TPE surgery recovery

Hi Cymraes1 and welcome to the group.

I remember you from the bowel group and am glad to see your husband is through his surgery successfully. I lost about 3.5 stone so it’s not uncommon after such a major op but it’s good that he is managing to eat. I found that I really turned the corner at about 6 weeks from discharge but it is a long recovery process. 

I think we’ll all have devised different ways to store things so I hope others will share their ideas with you. I have a storage unit, self built from Argos like an IKEA bookcase/storage unit with canvas type baskets. It has 8 “drawers” and every one of them is full! This is in my bedroom rather than my bathroom.

Your nappy wrapper sounds like a useful idea. I don’t have one, and I bag my waste in another waste bin liner. I don’t ever have very much smell at all so I don’t notice it. I got washbag type bags free from various stoma company suppliers and typically use one of them to pop in my bag when I go out. Small enough to carry a few supplies for each stoma. There will be plenty of ideas I’m sure for men on Amazon or similar. 

I have never bought specialist underwear or swimwear, so I’ll let the male members of the group comment on that and any clothing issues. I know my father in law who has a urostomy finds it difficult to get trousers which fit properly with his bag, so he tends to wear jogging bottoms now which are more comfortable. As a woman I haven’t felt the need to change any aspect of my clothing, even with the 2 bags and I didn’t see the value of buying specialist underwear due to the cost. If my colostomy leaks and there’s a mess, I ditch my underwear in in the bin, and wearing “normal” underwear means it’s easily replaced. I use normal tankinis to swim in and again have never felt the need for anything specialised. I make sure both bags are empty and flat before I go in the pool and have never had any issues. 

Hopefully others will have their tips for you, but please feel free to ask any questions-we’ve got lots of experience in the group of living with stomas and will be happy to help. Best wishes for your husband’s continued recovery-please don’t be alarmed if you feel sometimes he’s taking a step backwards. Recovery isn’t linear and you can get good and bad days but every little sign of progress is another step forward.

Sarah xx

Thank you very much again Sarah for your support and informative reply. I suppose I’m trying to troubleshoot as much as possible with ideas to make life easier. The nappy wrapper will make a difference and I’ve been busy sizing the bags to fit  today. A patient in the hospital told us that he has his bag cut to size from the providing company. Do the stoma’s stay the same size? Lots to learn and it is quite daunting. Regards. 

Sound and sensible advice from SarahH21. A few personal points as a male:

My stoma nurse issued me with a robust bag, with a zip top and inner compartments, on day 1. It holds about 10 days' supplies (I have 2 stomas and change them every 48 hours).

My ostomy supplier (who supplied the bag) sent me a smaller version which holds a single change for both stomas.

I keep my stock of supplies in a storage box in the wardrobe.

I wear plain black or dark blue jogging bottoms most days, with a drawstring waistband (no belt) and non-elasticated trouser cuffs. No stripes or logos and a matt, soft fleece fabric. They are very comfortable and when worn with a suit jacket of matching colour, a white shirt, tie and formal shoes they are appropriate for weddings, funerals and the like.

Waste from ostomy changes is placed in a tough, fragranced, small black bag supplied by the ostomy supplier and double knotted before being placed in the household waste bin. No problems whatsoever. If there is any doubt I keep a small aerosol of Ozium to hand.

Since using curved elastic strips for the past 2 years no leaks have happened.

A Comfizz waist band will help disguise any bulges on formal occasions, otherwise loose, long tee shirts and casual shirts are the norm for daily wear.

When the patient is up and about he will soon develop his own style and routine and start to live again. There are quite a few options out there!

Dulac 

Stomas take time to settle after surgery but once they have, they should be the same size after that. They don’t all look the same either! Mine reduced in size, so initially after surgery I cut my bags with measurements from the template from my stoma nurse, as things changed as I healed so I sometimes needed different sizes. 

Nowadays when I order my supplies they are pre cut to the measurements I provided. I personally find this much easier, though some people like to cut their own. It can be too easy to puncture a bag and it can look untidy which is why I don’t do it myself.

Absolutely you want to be making things easier for you both, but you do find out a lot both from the stoma nurse and quite simply trial and error at the beginning! And we are all different so tend to find the ways which suit us as individuals. But ask away-nothing is a silly question in this group and we all had to learn to deal with these when we first started out. You are doing a great job I’m sure of helping with everything.

Sarah xx

I forgot to mention that sleeping was a concern in the early days because the pouch snagged on the bedding during the night and leaked on a couple of occasions. Not good at 4 in the morning. I now wear a large, long cotton tee shirt at bedtime which acts as a slip plane and allows me to move around during sleep without snagging. Simple but effective. Once again, the elastic strip flange extenders really do work 100% when combined with a Fusion applicator. Sounds complex but it isn't. Men in particular need to shave the area around the stoma for pain-free removal. A twin blade self lubricating wet razor works well. Just be careful!

Dulac 

I wear my knickers in bed under a nightshirt so my bags stay in place, with the tube for the urostomy night bag going through to attach to my bag under the elastic at the pants leg-I’ve never considered going without underwear! 

Good point Dulac about men shaving carefully around the stomas. Taking bags off with hair being pulled is luckily not part of my life as a woman.  

Sarah xx

Thank you Dulac, some great advice. What is an elastic strip flange and fusion applicator please. Regards. 

The elastic strip is basically a curved self adhesive tape made by Coloplast and used in pairs. A Fusion applicator is a large cotton wool bud impregnated with a barrier solution and adhesive primer. Worth their weight in gold as far as I am concerned. You will find them on Coloplast's website.

Dulac 

Thank you. 

Best wishes to your husband! I’m male recently retired and had TPE 16+ years ago, Remain positive!