Daily Enema

[Jachut]

Well I'm well into the enema routine now, having finally gotten brave enough to try, it beats the five hour lactulose turnaround. I've been doing the enemas for a few months but I haven't gotten round te pain issue - I use a bulb syringe, with only about 250 ml water and it works instantly and pretty thoroughly, three movements at most. I have no pain and cramping whilst doing it but by the time I've finished evacuating, I have lower abdo crampiness which takes hours to go away and a really annoying stitch in my left side. Sometimes it brings on urges to push which are so mammoth I'm afraid of actually bursting or prolapsing something.

The enemas definitely work but at the expense of feeling well. For me it's a choice of feeling crap because of constipation or crap because of treating constipation. I truly long or the days I had the ileostomy and felt nothing from my colon at all!

I'm convinced this can somehow work, perhaps my surgeon can actually help (I haven't told him).

[SammyJ]

Very informative bunch of posts........but I am curious, knowing what you know now, would any of you still choosea reversal? My reversal surgery is planned for the end of November and I have often wondered whether I should opt out.....

[jacekica]

I had also very low rectal carcinoma - my cut is 2 - 3 cm from anus. I use for last 5 days lactulosa and it is so nice, next day when I am free at work and all day till afternoon when I take it again. But as Jachut said - after 2 hours comes a period of at least 2 hours of sitting on WC, and result is I don't have any social life any more.
So tomorrow i will ask new onc about it, and than will ask for details how to do it, if here such rectal catheter can be found.
I agree that it is not OK that no one of docs, no surgeon, gastroenterologist or onc think it is real problem for us, not going for days, cramping, impossible to evacuate bowel completely, runing in and out of WC.......

[Jachut]

This is such a complex question, personally my answer would be no, given my time again I'd stick with the ileostomy.

But I question how much of this is me, rather than a truly unsatisfactory outcome. I mean, I work full time,easily, I run, I go to the gym every day, I travel. So how bad can it really be? I see people with way worse troubles than me being way more stoic and positive. I am not trapped in the bathroom all day.

I am starting to suspect my constant obsession with and misery over my bowel function really does merit psychological rather than physical treatment, even medication. I have really not recovered emotionally from the whole experience, am much better than I was but two years on it still dominates my every waking thought. I think my perception is more of a problem than actual physical reality.

So I would say what I said to myself, you really have to try it. It wold be awful to never know. And very single person has a different experience.

[jacekica]

The use of daily enemas is the least understood and seldom discussed option that the medical community gives low rectal cancer survivors.

You can follow the link to see the full text of the article.
http://www.moffitt.org/moffittapps/ccj/ ... df/212.pdf

there is no article available in this link, maybe they transfer it to another link??? but there is no sign of that.

[beccab1]

My husband started doing this about 3 weeks ago. For the most part, it has been wonderful. He feels like he has his life back. I'm worried though. Four times now he has had severe abdominal pain. It is high, under the bottom of rib cage. He also had nausea a couple of times. I can't seem to find any information on what it could be. This time, the pain didn't start until about 6 hours after.

I'm worried about electrolyte imbalance or actual physical damage and I'm tempted to make him go to the hospital to get checked out if it happens again.

Any thoughts??

[prc]

I think you need to use an enema bag with 2 quarts of water, not just the bulb syringe. Then you will get a thorough cleanse and feel well all day. I have been doing this for a year, and it has given me my life back. If you can find the posts of the username crp, you will get some good instructions and websites.

[heart3beat]

I'm a Low rectal cancer survivor. Dx in 2009 Stage two,treatment and surgery at MD Anderson, Houston TX.. Lived through 30 + bowel movements daily for almost a year before any significant improvement. Daily enemas work! I do a 16 oz bottle of filtered water daily (a.m. works for me)..I usually warm the water to a comfortable temp. Sometime I use organic chamomile tea or a teaspoon of lemon juice just for a calm cleansing effect. I also take a high brand probiotic to maintain balance. I eat small meals and avoid dairy. I can get by with an enema every other day but I feel better if I do them on a daily basis. wish I had started this when the doctor first suggested it in 2010 and saved myself a lot of confinement and misery but never the less I'm on the daily plan now! I use an inexpensive enema kit purchased online from "Medegen Medical Products". " Gent-L-Kare". It''s what MD Anderson uses.. suppose to be disposable but can be cleaned and use over multiple times..Cost is around $3.00 per kit... I feel and look great..life is good! God was good to me.. I was fortunate enough to have the best physicians/ cancer care in the world. I hope this info helps.

[Peloton]

heart3beat -

I am so happy you found a routine that works for you. I had a similar experience. I tried regulating my bowels without using an enema for about a year following my reversal. Things were manageable, but it took a lot of effort. My biggest problem would be that my clustered bowel movements almost always occurred late at night, after I went to bed (it was as if my body finally relaxed, and the flood gates opened, so to speak). It really affected my professional life, as I would typically only get 2-3 full nights of sleep per week, and I work in a stressful and demanding profession.

Now I do an enema each morning. It's simply part of my routine. It now takes me about an hour to get completely ready for work (enema, shower, shave, dressed, etc.), whereas before I got diagnosed with stage 3c rectal cancer, my routine usually lasted 30 minutes. So the net result is 30 more minutes in the bathroom each morning. Things could definitely be worse, and I consider myself very lucky.

I am able to eat just about whatever I want (I avoid raw vegetables and even cooked spinach, just too rough). I have traveled to Europe and various parts of the country with this routine and have had absolutely zero issues, including on an overnight flight where I treated myself to business class and heartily indulged.

[Jachut]

The enema works slightly different for me- it triggers the urge to defecate and my body does the ret.

I've had no investigation really to date but hat I think is happening is that I do not have normal rectal (or rater pouch) sensation. The label I ave been given us obstructed defecation but that's not it really. I don't get the norml urge. I can read other body signals that it's time to go, and if I increase the volume in my rectum to a certain point, then suddenly the urge arises and off I go - an easy, complete and quick bowl movement - my muscles work in perfect harmony, there's no internal obstruction and I dont have to liquefy bowel contents, just trigger it.. Im always left wondering how that could have all been stored there without me "needing to go".

The enema works so well and so easily and my problem I suspect can't be fixed, so I've elected not to really investigate at this point.

[heart3beat]

Life is great and if a morning enema is all I have to do.... Bring it on!!! I was surprised to learn many people, even the younger crowd use enema therapy to maintain optimal bowel health. Blessing and good health to all !

[CRP]

The daily enema is a difficult lifestyle choice. Either you accept your life being controlled by your new bowels or you take control with a daily enema. Often taking control of your own bowels is critical to your relationships, professional life and enjoyment in life. It is up to you.

The commitment to do the daily enema is not easy. Being tied to doing a daily act that most people perceive as gross is hard to accept. For those of us who are a bit compulsive, the daily enema is a constant reminder of the cancer or other major medical problems. It is up to each to decide if their life would be better with the routine. What is so unique about this option is that it truly does no harm to your body and you can stop it at anytime. Compared this to the option of medication that can kick in at any time and last for hours.

Thank you for people like Peloton, Jachut, heart3beat and prc for sharing their success stories. The lesson to be learned is that you truly need to do a full two quart enema daily to have near total control. That means that you have to use the correct equipment and technique. An enema bulb is too small and dangerous to use daily. After doing the daily enema for the last 14 years it is “almost” normal to do the enema every day either in the shower or while sitting on the toilet. Like Peloton, I have traveled extensively internationally and find that with the right equipment and planning you can do an enema almost anywhere (including wilderness camping).

My website lowrectalcancer.com is the best way to understand the issues. PS. For the next month you need to link into it from Google search on that name. The site is being moved to another provider and it is a hassle. Good luck to each of you on your journey.

[mm66ny]

Sounds like a lot to commit to. I've tried just eating like before, changing the time when I eat, what I eat, whatever. It's like chasing the elusive perfect BM. Probably ain't gonna happen.

[Jachut]

See, I do use an enema bulb. I am untroubled by frequency. I'm a oncce a day or once every two days gal because it seems it can build up and up and up and I get no urge until I start getting back pain or side pain. Then I only need about 500 Mls of water to trigger an urge and it happens.

Mind you, it then takes a couple of hours for the feeling of needing to go to then subside but by and large I have learned to ignore it.

[Peloton]

Sounds like a lot to commit to. I've tried just eating like before, changing the time when I eat, what I eat, whatever. It's like chasing the elusive perfect BM. Probably ain't gonna happen.

This is pretty accurate and the perfect bowel movement is not going to happen. A few close people know about my daily routine and one asked when I could stop doing the routine and things would go back to normal. I explained that losing a rectum (plus all the radiation) is similar to losing a limb, and expecting normal bowel movements without a rectum would be akin to walking normally after losing a leg. Assistance from medical devices would always be necessary.

But the thing is, that's OK. After having endured a year of treatments for stage 3c rectal cancer, I'm just glad to have something that remotely resembles a normal life again.

As noted above, the advantage to the routine (and what makes it worth enduring, the downsides and all) is having control over my bowels. I pick when and where I want to empty my bowels. Sure, doing so is uncomfortable and a little more time consuming. But I get it over with and go about my day.

CRP - would you mind sharing how you did the routine while in the wilderness? I'm a big outdoor guy and have a dream backpacking trip I am thinking about doing. My only hesitation is doing an enema (it would be about an 8-day trip). If you don't feel comfortable sharing on this site, would you either posting it on your website or emailing me at pelotonchicago (at) gmail (dot) com?