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UGH. Today foul smelling brown stuff came from my old colostomy wound. A different shade of brown than what is coming out of my ileostomy. Also, way, way smellier. I paged my surgeon and she thinks I somehow developed a fistula from my off-line colon- and what is coming out is a) old stool or b) smelly mucus or c) ileostomy output that went down the loop into my colon and then is coming through this fistula.

I feel really gross. I feel really fucked up. I feel really desperate. I am really sad to have a further complication.

The ileostomy is one thing; still having a big open wound two months after a fistula repair is another ( my colostomy got reversed but then my colon fistulized with my old wound 3 weeks later) but having what looks and smells like shit coming out of my wound is a whole other thing.

Fuck fuck fuck my life feels so out of control. Has anyone else been in this boat? Something similar? I feel so so alone.

I have a loop ileostomy. Is a hotdog something to be avoided this 4th? Can any ileostomates speak on the subject,

I feel like I am stuck in a health morass. My first ever episode of diverticulitis in August led to an over two month hospital stay and a colostomy, I had it for 3 1/2 months then had a reversal that was successful for three weeks until my former colostomy site turned into a fistula that caused a blood infection and had me in and out of the hospital all spring. This was supposed to get fixed in May, but when my surgeon went in, I was too inflamed for her to fix it, and I ended up with a temporary loop ileostomy. I’ve now had an ileostomy for two months, and managing the ileostomy on top of this open wound, I have that was my Former colostomy has been a lot. Now I have a painful fluid collection building under my old colostomy site. I’m out of PTO and single and live alone and I don’t have family nearby and all of this is extremely difficult to manage. My life feels so out of control. I’m riddled with anxiety. Can anyone relate?

i am struggling to eat a balanced, ileostomy friendly pro-healing diet.

Do you have any tips or recipes? How do you get your fruits and veggies without causing a blockage?

Is steamed baby spinach, further chopped down and mixed with other ingredients an ok thi let me know. I typically meal prep on Sunday, and the only meal I can think to make that I could cook, which would last me at least a couple days into the week are enchiladas with shredded chicken and chopped up steamed baby spinach. Does that sound safe?

What else is safe for you?

I am 5 weeks post surgery with a loop ileostomy. I have been super conservative about my diet thus far— sticking to carbs and proteins mostly, avoiding sugar and fiber, but my surgeon told me today I could eat anything/ I should diversify my diet.

Does that sound right, or will it cause me bag problems? I would appreciate some counsel! Or is it just too individualized of an issue for advice?

I’ve decided today to be bold and leave my house to go out for a quick lunch with a friend. This is a big thing because I haven’t left my house in the month since I’ve had this ileostomy other than to go to a single doctor’s appointment. I pray neither my fistula wound nor ileostomy leak. It feels fantastic to put on “real” clothes- a pair of cute jeans, a tank top in my favorite shade of green, and a little white sweater. I don’t look my best, but I want to be in the world today. Wish me luck!

I have seen some resources state that ileostomates should not hydrate while eating and should limit fluid consumption for 30 minutes before/after eating. Is there any truth to that? Seems very tough to manage, so I wanted to see what other’s experiences were. Thanks!

I am new to this stoma and struggling to stay hydrated. My stoma nurse said gatorade was a hard NO, and that the pedialite was also probably making my output more watery. How do other ileostomates stay hydrated? What products do you use/ how do you consume them?

As always, thank you for taking the time to share your knowledge.

I am new to having this ileostomy and so far, it is challenging me waaay more than my previous colostomy or fistula. Help me reddit!

I write to get a sense of how other people figured out how to manage their ileostomies ( i used to have a colostomy and found it easier to manage) and to ask questions. I’m close to losing my mind with these bags that leak, sometimes as soon as two hours after application. Today is not my worst day and yet I’m on bag number four. Almost every night i wake up with a leak, and because my stoma is very active and constantly spewing output, it takes me about an hour to change my bag. I need all the tips you experts have!

My skin is in bad shape, all red and open. My ostomy behaved while I was in the hospital, but it has been a real terror since I got out.

What works for people?
How do you avoid/manage having an active ostomy when you are changing the bag when you have no notice of when you need to change the bag because you change the bag in response to leaks?
Does anyone with an ileostomy take Metamucil every day? I did today and it pancaked out of my bag in one jellied mess.
What Trish do you use? And what products do you use to get your ileostomy back to last? How long does it last for?

Please share your wisdom with me!!! I’m feeling so dysfunctional and isolated because I cannot leave my House due to how unpredictable this bag is.

Thank you in advance,

S

My 16 year old cat walks into the robot 3 head first and sticks his butt out and pees on the floor. Any ideas on how I can fix this? Does it mean he does not fit in it? Should I just give up on this? Help!

I am new to my loop ileostomy and after changing my bag 6 times in less than 24 hours due to a combo of watery output and pancaking I started taking Imodium. My question is- can i keep taking one pill daily on a regular basis? Is there anything to worry about?

Thank you community! You have made such a big difference.

S

I have had my ileostomy for two weeks and one day, and for the first two weeks in the hospital it behaved well. But today has been a nightmare!!!.
I previously had a colostomy and a fistula so this is not my first rodeo with a bag.

I am on bag change number six in less than 24 hours!!!! The only thing I ate different from what I ate inpatient were larger chunks of honeydew melon, which I thought I chewed sufficiently, but have come out in a pulpy mess. I suspect this means it was too tough and/or i did not chew enough. I’m going to lay off the stuff. I’ve also been eating an applesauce a day because that helps to thicken my output.

Each time my bag leaks in the same place to the right and when I peel it off, it seems like a lot of the pulp is stuck underneath the wafer along with liquid. It has leaked so many times I’ve only empty the back once today.

Can you get pancaking with an ileostomy?
Should I consider taking Imodium while I wait to hear from my stomaNurse? If you take Imodium, how much do you take and how often?

Any other ideas? I am desperate and exhausted and looking for help.

Thank you!!!!!!!

Will french fries give me liquid output?

I have only tried apples sauce, but I’m getting sick of it. I need to eat something to thick in my output or else else. It is too water and it beaks. What are your best foods for thickening output?

context: I am a 43 woman trying to cope/find some humor/levity in my situation after my colostomy reversal led to a fistula led to a failed resectioning led to a temp loop ileostomy.

In the hospital, my ostomy nurse, in the presence of a surgical resident, asked me what I wanted to name my stoma.
I said that since my stoma looks like a pair of cartoon fish lips puckered up, which makes my stoma my third pair of lips, I would name it Lippy. Neither of them laughed.

What are your thoughts on pouches with valve closure? I had a colostomy which I found really difficult to clean after emptying it. Then I had a fistula with a valve closure and it was so easy. Now I have a loop ileostomy and I see some bags that have valves. In my experience, the valve is way easier to close than any other closure of any other pouch. The only thing is you have to really milk the bag if you’re output is it all thick. Any other thoughts on the cons and pros of having a valve closure? Thanks!

Hi Group,

Summary: comparison and contrast between living with a colostomy and loop ileostomy.

Details:
I’m looking for some information, some advice, and some kindness. Eight months ago I had my first episode of diverticulitis and I perforated the same day. I spent two months in the hospital battling infection and then got a colostomy once my intestine had calmed down, but my surgeon thought she could operate without entering my small intestine. I became very depressed with the colostomy. It dominated my life and it made it so I couldn’t sleep. I lost a ton of confidence in myself physically and mentally and was really struggling to perform at work. I was forever worried about a leak.

As soon as I had the reversal, I felt like I had a second lease on life. I had three glorious weeks. I shot my shot by reaching out to someone who I haven’t stopped thinking about after we hooked up 10 years ago . All of a sudden I was killing it at work. I’m in my 40s and I had more energy and lust for life than I had experienced in 20 years.

Then my colostomy scar got infected and I developed this fistula. May 1 was going to be the fist ula repair and a colon resectioning and what I prayed would be my last intestinal surgery. My surgeon told me that she wanted to be my personal friend and did not want to have to operate on me after the surgery. I have lots of amazing people praying for me .

The surgery did not go well . My surgeon told me my insights were an absolute inflamed disaster. She perforated my bladder because it had moved and was not where it was supposed to be. I had a fibroid on the exterior of my uterus that had completely moved my intestines around. And now I have this temporary loop ileostomy.

Is there anyone who’s had both a colostomy and a loop ileostomy? Can you help identify some differences for me in the lived experience?

I know very little. I’ve seen some people with ileostomy post here saying they have a hard time sleeping because their back fills up so much in the night and then getting an extended size bag is helpful. I know the output is thinner and there’s more of it That’s all I really know. I’m looking for advice and information. So far, my ileostomy still a farts more than my colostomy. But it’s only day one.

Thank you so much for weighing in. I truly appreciate it.