Advice for Upcoming Ileostomy Surgery?

Hi everyone!! I have been cleared for surgery and have scheduled it for early this upcoming December. I am having a total colectomy with the formation of an ileostomy. After 13.5 years of Crohn's/Ulcerative Colitis (Drs still can't figure out which one it is), I am ready for this surgery. I was wondering for those of you who have had the surgery...

1) What is something you wish you had known before going into the surgery?

2) Did you have a lot of trouble with leakage? I'm a little nervous about this.

3) I've heard about rectal discharge, my surgeon mentioned it too, but how much are we talking about? Do people have full BM sized amounts of mucus come out?

4) How difficult was it for you to figure out what foods worked/didn't work?

5) How long until you felt comfortable getting back into physical exercise?

6) What bags work best for you? I'm planning on ordering samples.

7) Ladies, any lingerie or swimwear help you feel more comfortable?

Thanks in advance!

Hi Ruppy,

Good luck to you with your surgery.

I wish I would have done more research. I wish I had more supplies on hand when I got home. I thought I knew a lot, but it is tough when you really don't know what to research until it happens to you. I had a total proctocolectomy with ileostomy in July of 2017.

I did have issues with leakage. My stoma sticks out fairly far, but I didn't truly find relief until I went to convex. I used Hollister for a long time, but recently switched to the click-flip from Coloplast and am pretty happy with them so far. I also really like Eakin rings. You will have to experiment.

Advice:

Try lots of products and learn to put them on correctly.

Find a good supply company that will help you with your supplies. When you find them please let me know who it is! (kinda joking!). I was with Byram for a long time, but got tired of how unresponsive they are. I am now with McKesson.

Expect to get sore and have some skin breakdown.

Meet a WOC nurse in your area and meet with them soon as you can.

Find support, here and a physical group in your area.

It's terrible, but I think food is a trial and error deal. At the start I peeled everything and took out any seeds. I still don't eat any nuts. For me they come out like daggers! And - I CAN'T STRESS THIS ENOUGH - CHEW, THEN CHEW, THEN CHEW SOME MORE. Also, the best trick I have gotten from another person is the use of marshmallows to stop your flow before you change. I eat 6 about 15 minutes before I start. I have a tough time with flow because I don't have a gallbladder, hopefully yours won't be too bad.

Another helpful thing I came across is compression t-shirts. I get them off Amazon, my favorite is from Tesla. It's a great way to get a bit of support, plus they breathe well.

I started working out and running within about 8 weeks after surgery and now run 5Ks and am training for a 1/2 next spring. Don't go crazy at the beginning. Take it easy. Know your limitations. Also try different support. I believe I have every belt on the market and for my money the Basko hernia belt is the most comfortable and a good price. Definitely get the stoma protector as well. It's well worth the 30 bucks.

I hope this helps some, and feel free to ask any specific questions you have before or after and will be happy to help!

Jason

Hi Ruppy,

That's a lot of questions! Here you go.....

1. What is something you wish you had known before going into the surgery? I had to think hard about this question. My answer is nothing, because had I known what I know now I would have been a basket case worrying about it before the operation. Is this your first abdominal operation? I'm guessing it won't be done laparoscopically, so get the epidural.....and don't let them take it out until they have to. Make sure your surgeon knows what he's doing. If in doubt.....toss him/her out and find a good one.

2. Leakage. It all depends on how well your surgeon forms the stoma and places it in the abdominal wall. Ask your surgeon how many he/she has created and what percentage had to be re-done. Make sure you understand the placement options (above or below your belt line, right or left side, etc). They will measure and mark you just before the operation, so you might want to get some barriers and bags and stick them on now to see where you don't want a bag.

3. Figuring out what foods work..... This depends on how much, if any, small bowel is removed. Figuring out which foods you can absorb/tolerate won't take very long, but your bowels will attempt to adapt to functioning with what's left......and the adaptation takes a year or more.

4. How long until back to exercising?..........depends on how fast you heal, if there is any post-op infection to deal with, etc. They'll have you on your feet by day 3, epidural out by day 5 and you on your way home by day 7......if all goes well. Then staples/sutures out in another week or two. Then you need to be careful not to herniate, so easy does it for a few months.

5. Best bags. The ostomy nurse at the hospital should have a variety of bags to show you and talk to you about. The most important thing is finding a barrier that your skin tolerates well. For me, once I found one that worked I didn't do much more experimenting......but always say I will (but I won't).

6. Lingerie.....ummmm....can't help you with this one.

I'm sure you'll have lots more questions....so just fire away!

Regards,

Bob

Hi Ruppy,

Good luck with your surgery. My doctors struggled too if I have Crohn's or UC for years. Stoma location is very important and I wish I had known more about this before my surgery. Do some research on where the best location will be for you. Mine is right on my belt line and if I don't wear a stoma guard I get restricted flow into pouch. Take some time and they will go through this with you prior to surgery. Stay well.

Penguins7

Rupster,

I agree with everything Penguins said except maybe the last part. The "Stoma Location Marking" team spent about 30 seconds with me the night before my surgery. They had me lift my shirt, then they took out a Sharpie and drew a "1" in a circle and then a "2" in a circle on my abs.....then put the cap back on the Sharpie and sped off. They didn't ask me where I wore my belt, if I wanted it above or below or anything else. I wasn't even sure what they were doing until I asked. To be fair, an ostomy was supposed to be a "just in case we get in there and all hell breaks loose" option, but that shouldn't have mattered. If there was any chance I'd be getting bag-i-fied, they should have spent the time at least acting like they cared and discussed options. Hopefully your marking team will be more thorough, but don't assume anything when it comes to these operations.

As for the UC or Crohn's........they're the same thing, and it's really semantics about which is which. When they do the biopsy, it all looks like inflamed intestine. Technically, Crohn's is areas of the bowel affected with sections of good bowel in between the bad, and UC is where the whole thing is a mess with no good spots in between. UC is primarily in the colon and Crohn's affects both. But whatever you call it.........when the drugs stop working, something has to be removed.

Regards,

Bob

Good luck... Time for a much healthier, happier life. Start making a bucket list of all the things you want to do.

1. I've been around ileostomies all my life. Dad had one long before I was born, then I had mine when I was 19, so I already knew you could live a normal life just as anyone without one does.

2. In 30 years, I can count on one hand how many leaks I've had, and those have only ever happened while I was sleeping at night. It's been so long that I can't even remember when my last leak was.

3. I did have rectal discharge in the early days. Mine wasn't mucus; I had an abscess high up near my pelvis that was causing it. The surgeon removed my rectal stump and left my anus in, and I've never had any problems since.

4. No problems. As Dad had an ileostomy, I never had any fears of eating food. I eat whatever I want from the start, just in moderation. It's just trial and error. What food one person can eat could be bad for another. Eat everything in small portions at first (some like to keep a food diary). If you think something has caused a problem, always try it at least on another three occasions. Adhesions get a lot of the blame for blockages.

5. About one year for me. I had a lot of other problems going on at the time.

6. There's no easy answer. They're all good, just different. Ones suit different people. It's best to leave it up to your nurse to start with and see how it goes. Most samples ordered before surgery never get used.

7. Ermmm, I better not say what I like to see women wearing. Just wear whatever you feel comfortable with.

Ruppy08,

All good questions and advice. Every ostomate's experience will differ. You'll probably get several different answers. Here is my experience. Apologies for the short novel in advance.

1) What is something you wish you had known before going into the surgery? - Not being able to shower for a week after surgery. Giving yourself a sponge bath sucks. That, and having the tube down your nose.

2) Did you have a lot of trouble with leakage? I'm a little nervous about this. - As Bob states, be sure to research how good the surgeon is. You don't want to have surgery to correct the mistake if a half-ass surgeon messes it up the first time. Ideally, your stoma should look basically like a little rose bud and should stick out of your abdomen about half an inch to an inch. I never really had an issue with leakage because I had a wonderful, well-experienced ET nurse show me everything I would need to know. And this was before the internet was as popular as it is now. She was the one that marked where my stoma would fit best on my abdomen. She had me sit down and marked the area above my pant line and that worked best for me. And then showed me a technique that prevented leaks. I've only had about 7-8 blowouts in the last 24 years and those were caused by not changing my pouch as often as I should or faulty pouch systems. Leaks are inevitable. But most are preventable. The first one is the worst but afterwards, you tell yourself, "I got this...no big deal."

3) I've heard about rectal discharge, my surgeon mentioned it too, but how much are we talking about? Do people have full BM-sized amounts of mucus come out? - If you're getting a total colectomy, I would assume that they will give you a barbie butt (sealed rectum) and you wouldn't have to deal with discharge. But if that isn't the case and you have a rectal stump, you may experience some discharge such as blood and mucus. Everyone is different. This is normal. It won't be a full BM-sized amount. My discharges come and go and usually about a teaspoon-sized or less amount. It kinda feels like you need to have a BM. I had a subtotal colectomy performed so my rectal stump is intact. After my surgery, they gave me an enema to clear out anything that may have been left over that the prep didn't flush out. And you can use enemas to flush out your stump if you're not feeling fresh. Again, the amount and consistency will vary among ostomates.

4) How difficult was it for you to figure out what foods worked/didn't work? - Not difficult at all. You'll find out pretty quickly what foods do what to your body. As Jason stated, chew your food up very well and then chew it up some more. It prevents obstructions and blockages, helps with digestion, allows your body to absorb nutrients better and makes your stomach full faster so you don't overeat. Right after surgery, you may not eat for a few days except ice chips. Then they may put you on a clear liquid or surgical soft food diet initially. You will, however, be able to eat most of the foods you eat now, it will just take time. Below is a link for an ostomy food chart describing what foods do what. Avoid the obstructive foods a month or two after surgery. Then slowly introduce them into your normal diet in small quantities to see how your body will react.

Ostomates Food Reference Chart

5) How long until you felt comfortable getting back into physical exercise? - You should probably take it easy and avoid heavy lifting for the first two months after surgery and allow your body to heal. As Bob said, you want to avoid hernias and having an ostomy can make you prone to them. Taking walks to get your stamina back is good. I wouldn't start doing anything hardcore for maybe 4-6 months, and if you do weight lifting or crunches, a hernia belt may be a good idea.

6) What bags work best for you? I'm planning on ordering samples. - Ordering samples would be the best idea to see what works best for you. Some ostomates prefer a two-piece system which includes a wafer and a pouch that connect to each other by a plastic ring. I myself use a one-piece drainable by ConvaTec and I order my supplies through Edgepark. And I prefer to use clips as opposed to Velcro to seal the pouch on the drainable end. Again, use whatever works best for you.

7) Ladies, any lingerie or swimwear help you feel more comfortable? - I know the question is for the ladies, but you may want to check out Ostomysecrets. I myself have a wrap from them and it works very well. Or just google clothing for ostomates.

Hope this makes you better informed. YouTube has several videos on ostomies and ostomy care. You might want to check those out too. Please let me or us know if you have any other questions.

Bain

Bain... errrrr... I was hoping no one would mention the "tube down your nose" thingy. But since it's been brought up, you might as well know about it. It is the worst part of the whole operation. Ruppy, what we're talking about is the tube for the stomach pump. You can't have ANYTHING passing through your intestines for a couple days so the resections staples/stitches can heal. If you ate or drank anything, it would leak out where they rejoined the ends of the intestines, causing sepsis, bla... bla... bla. So they put a small tube (that feels like it's the size of a sewer pipe) up your nose and down into your stomach. They do this while you're under, so don't worry about how they get it in. When you wake up, the pump will be running all the time, pulling out anything before it makes it to your intestines. The hose will be taped to your nose, and you'll look like you just went a few rounds with Rocky Balboa with a big white tape blob on your nose. The stomach does secrete even without food in it, so the pump needs to be running all the time. During this time, you won't get any food or drinks. They gave me a little green sponge cube on a stick that I could put in a cup of ice water and then suck on the sponge. You won't believe how wonderful those few drops of ice water feel. Despite your begging, they wait until day 3 or 4 until they pull out the tube from your nose... it comes right out, and you don't feel anything... except instant relief on the back of your throat. With it in, it feels like you have a sore throat that doesn't go away. It's not that bad, and the pain from your incision on your belly will keep your mind off the tube stuck in your nose. Now you know about the nose tube thingy. Hey, it's not all bad... at least you won't have a damn catheter stuck up your pee-pee... that right after they pull it out, they threaten to put right back in if you don't pee by the end of the day. And if they have to put it back in, you will be AWAKE this time. Yikes... made me pee just thinking about it! Fun, fun, fun!

Oh, make sure you bring a tablet and charger or you'll be absolutely bored stiff with daytime TV within the first 2 hours. You can't believe the crap they put on TV when no one is watching. Truly a waste of good electrons. You're jogging my memory about all this stuff... funny how you forget things.

Later,

Bob

Hi Ruppy,

I think just about everything you asked about has been covered but here's my take.

1) What is something you wish you had known before going into the surgery?

I was lucky enough to meet a woman my own age who had the same surgery when she was 10 years old, certainly put things into perspective. She gave me great advice about how to deal with everything involved.

2) Did you have a lot of trouble with leakage? I'm a little nervous about this.

Only about 6 months after surgery when I started to gain weight, my stoma retracted a little and I did have a few leaks, but was all sorted when I switched to a convex base. No major problems since except with the filters which basically don't work, I just put tape over the top of the filter and it's all good.

3) I've heard about rectal discharge, my surgeon mentioned it too, but how much are we talking about? Do people have full BM sized amounts of mucous come out?

I had a panproctocolectomy which includes removal of rectum.

4) How difficult was it for you to figure out what foods worked/didn't work?

Can eat anything and everything (including nuts/seeds/popcorn/fruit/veg/fibre), I don't chew any more than usual or drink water in excess, but I realise I'm the exception rather than the rule in this for most ostomates.

Unlike a couple of replies above I didn't have a nasogastric tube inserted thank God and from what I have heard about this kind of surgery in Australia I don't think that it is standard procedure here. In fact from the day after the operation my surgeon insisted I eat anything I felt like and as often as I liked (which I did and still continue to do 10 years later!).

5) How long until you felt comfortable getting back into physical exercise?

About a couple of months.

6) What bags work best for you? I'm planning on ordering samples.

Have used the same make and model since surgery (Hollister Adapt two piece, convex base and barrier ring).

7) Ladies, any lingerie or swim wear help you feel more comfortable?

And finally a female answer! ;-)

I wear the same style underwear as I did pre-surgery (high waisted/full briefs), comfort is everything to me. My stoma is placed just below my navel to the right, so my undies cover the whole bag and everything is tucked away tidily (?bag what bag?!). I often wear a camisole or singlet under my clothes too which gives a great line (and covers any out of control curves!)

The special ostomy undies are a waste of money in my opinion, the best nickers I buy are from Target (2 Pack Matt Shine Full Briefs for AU10), and are incredibly comfortable, fit well without being tight over the bag.

When swimming I just wear a one-piece.

The following Dutch website has some great ideas about clothing and even though the site is many years old (hipster jeans?! - am glad they are no longer fashion), there is a lot of good info about all things ostomy.

https://www.stomaatje.com/clothing.html

and there are groups and pages on Facebook that are well worth a look.

https://insideoutostomy.life/resources/facebook/facebook-groups/

Cheers,

Jo :-)

You have a wonderful attitude, so you are off to a great start. I had mine last December, and I still have a poor attitude... By the way, no tube down nose.

Hi Ruppy,

Yes, looking forward is right... you'd only need the nose tube if they had to resect the bowel. Since yours will just be a cut and re-route, there shouldn't be any need for the stomach pump. Sorry about that... it's all Bain's fault. So without the nose tube... you're on easy street. But the daytime TV still sucks.

;O)

Regards,

Bob

Fine, I'll be the bad guy on this one... lol

Bain

You go, Bain! Take one for the team! Ya know, I had forgotten about that stupid f* ^ing nose tube until you mentioned it. Another aspect of the operation they neglect to tell you about before the surgery. It felt SOOOOO good when they yanked that POS out of my nose.

When I was at Hopkins for my second operation, I remember after a few days when the little freckled face nurse's assistant (or whatever he was) came in and told me he was going to take out my catheter. I was like YES!!! Get that piece of crap out of me as well. I jokingly asked him if he'd ever done it before and he just nodded. So he puts on his gloves, grabs the catheter AND STARTS PULLING IT OUT SLOWLY! Suffice it to say it didn't feel good. So I yelled at him to stop dicking around and pull the damn thing out....and I mean FAST! He did, and all was well..........but I think it really was his first time. I really can't think of anything good related to having any plastic tubes hanging out of your body.

Now we need to keep Ruppy's mind off the operation until December. Something makes me think we're not doing such a good job.

;O)

Bob