APR Surgery

Hi SuzieQ1966

My heart just goes out to you just now as it’s such a difficult time without getting the comfort of being able to see for yourself they are making progress . I think we are starting to see the role relatives play in the recovery process . It must be so hard for him and you sound like a strong support .

I am going to tag in a couple of people who have more experience with this one than me and might be more helpful than me . It does seems to be quite common though but very uncomfortable for the patient .

Ddd213 and process might be able to help you if they are currently around .

How are you coping yourself ? Hoping his bowel wakes up soon .

take care ,

 Court 

Hi Court

Thank you for your response.

I am hanging in there. I'm trying to be strong for him, but it's difficult. If I were with him, I could ask all of the proper questions, and help him with the little things.

Any advice or experiences would be greatly appreciated .

Thanks again

Suey

Hiya

Court tagged me, as my hubby just had low anterior resection for rectal tumor on 5th March. (t3b but stage 4 as had spread to liver..resection in Dec) It's meant to be a 6 night stay, but he was in nearly 3 weeks. First ileus then an infection at the drain site which really knocked him. Had to get a new drain put in (local anaesthesia, not surgically) and have iv antibiotics. Probably would've kept him 2 or 3 days more, but they made a risk assessment to get him home, expecting a wave of coronavirus patients. He's still weak, but come on loads the past 10 days.

First thing I'd say is, my hubby would agree with yours about it being the worst week of his life! (He spent his birthday in there as well, bless him) Ileus is no fun.. That NG tube is vile!

I understand its purpose though, the stomach bile has got to come out that way, if the bowel is asleep. And it relieves the nausea. I asked one nurse about it and she said she's seen everything from 1 to 10 days, all depends on the individual. His was in 5 nights, very uncomfortable elephant trunk! Lots of heartburn after they tried to reposition it! It's really good they're iv feeding your hubby.. in itself a tough procedure, but I've read other people say they weren't even offered! It's good he's getting nutrition.

They'll be keen to get the NG tube out though, obviously the bowel wakes up better with proper food (or at least those Ensure drinks! which my hubby loathed lol) After that came out, then the catheter then the ( first) drain. Once your hubby is able to move around and eat a bit more, things will improve. Then if he can avoid infection (which will be closely monitored) he can hopefully get home! 

Hold onto the fact that the op was in the surgeon's own words a complete success! That's brilliant! It must be so hard, trying to keep his spirits up by phone only...we were 14 days in before they clamped down on visitors and changed it to One Named Visitor for One Hour. I can't imagine no visiting!!! Could you perhaps have a word with the matron? Along the lines of hospital's rapid recovery progam?

There are probably strict guidelines in place now... are you able to Skype or Facetime? What about checking what he needs each day and dropping it off, would they allow that? I really feel for you both. The visitors role is key. Although I will be perfectly frank and say those 14 days were also exhausting for me! ! Back and forth, sometimes twice a day, trying to keep everything afloat. Court's advice about looking after yourself is sound! Take any help offered.. Shopping, meals etc. All from 6 feet of course.. 

Anyway sorry for the long post! My final thought is just one of encouragement. This is a truly tough part of the treatment (made even stranger by these trying covid times!) and you are doing great reminding him to keep it simple, one day at a time. Think how far he's come already.. And concentrate on the success of the op! Slow and steady. 

Much love and big hugs 

Lisa xx 

Oh Lisa thank you so much !!!

He had a CT scan this morning. The surgeon said it looked fine. They could see some gas though.

The NG tube has to stay in for at least a few more days. The surgeon said if she takes it out and he gets nauseus again, they will have to put it back in. He doesn't want to do that because he said that was the wost pain he's experienced in his life. ...ugh

On the way to CT, he said there was nobody around. No patients, visitors,  doctors or nurses. I guess they are preparing for the worst to come in, at any time.

Today is day 8 post op, so here's hoping and praying, that he will make huge strides within the next 2 day.

Thanks so much

Suey xo

Hiya, just checking how you and your hubby are doing? 

I'm guessing he's been back home for awhile now? Hopefully progressing steadily, and you're coping with it all too?

Look after each other 

Xx

Hiya

Yes, hubby came home on the 9th , after 13 very long, boring  days in hospital.

He ended up having the NG Tube for 10 days ugh . 

He is managing faily well. He is having a rough time getting used to his Stoma and the different colostomy bags. His stool is mostly liquid and he has had a few blow outs now. He's very nauseous most of the time.  He has been off the pain meds for a week, and he's not really in much pain. He can sit for a short time and he's getting 1000+ steps in per day. We knew recovery would be tough, but we are now thinking that it will take longer than we originally thought.

One day at a time !

Thanks for checking in 

Hiya

Nice to hear from you, and it's so good that your hubby is home now! (Mine said lockdown at home feels like freedom compared to Ward 4 ) it's excellent he's getting those thousand steps in, moving around really does help. 

Did they send him home with any immodium /loperamide? Taking 1 or 2 before eating has made a difference for my hubby. Less watery output, which in turn makes managing the bag easier.

And is he in contact with the stoma nurses? Ours rang us a few times to check progress and advised changing to a different shape of bag, she sent us new ones. It makes a difference how you trim from the template too, my hub cut the opening a bit too big and then had sore skin (which resolved as soon as he cut more carefully)

He's 6 weeks post op now, and things are finally starting to settle. He had the setback of infection/second drain/antibiotics too, so you guys might be even quicker! Keep going, make a mental note of the progress-which is indeed slower and longer than we expected. And make sure you look after yourself too, carer fatigue is real! 

Good luck and good attitude, odat 

Luv, Lisa 

Hi Lisa

Hubby had a rough day. He hadn't had a BM in 24hrs, but today all hell boke loose...all over the bathroom  floor ..UGH! Thankfully, it wasn't completely liquid, but what a mess. Dear Lord what a smell!! My poor son was in the basement gagging! Hubby told me that the BM came on quickly and it filled the bag in 10 minutes. I think he just needs to give it time and figure out what foods are best suited  for him now.

We have the nurse come to the house 3 times per week, for 2 weeks. Then twice per week for 3-5 week, depending on how he's doing.

I"ve ordered lots of samples from Covatec, Coloplast and Hollister. We should get them all this week. Right now he's using a Hollister, clear, drainable puch with a clip. He doesn't like this bag, so we shall wait and see what the different baags are like.

I'll mention immodium to the nurse tomorrow.

Hubby will be 4 weeks post op this Friday. I'm sure things will start to settle down within the next few weeks. 

Thanks for your reply

Sue

SuzieQ1966

Hi Sue

I've just popped over from the stoma support group as I spotted your post and I'm sorry to hear that hubby had such a bad experience. 

I take it that your hubby's stoma care nurse is unable to visit and see what going on.

When looking at new bags try and find out if the samples the manufacturers send are the large capacity, not all bags have different sizes but it does make a difference.

Apart from the bag he is wearing being clear what else doesn't he like about it.

If you buy Imodium over the counter the maximum dose is 12 per day but if prescribed by your GP this can be increased to 16 per day, although the GP can prescribe more if necessary for a short time, I would suggest that you ask GP to make it a repeat prescription.

I'm a great believer in keeping a food diary to record everything eaten and fluids taken then recording the output consistency noting if a particular food causes something like excess smell or wind. The easiest way I found is to download food diary from the app store onto a mobile phone.

Over in the Ileostomy, colostomy, urostomy and any other stoma support Group I specialise in solution finding to stoma problems and if you need my help in any way or just need to ask me questions on any aspect of stoma management and living with a stoma please don't hesitate to give me a shout out, I'm only a click away. 

Ian

CC

Hi Ian

Thanks for dropping in. I'm also a member of the Stoma support group. Lots of reading, and great info.

Hubby has his good days and bad days. Some days he will fill his bag in half hour, other days he won't do anything for 24hrs.

He does not like the clear, see through bags...although he has 3 boxes of the Hollister drainable, clear bags.

Here in Canada, his nurse has come to check on him 3 x a week, but she will go to twice a week, starting this Monday for another 3 weeks. 

We are trying to figure out what he can eat and what he can't. Pea Soup wasn't a good idea haha

Hubby has so many different bags from different companies. He will have to try most of them and then figure out which one he prefers. 

4 weeks today post Op. This is all a brand new experience for the both of us. We have both come to the conclusion, that this is going to be a long process. Lots to figure out yet.

Thanks for your advice, and if he has any issues, I'll be sure to reach out to you.

Sue