Moving on from bowel cancer

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ndb

Ring of fire

Hi all

I had my reversal carried out just under two weeks ago. The first week was ok but for the last few days I’ve been experiencing a large number of small sloppy bowl movements. This has resulted in me having what feels like a permanent ring of fire. I wondered if anyone had suggestions for dealing with it? The bio feedback nurse I saw suggested eating lots of mash to help thicken up the output and internally applying Hydromol. Externally I’ve been using toilet paper and toilet wipes and after large movements a little shower, but I wondered if I’m missing a trick in terms of ointments?

Norman

Liz Blakelands

Hi @ndb Norman, Welcome to the forum hope you find it useful, supportive and informative. When I had my just had my reversal I found the best thing for me was to wipe once with toilet paper then to wash with water using dry wipes. Then gently drying and then using a barrier cream. Moist toilet wipes gave me a ring of fire.

Hope this helps, I'm sure lots of others forum members with share what worked for them.

All the best
Liz :x::x:

louise28

It will pass @ndb in a few weeks that constant liquid poo does die down..so I cleaned myself thoroughly, often with a shower and used dry wipes as found wet wipes made it worse..I got a few small piles as a result of all the toilet visits and that made it worse so I used piles suppositories...the anusol ones with hydrocortisone and I used metanium for my sore bum (it's actually nappy rash cream but it is a miracle cure for raw scan). If you're in the UK you can buy metanium in any boots. :x::x:

ndb

Thanks Louis and Liz, it’s very reassuring to hear other people say that it will pass, particularly after a rough night. I’ve got a huge stockpile of dry wipes from my stoma supplies so I’ll give those a go.

My girls are a few years past nappies now so unfortunately we’ve not got all the various creams in the house anymore. I shall go and pick up some metanium and try that!

Thank you

louise28

I didn't feel lucky at thr time @ndb but there was a plus to being diagnosed with two kids in nappies!!!

Mark McC

Hi @ndb

I can truly sympathise.

I used sudocrem outside, that’s really soothing, and try to dab rather than rub with paper.

Were you given any diet advice / meds on discharge ? It’s worth speaking to your care team about diet and whether they think loperamide(or other) might help.

Keep a food / poo diary to see if any patterns become obvious. I would avoid too much fibre, spicy food for the first few weeks and keep it bland.

Good luck

ndb

Hi @Mark McC

I wasn’t given any specific dietary advice before I was discharged on this occasion, it felt rather rushed (half the ward staff had called in sick so they were hugely understaffed), beyond “stick with a bland diet for a while”.

For several years I had digestive issues mainly around gluten, which actually obscured the cancer diagnosis and I believe possibly delayed it by at least nine months (not that I’m bitter or anything!) Whilst I had the stoma those issues would go away and I had become used to having gluten as part of my diet. Over the last few days I’ve cut gluten out again and the situation has improved. Of course the issue I have now is that I don’t know if it’s just a case of things settling down or if it was the gluten

I’m seeing the consultant on Monday week and the bio feed back nurse on the Friday so hopefully I’ll get more of a steer from them. If it flares up again I’ll give the digestive disease unit at the hospital a call.

In the mean time it feels like the nappy cream has done the job, fingers crossed.

Mark McC

Yeah @ndb I found the discharge advise pretty lacking in regards mental/emotional, physical, drug and dietary advice. It takes a while for things to settle down post reversal, this is a major surgery you’ve just been through and there’s a lot of swelling and bruising that needs to heal and settle down. Your bowel is also different now, and transit time will be different and the muscles and nerves need to heal and learn how to work again, so I would expect it to take a few weeks to start settling.

Good luck.

Quote from @ndb:
Hi @Mark McC

I wasn’t given any specific dietary advice before I was discharged on this occasion, it felt rather rushed (half the ward staff had called in sick so they were hugely understaffed), beyond “stick with a bland diet for a while”.

For several years I had digestive issues mainly around gluten, which actually obscured the cancer diagnosis and I believe possibly delayed it by at least nine months (not that I’m bitter or anything!) Whilst I had the stoma those issues would go away and I had become used to having gluten as part of my diet. Over the last few days I’ve cut gluten out again and the situation has improved. Of course the issue I have now is that I don’t know if it’s just a case of things settling down or if it was the gluten

I’m seeing the consultant on Monday week and the bio feed back nurse on the Friday so hopefully I’ll get more of a steer from them. If it flares up again I’ll give the digestive disease unit at the hospital a call.

In the mean time it feels like the nappy cream has done the job, fingers crossed.

Amanda Sandham

I'm 4 weeks post reversal and am going through all the same problems as you mention. I'm ok for most of the time but at tea time I have about 2 hours of constant trips to the lav, wind grumbling around in my lower back and, of course, the dreaded ring of fire. As others have said, dry wipes are good and I'm using Sudocrem, another nappy cream, as a barrier. I was told on discharge that one my bowels were moving to eat whatever I want. Keeping a diary helps to see if there are any patterns and I've been surprised that my digestive system is much slower than with the stoma. I'd got used to whatever I ate making its way out within 12 hours. Now sometimes it can be 48 hours. How do I know? It's the sweetcorn test- have a spoonful of sweetcorn with whatever you suspect might be causing a problem ( it doesn't matter how much you chew, it still comes out while). I've been worried about having skinny poo as that was the only symptom I had before diagnosis. I know I've got a shorter rectum now but I thought that the diameter would be the same. I have a meeting with my consultant on 16th so will ask about this .
I also did a bit of internet research and found that lots of people talked about gut bacteria that has been starved while you have a stoma and needs time to replenish. I looked at having probiotics but the majority opinion seems to be that if you're having a balanced diet, things will improve over time. Also there was talk about the triggers between your bowel and brain being interrupted and the need to build or strengthen neural pathways. It's like toilet training a toddler- sometimes they make mistakes but practice makes perfect.
I hope you feel more comfortable this week and continue to improve.

Liz Blakelands

@ndb @Amanda Sandham Like you Amanda I have been reading up about probiotics and gut bacteria. My conclusion eat as varied a diet as you can (obviously only introduce new things slowly and carefully straight after a reversal) and I have keffir with my breakfast. You can get it diary free (I think) but I get the Yeo valley one. Tastes like yogurt but has about 12 different live bacteria in it. If you like the taste of yogurt worth a try.

All the best
Liz :x::x:

ndb

Thanks @Amanda Sandham and @Liz Blakelands

I did find that the stoma really sped things up, I figured it was about 9 hours from eating to exit for me.

Oddly enough I was going to do another post asking for recommendations regarding Keffir. I got a pot of The Collective’s unflavoured one, which tasted just like their normal yoghurt. I do have a local farm shop that sells some that they make from raw milk, but I wondered if it might be too much for me at the moment. I know raw milk has a bad reputation in some circles.

Regarding pro biotics, when I was having my original digestive issues investigated the NHS nutritionist I saw said most products making claims to being pro biotic weren’t worth bothering with but did recommend two. Sod’s law though that I’ve lost the booklet which she wrote them on!

Finally skinny poos! The bio feedback nurse did tell me that the join is smaller and takes time to stretch to allow larger diameter movements. I’m seeing her in two weeks so will ask about that again.