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MESALAMINE ENEMAS EIGHT HOURS PER NIGHT??!!!

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Ulcerative Colitis
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Posted 1/19/2014 10:13 PM (GMT 0)
Hi All!

It's been a while since I've posted because I was hopeful a clinical trial I just ended would work and I would have good news to share. Unfortunately, this Phase III Double Blind study with an herbal medication referred to as HMPL-003-04 has not worked for me at all. I was actually thrown out of the study! This medicine is derived from extracts of the plant Andrographis paniculata and has been used to treat inflammatory diseases in Asian countries. My doctor said it has been very successful in Europe as well. For me, however, it was not helpful.

I still pass profuse amounts of blood and mucous. Now says he, the next step in Mesalamine enemas. He wants me to take one enema each night, and hold it in for EIGHT hours. I'm supposed to do this for the next three months. How can one hold in liquid for eight hours?

The doctor then tells me that the only other options after that are steroids and surgery. Is he kidding? There's got to be something else out there for me. I've tried a Paleo Autoimmune diet and the FODMAP diet. Nothing has worked. If anyone has any ideas, I'd really appreciate it.

62 y/o white female
Dx in 2010 w/ mild to moderate UC
Passing copious amounts of blood and mucous with every bowel movement
Meds: Balsalazie Disodium 750 mg 3 caps/ 3X daily
Citrucel
VSL #3 DS 4X/daily
Autoimmunie Paleo Diet
FODMAP Diet
Posted 1/19/2014 10:15 PM (GMT 0)
The more I read posts in here, the more I hate all doctors.
Posted 1/19/2014 10:25 PM (GMT 0)
There isn't a ton of liquid that you have to hold in. It's easier if you empty your bowels ahead of time, I put a towel down on the bed, and insert. I don't get up, and I find that helps. I have a trash can near the bed to dispose of the container.

It's not an pleasant thing to do, but I found that my bowels sort of settled down at night, so it was a little easier for me. Warning, though...in the am, I had explosive D. Once I opened my eyes, I knew I had to book it to the bathroom. Very loud and very gassy. Not pleasant, but if it helps, it's worth a try, right?
Posted 1/19/2014 10:28 PM (GMT 0)
It is not that much liquid - 60 mL, or about 1/4 cup. You may not be able to retain it for too long at first, but as you improve, you may sleep through the night and you hopefully won't notice much liquid leftover in the morning.
Posted 1/19/2014 10:48 PM (GMT 0)
You might consider the Specific Carbohydrate Diet. Mesalamine enemas will be a good choice no matter what diet you opt for.
Posted 1/19/2014 10:54 PM (GMT 0)
It's really not that bad to hold an enema in. I only did 1/2 the enema the first couple of nights because I was afraid of them. I had no issues holding it all night, even sleeping 10-12 hours. There was urgency when I woke up, but I already had that before the enemas. Once my inflammation started going down I even had a day or two when I didn't poop at all, meaning the enema goo was in there 24 hours. I found that I could do the enema in the bathroom, clean up and hop in to bed. For me, after about 10-15 minutes after inserting it I'dget cramps and a strong urge to poop, but I just held it in and took deep breaths. It passed after 10-15 minutes tops. So, I knew within 30 minutes of administering the enema that I was good and could sleep as usual, roll around, sleep on stomach or whatever I wanted. I used the enemas for about 6 weeks every night, and I think I only not held it once....and to be honest I probably could have held it but I threw a temper tantrum slash pity party about the fact that I had to use butt goo every night and deal with the effing cramps that I bolted out of bed, shouted obscenities and expelled the enema in the toilet. Not my finest hour rolleyes
Posted 1/19/2014 10:57 PM (GMT 0)
The first few minutes you may have cramping but if you do it right before bed when you're tired and you are able to breathe deep and get past the torturous part, it's possible to hold it in for 8 hours. Sometimes it's harder than other times. The more inflamed, the harder to hold. You should get a new GI, there are other options besides mesalamine and prednisone. I take 6mp. Some people use biologics. Maybe you need antibiotics to get things headed in the right direction.. Diet has never done much for me either unfortunately. I think if you're going to try diet, the SCD diet is the one most people have luck with.
Posted 1/19/2014 11:21 PM (GMT 0)
I also vote that this doctor isn't the best. Please look at the resources thread at the top of the page, which lists many options, both medical and alternative. And don't accept that your doctor says you can only do this or that if you want to try something different. If you have to, get a different doctor.
Posted 1/20/2014 2:41 AM (GMT 0)
I hold mine in for 24 hrs, easily.
Posted 1/20/2014 4:21 AM (GMT 0)
Some doctors don't have the best way of delivering information. But recommending you use mesalamine enemas is really good advice. Don't think of it as "holding it in", that sounds realllly hard to do. More like calming down and going to sleep is what I did.

In the beginning my colon was not happy with the enemas at all and as soon as it went in I'd be running to the toilet. But I kept trying, using half an enema and lay there breathing calmly until I fell asleep. Eventually I could do the whole enema and sleep all night. The learning curve will happen if you decide it's important and is helping you. Getting the enema to body temp is really important. I put it under my arm for half an hour before using, less shock on delivery :-)

Enemas+diet modification gave me remission and I haven't needed an enema in over 6 months. Give them a good try, even if your doc is a d**k. But mes. enemas and Balsalazide weren't enough to get me there.

Is he saying that Humira or Remicade or 6mp are off the table for you?
Posted 1/20/2014 8:15 PM (GMT 0)
You hold them in as best you can (at bedtime)..as you heal, you'll get better at holding them.

q
Posted 1/20/2014 8:26 PM (GMT 0)
I was just going to post on the same subject!

Tonight I'm doing salofolk enemas for the 1st time. I'm scared of how uncomfortable this is going to be. I've used foam with no problem other than I generally hate the fact that it needs to be done in the first place. But I'm hoping for a fecal transplant so I might as well get used to this...

Anyway, my gastro told me to used the foam about 20 min before inserting the salofalk. The protifoam has a numbing agent that will help me hold the salofalk in. Oh joy.
Posted 1/20/2014 8:41 PM (GMT 0)
The thing I think a lot of people don't realize is that the mesalamine enemas are NOTHING like Fleet enemas. The fleets are supposed to make you poop. A lot. You're not supposed to be able to hold them. You are, however, supposed to be able to hold the mesalamine enemas. And steroid, too, now that I think about it.

rbartolo, I've never heard of anyone using a melalamine enema immediately after using a steroid one. Interesting.

I've never had anything beyond very minor cramping with a mesalamine enema. Like I've said before, I really think it's only as big of a deal as you make them.
Posted 1/20/2014 8:49 PM (GMT 0)
fruitgirl--I think it's an interesting concept...using a pre-enema to numb and the other to heal. We'll see. I think it's the feeling I'm most afraid of...but I want to get better more than I fear the enemas!
So glad you're in remission. I hope I'll be the same....
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