Managing Ileostomy and Diabetes: Recovery, Diet, and Lifestyle Concerns

Jan 21, 2023 4:51 pm

Hi! My name is Hilarie. Rico is my dog!! LOL

I'm so new I'm squeaking new. My surgery date for ileostomy is March 21st, 2023. I wonder how long the procedure was for you and original hospital stay and did any of you go to rehab after? Recovery time and getting back to "normal"?

I have a neurogenic bladder caused by 35 years of Lupus in and out of remission with complications from a host of other autoimmune diseases. I have a Foley catheter which requires monthly changes and a leg bag for urine. I've had severe chronic constipation and now diagnosed with neurogenic colon. I will have two bags. I wonder how many of you have two?? The thought of which is very intimidating. I'm also insulin-dependent diabetic and two-time breast cancer survivor. After all that, my question is this: From what I've read, Diabetic diet is totally opposite than an ostomy diet. Contraindicated. Have any of you found it difficult to manage your diabetes?

I'm also very active and exercise daily. I worry about wearing the ostomy bag with gym clothes, i.e.: leggings and having a blowout when I'm working out. I'm also comfortable telling my close friends and family about my surgery and the aftermath, but I don't want everyone to know. What do you tell people?? Are you totally honest or more private not divulging your situation?? I worry about smell, etc.

I am also on a limited income. I would like your thoughts on "going premium"?

Jan 21, 2023 6:10 pm

I was a paying member but it expired. You should be able to find me on Facebook. I'm a member of the Can. O. Soc.
I spend a lot of time researching Disability Tax Credit.
Ed Maste

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Jan 21, 2023 8:08 pm

I don't know anything about being a diabetic and having an ostomy. All I would say is most people can eat anything, so I would just carry on eating as you are now after your ostomy surgery. Don't take any notice of any ostomy diet foods you read about, just try whatever you like in small amounts to see if it's right for you.

Having an ostomy doesn't stop us from doing anything. You will have no problems exercising or wearing your gym clothes, leggings, lycra outfits, or swimming. Yes, you probably will have a leak at some point in the future; we all do, but for most of us, they are very few and far between. It must be well over 10 years since I had a leak, and if you were having lots of them, speak to an ostomy nurse. You likely just need to find more suitable bag/products for you to use.

No one needs to know you have an ostomy unless you want them to. Unless they have x-ray eyes, they won't see anything underneath your clothes. I've seen lots of ladies in groups with ostomies posting photos of themselves wearing very tight, figure-hugging dresses; no one would ever know they had one.

I've always been open; most people know I have an ostomy. I don't go out of my way to tell everyone, but if it comes up, it's nothing I try to hide or avoid talking about.

Jan 21, 2023 9:22 pm

Hi Hilarie, I can't speak to diet although, like Ben said, there is no "ostomy diet," just super careful eating at the beginning while your intestines get used to things. That's wonderful that you're active. I'm a senior fitness instructor and I wear somewhat looser leggings than I used to and a flowy tank top that comes a little lower than my hip bones. Most people in my classes know of my ostomy only because I want them prepared and not to worry should I need to suddenly leave to do an emergency change (it's happened maybe three times in eight years.) Always keep a spare bag, barrier ring, and bag on you for those times.

Jan 21, 2023 9:29 pm

Hi Hilarie. I'm a T1 diabetic and have had a transverse colostomy for about 3-1/2 years. You're right. The two diets are pretty much opposites. Everything my endo said to eat, my surgeon said to stay away from, and vice versa. Like most other ostomy issues, it's a pretty individual thing. I was maddeningly frustrated trying to find out how to deal with the different needs. Docs, nurses, dietitians. Nobody had anything helpful to say. I'm sure by now you've found the same thing is also true online. All you can really do is stay within your carb parameters while eating the foods your new digestive system will tolerate. Start by eating those foods that your body can deal with comfortably. Once you're out of the hospital for a little bit, slowly add more foods while paying close attention to how they affect your digestion. Don't be in too much of a hurry to get back to your normal diet. You may very well be able to go back to whatever foods you've been eating, but take your time and add foods one at a time so you can gauge their effect on you.

Personally, I find I can eat most any T1D compatible food I want. But I have a different digestive system than you do. Take your other issues into account and you'll figure out what works for you. It truly is not as hard as it seems right now. Good luck to you. There are a lot of very knowledgeable folks on this site who are ready, willing, and able to answer whatever questions you may have. Take advantage of that.

Living with Your Ostomy | Hollister
Rose Bud 🌹
Jan 22, 2023 1:38 am

I have T2D and sorry to say St. Petie is right. What's good for one isn't for the other. I went back and forth with a dietician and I got is eat what you can tolerate. So needless to say, the best thing to do is watch your carbs and of course sugar intake. And the best advice if you have an ileostomy is make sure you drink plenty of water, we tend to dehydrate much faster. As far as telling anyone you have an ostomy, that's up to you. I only had to tell my fiancée since he was overseas when I got mine and it was scary, but the rest of my family and friends already knew about it due to a family member just telling my business to everyone, but what I found is that the people that really care don't think anything of it. And people who may think it's disgusting are narrow-minded. I haven't experienced anyone like that yet and hope I never do. But if you ever do or anyone else that may read this, that's exactly what they are. Yes, in the beginning at times in public I tried to hide the fact I have one, but now I think of it as normal and if someone has a problem with it, too bad! As far as the exercising, sorry I can't be much help. I stopped going to the gym after due to other complications that led me to get my ostomy, but there's all kinds of belts and supports you can use and special undergarments, and the people who are active will give you some great advice. So just try and live your life like you have before. All it takes is a little preparation and I think like most of us, I always carry a bag with backup supplies in case of a leak, and I know a few people carry a change of clothes. As time goes on, you'll learn what your body will do for the most part. Take care and best of luck!

Jan 22, 2023 3:39 am

Hi Hil (and Rico),

You got a lot going on there sister... you're obviously quite a trooper!!! Way to go! Normal hospital stay for an ileostomy is between 5 to 7 days if they do it with open surgery. Laparoscopically reduces that by a couple days... and that assumes there's no complications. But some (most) surgeons want to do it openly to see everything they're dealing with. If they're doing you 'open'... I advise you get the epidural... it's a game changer... and you'll thank me the day they take it out... and ask them to put it back!

Rehab is usually only for home infusion if your situation warrants it... and then they come to you, not the other way around. But don't plan on running any marathons when you get back from the hospital, no matter what. It takes a good 2 weeks for the 'open' incision to fuse properly, and then get your stitches out. And even then you need to take it easy or risk a hernia or worse. You're getting a 4-week vacation whether you want one or not, so plan accordingly... and that means minimal exercise, if any at all. You're gonna be a hurtin' pup, so lay low and enjoy your downtime.

Also, do a little pre-planning. Figure out how you're going to sleep when you get back from the surgery. Recliner or bed? Back or side? Some find lying supine really problematic with a stoma, so the recliner might become your best friend for a week or two. Going up and down steps won't be fun, nor will riding in a car that hits potholes. Coughing and sneezing will have you thinking you've blown out your stitches many times over... so don't do those either. A lot of trivial things won't be so trivial anymore, or at least for the time being. No pets jumping up on you, wear old clothes you don't mind leaking on, etc, etc. And have plenty of ostomy supplies on hand. I mean like a LOT!! Most times the hospitals give you a box of bags, rings, and barriers and wish you good luck. But if you spring leaks... and you will since your stoma will shrink and things will settle... you'll burn through those supplies in a day or two. So have LOTS of stuff on hand to eliminate that stressor! Amazon's next-day delivery will be your lifesaver if not!

You'll also want to brush up on your wound care skills. Sealing the ostomy is one thing, but keeping your incisions infection-free... and dealing with those infections when they happen... is really important. So have those supplies on hand too. Sterile sponges, Tagaderm films, adhesive remover wipers... etc, etc, etc.

So the real 'back to normal' time really depends on your version of normal. You're FULLY back in about 6 months, but people push it... sometimes to their detriment. You'll get a feel for it as you heal, and when you screw up... you'll know it.

As for diet... wow, that's a big subject! From the ostomy side, it depends on how much bowel you have removed. Hydration will probably be your biggest problem, as you can supplement vitamins and minerals to replace what your bowels no longer absorb. Find yourself a really good IBD Dietician who knows their shit and they'll get you straight. There's so much info out there now about controlling and eliminating diabetes with diet that I won't even go there. You've got a lot of reading to do and YouTube and guys like Dr. Berg and Ken Berry will be your new best friends. Diet on the ostomy side is really about trial and error to see what your body can absorb and what it cannot. Everyone is different, so don't put too much faith in what works for someone else. Like I said... there's just so much to know about all this it can't be covered in a few posts. And while you have some downtime read up on how digestion works. That will key you into the cause and effects of what you do wrong, as most don't think much past the amount of output they have and their frequency. But things like the color of your stool keys you into how your fat absorption is working, and having loose watery stools is really overstressing your liver and gallbladder. Not drinking while you're eating will prevent your stomach acid from getting diluted and not properly breaking up the food for your intestines to absorb. If you know that stuff going in you'll be avoiding much bigger problems down the road that most don't consider at the time they get 'ostomocized'!

Lastly, the 'what you tell people' thing. This is already a book so I'll keep it short. It's a learning curve we all go through. Your comfort level will guide you... and then at some point you really won't give a shit who knows and kind of look back at what you were worried about and laugh. We can get you through all that easy-peasy. That's what we do!

It sounds like a lot to have to deal with... and it is. But it's manageable. Promise.