever, as well as using the enemas maybe once or twice a week forever. Future flares are often harder and harder to treat so the goal is to do whatever you have to do in order to never have another flare and whatever you do, don't get cocky because you have been doing well (even after decades) and quit doing your meds. This disease isn't as simple as when you have another flare thinking that you can get out of it by doing what you did before because it often doesn't work like that.
Posted 8/13/2013 5:05 PM (GMT 0)
Rectal meds are not the most romantic thing in the world, true, but how about uncontrollable diarrhea? I mean, nothing about this illness encourages intimacy with your sexual partner, so rectal meds aren't really anytihng extra bad. Plus, the benefit of rectal meds is that they actually treat your illness where it lives. The oral meds aren't very effective in the rectum and sigmoid colon. Most people with UC have most of their inflammation in these areas of the bowel.

You should be able to retain the enema all night long. My practice was to insert the enema in the bathroom and then go straight to bed, laying on my left side (this allows the enema to fill the sigmoid colon). Your rectum keeps things in unless otherwise authorized to release, IFYKWIM.

If you and your DH plan to have sex you can use the enema afterwards. It's not a big deal. I think doing it in the privacy of the bathroom will preserve your dignity
Posted 8/13/2013 5:06 PM (GMT 0)
if your new husband is good with everything else re your uc treatments, he'll be fine with the e's -

they take some practice but are pretty user friendly once you get the hang of them - if you're doing ok, you should be able to retain them no problem -

they really do a good job of controlling things -

have fun ;-)

oh, and welcome to the gang !

Posted 8/13/2013 5:09 PM (GMT 0)
You could always do the enema a different time of day. I am not a long time enema user but it is a small amount and I have had no leakage problems even just sitting on the couch watching tv. If you keep them in a few hours that is better than not trying them at all. I understand where you are coming from. Even though I have been married a long time enemas really are a turn off in the bedroom. UC in general is not good for ones sex life. Getting things under control is important though. If you are in a full on flare it's gonna be worse on your sex life for sure.
Posted 8/13/2013 5:20 PM (GMT 0)
When I was first diagnosed, I was on max dose Asacol, so 4800mg (I think?). That is also what I go to when I flare. It was actually a mistake, as the doctor noted it funky on the paper, but he was fine with it. He then said that the lowest he would put me on was 1600mg, because a lot of people don't get continued remission with 800mg or less. Because of med costs and my concerns with the amount of medicine I put in my body, we tried the 1600mg. I am in Canada, so while my health care is free, it is kind of horrid to get back to see a specialist. I haven't seen him since he diagnosed me in 2010. I haven't had a scope since I was diagnosed, so I really have no idea other than symptom-wise how I am doing.

I have never stopped taking my meds just because I was doing well...

With the Pentasa, I guess I am worried about passing gas in my sleep and having enema go everywhere. Right now, with the flare still going or starting up again, or whatever it is doing, I am fairly gassy. I have been trying to do what I can to eliminate that, but with really limited income, and prednisone munchies warring with each other, my diet is not the best.
Posted 8/13/2013 5:53 PM (GMT 0)
The enema instructions encourage you to empty your bowel before using the enema, which I always found laughable. My IBD tends toward constipation (meaning that my motility is slow and unpredictable). I used the enemas nightly regardless of where I was stool-wise.

If you are laying on your side post-enema, and wearing some undergarments, passing gas shouldn't release much enema. It's a liquid, and will line the surface of your rectum and sigmoid colon. It will not be pooled in your rectum waiting to be expelled until you get up in the morning and move around.

One helpful hint I got here was to squeeze the air out of the enema bottle before inserting it. This keeps the air out of your bottom and hopefully you are not that gassy from your dinner by the time you get to bed.

Perhaps you won't need to see your specialist, just call and ask for a prescription for enemas. They are part of a standard UC protocol.
Posted 8/13/2013 8:17 PM (GMT 0)
I did the enemas for months while in a flare and used it after that on an as needed basis. It was prolly the one thing that truly helped with urgency. After a week of using them i could do them in a few minutes and my wife would just come into bed like twenty minutes later. The trick was to warm them up in your hands a little lay on you side a make sure you get all the air out of it before inserting it. Dont sweat it if you cant empty the whole bottle the first few times. It will get easier. For the most part it calmed things down and allowed me to sleep through the night. Once i stood up in the morning i went right into the bathroom.
Posted 8/14/2013 2:45 AM (GMT 0)
First have sex, then use the enema. And when you are feeling better, the enemas are super easy to put in and retain and the timing doesn't really matter - as much. I've done my wife minutes after an enema with no issues - woot!
Posted 8/14/2013 4:04 AM (GMT 0)
Lots of good advice! Go to bed a bit before your husband and lie on your left side. Timing intimacy is even better. The applicator is small so you don't need a special bin, just wrap in a Kleenex and set aside or put in a small basket until the next day. (My husband knows about the enemas but I have always found a private moment to use them.)
Of course as a new user you are worried about leaks! At first you could use a thin pad in underwear; or even a couple of tissues in the right place will give you quite a bit of security. You will probably find that nothing terrible happens and the medicine will help your uc.
Posted 8/14/2013 7:54 AM (GMT 0)
So, the first night of enemas went alright. I did warm it up in my hands like everyone said. The worst part was trying to get the darn nozzle open. It just wouldn't open! I kept turning and turning until finally it worked. It wasn't anywhere near as uncomfortable as I feared.

I only got about 90% of the bottle in, and about 5 hours retention before I had to had to use the bathroom... though I didn't pass much other than gas and maybe a little leakage while on the toilet.

I had some cramping and nausea before bed, but no real urgency to pass the enema. I was even able to get up and dispose of the bottle before hubs came to bed.

Editing to add: Bleeding still seems to be going on this morning confused

Post Edited (vanilla_bean) : 8/14/2013 6:25:45 AM (GMT-6)

Posted 8/14/2013 1:15 PM (GMT 0)
It's going to take a week or more to see significant improvement. Mesalamine is essentially a topical med. Those ulcers in your rectum aren't going to heal immediately.
Posted 8/15/2013 5:18 PM (GMT 0)
... I don't know who they are talking to with arthritis, but these enemas are NOT friendly for my manual dexterity. I haven't been able to empty a full one yet, and it is not because of discomfort.

Also, quick question about retention. I used the enema at about 11pm last night. I woke up at 2:30am having to pee. I didn't pass anything from the bowel. I repeated this performance multiple times last night (having to pee, not having a bm of any sort). Does this mean, even though I used the washroom, I retained the enema fully? Is it ok if I don't pass any sort of BM between enemas?
Posted 8/15/2013 5:38 PM (GMT 0)
When I'm using enemas (I have to use hydrocortisone because my colon doesn't tolerate Mesalamine), I keep them in my nightstand. I wait until my husband goes to sleep, which he usually does pretty quickly once he's ready to sleep. Then I take a folded bath towel from my night stand and put it under my buttocks. I lay on my left side facing hubby and slowly insert the fluid, then toss the empty bottle in a small trash bag. I sleep on the towel but put the trash bag in my nightstand. In the morning when I get up, I take the trash bag and throw it away.

My supplies are out of sight and he never knows when I'm using the enemas unless he looks in the trash.
Posted 8/15/2013 6:22 PM (GMT 0)
I just put a towel down on the bathroom floor, use the enema, get up, wash my hands, and head to bed. I rushed when I was still flaring, because it was a bit hard to retain the enema when I was standing up, but now that I'm in remission it's NBD to do that, and I could probably be up and moving if I had to be.

And yes, it's ok to not have a BM between enemas. I'd sometimes do that when I was on them nightly. I also pretty much always get up to pee at night; now that I'm in remission I never pass the enema, unless I happen to fart when I'm sitting on the toilet. Then I sometimes pass a bit of the enema.
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