Low anterior resection, complete constipation, daily enema, but still in pain

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michellem
Posts: 5
Joined: Fri Jul 27, 2012 10:47 am

Low anterior resection, complete constipation, daily enema, but still in pain

Postby michellem » Mon Feb 06, 2017 3:26 pm

Hi, rectum-less friends. My loop ileostomy was reversed March 2013 (j-pouch, which I assume disrupted the sigmoid).
I have never been able to re-establish reasonable bowel function. Defagram showed mild pelvic floor issues but none of the real coordination problems that would indicate biofeedback would help. Also, colonscopy 9/2016 was normal (except for one polyp).
After trying every technique and med that turned up in my research (and almost every fiber supplement or Rx targeting motility usually produced bowel movements at about once per week, meanwhile causing pain), I started doing the daily tap water enemas (in a.m. before work), as discussed in this forum. For several months this was satisfactory, and I could eat what I wanted, just avoiding large servings of bean and entree-size green salads). After an enema, I would have rectal/pelvic floor pain/spasm for about an hour afterward. Once the pain let go (usually after sitting on a hot pad and sometimes taking small dose of oxycodone), I would be fine for rest of the day. I could even skip a day.
After a while (months), the enemas stopped being enough. I have gut pain that slowly builds throughout the day and also builds during the night. Morning enemas started to mean another enema after work. Two a day just seems intolerable. I switched to after work to keep it at once a day, but the pain is the real problem. Sometimes just bloat during the day, sometimes acute pain/great pressure just diffuse everywhere below the belly button, sometimes localized, feels like having a bayonet twisted. Almost every night, I wake up in pain. On a good day, this is not too long before I'd have to get up anyway. On bad days, it is the middle of the night and getting back to sleep is a problem.
I know pain meds decrease gut motility, but I could not function without them at this point. If I'm having to do daily enemas, anyway, is motility even a necessary goal? If the real problem for the bloat/pressure/bayonet pain is trapped gas, would I be better off going low residue diet and avoiding all gas producers?
Anyone in a similar situation?
Thanks for any help!
Michelle
5/2012 (age 48 at dx) Stage 2a T3N0M0 mid-rectum
8/2012 6 weeks 5FU continuous and radiation 5 days/week
10/2012 surgery: LAR and temporary loop ileostomy. Path: no residual primary tumor; nodes 0/6; positive for perineural invasion (Stage upgraded to 3b because of perineural invasion)
11/2012 - 2/2013 Chemotherapy modified FOLFOX6 - Oxaliplatin, every 2 weeks for 8 cycles
3/2012 reanastomosis
3/2017 still NED

michellem
Posts: 5
Joined: Fri Jul 27, 2012 10:47 am

Re: Low anterior resection, complete constipation, daily enema, but still in pain

Postby michellem » Thu Feb 09, 2017 9:58 am

A note to ams5796. Thanks so much for sharing your experience! It is some salve to have company in the misery. For some reason, the board won't let me reply to your Private Message privately, so I'm hoping you see my "thank you" here. I'll be interested to see if you try the FODMAP elimination diet and if it helps you. Take care!
Michelle
5/2012 (age 48 at dx) Stage 2a T3N0M0 mid-rectum
8/2012 6 weeks 5FU continuous and radiation 5 days/week
10/2012 surgery: LAR and temporary loop ileostomy. Path: no residual primary tumor; nodes 0/6; positive for perineural invasion (Stage upgraded to 3b because of perineural invasion)
11/2012 - 2/2013 Chemotherapy modified FOLFOX6 - Oxaliplatin, every 2 weeks for 8 cycles
3/2012 reanastomosis
3/2017 still NED

ams5796
Posts: 2227
Joined: Fri Feb 06, 2009 10:07 am

Re: Low anterior resection, complete constipation, daily enema, but still in pain

Postby ams5796 » Thu Feb 09, 2017 3:39 pm

Michelle, I'm glad you got my message. Sometimes it takes a few postings on here before you can send a private message, but I'm glad you could receive one. I wonder if your situation is any better. I hope so. I wish someone would come along with some wise words for us.

The learning curve on the FODMAP diet is steep, but I'm going for it. The first phase of it is very restrictive. I'll let you know how it goes.

Good luck,
Ann
Stage 3C Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14

tammylayne
Posts: 2143
Joined: Fri Jul 16, 2010 9:24 am

Re: Low anterior resection, complete constipation, daily enema, but still in pain

Postby tammylayne » Sat Feb 11, 2017 10:32 am

I am going to ask the obvious...sorry. Have you tried adding in Gas X pills? I know meds are not your first choice...but just wondering if perhaps there could be an issue with the shape of your colon after surgery, and it is causing gas to become trapped? Also...my surgeon encouraged me to really play with the amount of water I was using to help "eliminate" :lol: some side effects I was having in the early enema days. I was using the little enema bottles to measure out my water I was putting in the red bag, and it was 8 that I was using. Too much water for what my colon needed and could hold. I now only fill up the little bottle 4 times and I get the same complete clean out. Not saying this is your fix...but just trying to offer suggestions...I also do some "moves" while sitting on the toilet during the empty stage....I rock side to side and sometimes massage my tummy in a circular motion....encouraging anything in my colon to move along...including trapped air. I know when things have been successful when there is a big release of gas at the end. TMI??? I hope not because I have increased my quality of life by 500% by perfecting the enema...and if I can help anyone improve theirs...I can better accept this journey that I call my life...
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

ams5796
Posts: 2227
Joined: Fri Feb 06, 2009 10:07 am

Re: Low anterior resection, complete constipation, daily enema, but still in pain

Postby ams5796 » Sat Feb 11, 2017 4:00 pm

I love when Tammylayne weighs in. I'm always inspired by everything she says. I'll take any suggestions she has...never TMI! I still think that working out the daily enema is the way to go and I will keep trying different things with it. The FODMAP diet may help, but it's extremely restrictive and the research is 50/50 that it helps. Maybe a combination of both will work.


Ann
Stage 3C Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14

michellem
Posts: 5
Joined: Fri Jul 27, 2012 10:47 am

Re: Low anterior resection, complete constipation, daily enema, but still in pain

Postby michellem » Sat Mar 18, 2017 4:24 pm

Tammylayne, yes, thanks for weighing in! So many rely on your expertise. I absolutely am not adverse to medications -- just have had little success (Amitiza, docusate sodium, magnesium supps, Linzess). I have tried Gas X, but possibly not in exact combination of what I am doing now. Will have to consult my "pooh journal" (oh, how we all become devotees of the scientific method!) and will definitely try again. I have tried supplemental food enzymes, too, and a low residue diet, with a view to producing less gas in the first place. I am positive that trapped gas is the source of a great majority of my gut pain. I do pass some gas "normally" during the day, but obviously not enough. It's like the brakes part of my colon still works great, but the garage door opener is gone. The bulk of the gas stays trapped until I get any solids out of the way.

Reader warning: TMI to follow (if that wasn't already too much, haha).

With the daily (or twice daily too often) enema, the sequence is usually: trickling mostly water; then watery plus small formed solids; then gas (much groaning); sometimes a stage of not-formed solids (I call this "sludge"); sometimes another round of gas. I know I am done when I get the "little bits" -- some undigested vegetable fibers etc. and strips of what I can only surmise is mucous or sloughed-off mucousal tissue.

I have played around with the amount of water, as you suggest. A small amount (like 4 oz. Fleet's bulb enema or two of those ) is not enough. 4 cups works ok but sometimes feels incomplete. 6 cups is my standard. Even with that sometimes felt incomplete, so I tried 7 cups a few times but am concerned about stretching my colon too much. I have also played around with body positions and movements. Staying shoulders down/bum up after introducing water to let gravity work the water from descending to transverse to ascending; standing and moving hips from neutral position to forward a few times, which helps to get things started; and a right knee bent and pulled back to the belly maneuver, inspired by yoga "wind relieving posture" to move the gas on out. I will go back and study your reply to see if there is anything else to try to perfect the enema. Eh, you can see why I am frustrated! Thanks for being a friend indeed!
Michelle
5/2012 (age 48 at dx) Stage 2a T3N0M0 mid-rectum
8/2012 6 weeks 5FU continuous and radiation 5 days/week
10/2012 surgery: LAR and temporary loop ileostomy. Path: no residual primary tumor; nodes 0/6; positive for perineural invasion (Stage upgraded to 3b because of perineural invasion)
11/2012 - 2/2013 Chemotherapy modified FOLFOX6 - Oxaliplatin, every 2 weeks for 8 cycles
3/2012 reanastomosis
3/2017 still NED


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