continued spasms and cramping 2 months s/p abdominoperinal resection with colostomy HELP

[lmatthews128]

HI, My Name is Lisa and I am the caregiver of my 56 yr old husband who in August had an APR (removal of colon, entire rectum and anus) for a very large Stage III-IV colon cancer. I am a nurse which is both good and bad because my mind does not stop trying to figure out why 2 months post op he is having horrible abdominal muscle spasms, cramping, horrific gas and motility issues. Before you say, it could be the food he is eating, I have tried resting the bowel then slowly introducing liquids the soft foods, non-gas producing, non inflammatory etc etc etc. I have tried antipasmatics, nausea medications, probiotics, pre-biotics, muscle relaxants etc etc etc. I even ordered the best probiotic on the market via the internet that has multiple strains of bacteria to help regulate his microbiome that was destroyed from radiation, chemo, surgery and all the antibiotics. Because of these GI issues, he has lost 35 pounds and that weight loss is from before his IV chemo that was started this week.

I am now wondering if this is a radiation coloitis, or if its a nerve like trauma from surgery. He had thrush post op so then I thought maybe it spread through his GI tract since they only treated him orally with a swish and spit nystatin but his labs dont indicate infection. I am totally stumped at this point. He has most of his colon in place so he should be producing more solid stool, BUT he isnt taking enough fiber because I had to stop it due to worsening cramping and gas which resulted in distention and then he wouldnt eat at all. He definitely has improved a bit but still has intermittent motility issues every 2-3 days where he moves his bowels 5 times in a day with Some spasm and cramping but then backs up and doesn't have a BM for a day or two with Day-long spasms, cramps, gas and cant eat... then the cycle repeats. Has anyone had this issue???

[To Dream a Dream]

My heart goes out to you & your husband during this difficult time. Welcome to our board where we hope you'll find information to help you. During this pandemic, our medical profession is facing new challenges, but do not hesitate to call your physicians or hospital for assistance if you feel the need for their immediate help .
As a nurse, you know it takes a team effort of your specialty doctors & nurse practitioners, etc. to provide a good long term support system. By keeping them informed of your husband's current condition personally they can best work together with you both to treat & manage his care.
Also, there are WOCRNs specially trained to help with ostomy control available. Here is a link to the UOAA's website that may put you in touch with a group in your area. https://www.ostomy.org/support-group-finder/ Many of these UOAA chapters know of local ostomy nurses.
Here is another link about care at home: https://www.ostomy.org/nurse-home-health-information/
Not everyone has had access to a Registered Dietitian, & you may find this a handy help: https://www.ostomy.org/diet-nutrition/
And please continue to visit our Discussion Board & let us know of your progress.

[ot dave]

Hi Lisa,

From reading your description, I'm wondering if the lack of a daily BM is causing his issues. Was that his routine prior to his ostomy placement? I always had daily BM's. Usually in the morning and after dinners...
Now, if I have output sitting around in my colon, I get the same symptoms you are describing. The longer the output stays in the colon, the more gas that will be produced, which increases volume in the colon, initiating peristalsis (and the cramping)....
Have you tried any stool softeners? Miralax is typically pretty effective for doing this, making the peristalsis easier, more comfortable, and more effective.
As daily maintenance, I would suggest starting an irrigation routine. I irrigate every day, and routinely have no BM's until the next morning when I irrigate again. I can even go more than 48 hours at a time with the use of immodium and intake management. The irrigation helps to give me back some control of my BM's. Daily irrigation might help decrease the consistency of his output, making it easier to pass, which obviously would decrease the gas and cramping that he is experiencing. With the BM routine you describe, he could possibly irrigate every other day and have good success. Check out the irrigation board for more in depth information.
Hope that helps some.

David

[lmatthews128]

Thanks for your reply! It turned out he was obstructed due to intermittent paralytic ileus. He had the perfect storm I suppose, low potassium, lots of nausea and anti-spasm meds that decrease gastric motility, limited activity, s/p surgery etc. He is doing much better thankfully. All GI meds stopped and he is having his potassium monitored weekly so we can keep that stabilized. Hes now paying close attention to hydration and making every attempt to get more exercise. He still has 4 more rounds of chemo but at least he stopped losing weight at this point, hallelujah!!

[To Dream a Dream]

Lisa: Thank you for the very positive update on your husband. Please give him our best wishes & congratulations on his progress. Remember our Board is here for you also & to check in with the UOAA website for current news & helpful tips. God bless you both.

[ot dave]

That's good news. I had a drop in potassium and ileus after a parastomal hernia repair that put me in the hospital for 2 weeks. It was miserable. I know he's got to be feeling MUCH better now!