Adjusting to Life with a New Ileostomy

Hey all

Just had laparoscopic surgery on Jan 19 and now have an ileostomy. I was diagnosed with ulcerative colitis about 6 years ago out of nowhere and everything went downhill from there. Thankfully, the last 6 years I really focused on health and fitness so I had a decent physical build leading up to my surgery.

Honestly, the surgery wasn't that bad. I needed a few days for my system to start up, which almost led to a NG tube, but I refused it and just puked for 2 days; seemed to work aside from that I didn't really experience much pain which was not expected. I feel more capable than I probably am.

After the surgery, I lost about 20 pounds in the first week. My muscle seems to be deteriorating by the day. Haha. Curious if my core is stronger because I had abs before the surgery? (They are still there) Or do I still need to start from the basics.

After I got out of the hospital, I was scared of all food. I was very careful what I ate and how much I chewed. I got so annoyed that I slowly reintroduced foods that I love, and started to chew less. My output was mush, so I kept pushing my limits until I saw chunks in my output. Still nothing. I also seem to absorb all the water I drink (like 3/4L). My output has been a thick paste since I left the hospital and I only empty my bag 2 times a day and none at night.

3 weeks after surgery and I eat everything (not fiber yet). I just ate a full meal at McDonald's, I've had tacos, ice cream, fish, tons of chips, chicken burgers, oatmeal, and so much more!! Everything comes out as a paste. And I chew like a normal person.

I was so afraid of food but I'm starting to get a bit of that relationship back I thought I was going to lose forever. I'm optimistic about the future now and once I'm healed I feel like most, if not all food will be okay.

Anyways. Not sure why I wrote this. Figured it might give some noobs like me some hope. I feel so much better now. When you wake up in the hospital everything feels like a nightmare and it's so depressing. The internet can be a scary place to "learn" something like this.

Cheers!

Hello Danno

That's a very familiar tale except for differing output consistencies.

Glad you are feeling well.

Hi Danno! I lived that nightmare too... different circumstances but same wake up...two emergency surgeries...lost 30 lbs...six weeks in hospital...11 days in rehab from hell...came out in wheelchair barely 80 lbs and clawed my way back...you have landed in the best spot of the internet...with lots of people to encourage you and share what worked for them....you name it...someone here has experienced it and will reach out to you! You ARE on your way to a more positive future! This site has been a Godsend for me. Best of wishes to you! Celia1552

Hey Danno,

Welcome aboard. It sounds like you're doing really well so soon after surgery. I love your attitude, which I am sure is a key factor in a positive outlook.

I have had an ileo for 14 years. I was eating pretty much everything about a week or two after surgery (under doctor's orders). Paste-like output is pretty standard for an ileo. The only time mine gets really chunky is after veggies and salads (and too many spuds), but no real issues many years on *touch wood*, so I can't complain.

I do remember that first bacon cheeseburger, fries, and onion rings (and chocolate thickshake) meal a couple of weeks post-surgery was probably the best feed of my life! Getting an appetite back after years of feeling like the living dead is the best feeling ever.

Cheers,

Jo

I feel like the ostomy club is probably the one that isn't a "I wanna join that club" as a first choice versus "it's what my body needs." Glad to hear you are home and recovering!

NG tubes are no joke—I would rather have my colon removed all over again than have an NG tube. But if you ever need an NG tube, I'll try to tell you something good about it. I didn't realize before my second surgery in November that I had a 50/50 chance of my small intestine not waking up. Since it woke up okay during my surgery in July, I guess that statistic proved itself in November when my small intestine refused to wake up. I think the NG tube was in for 5 days? I have one picture with it in, and I look like I am so ticked at the world.

Super important question: Did you have a favorite popsicle flavor while in the hospital?

I can't say a food-ish word that starts with a "b" because after my experience in the hospital during my last surgery, I still can't talk about that without getting sick.

It's funny how fast food becomes an acceptable food group after these surgeries.

Don't ever be afraid to ask questions :)

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Welcome! Sounds like you're starting off great. We are always here if you have questions or anything.

Kudos to you Celia1552 and thanks for sharing - you sound like a warrior and I am sure your message is helpful to many. And yes, this website is a godsend indeed! ;jb

Hi Danno, welcome to the site. I've had my ileo now for 30 some years, and it sounds like you've got a good positive attitude, which really helps in adjusting to the new normal.

I too had a colectomy and ileostomy and got home down 20#. I was hungry and initially ate two breakfasts. I started looking for 1,000-calorie meals. That changed. Now, after gaining 20#, I am watching how much I eat. Your colectomy will give you a new life. There are many things you need to learn about ostomy management. There are a lot of people who can help you. The enterostomal nurses will be your best friend.

Be very careful about eating. Fluids are important. There is a lot of literature emphasizing eating slowly and chewing well. Do not overindulge in foods that can get stuck in your ileostomy, or you will end up in the ER with someone irrigating your stoma. I have found that almost any food can be eaten as long as it is well chewed and not taken in large amounts. Example: if you eat a large bag of popcorn, nuts, or high-fiber foods all at once, it could be a problem. Good luck.

Yeah, it's crazy how quickly you lose weight. I lost 20 lbs in 1 week because I couldn't eat for 5 days.

I ate my first 2500 calories in a day yesterday. Felt good.

Eating real food definitely feels good. It took a while to get my appetite back. The extra chewing is a bit annoying since I used to basically swallow my food whole, but what can you do.

If I'm doing this well this early, I'm optimistic about the future. Can't wait to start eating fruits and veggies again. Thankfully, I'm not a big fan of corn anyway.

Yeah. The guy next to me had an NG tube and I witnessed his experience. They tried to put one on me 3 times and I pulled it out each time. I couldn't do it.

The nurses were actually surprised I got things working by throwing up all day for 2 days. It was so gross throwing up green bile and it was so painful as it spasmed my newly cut open core, but it was worth it.

I'd rather puke up stool than have that in me. Lol

Yeah. My main goal is to get back to my weight training routine. Hoping the fact that I already have a solid core helps out a bit.

Yeah. I will definitely be safe when chewing. I hear different things from everyone. I just have to find what works for me. I have a friend that basically eats his food whole and is so careless. He drinks beer all the time. Basically everything that would cause problems. And he's good. Never an issue. I hope to get there. Haha

I see we are both on the same page with NG tubes. I know they threatened me with one, and I was like no, I don't really want to do that, but then I kept tanking on them, so the next thing I know, the resident is saying they have to. Someone had their arms behind me and was holding a bucket in front of me. I had the resident and nurse in training in front of me... they got thrown up on so much... I never saw that resident again. They asked if I'd had sinus surgery, which I had, which translated to this will feel worse. So they tried the side that hadn't had as much surgery, but after 2 tries, I told them it was getting stuck somewhere and grabbed it so they couldn't do that side again. I asked if I could be sedated if we ever needed to do it again... but the whole "you need to be swallowing so it goes down the right tube so they don't puncture your lung" is kind of a big factor.
I wondered for me, since my surgeries were done at a teaching/research hospital, if they were ever experimenting because they even used a different anesthesia during my second surgery and were giving me completely different things to start waking up my digestive system per surgery. With having the same surgeon/hospital, it surprised me how different the immediate recovery approach was.

No popsicles for you?

Hi Danno, welcome to the site! It is really refreshing to hear from someone so new to ostomy life, who has adjusted so quickly and with such a positive attitude. Good for you! I know you haven't had a problem with any foods yet, but just don't assume that you never will. Chewing well really is important, and even though you find it a bit of a pain, if you keep doing it, it becomes completely natural. I did not have any problems either... until I did, and I still don't even know what caused it. Only that suddenly one night after dinner, everything just stopped moving, and I ended up in the ER and then admitted to the hospital for a couple of days. Now I am diligent about chewing, and keeping really well hydrated, and I haven't had a problem in over a year. Don't be afraid of fiber. I eat all the high fiber foods, whole grain breads, all the veggies and fruits, nuts, etc. Just get into the habit of chewing well, keeping really well hydrated, and nothing is off limits.

I want to address the issue of exercise. I, like you, was in really good physical shape prior to my surgery, with good abdominal and core muscles. This does help, but it doesn't mean you don't have to be really careful and start slowly. You now have a hole in your gut, and a hernia is just waiting to happen if you're not careful. If you google 'abdominal exercises for ostomy' you will find some good starting out exercises. I know they will seem really wimpy to you, but it will be worth it to build up that part of your body slowly. Depending on what your pre-ostomy workout was, you might be able to get back to it, but you may have to be happy with a modified routine, like limiting the weight you lift, and how hard you work your abdominals. It's better than the alternative of a hernia. So, start slowly and build up gradually.

Happy to have you with us on this journey. Lots of good people here, with great advice and support.

Terry

Everyone with an ileostomy should be drinking at least 2 quarts of water a day with electrolytes in it. That really is important, and also, the water will help thin the output a bit.

This is an inspiring story, Danno. I have only started eating more foods two years post-colostomy. Needless to say, I'm still underweight. You have inspired me to be braver. Keep going as you are, and I wish you every happiness.

I had my first surgery in 1986 and have had six more in the last 30 years. The last two times, I asked for an NG tube because my stomach is always slow to wake up, and all the bile backing up was just miserable. For me, it was just easier to have the tube and avoid all the misery; it's always easier coming out!

Welcome! This is a great group to be a part of! It sounds like you are tackling this new journey with a very positive attitude, and that is a huge part of it!

I had ileostomy surgery in October and got a stoma hernia a few weeks ago just grocery shopping, mopping, and housework. Once I got it, half my belly became very swollen - especially toward the end of the day and pain started again. Please be careful... I wouldn't want you to get one if you don't have to!

Thank you for all this advice. It's so difficult to find information online, especially with exercise progression. I appreciate the in depth response. :)

Wow you're very brave to ask for it. I would rather spend 2 days throwing up than attempt that again. And I didn't even get it in. Haha

The only way to know your limits is to test them. I love food way too much and I don't want the desire of eating to turn into a chore.

I'm still very careful. I have a food journal and I track everything I eat, plus I record my macros so I ensure I'm getting enough calories with balanced protein, fat and carbs. I do push myself a bit more each time I get though a new food.

A lot of things suck about having this surgery. I hate it. But the way I see it, my life was way worse before. I'd do it again.

Sounds similar to what I just went through and am still struggling with. Thanks so much for sharing!