Advice for Supporting Husband with Ileostomy - Day 5 Post-Op

I hope it's okay for me to be here as it's my husband who's had an ileostomy, not me, but he's not one for groups! We're on day 5 after his op, so it's all new to us, although we knew it was going to happen eventually as his bouts of diverticulitis were more and more. Anyway... ANY advice? Random or useful... anything at all that the hospital might not tell us. Also, tips for being supportive because I'm a rubbish nurse and worried about when he's home.

Try not to sneeze or cough without a pillow held firmly over his tummy, don't strain or lift for at least twice as long as the doctor says to help that core heal and to avoid further hernia issues, wear a hernia belt or binder as much as possible.

Good luck, I will be praying for you.

Perfectly fine for you to be here.

Hi, in the UK with NHS treatment, you will be put in contact with a Stoma Nurse. They generally know more about aftercare than the hospital staff. Leave it all to them; they will probably visit before and after the patient leaves the hospital. They are the best ones to answer your questions. You are not alone; there are a lot of us out here.

Morning Anji and welcome...

Many hints and tips here, no question off limits either... I am still new to the ileostomy world myself, so here comes my 2 cents' worth.

Sleep and rest, eat eat eat small portions often, remembering to chew chew chew. Water is your friend.

Find the right appliances that suit his needs. No heavy lifting or exercise.

Find an ostomy nurse if available. As his supporter, just be there for each other, as it's not just him dealing with the changes, it is you as well. It is overwhelming for you both, but you will settle in, find your way, and mostly, we are here for you with our hints, tips, and thoughts...

You both got this. Be strong and smile on.

Tracy

I'd say he's lucky to have you. You are already seeking info for him that took me over a year to gather. Most of it came from this website - in my early days I was just trying to get over the shock of the whole experience. You've come to the right place for starters - keep up the great work. The support you can give him is priceless. My hubby was and is very supportive but not the type to do the research.

Hi Anji, welcome to the site. I've had an ileostomy for thirty some years and it improved my life, but I couldn't have done it without my wife's help. First tip is to drink various liquids but stay away from carbonated drinks for a while. Contact the different suppliers and ask for samples. Also, there's another site, uoaa.org, that has a lot of tips and friendly people to answer any questions.

Of course it's more than okay for you to be here. Your husband is very lucky to have such a wonderful support! Good advice from everyone else, I'd just add: Don't use a straw to drink and don't chew gum - they create more gas, which he doesn't need now. Call ostomy supply companies and get free samples - one-piece and two-piece systems, flat and convex bags, etc. Call the companies to speak with experts about these things. They can really help. Also, keep in mind that his stoma will shrink over the first few weeks and so the size of the hole in the bag that covers his stoma will need to shrink too. "Cut-to-fit" bags work well especially early on because you just cut the hole a little larger (like 1/8 inch) than the current stoma size (this gives the stoma enough room to expand and contract.) You just cut your own hole. They do make pre-cut holes, too, which I used once my stoma size stabilized. A stoma nurse who had her own stoma suggested that I use a mini binder clip at the closure. I do that and never worry that my bag will accidentally open if I didn't snap it shut well enough. Lots of trial and error. Hang in there and good luck!

Get him up and moving (walking) if he's not already. Do a little more of something each day. He has to heal and that takes time (it varies, everyone is different) but the quicker he (and you) gets back to a more new normal life, the better it'll be. Buy these or whatever version you have in your stores for when you go out. They are way easier to use than public bathroom toilet paper and clean the end of the bag way faster and better.

That's a great tip, Alex. For some reason, I've never bought flushable wipes but, instead, curse the paper-thin toilet paper as I sit cleaning out my bag for nine hours.

Using that godforsaken public bathroom toilet paper, tear it off in pieces before you empty (I usually do about 10 pieces) while you still have 2 hands free. Or, use the wipes and save all your misery.

Welcome to the site. We are a great bunch of people from all over the world. As you're in the UK, he will have the stoma nurse come to your home on a regular basis, and she will give you a contact number for any problems. As everyone else has said, rest, but gentle walking on a daily basis to build up strength. Ask the stoma nurse for a hernia support belt ASAP. Lots and lots of fluids. Make sure when he starts eating normal food that he tries small portion sizes first and chews, chews, and chews. Please reach out anytime. XX

You have gotten lots of good advice here that I don't need to add to. I just wanted to welcome you to the site and say that it is more than okay for you to be here. Your husband is lucky to have someone who cares this much, and I'm sure you are anything but a rubbish nurse!

Terry

Get a knowledgeable ostomy nurse and a registered dietitian. They will be your best sources. The ostomy nurse will let you know where the closest support group is. A number of them stopped with COVID but hopefully they will be starting up again soon. Support is very important. This is also a great place to start. We've all been there and continue to live on with the ups and downs. Bag leaking is something the ostomy nurse can help with. I had an awful time with it until I found a great ostomy nurse. Haven't had a leak for 6 months now.

Merijane

Tell him to be very careful about lifting; to avoid a large hernia after the operation, the abdominal wall is very weak. I would recommend getting an ostomy support belt that will help avoid a hernia. Also, there is an app that is pretty good called Ostomy101.

And another site is INeedANurse.com.

As far as his ostomy pouches, I like Hollister two-piece.

Good luck, it's not the end of the world. It's all about attitude and approach.

Very supportive of you, he's a lucky guy. This is a great resource, no silly questions here but the ones you don't ask (I wear Hollister; separate skin barrier). Always wear two clips and a belt saves me every week from unpleasantness. Avoid raw carrots and the like. Maybe popcorn could cause blockages in volume as well.... Lots of water always now, Gatorade is a boost on hot days. I can feel when I'm dehydrated and that causes me more problems. The belt is handy to tuck the appliance out of the way when you're having sex too; sex is very therapeutic as well. Health and happiness.

I'll eat just about anything but popcorn; it is the one thing that I've found that doesn't do well for me. It was painful until it broke free. I can't imagine what a complete blockage would feel like. I can't wait for some therapy.

Hi, I've struggled with gut issues and trying to

regulate my colostomy bag.

I find a quarter of a teaspoon of New Zealand Manuka honey twice daily has fixed the problem. One discharge daily and quite predictable. Look up Manuka honey and bowel assistance on Google. Amazing product but quite expensive. You might want to try any bees' flower honey for a start. Manuka Honey is native to New Zealand.

Mike

Interesting honey remedy and I hope Oregon honey works. I'll try anything. The unpredictable part is my worst enemy as I'm trying to get out and do normal stuff, but don't know when the next "explosion" will come.
Thanks.