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 Post subject: Re: Nearly there....
PostPosted: Fri Jul 20, 2018 5:42 pm 
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I had a PICC line a few years ago (nutrition, not cancer*). I smiled when I read that you were having yours out. I then read that you could have your colostomy reversed, and nearly shed a tear, as I have also been through that (20 years ago). Congrats on the progress Matey, and It's so good that you're willing to share details on what can be such intimate problems.

*I was being 'fed' by my PICC line for a while, I was pretty out of it. My wife was sat by me one day in hospital as I was being 'fed', and asked what it was like. Bearing in mind, I was in and out of consciousness, in a very bad way, and facing an uncertain future (at the time, being measured in days) I managed to reply that it tasted like crap, before promptly nodding off. Due to my condition, she never thought twice, and believed me.

I don't remember any of this, and the story was told to me some time after the event by my missus. I laughed out loud, and asked her how the hell would I taste something that was being fed directly into my heart via a tube in my arm.

There was some indignation.

To this day, she will tell you that even at my worst, I can still be a complete C***.


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 Post subject: Re:
PostPosted: Fri Jul 20, 2018 9:51 pm 
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Joined: Tue Sep 01, 2009 12:28 pm
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Fingers crossed for you mate.


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 Post subject: Re:
PostPosted: Sat Apr 20, 2019 9:34 am 
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Location: Newbury, Berkshire
Update:
Some of you may be aware that I had Surgery November 2017 for Bowel Cancer, followed by 7 of months of Chemotherapy. I have since gone back to work Part-Time, and I am currently able to cycle in the manner that does it for me :D .

I do feel however that the Stoma in my belly, and attached Colostomy Bag is unfinished business. I requested that I have a Reversal Operation to re-join the Bowel, and that has now been scheduled for Monday 3rd June.

The surgeon will only know what he is dealing with when he goes in, as they call it. He could be faced with problems caused by the Chemotherapy. He told me that the walls of the Bowel can become fused together as the Chemo also destroys healthy cells while attacking the Cancer cells. He will need to separate enough Bowel to work with, which is a tricky process. If he can then join the two ends of bowel together, he may not be happy with the sealing of the join - apparently it is pressure tested. I will then need to have a Loop Ileostomy. This is where a loop of Small Intestines is pulled through and stitched to the Abdomen wall. A slit is cut into the protruding loop, and the downstream end that goes to the Large Intestines is temporarily tied off. This means that my food waste will avoid the Bowel while it is allowed to heal.

So if I wake up with another bag hanging on the other side of my belly, I will know that I will need 2nd operation sometime later to complete the Reversal. Apparently that operation is very straightforward compared to open Abdominal Surgery. If this is the case, my diet will need to be altered to accommodate the Bowel bypass. I haven’t looked into it much, but it will consist of no insoluble fibre as the Bowel is where this is broken down. I’ll need more water as nothing will be absorbed back into the body in the final Bowel section. Nutrition is more important as some nutrients are absorbed in the final Bowel section. Anyway, this is only a possibility, but the worse scenario is that the join still may not be possible at all, and the Reversal will be abandoned. If I wake up with a bag on the same side, then I have to deal with a Colostomy Bag for the rest of my life :cry: .

Anyway, I saw the Surgeon 2 weeks ago, and he has explained all of the risks. There is a 3% Mortality Rate for Laparoscopic Hartmann Procedure Reversal. Then there is a 10% risk of Anastomotic Leak, but I’m not sure if this percentage is when I am still in Theatre, resulting in the Loop Ileostomy, or whether 10% of them leak after being sewn up again, which apparently is life threatening. Then there are all the other “normal” risks associated with Surgery on a 60 year old bloke.

Regardless of the risk and failure percentages, I have signed the Consent Form..... so it is on!

Pip


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 Post subject: Re:
PostPosted: Sat Apr 20, 2019 9:47 am 
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Wishing you all the very best Pip :)


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 Post subject: Re:
PostPosted: Sat Apr 20, 2019 10:31 am 
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Joined: Tue May 23, 2017 2:29 pm
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Fair play to you pip for sharing your story thank you, and congratulations for coming out the other side.


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 Post subject: Re: Nearly there....
PostPosted: Sat Apr 20, 2019 12:09 pm 
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Hey Pip, epic news! So glad you're doing well.

I don't think I've ever posted about this online, anywhere (other than above), so here goes!

Living with a colostomy is hard, but not the worst thing in the world, as I'm sure you're now fully aware. The reversal is in itself not trouble free, but better than a bag. I've lived with mine for over 20 years now, so if you need any advice, or want to chat about it, just ask.

I don't know how much large intestine you have left - I had a total colectomy due to ulcerative colitis. Mine was all performed open, rather than keyhole - the risks of keyhole are far lower, so that's some good news!

pipmeister wrote:
my diet will need to be altered to accommodate the Bowel bypass. I haven’t looked into it much, but it will consist of no insoluble fibre as the Bowel is where this is broken down. I’ll need more water as nothing will be absorbed back into the body in the final Bowel section. Nutrition is more important as some nutrients are absorbed in the final Bowel section.


There is some good news here, IMO. You can ignore everything you've been told and eat whatever the hell you want! Nutrition isn't an issue; nothing of note is absorbed in the lower intestine except fluids. Equally, you can eat as much or little insoluble fibre as you want, but the more you eat, the more you'll be visiting the little boys room. Protein is your friend here. Yes, you will need to drink a bit more, and that leads to more toilet visits during the day as well. There are drugs you can take to 'slow things down'.

I was taken into hospital nearly 10 years ago due to complications, mainly adhesion's and scar tissue (that's when I had my PiCC line). But again, mine was open surgery, and likely caused by that.

Whilst i suspect no-one that meets you is aware of your bag, I guess you are. after reversal, my confidence soared, not least due to not having to deal with it.

Best of luck. I'll have my fingers crossed for you on the 3rd.

:D :D :D


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 Post subject: Re: Nearly there....
PostPosted: Sat Apr 20, 2019 4:20 pm 
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Joined: Thu Apr 30, 2009 9:47 pm
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Location: Newbury, Berkshire
Thank you Martin and Timoth.


My_Teenage_Self wrote:
I don't know how much large intestine you have left - I had a total colectomy due to ulcerative colitis.

Thank you for your helpful reply, which is much appreciated. I had a Colonoscopy and Sigmoidoscopy at the end of 2018, and there is 17cm of Rectal Stump that that end, but I don’t know how much Bowel I have from the Stoma hole to the small Intestines. The Emergency Hartmann’s that I had in November 2017 was open surgery, and the Reversal will also be open.

The Surgeon told me that I will be “feeling a bit rough for a while” after surgery, and I do know what that is like. My Surgery had some complications, which delayed the commencing of Chemotherapy. Crickey, now that was a bloody low point that lasted for weeks. If I have to endure something like that again….. well, it will hard work, but worth it to get rid of this bag.

I’m pleased to hear what you said regarding eating. The Stoma Nurse who gave me that information didn’t seem to be very clued up on diet and nutrition :roll: .

It is useful to read someone elses view on this who has had considerable experience, so I may ask you something at some point by Private Message.

I’ve have a Pre-operative Assessment on Wednesday 15th May to look forward to. I’ve already had one back in February, but that will have expired before the Surgery is due.

Pip


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 Post subject: Re: Nearly there....
PostPosted: Sat Apr 20, 2019 6:15 pm 
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pipmeister wrote:

I’m pleased to hear what you said regarding eating. The Stoma Nurse who gave me that information didn’t seem to be very clued up on diet and nutrition :roll: .

It is useful to read someone elses view on this who has had considerable experience, so I may ask you something at some point by Private Message.



I had an NHS dietitian tell me that I should ONLY be eating fibre. And every other bit of crap advice you can imagine. Honestly, if you have the reversal done, your body will quickly tell you waht does & doesn't work.

And you're more than welcome to PM me whenever you wish.

Best wishes matey.


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 Post subject: Re: Nearly there....
PostPosted: Sat Apr 20, 2019 6:49 pm 
retrobike rider / Gold Trader
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Joined: Thu May 07, 2009 6:42 am
Posts: 2088
Location: Edge of the Wold
Just to second My_Teenage_Self regarding eating, I’ve had an Ileostomy since 1992 (loop), and permanent since 1995/6 - odd that I can’t remember the specific year.

Things I’ve learnt to be careful with (and most can be solved be chewing more before swallowing).

Nuts, if not chewed properly, the bits can get caught under the base plate of the bag - think small pebble in your shoe.

Cabbage, if I have too much, seems to cause a temporary blockage on occasion no matter how much I chew.

And keep a check on hydration levels, especially if you pick up a sickness/diarrhoea bug - the reduced ability to absorb fluid from your large intestine (I have no large intestine) can lead to serious dehydration levels.

Looking more positively, I’ve eaten anything I wanted to, and done anything I wanted to over the last 20plus years on or off the bike.


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 Post subject: Re: Nearly there....
PostPosted: Sat Apr 20, 2019 8:11 pm 
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Location: New Forest
YAY! We're forming the Gutless collective!

Joking aside, It's a shame these conditions are so 'invisible' as they're genuinely hell to live with. I have a friend with a birth deformity (the lower half of his right leg never formed properly, no ankle, no muscle, V. weak knee) and he's adamant he'd rather have his issues than mine.


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