Enema’s stopped working?

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MaryannW
Posts: 76
Joined: Thu Jun 04, 2015 7:32 am

Enema’s stopped working?

Postby MaryannW » Tue Sep 06, 2022 5:14 am

Hello again. I’m 7 years NED low rectal cancer, Chemo, radiation, UlAR, ileostomy and reversal. Tried for 3 years to manage Low Anterior Resection Syndrome before starting irrigation daily. Now, after more than 3 years, I’m ending up with bloating and gas, and breakthrough toilet trips late afternoon/early evening. I’ve had all the tests and all are clear thank goodness. My question:

Have warm water tap enemas ever stopped working for long term users?
Dx Feb 2015 RC Stage 2a
5.5 weeks Xelolda + Radiation
ULAR 25.6.2015
6 Rounds mop up Xeloda
Reversal 7 April 2016
NED & living with LARS

Claudine
Posts: 746
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Enema’s stopped working?

Postby Claudine » Tue Sep 06, 2022 2:04 pm

Good thing the tests came back clear! I can't help you with your question, but am very interested since my husband is likely to suffer from LARS very soon and daily enemas have been presented as a way to alleviate some of the symptoms.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 vertebrae 04/18; left adrenal gland & small lung nodules 03/19;
rectum 02/22 (pT3 pN0 stage 2A); L3 vertebrae 09/22

Surgeries: intestinal resection 05/18 (no cancer - Crohn's); adrenalectomy 02/20;
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22;
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20;
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22

MaryannW
Posts: 76
Joined: Thu Jun 04, 2015 7:32 am

Re: Enema’s stopped working?

Postby MaryannW » Tue Sep 06, 2022 3:49 pm

Thank you, yes it is a relief the tests were normal. I also have to follow up with a colonoscopy in the next few months, that might give them more information as the CT won’t pick up cancer in the mucosal colon. I used to sing the praises of daily warm water enemas…now I’m wondering if they’ve stopped working. Your husband will need to wait for a while before doing them, and get his surgeon’s ok to make sure they’re safe for him to do. It’s not a cure all but it did mean I wasn’t sitting on the toilet all day. Now, well I am getting back to multiple bowel movements despite the enema and horrible and painful bloating and gas in the evening. So I’m not sure if the enemas have stopped working. No one seems to be able to help answer that question.
Dx Feb 2015 RC Stage 2a
5.5 weeks Xelolda + Radiation
ULAR 25.6.2015
6 Rounds mop up Xeloda
Reversal 7 April 2016
NED & living with LARS

User avatar
John72
Posts: 349
Joined: Fri Jan 28, 2011 3:06 am
Location: Los Angeles

Re: Enema’s stopped working?

Postby John72 » Wed Oct 12, 2022 1:56 pm

After ten years, I thought the same. My bathroom habits took an ugly turn for the worst.

One thing I had added to my diet was raw spinach salads with dinner. The timing of my issues was concurrent. I stopped spinach and went to lettuce and romaine salads instead. Things completely returned to normal in less than a week.

I’ll have to get my nutrients elsewhere.
7/13/10 CC
7/23/10 -3C RC, 7cm,15/33 lymph nodes
8/31/10 5 1/2 weeks of radiation + Xeloda
11/12/10 6 rounds Oxy + Xeloda
3/25/11 Finished chemo
6/15/11 Colostomy reversal followed by infections
9/05/14 Clear CT scan

shade
Posts: 161
Joined: Thu Feb 20, 2014 7:08 pm

Re: Enema’s stopped working?

Postby shade » Wed Nov 09, 2022 11:23 pm

Sorry to hear about your problem…I had serious problem with LARS from the outset after my ULAR 8 years ago. After a year or so of misery I started warm water enemas every other day. This was a game changer. Eventually I needed to do them daily, however. The enemas were still working pretty well, but two years ago I switched to daily Peristeen. I prefer Peristeen, it is quicker and easier to administer and I think gives me a more complete clean out. My special problem: I have stenosis. This turned out to be its own unique problem that I had to learn to manage. It is a real drag to have a liter of water up there without being able to pass anything. Currently I get a CR surgeon to do a dilation every 6 mos (under anesthesia) and I do dilation on my own every 2 or 3 days. Earlier this year I was gradually having more difficulty passing so I switched from daily colace to daily miralax (about a half dose). The miralax has made things a lot better but it took some trial and error to figure out how much.

There are so many unique factors for each of us, so everyone's experience varies. But it helps just to get ideas from this forum for new things to add to the trial and error routine. I learned about warm water enemas from this forum, and I will always be grateful to the users who posted on that.

Best wishes and good luck…
Stage IV rectal
10/12 Cancerous polyp removed age 51
6/14 uLAR and resected liver met
12/14 finished FOLFOX / Avastin
1/15 ilio reversed = LARS!!!
1/20 onc said “cured!” - no further monitoring unnecessary
5/21 chest pain revealed new lung mets… radiation
10/21 maintenance avastin/xeloda
9/22 stivarga 2 weeks, d/c'd due to foot pain
10/22 vectabix + irinotecan

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: Enema’s stopped working?

Postby prayingforccr » Thu Nov 10, 2022 10:30 am

shade wrote:Sorry to hear about your problem…I had serious problem with LARS from the outset after my ULAR 8 years ago. After a year or so of misery I started warm water enemas every other day. This was a game changer. Eventually I needed to do them daily, however. The enemas were still working pretty well, but two years ago I switched to daily Peristeen. I prefer Peristeen, it is quicker and easier to administer and I think gives me a more complete clean out. My special problem: I have stenosis. This turned out to be its own unique problem that I had to learn to manage. It is a real drag to have a liter of water up there without being able to pass anything. Currently I get a CR surgeon to do a dilation every 6 mos (under anesthesia) and I do dilation on my own every 2 or 3 days. Earlier this year I was gradually having more difficulty passing so I switched from daily colace to daily miralax (about a half dose). The miralax has made things a lot better but it took some trial and error to figure out how much.

There are so many unique factors for each of us, so everyone's experience varies. But it helps just to get ideas from this forum for new things to add to the trial and error routine. I learned about warm water enemas from this forum, and I will always be grateful to the users who posted on that.

Best wishes and good luck…



How effective have you found the dilations to be?

Both the surgical and the self?

I have a pretty bad stricture/stenosis as well which affects my morbidity more than anything else (at least, for now).

Ive been looking into these for awhile

https://www.intimaterose.com/collections/anal-dilators
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 sbrt and immunotherapy failed
12/22 TIL Therapy

shade
Posts: 161
Joined: Thu Feb 20, 2014 7:08 pm

Re: Enema’s stopped working?

Postby shade » Fri Nov 11, 2022 5:38 pm

Hi,
My experience with dialation by a surgeon has been mixed. I have had 6 different doctors do this procedure over the years. Some GI doctors are not eager to bother with this procedure, and some prefer to do it as a throw-in procedure when they do a colonoscopy. Apparently treating anal stenosis is not exactly a prestige specialty in the GI trade. I have really only found one doctor who seems genuinely concerned about the impact of stricture on my daily functioning, but your luck will be better, I hope. I have learned a few things: some doctors use dialators and other devices, whereas others just use their fingers. I would ask about that. I had one doctor who just used his fingers, and his procedure helped and I went back to him for a few years. The other finger-only procedures did not help me much. I think they were not aggressive enough, or unfamiliar with how to do a dilation. The 2 docs who used actual devices were more effective: they were actually GI surgeons, not regular GI doctors. My suggestion is to ask specifically how they plan to do the procedure, what they will use, and how many they have done. The other thing I noticed is about half of the docs who did this for me were not really thrilled to do it, even somewhat in sympathetic. One of them even suggested I consider getting a colostomy! (She said “I usually recommend that for all my serious LARS patients.”) The guy I have now is great. He gets feedback from me a couple of weeks after the procedure to see how much it helped. If I am not significantly sore for a few days after, I am quite sure the procedure didn’t do anything.

For at home dialation, which for me at least, is more about maintaining than stretching, I have 2 sets. The first set linked below is pricy and doesn't go in as far as I need them to, but the taper and the material are really helpful. The ones you linked seem similar to these.

https://www.cmtmedical.com/product-tag/rectal-dilators/

The others I use are inexpensive…hegar dialators. I don’t like the steel material or the lack of taper, but the length and the range in sizes are great.

https://www.amazon.com/ArtLab-Dilator-S ... 6X9A9OTSKH

Typically, every time I do a dialation, I start with a tapered one and then repeat the procedure with a hegar or two. Depending on the status of my stenosis, a little trial and error tells me what I should be using, and I keep using those 3 times a week. I have not needed to switch sizes for awhile, but over the years I have used most of them.

Sorry to hijack… I. Wish you the best…I hate stenosis!
Stage IV rectal
10/12 Cancerous polyp removed age 51
6/14 uLAR and resected liver met
12/14 finished FOLFOX / Avastin
1/15 ilio reversed = LARS!!!
1/20 onc said “cured!” - no further monitoring unnecessary
5/21 chest pain revealed new lung mets… radiation
10/21 maintenance avastin/xeloda
9/22 stivarga 2 weeks, d/c'd due to foot pain
10/22 vectabix + irinotecan


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