hot lava poo

[arizona mom]

First let me say how wonderful it is to have this forum to ask these kinds of questions...

I am supposed to be on my good week between folfiri treatments. I had treatment #2 last Wed-Fri. I have tolerated it fine except for two things. First, I lost 90% of my very think and full head of hair over the course of about 4 days. I was expecting hair loss but I didn't realize it would happen so fast! We buzzed it yesterday and I'm coming to terms with being bald for the next 6 months or so...

Butt... the real reason I am in desperate need of help is that my poo feels like hot lava. My bowel consistency has stayed pretty normal (soft and sometimes watery bowels 4-5 times a day). I only have half a colon so food seems to go through me pretty fast. Normally that is not much of a problem. So, I don't think this is about straining or constipation or diarrhea.

It was the same pattern both folfiri cycles. It started about day 3. The first cycle it resolved itself about day 12. Still waiting for relief this cycle.

I told the nurses when I went in for chemo last week. The doctor prescribed a topical thing. I also had my 6 week checkup with the gyn onc surgeon last Wednesday (chemo day). and told her about it and she gave me another prescription as a back up. She poked a finger in there and "didn't feel anything concerning". This happened to be in that small window of time when the pain had resolved itself. So although very, very uncomfortable, that exam did not result in my head spinning around like LInda Blair in the Exorcist, like what would happen if she were to try that procedure today.

I have used tucks, diaper rash stuff, the two prescriptions, I use a bidet, pat dry, I take a sitz bath after just about every poo, and last night I put ice on it. The pain is still excruciating! Nothing seems to be helping. Thank God, it is not constant. It is just while I'm going poo and maybe the 15-20 minutes following. Other than that I do feel kind of raw and uncomfortable in the area, but now I'm wondering if that might be just as much the result of all the topical treatments I'm throwing at the area. I also started to feel pelvic pressure (like in the vagina and bladder). I'm concerned I might be giving myself a bladder infection or something. Maybe because of all the epson salt sitz baths?

I probably need to make some phone calls this morning, but I'm not sure who to call first. I feel like I want someone to be able to know what exactly is going on so we can find the appropriate treatment. Butt, I can not imagine having a DRE at this point without passing out in pain.

Anyone with a similar experience? Insights and suggestions would be so much appreciated!

Thanks!

[midlifemom]

I would think getting the diarrhea under control would be first priority. What anti diarrhea meds are you on? If they're not working, get onc to prescribe something different.

Regarding the pain, someone on the board recommended calmoseptine, which I found helpful.
Good luck!

[arizona mom]

Thank you for you input. I didn't think the loose bowels were a problem because they don't seem to be any different than what has been normal for me since my colon surgery last year. But I think you have a good point. I'm going see if immodium helps.

I'm also going to pick up that calmoseptine. Add it to my arsenal.

If I can get this worked out, I think the folfiri will be pretty manageable. I'm going to talk to my onc on Tues.

Thanks!

[Nik Colon]

I lost my hair like you, and as far as diarrhea, did you get atropine? I asked for it at the beginning but ended up constipated I assume because I was on oxycodone so the next one I had with the irinotecan I was cut to 80% but I also didn't get the atropine and was ok also assuming that it didn't affect me as much because of the oxycodone so if you are having diarrhea and haven't had atropine I would ask about it

[Stanfordmom]

Lara,
Cannot help with your side effects, sorry.

I just wanted to give you a huge hug (((((((((Lara))))))))

hang in there, and I hope you get something to help with this.

Sha

[Joannerogers]

Try rinsing off in the shower after each movement, pat dry, and if you have any of that lidocaine cream they give you to put on your port try that, and after 2 loose movements take Imodium to stop your bowel movements. I think it is the digestive juice that just basically is trying to digest your skin, so rinse off after each movement to get the juice off. Hope this helps, it did for me.

[CRguy]

The only thing which worked for me was a Rx by the Rad Onc and although I did not really need it during chemoradiation ......
I was liking it a LOT after takedown

So ... available as suppository, topical ointment, or can be infused with one of those really stylish "BUTT nozzles" you attach to a tube of ..... proctosedyl / proctomyxin / proctosone .... OR some such other name depending on where you are and what Pharmas supply your local druggists.

the ASSential contents for me were :
anti-inflammatory, antifungal, antibiotic, local anesthetic and a water resistant protective base to keep the area coated so it can heal.

I found you need them ALL to get the job done, so check with your Doc to see if you've had these or need to try them...
IF you've tried topicals, you may need to consider the suppository or infused ointment ....JMO.

The Ring of Fire ain't NO fun
and you can check this search of some of my prior posts as well for a few more "comments " !!!
search.php?st=0&sk=t&sd=d&sr=posts&keywords=proctosone&author_id=1025

Best wishes
CRguy

[Annemiek]

While on folfox, I had the same stuff, although I have a colostomy, as soon the diarhea started, my stoma would start to bleed, and the ring around it, exposed to the elements would just start to dissolve.. I used tablets to thicken it immediately and indeed a thorough clean after ever bowel movement.
We called it radio active poop, it almost lights up in e dark doesn't it! Indeed it seems to be stomach acid.
I would take immodium as the oth say, apart from the ring of fire, it tires you out very quickly and you can't drink enough to keep up dehydration.
Just wanted to say sorry you have to go through this and hope you get it under control pretty quickly!!

Annemiek

[arizona mom]

Thank you all so,so much!!

Yesterday I had a super small, bland diet and I took immodium, keeping my poo to a minimum. I was also able to get a couple good inserts of that prescription foam. It has already gotten so much better!!

I start my third folfiri treatment on Wednesday. At this point it feels like I'm playing a game of Jumangi. I'm going to have to "roll the dice" and see what horrible things result this time...

[KElizabeth]

I also have pain while going. One thing that helped me with the pain after, was witch hazel. I made flushable wipes, and use them when I am having diarrhea to clean up. It really helps. My doctor prescribed lidocaine ointment which helps, but it will sting a bit if you have open wounds.
Personally I keep imodium close by at all times.
~ Kirsten Elizabeth

[AnonSurvivor]

On the positive side, look forward to things getting back to normal after chemo. In the meantime, though, it's not fun. The suggestions above are good. I used to fast for 2-3 days before chemo, which seemed to be the most effective way of dealing with this particular side effect.