General discussion

JAMESC.

stoma bag-reversal after effects

Hello to all of you from me and my partner DES -we have not been on the community forum for quite a while, during which time Des has had a stoma bag fitted and now reversed the procedure only last week- although things went to plan-he is experiencing heavy loose bowel movements constantly and it is causing him and I deep distress-clothing and bedding being soiled-can anyone who has been through a stoma reversal give advice as to what foods to EAT and AVOID-all he has been told is to eat bananas, plain salted crisps, jelly babies, mashed potatoes and marshmallows-any advice or guidance you can give will be most welcome. Des and I know how lucky he has been its been a long hard journey full of tears, worry, hope and prayer. In another hour of need we turn to you
KIND REGARDS,
DES AND JAMES.

chris61

Hi James,
Good to hear that Des’s reversal has gone ahead. Although I’ve no personal experience of this, there are many others here who have. If you search ‘stoma reversal’ (in the box with the magnifying glass) you will see other posts relating to this subject.

Loperamide is a standard drug widely used by patients to control diarrhoea but it can take a little while to get the balance right. It sounds like it is still early days and it can take a while for the bowel to settle down again. The best advice I would offer is to speak with the team at the hospital and discuss the situation. It may be best to keep to a low residue diet to start with and introduce other foods slowly to judge tolerances. Little and often is a good idea. Again, press your team for more information on diet options. There is also an excellent guide to diet on the website.
www.bowelcanceruk.org.uk/about-bowel-cancer/our-publications/
I hope everything settles down soon. Best wishes.

Lizalou

Hi @JAMESC..

I'm so sorry that Des is struggling. As Chris says, is he using loperimide? And have you kept a food diary? Do ask the specialist nurse for help and remember to avoid dehydration.

I expect he will find that things settle down as the body readjusts, but don't think that these miseries have to be accepted long term.

Best wishes to you both

lujabuck

Hi @JAMESC.. I have just just had a temporary stoma done and i am already concerned about this side of reversal. My stoma nurse assured me that though ill never be normal through diet andmeds it can be managed. So please keep asking your team.....and I'm sure others on here will have lotsof advice. (I'll be listening too!)

JAMESC.

Thanks for getting in touch- it has been just over a week since my partner Des had the reversal procedure and had to have part of his colon removed at the same time.
He has been encountering severe loose bowels and sore rectal pain, which caused him to cry last night-he is a fighter but at 75 all of this including his unexpected heart attack is wearing him down-he cant venture far from access to a toilet and his bum cheeks are a bit swollen and red-it is sore sometimes when he walks.
He could not wait to have the reversal done but he fears he may have made a mistake-he has been told what he is experiencing now might last for some weeks or indeed several months-there was no such advice given with "lead" in talks before the reversal.
He has a very limited diet and must watch his blood prressure and lowalt levels- up to now he has received great health care -but this reversal is proving to be a great challenge for him and little help or practical advice has been shown to him-but we must keep ploughing on -and hope that soon things will fall in his favour-he has beenthrough such a lot recently the past 2 years have at times tested our relationship but we as we have been together for 40 years-so its worth preserving what we have!
kind regards,
JAMES AND DES.

abergirl

Dear @JAMESC... I really feel for you both. My hubby is also 75. He had his reversal last May....and he had a real switchback ride bowels wise. Many accidents..copious use of Loperamide and low residue diet. Now..... loads better.... has rejoined his choir..social group..been to football.....unimaginable last year. Things are still not perfect but are manageable.
Later today he starts the ghastly Moviprep for his followup colonoscopy tomorrow so we have the jitters !
We had advice from the Continence nurses at the hospital...the colorectal nurse specialist referred us last Autumn. Don't be afraid to ask his colorectal nurse for help...buy loads of pull up pants and pads and bed protectors....Dry nites childrens bed protectors are great. I am really hoping things settle down for you soon. Big hugs for you both. :x::x:

bogongbelle

Hi @JAMESC..! I had my reversal 18 months ago and have pretty much struggled ever since, with an uncooperative bowel. However, I recently spoke with a great stoma nurse, who gave some fantastic advice. First of all, get onto Codeine Phosphate. I take a 30mg tablet in the morning and it really slows things down. This can be taken 4 times a day, if necessary. Next, if nights are a problem, get Des to eat a slice of sponge cake or piece of white bread before bed. These absorb fluids and also help slow things down. Another thing to try is grated apple that’s been allowed to brown, or brown banana. I don’t know what the science is behind these last 2, but the apple helped me ( couldn’t face brown bananas!). Best of luck to both of you, but it’s definitely early days and you have to experiment with foods etc until you find those that suit your new “normal “. :x::x::x:

JAMESC.

Thanks your input is very much appreciated and most welcome-hope you are as well as you can be-and if I had a glass in my hand -DES and I would propose a toast to you and for you-may 2019 be your turn around year-best wishes to you and yours

kind regards,

DES AND JAMES

mem

Hi @JAMESC... and Des.
You’ve had some fantastic advice above but would just suggest that Des talks with a specialist nurse/GP prior to starting any Bowel medication. It is still very early days for Des and I was advised, in the early days, to try and let the bowels settle ‘naturally’ where possible (not always easy, I know). If you start with medication now the bowels won’t know what their new natural will be and obviously Des will still be settling from disrupted bits and pieces which make for grumpy, post-op bowels. I am now nearly 4 years post reversal (rectal tumour) and yes, I still have the odd ups and downs but all in all it’s steady away. I do try to stay away from bowel meds unless needs really must as I end up robbing Peter to pay Paul. Loperamide to thicken and then laxative to loosen when the loperamide has worked too well! I then struggle to come off them. We are all different and Des will find his new normal (which may be aided with meds) but as with everything it will take time.
Lots of love and luck to you both :x::x:

JAMESC.

Thanks for your most welcome reply all you have said has been noted and is much appreciated-hope you are doing well and all best wishes to you and yours.
kind regards,
DES and JAMES.

Dick

Hi James and Des
Sending best wishes to you. I am now about 5 years since my reversal - after time, you will find that things will (sort of) settle a little, but it varies so much from person to person, especially with regard to where the tumour was. This is why there is no straight answer.

I would agree with Mem, to try to stay off the loperamide until you have spoken with a medic - it is important to let things settle.

Like others have said, use pads - and even extra inco-sheets with them in your pants initially. You can get adult size "inco-pants", but they are quite expensive. I would say that wearing pants at night is better than loose trouser bottoms, as it just keeps everything in place. I also suggest you use an absorbant under sheet to sleep on.........sorry if this is all a bit too much detail!

Make sure you try to have sufficient fluid intake - it's important to stay hydrated, especially with being a little older and in regard the other health problems, like the heart.

Please don't think I'm preaching to you, but don't be afraid to speak to your GP, and perhaps write things down to remember what to ask.

I hope this as been a lttle help.......sending you both very best wishes again. Dick :x:

Kareno62

Hi @JAMESC.. I’m attaching the links to start with as I’ve just lost my last post!
community.macmillan.org.uk/...h-the-grizzly-bear?Page=0#1248488

bowelcancerorguk.s3.amazonaws.com/...g_Bowel_Control_A5_24pp_AW_v3.pdf

bowelcancerorguk.s3.amazonaws.com/...ions/Eating-Well-booklet-V8.0.pdf

The first is from a guy on the Macmillan board who struggled initially then wrote this post as things started to improve.
The 2nd booklet has a good description of the sphincter exercises that Des should be doing to help control leakage.
The 3rd describes the low residue diet which is recommended Initially as it’s easy to digest food that won’t aggravate the (sulking) Bowel.

My surgeon told me that things would never go back to how they were but I would get used to a new normal. I take loperamide before breakfast and tea and he’s said I may have to do that for life but it’s fine. The stoma nurses are still happy to support you both so give them a ring if you’re struggling.
Sore bottom? Oh yes I know why babies cry now as I’ve been close myself! I’ve yet to find a really soft toilet roll and these with aloe Vera and stuff seemed to just disintegrate. When things gets really sore I resort to those large dry patient wipes like they give you in hospital - you can find them on the internet under Conti dry patient wipes- but they are not flushable so I put them in a poo bag in the bin. Finish with a wet wipe, let the bottom dry then apply sudocream or something similar.
Things will get better but it’s so disheartening when it’s the last hurdle of the journey however you two sound to be a formidable team and I’m sure things will improve in the future
Take care
Karen :x:

Dan-888

It's still very, very early days as has been mentioned already, @JAMESC... & Des.
My ileostomy reversal was the last aspect of all my 2 years of treatments, 6 years ago, which caused me the most concern.
But with renewed patience {and gritted teeth!} I got very single minded in my focus on my dietary management; 2 steps forward, 1 step back for a few months.

I had the steady Step-One of very plain rice porridge, which did not cause any upset at all, to revert back to after every Yellow-Vest rebellion to a new dietary addition.
I had to be patient to stick with adding just one new dietary ingredient at a time, for a day or two, to be sure it caused no issue, before adding another.

After any accidents, I would go back to step-one, but rather than avoid teh latest new ingredient, I would try the same ones again. As often, it seems like it was just a matter of my bowels getting used to the new ingredient, as it was fine the 2nd or 3rd time I added it in.

Except for chilli and strong spices.
Those took about 5 months. But I got there!
But then, I'm rather fond of my food ...
All my very best to the both of you.
Dan

Dan-888

thank you for your kind note, @JAMESC.. & Des!
So sorry I haven't replied as yet. But I will later on during Chinese New Year.
Dan