Keeping stoma bag dry in shower

I saw my surgeon on Friday about reversal. He said that it is the sort of op the NHS cancels fairly frequently, with significant waiting times, and therefore a real pain to wait ages and then have it cancelled, especially in the winter when the NHS is overwhelmed. I’m planning to do mine privately on my work policy. However, the surgeon wants to do it at the NHS hospital, with recovery in the private ward rather than in the small private hospital. He says it is a big op and he would not want to do it in the private hospital in case there are issues for which it isn’t equipped. Also, the insurer pays the NHS hospital, so that helps ease the situation for other people. FYI, my surgeon also said the optimum time to do the reversal is 8-12m after the original op, before what was left shrinks too much. I had almost all my colon removed as an emergency, so that might not apply to you. 

Thanks that will be so helpful tomorrow when I chat this over with my chemo consultant re a recommendation as to who to approach to do the reversal

as I lost a bit of my ileum and still have full colon and lower bowel it will be interesting to check out the prognosis for my prospective op

all the best to you Annamouse 

Hi Nickodemus

Interesting about the reversal wait on the NHS.  I want to ask about a reversal in the early autumn which will be 3+ months after my surgery but am mindful of the fact that this will not be classed as urgent cancer treatment so am wondering if I will have to wait.

My surgeon told me that the ileostomy reversal is very simple and would only need an overnight stay in hospital but that there is a 3-4 week recovery period because it feels as if you've been kicked very hard in the stomach.  Of course in my particular case I will not be going  bag-free so all the rear-end problems that others have highlighted won't apply. I will be going on to my colostomy which at the moment is inactive.

If you can get a reversal on your health insurance it may be a good option - let us know what the consultant says.  Every case is different.

I'm wondering how much easier/different it will be for me with a colostomy.  On the one hand I won't be constantly emptying the ileostoomy bag, but then when I do pass a motion (or however it works) presumably I'll have to dash off to the toilet PDQ to change the bag.  My stoma nurse said some people only go once a day, can change the bag and then they're good to go again.  Sounds a bit optimistic to me.

All the best

Camelializ

Everyone seems to get different advice about bag change frequency.

On this forum I've heard everyday, every other day, every three days.

I’ll be in touch 

i used to get daily updates on the forum - but for some reason not fit last couple of weeks! 

Hopefully my codeine raddled brain will remember!  My short ileum 1.3m means I take 8 (eight) loperamide and a codeine pill preceach meal and pre sleep to slow down the bowel transit and allow some proper digestion- so reversal much awaited 

cheers

It sounds as though it might depend on what was left behind in the initial operation. I was told that my reversal will be major surgery, at least a week in hospital, big scar, weeks if not months of recovery, trips to the loo at least 5 times per day once it has settled down, and many more times while it is settling. Hopefully, it will be better than that, but definitely not simple! 

Hi Annamouse

Oh, sounds as if the operation is much more individual than I'd realised. Sorry if I made light of it when you've been told to expect major surgery.

I was hoping to have an ileostomy reversal to bag-free but that did not happen after I needed emergency surgery after my first op.  So I'll have the colostomy bag-for-life. Seems you can't win unless you're very lucky.

It's so good we have this forum for support though

Camelializ

Agreed we are all different

Saw my private chemo consultant and discussed the waiting list now into new year for the reversal

Unfortunately he thinks that owing to the complications first time round they may not be keen to  allow a private op for the reversal- however he’s going to discuss with the various consultants involved as luckily he knows them all in nhs and the BMI 

fingers crossed I can have a safe reversal soon

Hi AEC,   

It depends on what type of bag you have.  If you have a drainable bag, the stoma nurses recommended changing it every 2nd day.   The rep from Coloplast said that drainable bags may be left on for 3 days if there is no leakage.   I am currently using a drainable bag and have been changing it every second day, or whenever it leaks.   

If you have a closed bag, people generally change them daily or when there is output in the bag.   The Coloplast rep said that some people change up to 3 times a day.  

I was also told that the closed bags have a different type of adhesive on them and are designed for more regular changes.   

I am not familiar with the 2 piece systems.   

I hope this is of some help 

Kind regards 

Rebecca.  

Generally, I will change my bag every two days if I'm just staying at home and/or not doing very much.

If I'm going out for the day or evening, I will change that day and again the next day  if necessary.

As others have mentioned, the "leaks" usually come from the inside and are usually caused by an ill fitting hole around the stoma. Sometimes, it is cut to the wrong size or just not fitted too well... i.e the edges are too close to the stoma or similar. Occasionally, it may not have been properly adhered to the skin on application.

However, showering doesn't usually cause any issues if the bag is properly attached although it will get wet and may be uncomfortable if you dress straight away without drying yourself well. It will usually increase its adhesive effect and, subsequently, the bag may be be actually more difficult to remove.

So, by all means shower while wearing your bag. I can even go to the swimming pool and wet areas of leisure centres often spending over an hour there. I can still wear the bag until the next day if I want without any issue although, as I already mentioned, I'll change it if I'm going out for the evening.