Relief for diarrhea

[AppleTree]

Well...I have no rectum and no stoma. Not only that, surgeon cut into sphincter muscle to get margins. I take Lomotol... Imodium won't help. I take 1 Lomotol in the morning when I get up and 1 before bed. In between...it depends how I feel. I take 1 at the first sign of runs. If after an hour things have not slowed down, I take another. If I am getting to bile, I will take a 3rd. Most days I take between 4-5. Directions say to take 1 every 8 hours, but my DR tells me to go by my body, but try not to take more than 5. Go get fluids at that point! Some days I only take the morning and bedtime dose. Hard to figure out!

I do not have leakage problems. My issue is once I start going...to stop. I think I am done, get 1/2 down hall and run back to the toilet. Once it starts coming out, I have no way of holding it in. So, the trick is to try to time my "time" when I am home. Mostly, I am capable of going out and about with my day...always carrying a bag of supplies and clothes for just in case.

Now comes the problem of Folfox when I am already on max dose Lomotol. DR gave me a Sandostatin shot on Weds. with chemo. That held pretty good, in combination with 4 Lomotol each day. But tonight is Friday and I keep running to the toilet. DR was worried about my dehydration possibility and already scheduled me a chair for fluids, everyday over the Labor Day weekend, if needed.

So, if you have issues with diarrhea, ask your DR about Lomotol. If that is not strong enough, ask about the shot. I am hoping I am some better tomorrow.

[susie0915]

I also have no rectum or stoma. I do have my sphincter muscle. I had my ileo reversed four weeks after resection due to a bowel blockage. Since my surgeon had to go in to remove scar tissue he would do reversal. Then c diff infection, not fun. After I did my adjuvant chemo but did experience diarrhea. Managed withl lomotil alternated with immodium. The risk of too much is the meds causing constipation. After a year of trying to get my bms under somewhat normal schedule I went to the bowel contro! Clinic at university of Michigan. My issue was not diarrhea but just frequency could be 15 small bms a day. The Dr at u of m suggested enema to empty lower bowel. I do a tap water enema every morning. It takes about 30 minutes and I am good for the day. It has given me a normal life again. I can make plans without stressing, not afraid to eat, don't have to take lomotil or immodium, and have been able to put some weight back on lost during treatment. There are other members here that have also incorporated the daily enema into their routine. It is something to consider or talk to your Dr about. There are patients with permanent colostomies that irrigate. It is basically the same thing. I never thought about it but so glad I went to u of m because it has been a game changer. I don't know if it will be a problem while doing chemo treatments, but maybe down the road. If you look through these boards you will see other discussions about this subject.

[JJH]

Note: Lomotil is spelled like this:

Lomotil
.
It is available by prescription only.

[susie0915]

Yes Lomotil is by prescription only. It is stronger than immodium. I tried following the MD Anderson bowel control program, and alternating lomotil and immodium every three hours as part of the program if you are experiencing diarrhea or frequent bowel movements. It does state if no bm during the three hours between skip the next dose, so as not to put you into constipation which I also experienced. The MD Anderson bowel control program is very detailed and can be found online (I am not sure how to add the link). It involves using Citrucel or Metamucil to bulk up stools and basically a step by step program to retrain bowels to empty at the same time every day. I know many have found success with this program. I tried implementing for a year before going to U of M. Doing the daily enema has just been the best solution for me to regain a normal life. I also worked with a dietician and had pelvic floor physical therapy which was also helpful.

[JJH]

... The MD Anderson bowel control program is very detailed and can be found online (I am not sure how to add the link). It involves using Citrucel or Metamucil to bulk up stools and basically a step by step program to retrain bowels to empty at the same time every day...

I think this might be the MD Anderson document that you were referring to:

Diarrhea: Bowel Management for Frequent Stools
https://www.mdanderson.org/patient-education/Bowel-Management/Diarrhea-Bowel-Management-for-Frequent-Stools_docx_pe.pdf

There are other documents in the series as well.

[Lee]

I'm just going to throw this out there. Some people have found great success and control with daily enemas. Once in the morning, good to go for the rest of the day and night. Guess there are some people with stoma that do something similar and do not have to wear a bag, just a large band-aid.

For me, cheese does bulk me up.

Good luck, diarrhea is no fun.

Lee

[Shana]

I've been taking tincture of opium, it's made all the difference in controlling my chemo induced diarrhea from irinotecan. I take .6 mg every 4 hours as needed, it's been effective so far. I tried alternating immodium and lomotil on my last chemo round and ended up dehydrated so hoping that the tincture which I started yesterday after Monday chemo will do the trick. I don't use it on my off week and it doesn't get you high.

I also travel with change of clothes and supplies for my transverse colostomy. Constipation is not a concern due to the placement of the stoma. It's hard when life revolves around your bowels but you can do it once you find what works best for you.

This forum is so helpful, there's always someone who has been where you are and willing to offer advice.

Good Luck!

Shana

[susie0915]

Thank you Lee for posting the MD Anderson link. And yes the daily enema works beautifully for me. We all have to find what works best for us by learning of all options available. That's what makes this forum so valuable. It provides us with info we may not know about otherwise.

[Lee]

Thank you Lee for posting the MD Anderson link. And yes the daily enema works beautifully for me. We all have to find what works best for us by learning of all options available. That's what makes this forum so valuable. It provides us with info we may not know about otherwise.

Thanks, I wish I could take credit for the posting from MD Anderson, butt I believe JJH gets the credit for that link. Yes we do have some wonderful people on this forum, we are lucky to a vast collective of knowledge people here.

Lee

[AppleTree]

Thank you for the advice...lots of options to consider. I added Metamucil to my routine this morning, so thank you for that. I thought half in morning and half in evening and add on from there. Sometimes my stomach really hurts so I tend to add new foods/things slowly! I am usually pretty good, but as I said, always have emergency supplies with me, just in case. I think the Folfox threw me for a loop. Well, 1 treatment of the projected (optimistic?) done. And, if things get worse, I will try some of your other suggestions! I am definitely going to stick with the Sandostatin shot on treatment weeks.