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Spooky
Just a question...

I have been using Pentasa enemas now as recommended to me, for a little over a week. I don't have any trouble holding the enema in for about an hour, my problem is that I've noticed that afterwards, once I expel the enema, I actually have increased symptoms - pure watery stool, urgency, pressure, and some bright red blood (no I'm not sticking the enema in too far - I barely put the tip in since I'm terrified to do any more than that). Well things got really bad Monday night. I did the enema about an hour before bed. Afterwards, I was up literally every hour going to the bathroom, with pressure and urgency. I NEVER had these symptoms when I wasn't using the enemas, even when I had pouchitis. So I skipped using them last night and I'm fairing better today. I was supposed to do these enemas for a month, leading up to the consult with my new GI in October.

Based on my reaction to them, logic tells me to stop the enemas since clearly, they seem to be making things worse. The problem is, I don't have an appointment to see my new GI until October 16th and I'm not sure who I can ask. I have talked to my GP but she said she doesn't have the expertise to advise me. I was thinking of calling my new GI's secretary, but I'm not sure if she would have access to my chart or be able to give me any phone advice, since the GI actually hasn't seen me yet. I am going to put a call in anyway since once again, I've been left hanging with no options.

My question, has anyone ever had an adverse reaction to enemas like this? I've never used them with the j-pouch before, though I did with UC and when I had the retained rectum. I've used oral Pentasa in the past.

I'm just really frustrated about how things have been unfolding for me the past few months.

Replies sorted oldest to newest

Jan DollarJan DollarModerator, RN, retired
Oh yes, definitely call your new GI doc! You may even get in sooner if he knows that your treatment is backfiring on you. You can also call the pharmacist where you got your Rx. They know all the side effects and adverse reactions and can advise you. Might even be able to send a message to your GI about it for alternatives.

But, bottom line, stop them in the meantime.

Jan Smiler
Jan Dollar
SpookySpookyMember
Thanks for the replies! I have stopped using them, and I won't start again, at least until I can speak to somebody who would be able to tell me what the options are. I've left a message; hopefully it won't take them too long to get back to me.

Mental Kase, that's what I was thinking; that maybe it wasn't the Pentasa per say, but the extra liquid that is sending the pouch into overdrive. But the last 2 nights I've skipped using them and I've only gotten up once, which is more or less normal for me, so it appears there is a definite connection with the enemas and the increased symptoms I've been having.
Spooky
CTBarristerCTBarristerMember
The rowasa enemas never worked for me because I could never hold them in. I take Pentasa 500 mg capsules x 4 per day.

Fleet Enemas that I took in the past to prep for pouchoscopies caused my pouch to become very irritated. My GI suggested I use tap water enemas in lieu of the Fleets. I was concerned about the sterility issues involved with using tap water so I stayed with the Fleets. I tolerated the Fleet well on my 2013 pouchoscopy, possibly because my pouch is not as inflamed in the first place, as it was in prior years. I think if there is active pouchitis and inflammation it is difficult to hold any enema and there is a chance of exacerbating the situation.

The only therapeutic medicated enemas that ever worked for me were the Cortenemas I took when I had UC.
CTBarrister
Jan DollarJan DollarModerator, RN, retired
Correct. We even used tap water enemas in the hospital, so there you go...

The concentrated salt solution in the Fleet is probably more harmful to the pouch mucosa than anything that might be in your tap water (the exception is if you have private well water with questionable potability, but if that was the case, you shouldn't be drinking it!).

I use the Fleet myself, mostly because I don't like throwing stuff away, but mostly as a rinse. Then, I refill the bottle and use it as a rinse until the return is clear.

Jan Smiler
Jan Dollar
CTBarristerCTBarristerMember
quote:
If you would be willing to drink tap water, I don't see why you can't do a tap water enema.


I usually drink bottled water. I had asked my pharmacist if there was such a thing as sterile bottled water enemas and she said she had not seen them. She thought it would not be 100% safe for me to take tap water enemas, and I agreed with her. She actually suggested I buy a Fleet, pour out the contents, and pour some of the bottled water into the empty fleet enema bottle. I thought this was a little too complicated for a freaking enema to prep for a scope, so I dealt with the Fleet.

Right around the time I had this conversation they found that poor dead girl's body in the water tank over the hotel in LA. They said they did not know her body was there until hotel guests said their water tasted funny. The story grossed me out:

http://www.cnn.com/2013/06/20/...ank-death/index.html

Who knows what is in the water supply, and why take a chance when you can use something that has someone's name on it as being sterile.
CTBarrister
SpookySpookyMember
I actually thought Fleet enemas were contraindicated for the pouch since they are too much of an irritant? My surgeon for one said not to do them. The one time I was asked to do an enema prep before a scope, I bought a pediatric Fleet, emptied out and refilled it with tap water. That didn't seem to cause any issues.
Spooky
SpookySpookyMember
CTBarrister, I recall that news story and it's pretty sick. That being said, I'm not 100% convinced all bottled water is necessarily better either. It sits in those flimsy plastic bottles in all temperatures, depending where you buy them. I've heard that in extreme temperatures, such as in a hot vehicle, the plastic can break down and the molecules get into the water. I'd like to see the hard science behind that, but I still can't shake the notion. I don't usually drink bottled water I generally filter my water at home.

For the tap water enemas, I suppose if you're really concerned about sterility, you could always boil the water first, let it cool to room temperature and then use that. I guess it also depends where you live and what type of water supply you have. For instance, at the cottage it's all well water - it gets filtered twice, once with the Brita on the tap, then we boil everything, then run it through the jug Brita. I sure as hell wouldn't do an enema straight from the tap there.

As for the Fleets, I was under the impression would shouldn't do them at all, that's why I was sort of surprised to hear that some people are.
Spooky
Jan DollarJan DollarModerator, RN, retired
The main issue with a Fleet enema is that it is concentrated salt. It pulls large amounts of water from the bowel wall. That is how it is supposed to work, in order to stimulate a bowel movement. It is not a "cleansing" enema at all, but more of a laxative, so in our case, it really does not do the job, where we need rinsing.

The concentrated salt can be an irritant, but most of us can tolerate it fine for a few minutes. But the real issue with it is for people with kidney problems because too much salt can be absorbed, leading to worsening kidney damage, and even irreversible kidney failure. This has been seen predominantly with the elderly.

So, if you are prone to dehydration and electrolyte disturbance you really should not use these, it is not about having a j-pouch specifically. And, you really should not attempt to retain it more than a few minutes. It is the long retention that can really cause trouble, because more of the sodium and phosphorus are absorbed.

Anyway, you do not need sterile water, just reasonably clean water for the bowel prep rinse for pouchoscopy. While you really don't "know" what is in your water from the tap, you are pretty safe from pathogens unless you have a well or tank that is not monitored by the City (dead bodies in the tank aside). If you think your tap water is suspect, you should get a reverse osmosis system for your home. Most bottled water is tap water and is not regulated. You can get sterile water for irrigation from a pharmacy, but is not indicated for this application. That is what we use for open wound cleaning.

In my case, I have frequent monitoring labs so I know my kidneys are in great shape and I do not worry about a few minutes of Fleet on board.

Jan Smiler
Jan Dollar
Jan DollarJan DollarModerator, RN, retired
Yeah, surgeons, and doctors in general, tend to speak in short hand. Basically, the shortest answer that gets the job done! Not inaccurate, just not the whole story.

While it CAN be irritating, it does not mean it WILL be irritating. If you have serious pouchitis already, you really don't want to be adding more irritation to the brew, especially just before the trauma of scoping.

Jan Smiler
Jan Dollar
Mental KaseMental KaseMember
Friends,

The mere thought of a salty Fleet enema sends my bowels into revolt -ouch, and oh no why did I do that!

As per tap water, probably all good but why not just be safe and use distilled water from a clean container. Just eliminates any doubts, if problems occur you don't need to question your bottle or the water -make life easy.

MK
Mental Kase
SpookySpookyMember
quote:
Yeah, surgeons, and doctors in general, tend to speak in short hand. Basically, the shortest answer that gets the job done! Not inaccurate, just not the whole story.


Absolutely. I would imagine that simply stating that the enema could be irritating would be more than enough to warn most patients off it. It certainly worked in my case. Smiler
Spooky
SpookySpookyMember
I finally heard back from the GI's secretary. She referred me to the IBD clinic nurse. I called the clinic nurse. She is on vacation until the 25th.

So I called the GI's secretary back this morning and left a message just to say that I had tried to reach the nurse but she's away for the next 2 weeks - is there anybody else who can advise me in the meantime? Of course, their office is closed Fridays so I won't hear back until at least Monday.

And round and round we go...
Spooky

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