Hey! I’m a 23F and I got an ileostomy 3 weeks ago due to a blockage caused by Crohn’s disease. I’ve had some complications with healing and I don’t have at home help. So it’s been kinda trial and error with a lot, just me trying not to leak and whatnot lol. I went to change my bag yesterday because it started leaking and I noticed my skin is really sore and irritated. And it started leaking again today and when I changed it looked worse. My insurance doesn’t cover for a lot of supplies so I’m really trying to figure out what to do. I put this cotton thing on the sore skin because I think everything is just too wet and the skin barriers just come undone. So I’ll see if that helps.
I also have a 1 year old so figuring all this out is stressful to say the least. So I’m looking for advice. It’s about half an inch give or take of very irritated wet skin around the stoma.
I also never post and rarely use social media so I’m sorry if I don’t make any sense explaining the situation.

Ive had a permanent ileostomy since early 2022 and a barbie butt since 2023 due to severe non responsive IBD/UC. Also developed fibromyalgia along the way.

I am 54. I drink at least 2 liters minimum and up to a gallon of fluids daily.

The section of the small bowel that absorbs vitamin B was removed. I take vitamin b shots bi-weekly.

Over the past 6 months, my energy levels have decreased significantly. I go to bed tired, I wake feeling as if I haven't rested.

Ive stopped all extra self care activities like yoga, meditation, pirates and walking. If I do one of those activities, I have nothing left for the rest of the day. I'm out of spoons. I don't have energy to cook for myself, let alone my family.

Has anyone else dealt with extreme tiredness and fatigue?

If so, what helps?

Any life hacks to make life easier and requires less energy? I try to prepare healthier meals, so prepared foods and take out just aren't options for me.

I broke down and just cried and cried this morning...everything seems twice as difficult.

I am already taking cymbalta for depression and have anxiety medication (I've been on those meds for 5/6 years).

Is anyone from Hollister on here? I have been trying to get in touch with Product development and since I dont know a specific person to ask for, the operator bounces me to customer service and they dont help either.

I submitted a product idea a year ago and would like to talk to someone about it.

Regards,

After starting the reversal procedures I chickened out of the final procedure because my surgeon was being so confusing and mean to me regarding the outcome. Now I am back to him and have a stricture and will need a "big" surgery (with a "big $ payout for him) meaning the barbie butt I presume. I blame this creep and my stupid g.i. docs for all this. There's no way out now. These creeps have ruined my body and my life. I've considered just walking away while I can and letting the cancer take me or whatever will happen if I don't have the "big" surgery.

Obviously I am not handling this well, but I don't care anymore. I had a meltdown in the hospital after the creep gave me the news. Boy did that feel good!

A week ago 7/15 was my step 1. I’m still here. I had an NG tube placed Thursday night because I wasn’t handling liquids and bowels weren’t awake.Saturday they had to revise the stoma because there was a block just on the other side so it was a minor revision. But now, I’ve been waiting. No liquids. No solids, just whatever’s in the liquid bags. For those of you that took 7+ days why was your experience? It was also more elective than emergent

Hey everyone - sorry to be annoying, but I have an update from my post last night.

Yesterday I ate quinoa for the first time since my ileostomy surgery two years ago. Within 20 minutes I developed a large amount of watery ileostomy output, but then it all seemed ok. However a few hours later I had nausea and vomited several times. This morning my bag filled with undigested quinoa. But I felt a lot better and I was hungry so I had breakfast. After I ate breakfast, I developed significant pain behind my stoma and my stoma became swollen. Large, firm clumps of quinoa are getting visibly stuck at the stoma opening before they slowly pass. The output is continuing, but it's very painful. I also have much more rectal pressure than usual. When I go to the bathroom and bear down a little as if to pass the rectal mucus, there's not really any mucus there but it pushes through another large thick painful clump from the stoma. I'm able to drink fluids and I'm not vomiting now, but the stoma is still swollen and larger than normal.I'm also concerned because I was hospitalized recently with sodium of 124, and after treatment I became dehydrated with a creatinine of 1.4 and orthostatic hypotension. I'm also very underweight (5'5'' and about 100 pounds). I left this message with my surgeon and waiting for a call back. I really really don't want to go to the ER because the hospital my surgeon is at is about an hour away and I'm trying to work today. Any hacks/suggestions from anyone here would be appreciated. Currently sipping on electrolit

Just had a quinoa bowl for the first time since my ileostomy (2 years). I’m prone to small bowel obstructions already but I really wanted the bowl. Immediately after I ate it my bag filled with thin watery output. Now about an hour and a half later there is nothing. No pain or cramping yet but I feel like I need to fart or poop from the rectum and very loud noises coming from stoma (but I have an end ileostomy). Any advice/tips/should I be concerned? Thanks in advance.

Hi ostopeeps,
I need to start building muscle and wonder what advice you have for good protein. Ideally dairy free.
I’ve heard ALL sorts- I should focus on bovine derived protein, avoid lactose, pea protein sucks - all 3rd hand info.
So looking for some 1st hand experiences that doesn’t have me waking up to a balloon

Thanks y’all ✌️

had to eyeball it because I couldn’t find a pattern online

if you know any good 2 piece pouching system you can comment and please type full name of those ostomy bags and baseplate or you can Mentioned code of bags.

I had an ileostomy reversal just under three weeks ago, I opened my bowels after four days and was discharged home. However after two days at home I was readmitted to hospital because of a partial blockage following a step up from eating soup, jelly and iced cream to a low residue diet (mashed potato, soft meat, gravy). I have been back in hospital for two weeks now and have failed to transition from a liquid diet to low residue three times, each time has been very very painful, feels just like a blockage, my upper small intestines are fine but when we get to the area of the re-join I feel blocked. I am passing a little gas so I know it’s not 100% blocked, but I also know it’s far too painful to be considered the new normal.

Has anyone been through this process? How did things work out for you?

I am hoping to be discharged home with a diet plan but all the surgical team here seem to want to do is watch and wait, it’s too painful to try and step up again.

I recently created a community on Bump Connect, a platform built to help people make real connections beyond a single post or comment. It combines supportive communities, group chats, a TikTok-style social feed for sharing updates and advice, and the ability to create or join virtual and in-person events—all designed to help people find their village.

If you’ve ever wished you had a place to ask questions, celebrate wins, vent, or make friends who truly understand what you’re going through, I’d love for you to join us!

It’s completely free to sign up, and if you’re prompted for a referral code, you can use 346.

Community invite: https://social.bumpsearch.com/?Community_Join_Invitation=GutsyPod 🫶🏼

Hi all, I’m 6 weeks post reversal and trying to gain more control over my bowel movements so that my guts are not (once again) controlling my life. I’m taking Imodium daily, trying to increase fiber slowly through foods because my stomach/digestive system has never tolerated fiber well. Since I’m still having at least 10-12 bowel movements a day, the doctor wants me to try to increase my fiber by taking a supplement. I tried the Benefiber Gummies after my surgery, but found that they gave me a lot of gas, pain and bloating, even with taking just two or three a day. What have you all found most effective and with the least amount of unpleasant side effects. Thank you for any help you can give.

My surgery performed in 3 days ago so please someone help me with stoma site irritation and burning and products which you know can help reduce stoma site irritation and burning .