Bowel cancer treatment and side effects

You can find lots of useful information about bowel cancer treatment on our website. You can also get information and support from our Ask the nurse service.

Hayden12

End ileostomy reversal/home from hospital

I am home now after having a reversal of last year’s operation to remove two cancers of the large colon (sub-total colectomy leaving 10cm of rectum, resulting in an end ileostomy and stoma bag).

Thankfully there were no major complications but I did have bleeding from the rectum for about 3 days which was alarming but did resolve itself. As a consequence I was in hospital a little longer whilst they monitored it - 8 days - but have been home for a week now.

The operation was bigger than I expected.I was without food for four days - I was on a drip instead - with a catheter, stomach drain, and drain from the small colon/rectum join. It feels like its going to take a bit longer to recover this time but maybe I’m forgetting just what it took last year after the first op!

I’m feeling ok, tired, a sore tummy particularly around the groin area (which paracetamol only just takes the edge off) with 3 wound areas - vertical incision as it was open surgery, stoma site and drain site. I’m not moving very far from bed and home yet but eating and sleeping ok. In hospital I was going to the loo frequently, about every two hours day and night time but this has slowed to about 5 - 8 times a day with just once at night. I’ve been constipated for the last week, passing small hard stools but this seems to be changing now into something looser.

I was expecting a lot of diarrhoea and bought loads of incontinence pads and pants in anticipation but haven’t needed them yet - I understand that this can change quickly though so will see how that goes. Fingers crossed!

Food-wise, I kept to a soft and bland diet in hospital but at home I've kept to the low fibre diet I was on before although I’ve added in some things to help with the constipation. I can see that it might be a case of adjusting things by the day. I haven’t taken Loperamide yet as I want to see what my natural pattern turns out to be and for now it’s not a problem.

A wonderful piece of advice from Kareno62 was to have a bathroom grab bag for hospital - wipes, sudocrem, pants, etc - which was so useful. Also the sphincter exercises! Thanks for all your advice and support before the op, it was so helpful and got me through it all. Still feels early days and lovely to be out of hospital and home - onward and upward!

cazza20

Ah glad you are home, sounds like yours was a bit more eventful than mine. I’m 14days post op tomorrow, but I was only in hospital for 2 nights. My only problem has been constipation. I thought I was going to have loose bowels but not constipation! Still it was a lovely feeling waking up and realising my no longer wanted or needed friend wasn’t there any more.
I’m down to bathroom visits a few times in the morning and later on in the evening now, but I have increased the amount of fibre I’m eating and also taking yakult (can’t do any harm). And a few prunes each day.
If I’m honest- I keep expecting all hell to break loose in the bathroom department, so for now I still have all the incontinence prep in my bottom drawer (just in case)
Wishing you a speedy recovery :x::x:
@Hayden12

Hayden12

That’s great that it was a short stay for you without complications. Yes, I’ve been surprised by the constipation too! I just cancelled my stoma supplies account this morning which felt good : )
Wishing you a continued good recovery :x::x:

Liz Blakelands

@Hayden12 so glad you are now back home. I think that you do forget how much impact an op has on you. Take things really easy, just relax and recover :x::x:

kathyS

@Hayden12 all sounds good 😌 great to be out!! I’m a couple of weeks ahead of you, doing very small poos every couple of hours. I’m getting some lower groin pain which I don’t know if it’s the colon (where it was stitched back together) or what. I’m taking painkillers for this. My stoma wound was getting packed daily by the district nurses but every couple of days now. Wishing you a continued good recovery! 💓💓💓🙏🙏🙏

Baxter2

What a lovely post to read @Hayden12! It sounds like you've had a successful surgery and doing really well with your recovery. It's early days so just listen to your body and do what you can.

Sending lots of love and (gentle) hugs!

Karen 💜💙❤️💛💚

Kareno62

Glad to hear that it’s all gone well @Hayden12 :x:

Hayden12

Thank you! :x::x:

Quote from @Liz Blakelands:
@Hayden12 so glad you are now back home. I think that you do forget how much impact an op has on you. Take things really easy, just relax and recover

Hayden12

Thank you! Yes the groin pain is the worst of it at the moment and would like to have a bit more pain relief other than paracetamol but not sure what to take. Also having slightly different stoma wound care - it was packed once in hospital and then just dressed - community nurses coming twice a week to do this. Managed a bit of a walk out yesterday which felt good. Best wishes for your continued recovery too! :x::x:

Quote from @kathyS:
@Hayden12 all sounds good 😌 great to be out!! I’m a couple of weeks ahead of you, doing very small poos every couple of hours. I’m getting some lower groin pain which I don’t know if it’s the colon (where it was stitched back together) or what. I’m taking painkillers for this. My stoma wound was getting packed daily by the district nurses but every couple of days now. Wishing you a continued good recovery! 💓💓💓🙏🙏🙏

Hayden12
Quote from @Baxter2:
What a lovely post to read @Hayden12! It sounds like you've had a successful surgery and doing really well with your recovery. It's early days so just listen to your body and do what you can.

Sending lots of love and (gentle) hugs!

Karen 💜💙❤️💛💚

Thank you for your lovely message! :x::x:

Orchid

@Hayden12 Really encouraging to hear about your experience! I'm hoping to have my end ileostomy reversed this year and haven't really found anyone who's had one so it's great to hear you've successfully had yours reversed! How are you finding your toilet habits now? I had a similar surgery to you, basically a subtotal colectomy, and I'm nervous about what my bowel function will be like post reversal!

Hayden12

Hi @Orchid, nice to hear from you! Yes it's going well 4 months on and I just had my check up with my surgeon today who is happy with my progress. It took a while, a month to 6 weeks for things to start to settle and for me to work out how best to use Loperamide but I'm going about 3 - 4 times a day now, and my surgeon thought this would reduce further over the next months. I still get some urgency but not always and yesterday, for example, went from 10am until 5pm without needing to go so I am able to get out and about a lot more now which is great. I'm eating fairly normally, just a few foods that don't agree with me - peas and leeks! Happy to give any more info to help you make a decision. Obviously everyone is different but if it helps, I was worried about having the operation too but I'm so glad now that I took the chance. :x:

Jomo9

Gosh you have reassured me about what to expect post operation. It would be great if there was more information on the two types of reversal as the end version is much more complicated than the loop version! Am interested in the bathroom grab bag which sounds a great idea. What type of wipes did you have? Were these wet wipes? So what else in terms of etc? Have just dragged out my hospital suitcase to make sure everything is good to go this week! Thanks Jo :x::x:

Hayden12

Hi Jomo9, so glad to be of some reassurance, it sounds like you have really been through the mill. I agree with you, it took me a while to work out that it was going to be quite a bit op compared to the loop version. It's been over a year now (and thankfully and fingers crossed still all clear) so it's a bit hard to remember but I think just wet wipes from Boots. I was in hospital when I couldn't have visitors and still very worried about Covid so I took a lot plus antiseptic wipes so I could clean everything! Sudocrem of course. I found my phone and headphones to be my lifeline, for radio, podcasts, crosswords etc. A notebook.The worst thing I did was take a new reading book which turned out to be so depressing! Another patient advised that she always took an old book in to hospital with her as at lease she knew she would enjoy it. Good advice I thought. You may be able to have visitors now? If so that should make things a bit easier. I had lots of tubes - nose, a drain etc. and I did have a problem with my feet and hands swelling the first couple of days. The loss of blood mentioned in my post was really alarming but settled down eventually. I was a big op but I did recover more quickly than the initial op to remove the cancer so I hope you have a good recovery too. Best wishes for this week :x::x:

Hayden12
Quote from @Jomo9:
Gosh you have reassured me about what to expect post operation. It would be great if there was more information on the two types of reversal as the end version is much more complicated than the loop version! Am interested in the bathroom grab bag which sounds a great idea. What type of wipes did you have? Were these wet wipes? So what else in terms of etc? Have just dragged out my hospital suitcase to make sure everything is good to go this week! Thanks Jo

Hi again - I didn't mean wet wipes! Sorry, I can't remember the name but it was those moist toilet wipes, the gentle ones. Hope that helps :x::x:

Jomo9

@Hayden12 Arrived for my operation and it got cancelled due to no anesthetists. Was a bit frustrating as I arrived at 7am with my last drink at 6.30am. I was mega dehydrated and wasn’t allowed any water until about 2pm when they told me the operation was cancelled. It’s been rescheduled for three weeks time, but it’s so hard to get everything ready physically and mentally - work, home, admin etc, At least I will have time to get some moist toilet wipes! :x::x:

Liz Blakelands

@Jomo9 Oh I can so understand your frustration, getting ready for the op and then getting cancelled after a long wait. Just have to try and put it behind you and do a few more pelvic floor exercises. And hopefully enjoy a bit of sunshine.

I found that using dry wipes with water was better than moist toilet wipes. They made me really sore.
Liz :x::x:

Hayden12

@Jomo9So sorry to hear that, that must have been hard to cope with - so much of the preparation is mental as well as physical so I really feel for you. Good you are able to think of some positives though! Hope it all goes smoothly next time. All the best, :x: