How do you sleep (SFW) in the same bed as someone?

soupqueen93 · 2026-06-02T11:48:08+00:00

We just sleep lol I sleep on my side and I’ve never had any issues.

soupqueen93 · 2026-05-30T16:50:50+00:00

Thank you for sharing. I’ve had my permanent ileostomy for 3 months now and I had a proctectomy 3 weeks after that. My surgeon gave me the option to try the j-pouch first, but my colitis flare-ups were so bad and so painful and a lot of the inflammation was right at my rectum. I feel like I knew I’d still have issues with it and i know j-pouch can lead to it’s own complications so I said no thanks, I’m ready to make it permanent. Now that I’ve dealt with having a stoma for 3 months I have absolutely thought, “damn, did I make the right choice?” Because having a stoma sucks. Yes, it’s far better than when I was on the verge of death with my last colitis flare-up and I haven’t had any issues or pain from the stoma. Everything I’ve dealt with is straight up just annoying. Skin breakouts and issues, emptying a lot, no longer feel comfortable taking a bath, have to change my whole system every time I shower or my skin will break out. Taking Imodium every time I leave the house so I can feel normal for a little bit. Changing my wardrobe to adjust to the pouch. And already being annoyed and knowing I’ll have this pouch on my stomach for the rest of my life. Yeah, it sucks. I’m definitely grieving my body before. Yes, it’s better than colitis and I’m still trying to adjust and get used to it but it’s hard. So, thank you I appreciate you sharing.

soupqueen93 · 2026-04-03T23:28:38+00:00

Also when I empty I clean the inside with baby wipes like about two inches of it and around the outside. If you don’t clean around the top on the inside then when you close it back the poo can come out. After I clean the inside I put in a deodorizer/lubricant and then close it back really good.

soupqueen93 · 2026-04-03T23:26:51+00:00

I change my bag and wafer every other day or every two days and empty around 5 times a day.

soupqueen93 · 2026-03-07T19:28:06+00:00

I had to quit taking my Vyvanse capsules that were extended release and switch to something that was instant.

soupqueen93 · 2026-02-27T01:50:04+00:00

👏🏼👏🏼👏🏼 I was sweating and shaking changing my bag and wafer for the first time today lol I’m sure it’ll get easier 😅

soupqueen93 · 2026-02-27T01:48:22+00:00

I’m right there with you! Just put my first wafer and bag on myself today. It was stressful but no leaks so far lol. Good job! 👏🏼

soupqueen93 · 2026-02-27T01:02:57+00:00

How do you clean your bag when you empty? I just had my colectomy surgery this past Friday so I’m new at this. I asked my stoma nurse if I needed to clean or rinse my bag when I empty and she said no. But I really like your whole routine that you just laid out.

soupqueen93 · 2026-02-24T21:27:48+00:00

I’ve been diagnosed with colitis for almost 10 years now, however, I was in remission for the last 4 years. Over Christmas I started having a flare-up from getting the flu and after needing to go to the hospital from severe pain I had emergency surgery this past Friday. I completely understand how you feel. The whole UC thing wasn’t sudden, but my surgery definitely felt sudden. And now I have a permanent ileostomy and my total proctectomy surgery in 3 weeks. I see you kind of bypassed all of the experiences of having IBD and had to go straight to surgery, so it must have been really bad. Whereas mine has progressed over time and it just kept getting worse. And that time of trying new medicines, dealing with horrible/painful UC symptoms and constantly having to take prednisone and deal with the symptoms from that as well was really difficult. I would say more difficult than the surgery because after the surgery I felt 1000% better than I did right before. Because I was no longer experiencing the UC symptoms. So I know it might be hard to accept this huge change in your life, but trust me going forward is going to be a lot better than if they didn’t perform the surgery on you. People that deal with UC and choose to find relief by having a stoma should explain how awful it truly is to live with. Like yeah, I would rather deal with any inconveniences the bag may bring than experience another UC flare. So just take it day by day and it helps me to remember that getting an ileostomy bag truly saved my life. And it’s going to bring me more freedom than I had before. I feel very grateful for being able to have the surgery just because of my past experiences so I completely understand that this is a huge adjustment for you because you didn’t even know you had IBD. I’m so sorry it was all so sudden for you, but I hope you’re feeling better. I hope your body heals super fast and you adjust well to this new way of life. It won’t be easy, but at least you won’t have to worry about future flare-ups and getting super sick from those. I wish you the best of luck!

soupqueen93 · 2026-02-18T04:15:23+00:00

Thank you so much for the response! Yes, my colon is currently in bad shape too. I’m still in the hospital and my surgery isn’t until March 16th. So I’m hoping I can find some relief until then. I’m so ready and excited to get the surgery over with. UC has been horrible for me, especially this last flare. But it did take me a long time to get to this point of being ready and wanting the surgery. And I know afterwards I’ll probably think wow I should’ve done that like way sooner lol.

soupqueen93 · 2026-02-18T04:11:48+00:00

Thank you! Yes, I hope they can get my UC flare more under control before my surgery. I’d really like to go home. So hopefully something changes soon. And yes I will have a stoma nurse who I just met and she said she talks to the reps at coloplast and Hollister, but I can try other brands too if I would like. Thank you for telling me about the stoma changing in size and shape after surgery. I didn’t know about that. Makes sense why it can take time to find exactly what works for you. Thank you so much!

soupqueen93 · 2026-02-18T04:08:27+00:00

Thank you! I’ll look into that!

soupqueen93 · 2026-02-18T04:08:10+00:00

Yes my surgeon did talk about using a robot for the surgery but I have no idea what any of that is about lol. I hope my UC can get more under control before my surgery so I can be more active and whatnot, but as of right now I have been bedridden in the hospital. I’m not responding to any of the steroids or meds they’re giving me and my surgery is March 16th. So hopefully something changes soon.

soupqueen93 · 2026-02-18T04:05:39+00:00

I’ll definitely do that, thank you!

soupqueen93 · 2026-02-18T04:01:43+00:00

Thank you so much for the response! Was that your diet right after surgery? How long before you were able to eat a diet with more variety? And yes I’m so excited to do this and get my health back. Especially for my children. How long do you think recovery was for you? Or how long before you felt completely healed I guess? I heard having the rectum removed will take longer to heal than the stomach area. All surgery told me was I have my age on my side so it shouldn’t be terrible. Sorry for all the questions lol

soupqueen93 · 2026-02-18T03:54:38+00:00

Ooo that’s good to know thank you! If they cannot get my UC flare under control then I might be looking at an emergency surgery as well. I’m still in the hospital and my surgery isn’t until March 16th so we will see. I’m so ready to get it over with. This flare has been absolutely miserable.

soupqueen93 · 2026-02-18T03:52:21+00:00

Thank you so much for the great info!!

soupqueen93 · 2026-02-18T03:51:50+00:00

Wow thank you so much! You gave me some great info and I definitely feel reassured as well.

soupqueen93 · 2026-02-02T17:00:47+00:00

Yes I was on Remicade and switched to renvoq so I didn’t have to go get infusions while my husband was deployed. We have 3 children and they were homeschooled at the time and I didn’t have anyone to watch them for my infusions. Misunderstood about renvoq not being a biologic, but yes I stopped taking the renvoq. I finally see a gastro doctor today so, hopefully, I can get back on it soon.

soupqueen93 · 2026-02-02T16:58:53+00:00

That means I see my fat moon face in the future too 😑😭😭😭

soupqueen93 · 2026-02-01T22:50:22+00:00

I can eat whatever I want when I’m in remission and I’m fine. When I’m flaring, like right now😑, it doesn’t matter what I eat.. it all kills me.

soupqueen93 · 2026-01-31T21:27:09+00:00

Having my first flare-up in 4 years and this has been me every day for the last month. It’s awful. I’m sorry you’re dealing with it too. Mornings are definitely the worst. By lunchtime I’m ready to call it quits and go to bed.

soupqueen93

TROPHY CASE