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Posted 12/10/2012 11:23 PM (GMT 0)
After speaking with a new GI last week we decided that in addition to VSL #3 (which is on its way in the mail) I might want to try mesalamine enemas.

I've mentioned my UC symptoms here before, but I'm basically in the midst of a mild flare going on for who knows how long. I had a terrible flare in early/mid 2010 after being off Asacol for 3+ years. I was scoped again and prescribed Asacol HD (6 per day) which helped things calm down. My primary symptom since then that has not gone away is constipation. I feel like I'm never able to completely "empty out" when I have to go, which is only in the morning. I go somewhere between 2-6 times in the AM, generally between 6-11.

My new GI suggested that I never went into full remission and all I need is some "maintenance." That's why he prescribed the VSL #3 (though my insurance doesn't cover the non OTC iteration, so I'll be taking the lower dose) and Rowasa.

My main issue here is not with additional treatment, but in the use of an enema. I realize this may be laughable to some here, but I am very uncomfortable with enemas, suppositories or anything going up my posterior. I tried administering an enema once before and just could not relax my mind or body enough to be able to go through with it.

I guess what I'm asking is: how do I go about this? what can I expect to feel? how should I hope for this to work?

Thanks in advance to anyone who's able to help in any way. I know a lot of you have gone through much worse than constipation/incomplete evacuation and do not mean to marginalize any severity of UC. I'm grateful to mostly be in remission and hope only to improve what I possibly can.
Posted 12/10/2012 11:37 PM (GMT 0)
I can tell that you are worried about the enema. It can be a strange feeling to put a piece of plastic in your own bottom. The goal of using this medication is to get the mesalamine where it needs to go. The oral mesalamine just will not cover the sigmoid colon or rectum.

Based on your description of things, your symptoms don't seem to be terrible and it's probable that just a few uses of the enema will improve things a lot for you. Has your GI confirmed that there is active inflammation in the rectum? If not, then given your hesitation about this medicine I would ask why s/he is prescribing it. Once you agree that there is active inflammation and that mesalamine enemas are an effective and safe way to treat this, you should talk about frequency. My guess is that your new GI will want you to use the enema daily for a while (a week or two) until you see significant improvement, and then continue to use them at a longer interval, say twice a week, or even once a week.

When I started using mesalamine enemas I found that getting in the right position to insert it properly took a bit of practice. I read the instructions and tried out what was suggested and experimented with different positions a few times before I found one that I was comfortable with.

The plastic tip feels cold but it does not hurt. The opening of your rectum is not sealed shut and it shouldn't be hard to insert the tip. You shouldn't force things either. There is already lubrication on the tip but you are welcome to add more. You should squeeze the bottle gently before inserting it to get the air out - this will make the medicine much less bothersome once you inject it into your colon.

After you have inserted the tip you squeeze the bottle slowly until most of the meds are out of it. I never worried about getting the last drop, and I wouldn't think it is necessary. This is not an exact science.

You might feel a bit crampy; just lay on your left side and relax. Read a book, talk to your partner. Then go to sleep.
Posted 12/10/2012 11:47 PM (GMT 0)
I just started using a mesalamine enema two days ago and honestly,it's not scary at all, and I was very nervous to start with. It was also my first time administering an enema myself. You just have to slightly aim the tip toward your navel when inserting it. There should be instructions with your meds. What they don't say and what really helps is to push like you're trying to have a bm when you're putting it in.

I didn't even feel anything when I was squeezing the fluid out, except for the bottle getting empty as I squeezed my hand. Nothing internally though.

Take a few deep breaths when you're laying on your side just before you start anything, that can help you relax too. I had no trouble retaining it through the night. The bottles were way smaller than I thought they would be.

Good luck!
Posted 12/10/2012 11:49 PM (GMT 0)
I last had a colonoscopy in June, but it was by a different GI doc. I remember him saying that UC was found in the rectum and cecum but not spread throughout. He did say it was more prevalent in one area while the other appeared to be in complete remission. I don't remember which one, though. I did ask this last doctor about using enemas and he said that he didn't think it was necessary. I've since spoken with him again and he's only suggested that I take fiber supplements to help with my constipation.

Just reading what you said has made me shudder. I don't know if I can go through with this yet, at least not until I've gotten to my wits end with the constipation. I think I'm going to try the VSL #3 for a week or so and see how that works before going through with the enema.

I'm able to get through the day without any urgency or need to go past a certain time of day almost all the time. I kind of just want to work out the issues in the AM so I can live a life in total remission again.
Posted 12/10/2012 11:51 PM (GMT 0)
To be clear: I mean no offense in saying that the description made me "shudder" or in being so averse to putting medications into my rectum.

It's just one of those phobias, I guess. I hate it.
Posted 12/10/2012 11:55 PM (GMT 0)
Ultimately you are going to have to decide which way you want to go. Oral mesalamine will not treat the rectum. The end. If you need meds to treat the rectum you will have to go up the risk ladder.
Posted 12/10/2012 11:58 PM (GMT 0)
It's really not bad at all and after just using it twice it has made a world of difference for me. I was only in a mild flare as well, but still experiencing pain and about 3 loose bms every morning. If your GI is recommending it, I say give it a try. It takes maybe 3 or 4 minutes, and that's being very generous, to use the enema. The most time consuming part is laying on your side for a half hour so it can evenly disperse in your colon. I just watch an episode of a sitcom on YouTube to take up that time.
Posted 12/11/2012 12:01 AM (GMT 0)
Using the enemas takes some "getting use to".
The main thing is to add enough lubricant so that the tip slides in easily.
If you feel the urge to expel it, take a few slow deep breaths and will yourself to hold it in.
Assume you know you should lie on your left side for at least 30 minutes.

Are you sure that the feeling of "not emptying out" is not attributable to hemorrhoids?

Another possibility is that you could try using organic slippery elm powder before bedtime to move things along.
Posted 12/11/2012 12:01 AM (GMT 0)
The GI who prescribed it has not performed nor seen a scope of my colon, accessed my medical records or even really discussed with me what has or hasn't worked. He gave me generic advice that is easily found via Google searches. I more or less suggested he give me the mesalamine enema because I've seen it mentioned and had it suggested on this forum. I'm reasonably sure he wasn't going to write the prescription if I didn't ask.
Posted 12/11/2012 12:02 AM (GMT 0)

ItsAlwaysSomething said...

Are you sure that the feeling of "not emptying out" is not attributable to hemorrhoids?

It could be, but that wasn't mentioned to me after my last colonoscopy. Things could have changed in the 5 months since then, but my early morning urgency symptoms have more or less been consistent since getting back on the Asacol HD in July 2010.
Posted 12/11/2012 12:07 AM (GMT 0)

kazbern said...
Ultimately you are going to have to decide which way you want to go. Oral mesalamine will not treat the rectum. The end. If you need meds to treat the rectum you will have to go up the risk ladder.

I know this. I'm just hopeful that I can go into remission without using the enema. I did it when I was first diagnosed and only took Asacol, so I know it can happen. It's worth a try for me as my symptoms are relatively mild.

Like I said: if adding the VSL #3 alone doesn't do the trick, I've now got a solution (no pun intended!).

Going back to my initial questions, though, I was wondering what I can expect to happen if the Rowasa works? Will I feel like I've completely emptied out and only have 1-2 BMs? Will I not have to go in the morning?
Posted 12/11/2012 12:21 AM (GMT 0)
I've been amazed at the amount of info that "hasn't been mentioned" by my GI.
I had bleeding from hemorrhoids that I thought was from UC for quite a while. My GI finally did a flexible sigmoidoscopy and confirmed it. They continue to plague me so I use slippery elm to keep things moving along so as not to irritate them.

Slippery elm can work to soothe the digestive tract. Might even help with the GERD. I make a tea and drink it whenever something doesn't agree with me. It was after I started using it that the "urgency" feelings pretty much disappeared. Now I have plenty of warning if I have to find a bathroom.

I totally agree with Quincy that you have to "treat from both ends" so I think you're on the right track.

I tried VSL #3 but prefer Benebiotics.

You will probably get a lot more info from this forum than from your doctor. I know I have.
Posted 12/11/2012 12:25 AM (GMT 0)
thanks, ItsAlwaysSomething. your username is probably my favorite, for what it's worth!

what are the symptoms of hemorrhoids? I know that I spend waayyyy too much time sitting down on the toilet, mostly because I'm constipated, and it may be a vicious self-perpetuated cycle after all.

In a given morning, all told, I'm probably sitting down on the toilet for about 2 hours. Not consecutive, but still.
Posted 12/11/2012 12:34 AM (GMT 0)
I don't know if this answers your questions, but I started using Rowasa a couple of months ago and I went from having what felt like awful cramps and urgency but then having not a whole lot happen when I went to the bathroom, never feeling like I was "emptied" out, to having 1 or 2 formed, complete, relatively "normal" bm's in a few days time.  During the first week, there were a couple of nights where I couldn't hold it in all night, but once the rectal inflammation eased a bit, I was able to hold it in all night.  At first, it feels like it wants to come back out but in my experience I was able to kind of will it to stay in there.  I agree w/ the above advice--add extra lubricant if needed and relax.  I'm trying to taper to every other night, but honestly, I've found them so effective that I wouldn't mind doing them every night and backing off on the colazal.  They've made a world of difference for me. 

Chinamom

 

Posted 12/11/2012 12:41 AM (GMT 0)
sfc425 - I want to go back to your comment that your new GI hasn't looked at your chart or looked in your rectum and that s/he is simply responding to your request for a rectal med.

Look, you are the patient. YOU are the one who is suffering. Call your GI and ask for a copy of your last colonoscopy report, including images. Schedule an appointment with your new GI and talk specifically about the findings of the colonoscopy. Talk about it until YOU understand what was found.

What you ask about tenesmus is impossible for anyone here to answer honestly. What does remission feel like to you? I spent many months in clinical remission but with very annoying issues that were resolved by going gluten free. But I did a bunch of testing and fiddling with my meds before making that [pretty significant] lifestyle change. Had I known earlier that I was gluten intolerant I might have skipped all the testing, but probably not. It was important for me to understand the actual condition of my intestines so I could make informed decisions about my treatment.
Posted 12/11/2012 12:43 AM (GMT 0)
A concern on top of my concern is the need to administer an enema on a nightly basis. I'm basically considering trying this out as a solution to having to go in the morning. Part of the reason I'd like for this to stop is so I'm able to share a bathroom and/or spend the night with someone without urgency being an issue. I feel like a nightly enema changes the urgency but the issue persists.

I apologize if any of my neuroses are offensive. I honestly don't know if I should care about such trivial things, but I'm trying to attain full remission and I feel like the only way to do that is to get to a consistent point of normalcy.
Posted 12/11/2012 12:55 AM (GMT 0)

kazbern said...


What you ask about tenesmus is impossible for anyone here to answer honestly. What does remission feel like to you? I spent many months in clinical remission but with very annoying issues that were resolved by going gluten free. But I did a bunch of testing and fiddling with my meds before making that [pretty significant] lifestyle change. Had I known earlier that I was gluten intolerant I might have skipped all the testing, but probably not. It was important for me to understand the actual condition of my intestines so I could make informed decisions about my treatment.

I had absolutely terrible symptoms when I was first diagnosed. I was not able to keep food down, I had poorly formed, loose, bloody BMs. I was constantly tired and had brutal stomach cramps. I went on Asacol and all of those symptoms dissipated within a month's time. They went away almost completely. I didn't need to limit my diet, I never felt urgency, had about 2 BMs per day at regular intervals. It got to the point where I had started forgetting to take my Asacol. I spoke with my GI doctor about a year after my initial diagnosis and he said that it was possible I was symptom free. I didn't even need to take the Asacol.

That's what remission feels like to me. I haven't been back there in almost 3 years, and I'm not sure why. My last colonoscopy caused no concern to my original GI, who knows the most about my medical history and is the only doctor I've ever found who has been right with every prescription and bit of advice.

I'm frustrated by not being 100% sick but also not being 100% healthy. I feel like a hypochondriac but know that there is a chronic illness inside of me that can be treated if I could just figure out how, what, where and when. This is why I'm considering administering a regular enema when the very idea elevates my blood pressure.
Posted 12/11/2012 12:57 AM (GMT 0)
sfc425
I stole my user name from the title of Gilda Radner's book.
Are you too young to know who she was?

Regarding hemorrhoid symptoms (mine at least).
Occasional large amount of bright red blood in toilet after straining. (Have to be careful to avoid that.)
Feeling like I still had to go after a BM.
Feeling pressure in the rectum (they are internal).

I had them "banded" a couple of times and it was a good temporary non-surgical procedure.
Surgeon who did the banding prescribed cortisone suppositories that I use whenever I see the first sign of blood. I use them at night.

If you're sitting on the toilet for a couple of hours in the am, there's a good chance you have them.

I hope you can get this under control so that you can enjoy a more normal life.
Posted 12/11/2012 12:57 AM (GMT 0)
Well, I don't think anyone here has made you feel self-conscious about your concerns. Frankly, we all have been there. It takes some longer to reach acceptance, LOL, and others don't need much persuasion, but I don't know anyone who is thrilled about having to take a nightly enema. I would even say that most IBD patients are resentful and angry about having to take meds of any kind. I know that was the biggest hurdle for me - the idea that I'd be on meds FOREVERRRRRRRR. We all have our challenges.

Urgency is a problem, as is maintaining your dignity in a new relationship. I will admit that even though my prescription said to use my enemas nightly I never did. I had a husband and an infant when I was diagnosed and if I could catch a night of potential intimacy I did not use an enema. With this slapshot approach it took me several years to get the inflammation in my rectum to be gone. And that was ok with me.
Posted 12/11/2012 1:06 AM (GMT 0)

ItsAlwaysSomething said...
sfc425
I stole my user name from the title of Gilda Radner's book.
Are you too young to know who she was?

Regarding hemorrhoid symptoms (mine at least).
Occasional large amount of bright red blood in toilet after straining. (Have to be careful to avoid that.)
Feeling like I still had to go after a BM.
Feeling pressure in the rectum (they are internal).

I had them "banded" a couple of times and it was a good temporary non-surgical procedure.
Surgeon who did the banding prescribed cortisone suppositories that I use whenever I see the first sign of blood. I use them at night.

If you're sitting on the toilet for a couple of hours in the am, there's a good chance you have them.

I hope you can get this under control so that you can enjoy a more normal life.

I know Gilda Radner well. I thought you did a nice job juxtaposing the title with a UC forum username!

I don't have any of those symptoms aside from still feeling like I have to go, but the feelings are more centered around my gut than the rectum. I feel like there's more "on the way" but not quite ready to evacuate. Sometimes I go hours before feeling like I actually have to evacuate again. I used to work in an office (I now do so from home) and generally left for the day without feeling like I'd emptied out, but the sensation more or less disappeared as the day went on. I would then have to go again as soon as I got back at night. It seems as though my BMs are confined to where ever I'm sleeping. It's gotten to the point where I'm actually concerned if I have to go after like 12pm in a setting outside of my house. That's how "regular" my 2-6 BMs per day have been for over 2 years now.

So I don't know if that's hemorrhoids. I do know that I sit on the toilet for too long, and shouldn't have BMs with volume that take as long as mine do.
Posted 12/11/2012 1:24 AM (GMT 0)
My cousin (a nurse) had Irritable Bowel Syndrome with constipation.
If I remember correctly, it was found that she had a longer than usual intestine (or something like that).
Sounds crazy but if the digestion process is slowed, a lot more water is needed to keep things moving.

She was told that she did not drink enough water to keep things moving. (She was an avid coffee drinker but that did not seem to help.)

Have you read any posts on the IBS forum? Might find some info there.
Posted 12/11/2012 5:12 AM (GMT 0)
I've suspected it was related to IBS. I also have been traveling cross-country back and forth all year, so the change in timezone and lifestyle may be playing a role.

Thanks again, ItsAlwaysSomething.
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