On surgeon's advice, going to try the - gulp - daily enema

[ams5796]

This is a great thread. Keep the posts coming! The information is invaluable. You're motivating me and I'm starting to feel that this may give me my life back. I'm not exaggerating when I say that every day is planned around my bowel issues. It is the first thing I think of when presented with a social invitation. I load up on imodium etc to attend the events I must attend.

There is one problem I have. I notice on the days that I do an enema I end up having a terrible stomach ache a few hours later and lasting for several hours. Does this mean I haven't emptied completely or is this something my body will get used to?

Good luck, Tammy and the rest of the enema buddies!


Ann

[Jachut]

It has improved for me, but I do have irritation for several hours after. And like I said in my previous post, it's easy to overdo and feel really crook. I positive I've given myself several cases of transitory proctitis over th past year.

I also find I have to be xtremely careful cleaning my gear, rinse, rinse, rinse because if there's even a trace of anything on the tip my insides are on fire - that's been my problem for the last couple of days.

[tammylayne]

The better my cleanout, the less crampy I feel. And the crampy, gotta go urge reminds me of the feeling I have before I cluster, as I get a distinct pain on my left hand side of my stomach.

As for when and where I can't do my enema, I agree and understand about not wanting to do it in other people's homes, sharing a hotel room etc....however in MY case, these are things I already avoid due to my severe clustering, so for me,,,it really is no different. However, I would have no problem telling my hotel room mate that I need some privacy for an hour each day, and finding a way to make it work, provided I felt comfortable enough, but chances are if I didn't have that kind of a relationship with the person, I would not be sharing a room with them to begin with. I do understand what you are saying Jachut...it could be awkward. I guess I am just concentrating on making my day to day life better, and hopefully will come up with ideas of how to make it work in other areas as I get better at it.

I have decided that I also need to be more patient in my process. I did have 2 BMs during the day today, so I think I need to do 4 -5 bottles to get a better clean out, and I need to either do it later at night, or find a way to make the mornings work. I am starting to feel like I am wasting the benefit of what I doing by doing it at suppertime. I get about 18 hours of free time....so if I did that in the am, I would probably be fine until the next am since I don't normally wake during the night to go. I will have to play with that part a little more. Right now I last until about noon, and that isn;t good enough. At least a only am going once or twice, with several hours in betweem vs 12 - 15 times over 2 - 3 hours.

Will report back tomorrow....

Nite fellow Enema-ites!

[ams5796]

I read on an enema website (yes, I'm reading those ) that the best time to do an enema is morning on an empty stomach. FWIW

Yes, Enema-ites, nice ring to it!



Ann

[tammylayne]

There is no room for lazy in this latest adventure.

Decided Wed nite that I was going to skip doing the enema and try it Thursday am. Well...the alarm went off...and...I didn't get up. I laid there thinking I could get another 45 minutes of sleep. I would be fine at work. It would be a good BM day. I could skip the enema....NOT.

Had a horrible day, went about 6 times at work and 6 more times after work.

So this am, I dragged my lazy butt out of bed 45 minutes early and did my 3 bottle routine where I get one in, empty, repeat. So far everything is normally pretty much over, done and settled about 60 minutes later, but since I had to go to work, that of course was not the way it went this am. Felt yucky for about 4 hours, feeling like things were about to start up all over again. They didn't...but it doesn't make the feeling or stress go away. So I am not sure I am big on the morning routine, but I am going to stick with it Sat and Sun since I don't have to go to work...so I can relax a little and decide after Sunday if I want to stick with mornings or go back to evenings. Choices...choices.....

Anyone else had any luck he past couple of days?????

Enema-ites - UNITE!!

[Peloton]

I agree, Tammy.

You need to commit yourself 100% to the routine or it's not likely to work. I've reached a point where's akin to just another chore, like feeding my cat and changing his litter.

Felt yucky for about 4 hours, feeling like things were about to start up all over again. They didn't...but it doesn't make the feeling or stress go away.

This still happens to me, although I've learned to just trust myself. I've developed a sense of when I'm finished. I can just "feel it," so to speak. But getting to that point took practice and patience.

Here are a few tips that I found helpful. After each enema session, I eat a few saltine crackers or a slice of bread. That seems to settle things. Also, I take 3-4 Immodiums. I'm not sure if it actually does anything, but the placebo effect gave me piece of mind.

As I noted above, I'm at a point now where I trust myself. I've been doing this for a year and haven't had one issue. So, when it's 3 hours after the enema session and my stomach feels a little upset, I just remind myself that all is good. Also, the worst thing that can happen is that I'll need to run to a restroom, which is essentially where I was at before I started incorporating the daily enema.

[ams5796]

Oooh, I think I'm onto to something and I'm starting to feel very excited about getting my life back. I have all of you on this thread to thank for the motivation. Becca mentioned that her husband Eric was using disposable enema bags that he got on Amazon. I decided to try them since I wasn't crazy about all the fleet bottles. The disposable bags are fantastic, inexpensive, and can be used more than once, if you choose. They're so easy to use and I finally feel like I'm doing it right. The whole process took less than thirty minutes today. I've had a couple of great days. This is really the most optimistic I have been about my situation in years.

Ann

[lauragb]

I hope everyone on here finds what works for them. I know doing enemas gives me a greater quality of life. Like Peloton, I treat the process as just another chore I have to do. It took me a while to get in this mindset but I'm there and happy.
I mentioned before that I do my enemas in the evening so I can relax afterward, take a warm bath if I really want my bowels to settle. I also eat some saltines or pretzels and find that calms things down too.

I know many of you prefer the bottles but if they don't work for some like they didn't for me, the bag is not a bad option. I know, I didn't want that whole set-up either but it's fine. I set the clamp on the tubing on a slow steady pace and take in a quart to quart and a half of water in about 3 minutes. I usually start going only a few minutes later after rinsing the equipment and putting it in sudsy water to soak. Releasing the stool takes from 15 to 30 minutes, and when I'm done, I'm done for at least 24 hours. I usually do the enema every day but take a couple of days off a week and don't have a problem waiting for 48 hours except when I eat beans and fruit smoothies four days in a row. The nice thing is that I can eat almost anything. I think though that doing one everyday does make the process easier, not as much urgency when trying to insert the water because the stool is further up the colon. I did have to learn how to relax when the water is going in and that keeps me from cramping too, if I start cramping, I just take deep relaxing breaths. All of this does take some getting used to but it is so nice not to worry about the bathroom all day when at work or play.

I really appreciate everyone's candor on this topic because it's not something I bring into my daily conversations. It helps all of us to hear how others are doing and to share ideas.

[ams5796]

I thought I had a couple of great days using the enema, but I now I have incredible pain which I assume is gas pain. This seems to be a problem for me that starts a few hours after using an enema. I don't know what I'm doing wrong. Does this happen to anyone else? I'm wondering if my body will adapt as I get into more of a routine.



Ann

[gracelinedesign]

Very very helpful posts here!! I'm about 3 weeks post ileostomy reversal and have clustering about every other day. Sometimes, if I'm lucky, I can go 3 days. My tumor was also extremely low - just 3 centimeters above my sphincter, so I had major projects with incontinence. That has just started getting better, but the clustering is so annoying. My surgeon told me to take a spoonful of fiber every day to help my stool to bulk up. Funny, because I thought fiber was to do just the opposite. This stuff is all so confusing!!

What i'm wondering... is there anyone out there who just stopped clustering? My surgeon made it seem like this would only be a temporary annoyance. But when I read the one person saying they were 6 years out and still clustering I about freaked. Daily enemas? Oy. I'm still working from home, but planning on going back to the office in a month and i'll be in a LOT of meetings and just can't afford to be clustering! Goodness gracious if people only knew all the 'crap' we have to deal with. ha!

[ams5796]

It's hard to say. There are probably many people that have found a plan that works for them using a combination of diet, fiber and probiotics. Over the past six years I just haven't found that and believe me, I've tried everything. Things are certainly better for me now than it was in the beginning of the process. It doesn't mean you won't achieve success.

But, your question is a great one. Maybe, it would be worth starting a new thread to ask the question. It will probably be buried in this enema thread and not too many will see it.



Ann

[tammylayne]

Love hearing the replies everyone!!!!

Laura, I am envious of you and Peloton, the idea of doing this once a day and being done with it all is so appealing, but at this point, not happening for me. I trust I will get there.

I did my thing this am, but have had 3 BMs since, so obviously I am not getting enough of a clean out. I just can't seem to take enough water and holding it seems to be totally out of the question. I will keep trying.

Ann...hang in there!!!!!! you said it yourself that you are getting your life back, so there must be a way to get through this part. What about taking some of those gasx pills after? Would that help elimnate the gas? My physiotherapist has me do this thing she calls I LUV U....it basically it just massaging the colon. You rub your tummy in an upwards motion on the right hand side, then across the top, then down the left hand side, sort of like a U...basically "pushing" the gas and stoool along in the direction you want it to go to come out the end...hope that makes sense. SHe says that by massaging, it helps to stimulate things to move along. I know when I am clustering I do this, and I THINK it helps. Might be worth trying. I know I get a pain on my left hand side about 30 minutes before I start to cluster, I am wondering if I have scar tissue or a narrowing of my colon here and things are getting stuck maybe. So I tend to massage here a lot, and I do think it gets things moving. Hopefully Peleton or Laura will chime in with some thoughts for you. Please don't give up...you really could be onto something here!!

Grace, I still think you are so early in the process, that things could still really improve for you without having to go to something like the daily enema. Many people find good results from bowel training with the MD Anderson plan, others make some simple diet adjustments, but at 3 weeks, your bowels are still working things out...so to speak...and where you are right now may not be even close to where you will be down the road. My surgeon said the first 6 months see the most improvement, I found I was 300% better by 8 weeks when I returned to work and you might find the same or better, I am really hoping that for you. I must admit, those first few months back to work I ate nothing until about 3 in the afternoon, so I was done work and home when things kicked in, and tied to the house until the next morning. Nothing in - nothing out was my motto. I hated it, and slowly started eating earlier as I gained some confidence. My days are still better than my evenings, but because it is so unpredictable it really disrupts my life, plus when I go, it ends up being 2 -3 hours of mad clustering.

Thanks again to all who are joining in this discussion. I feel like I have some accountability to this thread, so I am determined to find my way!!

[Jachut]

I thought I had a couple of great days using the enema, but I now I have incredible pain which I assume is gas pain. This seems to be a problem for me that starts a few hours after using an enema. I don't know what I'm doing wrong. Does this happen to anyone else? I'm wondering if my body will adapt as I get into more of a routine.



Ann

Ugh, I'm having a bad morning too. I've been doing this for a year now and the low grade pain and tenesmus after hasn't abated and I can get gas problems since the bulb introduces air - in fact I do that on purpose to create an xplosion, lol.

The feeling after for me is identical only less intense than th cramping and tenesmus I had with the tumou (that felt like labour, this is like low grade period pain). Makes me suspicious that my problem will turn out to be on sort of stricture.

But I used to get really I'll after, it has gotten better.

[Jachut]

Tammylane I get that left hand side pain too. For me it feels like a stitch in my side and it my signal that I need to go - rarely do I get a proper urge like in the old days - in fact that's pretty much all I need to trigger - the enema gives that urge and away I go, which is why I don't née lots of water, just enough to start me off and lubricate things, makes me wonder whether a defecating proctogram will show anything...

[ams5796]

Tammy - I wonder if you've had success today. I hope so! Maybe the fleet bottles aren't for you. I know they work great for folks on here, but I found I'm having better luck with the bag. I got the disposable ones from Amazon and they're great for a lot of reasons. I know Laura likes the regular bag and that would be very similar to what I'm doing. I finally feel like I'm doing it right. I take in a lot of water and keep it in for just a short period of time. I would like to increase the time but I kind of panic and jump on the toilet. But, still I think it's working. A lot of "stuff" comes out.

Because of your encouragement last night I decided to try another one this morning. I feel great. I always feel great for most of the day. It seems that awful pain occurs in the evening. And, again I'm not sure why. I'm going to try to drink more water today. Maybe I'm dehydrated. Or, maybe if I keep this up more and more of the "stuff" that's hidden away (?) will come out. Maybe that's causing the pain. I don'r know. Hopefully, it will reveal itself to me soon.

Onward, Enema-ites!

Thanks again to all of you for your encouragement and advice!

Ann