Bowel cancer treatment and side effects

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Freya84

Reversal - what do you wish you'd known

After what feels like a very long wait my husband got a call on Friday to say he could have his reversal op next Friday.
What do you wish you had known before your reversal. Any top tips or tricks to help manage in the initial weeks post op. What would you suggest as essentials to have at home for his return? As always thanks in advance :x:

Liz Blakelands

@Freya84. I remember how please I was to get that reversal date. It is never to late to start pelvic floor exercises. The whole of the abdomen muscles will probably be really slack because of original op and stoma. Start doing clenching and relaxing ab muscles and sphincter several times a day.

Dry wipes and barrier cream, unless you have a bidet, avoid using toilet paper other than initial wipe, use warm water with dry wipes. Don't even think of using wet wipes or the 'ring of fire' awaits.

It is back to bland foods, but you can gradually re-introduce one at a time. It is a good idea to keep a food diary then can spot if a particular food causes a problem. Often the food is a problem the first time, but re-introduced a week later it is ok, it is almost like your body needs to learn how to process it again.

With recent reports about the importance of gut flora I think about a week in I would start eating a plain greek yogurt or kefir daily to help reestablish gut flora.

The intestine has to start working again but it has been producing mucus and 'yuck' while diversion in place so some of the output in the first couple of days is very different.

Take your own supply of barrier cream into hospital (the night my bowel starting working again they didn't have any on my ward). You get discharge when your bowel has started to work again so good idea to have some tenor pants for the way home (I didn't need them but felt so much better for wearing them).

Accept that for the first couple of weeks you are not going to move far from a toilet.

I found the first week tough but the joy of waking from the op with normal plumbing resumed. It does seem the younger you are the quicker you recover from the reversal op.

Best wishes for a speedy recovery
Liz :x::x:

Kareno62

Hi @Freya84. I’d just like to add that I found a ‘grab’ bag to be handy in the hospital. Mine had soft toilet paper in it, wipes, cream and spare underwear! When you need to go, you need to go and I was a familiar sight speed walking, buttocks clenched, Sainsburys carrier bag in hand to the hospital toilet! :x:

Mark McC

Hi @Freya84

Great news that the reversal is now scheduled.

Not sure how long your hubby has had the temp stoma for (I had mine for 8 months after a LAR) so hope this help.

Where the stoma is rejoined(reversed), I experienced some discomfort as food passed through until the bruising and swelling settled down.

The lower bowel when the LAR was, has been asleep for a number of months so it takes time to get working. I experienced loose stool, sudden bowel urges(some real some phantom), and crampy pain / aches. Sudocrem was a good barrier cream, as its quite stingy.

Make sure you ask about diet. Keep away from fibre for the first couple of weeks but gradually introduce it. Keep a food n poo diary to see what works and doesn't.

Also ask about drugs, once everyhing has started settling down. I was left struggling for a couple of months without advise, but loperamide and buscopan are absolute musts for me now.

And don't forget the mental / emotional side of things. I was so focused on getting the reversal I totally ignored that there are significant life long changes to adapt to and at some point the whole enormity of what you've been through hits as there is no more safety blanket of next appointment, surgery , chemo. All of a sudden youre trying to cope on your own. Bluespace at MacMillan are really helpful.

Finally, it takes time, and even now 6 months after my reversal I still get frustrated with things.

Good luck.

Freya84

Thanks @Mark McC that's really useful info. He would have had the temp stoma for 9 months. I think what you say about the emotional side is a really valid point. Since he came home from his LAR surgery his focus has been getting through the treatment and getting the reversal done ASAP.
I hope you continue to make good progress as aware they say it takes around a year so to truly settle.

Did you have any favourite low fibre meals??

Freya84

Thanks @Liz Blakelands and @Kareno62 that's really helpful. I'll make sure he has a grab bag and look at some kafir.

Did either of you have favourite low fibre meals? :x:

Mark McC

@Freya84

Glad you found something useful from my post.
As for favourite food, hmmm, stodge is good initially, potato, rice, pasta, but everyone’s plumbing will react differently. The food diary will help, but TBH I could have had the same meal 2 days running and experienced different behaviours, and my appetite was off for a few weeks.

Take care

Quote from @Freya84:
Thanks @Mark McC that's really useful info. He would have had the temp stoma for 9 months. I think what you say about the emotional side is a really valid point. Since he came home from his LAR surgery his focus has been getting through the treatment and getting the reversal done ASAP.
I hope you continue to make good progress as aware they say it takes around a year so to truly settle.

Did you have any favourite low fibre meals??

Amanda Sandham

I seem to have had different advice about diet than most people. I had my reversal 6 weeks ago after 15 months with a loop ileostomy following low anterior resection in December 2020. I had 3 nights in hospital where I was offered clear liquids on the first day following surgery then light meals for the rest of my stay. On discharge I was told to keep to low fibre food until my bowels were moving. After 7 days I resorted to a couple of doses of lactose which worked the same day. After that the advice was to eat whatever I wanted but to keep a food diary. I've eaten everything- we have a mainly vegetarian diet so I've had lots of veggies, beans and pulses and wholemeal bread. I've also go full blast on the spicy stuff and had the odd alcoholic drink. Thankfully, there doesn't appear to be any problems with any of it. I have several visits to the bathroom around tea time but have only had 4 occasions where I've felt things were not under control. It's a new normal; every time I go for a wee, I pass a bit of poo as well and I have to use wipes to make sure I get a good finish(!). The problem days have all been after I have skipped lunch so perhaps I need to keep topped up to make things run smoothly. I met my surgeon yesterday and she admitted that she had been slightly worried about how I would get on as my join is very low. The only discomfort is a tender bit just above my scar which is where there are lots of internal stitches. I was really I'll after my initial operation so was pleased to be on my feet almost immediately. By the time I had the staples out on day 8, I was pretty much back to normal.

Freya84

@Amanda Sandham thank you so much. This forum is great for hearing different perspectives and experiences. I'm pleased to hear you are doing well after reversal.
My husband also has a low join and was quite unwell after LAR so fingers crossed recovery after reversal is a little smoother. All the best :x:

Amanda Sandham

@Freya84 , I was ill for ages after my initial operation despite having very mild symptoms and no illness prior to that. I had prepared myself for a rough time after the reversal so my rapid recovery has been a pleasant surprise.