Life with bowel cancer

John60

Reversal decision

Hello
I am new to this blog. I had a LAR November 2017 and I learnt today that my leak has repaired itself. I will probably be offered a reversal by my surgeon next week but I am not sure I should go for it. I am worried about the impact on my quality of life post reversal. I am 57 and I had a low tumour. I only have 3 or 4cm of rectum left. I do not want to be stuck at home for months or more. Can you please let me know if you think it was the right thing to do for you to go for a reversal? How often do you have "accidents"? can you travel by plane or is it too risky? Is your life better or worst without a stoma?
thank you for any comments/advice.

John60

Terrish

Hi @John60 - if you want someone to know you have tagged them (i.e. named them) in a post, just use the @ and we get a message to say we have been tagged. Otherwise I don't always know you have replied as I am lazy now in that I don't come on here very often, because I am 3 years down the line, 2 years on from my reversal, I don't need to ask questions so much and it is easy to forget that other people need some positive stories. Payback time :)

I went back to work recently after years of being at home. I worked at a major department store over xmas where I was on my feet all day and had no easy access to a loo - it was fine. I don't know if I have been particularly lucky, and of course it is easy to forget the first few months which were trickier than perhaps I care to recall*, but I have honestly never regretted for a second having a reversal. Quite the opposite - every time I look at my shrinking ileostomy scar, I am just so grateful for having got shot of the bloody thing :)

*When I say the first few months were trickier, I just mean that I would need to go maybe every few hours, not urgently, but by around a month in, I would just make a point of going before I went somewhere. I walked the dogs and rode my horse, and although a couple of times I planned the horse ride to go via a friend's stables so I could get off and use their loo, I didn't need to, it was more peace of mind.

I would say I used to go around 12 times a day, rarely was it urgent, and now it's down to 3-4.

I have mild IBS and staying gluten low (I can't quite manage gluten free as I love bread and cake too much!) I can manage my bowels quite easily. Quite often I go just because I am in the loo anyway, so I might as well. If I eat loads of gluten I pay for it by needing more frequent trips but again I have had no accidents and no embarrassing moments.

There are irritating parts - sometimes you can't quite empty, so you end up with an annoying feeling of wanting to keep pushing. I now try reverse psychology on my bowels - I pull up strongly to counteract the feeling of still wanting to go and that helps a lot.

I also used to use a home kit for colonic irrigation - I would use it if I wanted to go somewhere (hiking for 2 days perhaps) and you basically clear out your entire system and don't need to go for 48 hours. I think this is now sometimes recommended for people who have continuing issues with their bowels post reversal. There was someone on here who advocated it very strongly but it seemed to be frowned upon by some health professionals. For me it saved the day - I went camping in my horse lorry, used the system the morning I left, and didn't need to go for the whole trip. I can always send you a private message at a later date if that is something you were ever interested in - bit too graphic perhaps for the forum :)

Terrish

ps - just been on the Pelican site - didn't know about it! I am not sure about some of the questions - I have looked through my notes and I don't know if I had a total or partial mesorectal incision. I didn't have radiotherapy though.

Either way my score is between 23 and 26 which is low, but the score for high is 30 so 26 must be close to the border? The tumour was at 9cm and I know the surgeon said there wasn't a lot of my rectum left after - much depends on how much of the bowel they need to remove once they have cut the lymph system and blood supply to the area. I know it is possible to feel the staples during a routine examination (I think my surgeon is obsessed with his handiwork!).

I was given the usual dire warnings from my surgeon about LARS (which I think they have to do) but I was willing to put up with the risk. As I saw it, I could always have my stoma back although I think they don't like doing that.

John60

Hi@Terrish, Thanks a lot for your long reply. The fact that your tumour was at 9cm explains why you have had such good results. The critical height is 6cm or more to have good results. Mine was at 5cm unfortunately which implies not so good results according to the Pelican tool. My surgeon did not mention LARS to me. I discovered it through the Macmillan blog! How can we communicate via private messages?

John60

Hi@Tracey, Thank you for your reply. Geoff is very lucky to have such a supporting wife!
Would you mind explaining why your life was a lot simpler with a stoma? You/Geoff are the only people who have responded with LARS. I am keen to understand the impact of LARS on Geoff's life. Is he in more discomfort now than when he had a stoma? Is he able to do more things now then he had a stoma ? Can he go out for walks/shopping/restaurants or is he stuck to the toilets now ? I am concerned that my quality of life and ability to get out of the house (and travel by plane) would be severely diminish post reversal. Do you know how much rectum Geoff has left?
thank you for your time in answering my questions Tracey

Kareno62

Hi @John60 . You need to use Tracey's user name to tag her e.g. @sweetcheeks and as you type the name in it will appear in a drop down for you to select :x:

John60

Thank you Karen :) I am not very good with IT. My employees used to make fun of me for that.

John60

Hi @sweetcheeks, Thank you for your reply. Geoff is very lucky to have such a supporting wife!
Would you mind explaining why your life was a lot simpler with a stoma? You/Geoff are the only people who have responded with LARS. I am keen to understand the impact of LARS on Geoff's life. Is he in more discomfort now than when he had a stoma? Is he able to do more things now then when he had a stoma ? Can he go out for walks/shopping/restaurants or is he stuck to the toilets ? I am concerned that my quality of life and ability to get out of the house (and travel by plane) would be severely diminish post reversal. Do you know how much rectum Geoff has left?
thank you for your time in answering my questions Tracey

sweetcheeks

Hi @John60 , as far as we are aware Geoff’s had his rectum removed, so has no collection area ( surgeons description). Geoff never felt normal with a stoma , it was a constant reminder of him being ill,
And for Geoff tve reversal could not come soon enough,
And tve first 6 weeks or so following reversal were bloody hard , but manageable with pull up pants and planning, but yes we do still have days out are going abroad in June which Geoff will take loperamide before flying,
Geoff cycles, walks lots and has returned to work two days a week ,he had one day at work which was hard going but that was just unfortunate, what Geoff eats has a huge impact and he has cut down on big meals , just because he can’t face them,
You are welcome to talk to Geoff , but I warn you , he would of walked over hot coals to get rid of his stoma , as a wife it’s easifor me to say it was easier with his bag. Purely because we didn’t have to be looking for the loo so much!! And I didn’t have to live with it ,
Sorry if this long winded,
Apparently it’s still very early days for Geoff and they would hope it would reduce to around 4 movements a day , who knows 😳
Tracey :x::x:

sweetcheeks

@Terrish , interesting reading thankyou for sharing, Geoff’s the same even on a hard day has never regret reversal
@John60 , just found the pelican site and Geoff’s score was 23 !
:x::x:

Terrish

@sweetcheeks - my salvation came in the form of eggs!

On a ski trip 9 months after my reversal, I decided to only have a light breakfast in the hotel so I wasn't spending half the day toilet hunting on a mountain, and as they had no porridge (shock horror!) I chose an omelette.

What a surprise - I didn't then go all day! I kept up the egg breakfast and cut down on bread and other gluten products since that week, and have found that with two scrambled eggs for breakfast I am effectively 'egg-bound' and almost have a problem with not going enough some days.

Worth a try?

sweetcheeks

@Terrish definitely worth a try , Geoff is absolutely obsessed about being bunged , it’s truly hard work trying to talk to him about his diet and trying new things, but will mention 😊
Tracey :x:

John60

@sweetcheeks:
Thank you for your message last night. A score of 23 is really a good one and should imply minor problems for Geoff. Mine is 29 or 30 which implies major problems...

I guess that his tumour was above 6cm from the anus then. Correct?

I would welcome a chat with him if possible to help me understand his new life.

John

John60

@"Dan-888":
I have reread your post again and the key difference with me is that you probably have a large part of your rectum still given the height of your tumour. Most people who have good results seem to have a reasonable amount of storage left. I would love to hear from someone who has only 3cm left like me and who has good results. michael clearly made the decision that it was not going to be enough and went for a permanent colostomy.
I wish my surgeon was more open about the problems I am likely to face instead of saying "we won't know until you have tried"!
John

sweetcheeks

Hi @John60 , Geoff’s was 8 cm in ,
3cm large ,
I’ll pm you Geoff’s number,
Tracey :x:

Dan-888

I'm so sorry for having missed your earlier comments, @John60 . I hardly visit the forum on a regular basis. But I always do when I get tagged, even if not immediately!

I fully understand your apprehension. Particularly as you do sound as if you have researched this a lot more then I ever did. And most certainly know more!

I don't think where the tumour is, necessarily dictates how much rectal colon or rectum is left as the surgeon aims to remove from either side of the tumour, sufficient to be sure of a clear margin with no cancerous cells found at the cut ends in the lab.
There's about 12 cm of rectum and my surgeon said he'd removed about half, so you could be right that I have 6 cm left, or it could be less. I did not ask.

It was only at my 5th and last colonoscopy conducted by another consultant surgeon whom I knew and was comfortable to ask about some sort of sac I could see which had been formed with the cut end of my descending colon, which I had noticed once before.
He explained that it was formed at the join with the remainder of my rectum to provide some expanded storage similar to how my sigmoid colon used to provide.

That got me trying to find out more about such pouches.
They seem to be used most for those who had none or next to no rectum left so I felt that I had been given a special treatment.

But the point is that there seems to be solutions to issues such as little or no rectum left after surgery.
You should push your medical team on your major concerns over this. And ask them to support you in asking your surgeon about the appropriateness of such a sac or pouch for your own case.

I had a formidable lead Clinical Nurse Specialist who almost bullied my surgeon during all of my consultations and was clearly looking out for my interests. I also felt that my surgeon also put in extra effort and care for me which I did not expect and was immensely grateful for. There was only one oncological consultant who I found issue with but all of the rest of my medical team were most definitely the "A Team" for me!

When I went in for my first operation to remove the tumour and had my stoma formed, there were 2 other men on my ward who were quite vocal and outgoing.
They were both in to have their reversal, reversed. Although both complained about how long they had to wait, albeit accepting that theirs was not a priority compared to those who are needed cancerous tumours removed.
Clearly, even if you did go for a reversal and it did not suit you, you have the potential to have a colostomy or ileostomy operation again.

As to your other questions about how much you can do; travel, etc.
With a will, there will always be a way, IMHO.

Much depends on what your occupation is. Mine is rescuing high profile projects or programmes, where you can just imagine is pretty intense and full on. And it really won't do if I'd literally "crapped in my pants"!
8)
I was really unsure if I would ever get back into full-on assignments again.
But I did.
Of course I had accidents. And had to learn by pure trial and error, which foods completely messed up my digestive system. And learnt to adapt and control that, in order that I could once again enjoy living and participate fully in society again.

I found @Terrish comments a particularly strong echo! But the concept of colonic irrigation is a really interesting option instead of taking loperamide which bungs you up for a couple of days trekking. I'd only tried refrained from eating and waited to clear out my system instead when I knew I would be out and about for a few days, such as trekking in Peru.
Well, not being skinny I do have plenty of stored energy to use up! ;)

p/s After completing that LARS survey I realised that I had most of the symptoms listed. But I probably don't suffer from any in any extreme manner, so it's all relative.

John60

Hi@Dan-888, I really enjoyed reading your post last night. I think that you have been very lucky with your medical team. My surgeon refused to give me a J pouch because he claimed that they did not work long term. I suspect now that he did not know how to do them and did not dare tell me...it is too late to do it now unfortunately. I spoke to michael today on the phone and he decided to go for the permanent colostomy because he did not want to be incontinent. he is very happy with his choice. My job is Mergers & Acquistions and it is full on too. However I need to travel to carry on and this is not possible with an ileostomy or LARS; so it will have to come to end soon which is very frustrating. If I had been offered a permanent stoma and accepted it I could be back at work by now. Tomorrow I am seeing another surgeon to get another opinion on the reversal and to ask him if I could still go for a colostomy now. I have my first CT scan post operation next week. this will be stressful. how did you manage this?
I am impressed that you have regained enough control to fly to Peru and do treks!!! I envy you Dan. Are you part of the group that meet up with Trish from time to time?
Cheers
John

michael

@John60

Great to discuss today.

Suggested questions for surgeon tomorrow:

1. What is the probability of at least 12 months' incontinence post reversal? (don't be fobbed off with discussions about diets).

2. If necessary, what possibility of a Hartmann's thereafter? When would be minimum time? Why 12 months?

3. Why is it not possible to do permanent colostomy at same time as reversal, and what's the recovery time? Should be around 20-30 days.

4. What was the histology report on the surgery (ie am I still stage 2?).

You need answers before a decision is made on reversal.

Good luck. Lets us know what they say.

Michael

John60

@michael,
Great to talk indeed today. thank you very much for proposing questions which are very good!
I will ask them for sure and will let you know.
I am very grateful Michael!
John

John60

@michael,
I saw a brilliant surgeon last week. I wish I had been operated by him. He would have created an additional storage space in my rectum...although he would have taken my entire rectum out to reduce risks of local recurrence. He put me in touch with a nurse at St Mark's that I will see next week to be evaluated. She told me that 2 or 3 cm of rectum was a lot compared to some of her patients! He also recommended a contrast enema MRI to confirm the findings of the gastrogaffin procedure and give him a better picture of my rectum and the potential outcome of the reversal.
He advised me against a permanent colostomy at this stage saying it was a very big operation with many risks (bladder, impotence,...). He said that I would have to wait 6 to 12 months post reversal to ask for a permanent stoma. He also feels that I have good chances of getting a reasonable outcome post reversal with Biofeedback. He put the risks of incontinence for stools at very small but higher for liquids. I will hopefully know more after being assessed by this nurse at St Mark's on Wednesday.
But first I have to have a clean CT scan 6 months post operation...
thank you again for your questions.
I was stage 2 post surgery.

michael

Well done - you've made great progress with the information.

Keep pressing for the correct answers...maybe you will be able to avoid the bag after all!

Keep me informed.

Good luck.
Michael