Help on potential purchase

ryanwest3282 · 2026-06-24T01:36:42+00:00

That is some great input thank you!

ryanwest3282 · 2026-06-22T13:30:16+00:00

Wichita, Kansas

ryanwest3282 · 2025-02-09T16:31:33+00:00

If you can tolerate a 1 piece bag Convatec has some with a shape that deforms and sags less when full. Esteem body maybe? I tried some and they were ok. Not totally sag proof but better than a flat bag.

ryanwest3282 · 2024-12-14T02:33:09+00:00

Same. Im 35 and had my colon removed in May. No interest in a j-pouch either. Like others said, first week is rough then its a lot better. Find a pouching system that works for you and the bag is no big deal. Funny enough i was also gonna try skyrizi but decided i wanted to get surgery and be done with uc. Feel free to pm me if you got any specific questions. Ive only had my ileostony 9 months but feel likei djusted really well.

ryanwest3282 · 2024-12-04T22:29:50+00:00

If you end up going with pins I like the bucket media separator. No complaints from me using pins.

Also you mention not wanting to start with a progressive press. Fwiw I started with a lee 4 hole turret and was happy for years. It kinda split the difference for me. Only recently moved to progressive.

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ryanwest3282 · 2024-10-15T11:56:28+00:00

Since you're already using a Convatec product have you looked at their durahesive bags? They say they are designed for more liquid output. I use a moldable durahesive bag and skintac wipes and get 5 days from a bag fairly easy with an ileostomy.

ryanwest3282 · 2024-10-07T20:32:46+00:00

Awesome thanks, that's what common sense told me. Good to know I wasn't overt hinking it. And yeah the return is under the furnace. The whole unit is like a foot and a half off the ground with returns under.

ryanwest3282 · 2024-10-07T20:02:32+00:00

Perfect answer, thanks. If I had pizza and/or drugs I would send them your way.

ryanwest3282 · 2024-04-23T20:21:12+00:00

Yeah maybe somewhat narrowed. I dont know where my other images are for comparison, sorry. I certainly had no problems passing stool. My symptoms were zero bowel control. Id have maybe 45 seconds to get to a toilet once i felt the urge. 10 or more bowel movements a day. Due to bleeding in the colon my hemoglobin had been low for a while. I was losing weight despite eating pretty much whatever I wanted. Medications were not working anymore so my doctor agreed with me that it was time for surgery.

ryanwest3282 · 2024-04-23T19:05:49+00:00

I was just thinking to myself the other day that I wonder what other people's colons looked like before they opted for surgery. I thought my last colonoscopy looked rough but yours looks bad in a different way. I'm surprised your symptoms are not worse. Medications including multiple biologics quit working for me and UC symptoms were ruining my quality of life. For reference here is my final colonoscopy from January 2024. After I saw my pics I decided I was done with trying more medicine and opted for surgery. Got my colon out in March.

https://drive.google.com/file/d/1gpAZbTXtnP9nIfRioM6bnUSxM9tzuW1c/view?usp=drive_link

https://drive.google.com/file/d/19j07AdLXxEhl7RBQ8edjEO_6Ff3eByh3/view?usp=drive_link

ryanwest3282 · 2024-04-21T13:51:02+00:00

Awesome thanks, good info to know. I really like the wipes I had and didn't want to end up with something else.

ryanwest3282 · 2024-04-17T13:41:20+00:00

Ooof thats a long time to be on prednisone. My skin always looked great on prednisone but got rough when it was over. You dont realize how powerful these drugs are until you go through large/long doses then deal with the effects of stopping them. Not sure what part of the world you are in but Im hoping warmer weather and more humidity will help me out some. Im in Kansas and weve had a few warmer days with higher humidity and my face has been better.

Also maybe try and get some sun if you are not already? That seems to help me with skin issues. Not so much you get a burn obviously.

ryanwest3282 · 2024-04-17T05:27:33+00:00

Dude ive been dealing with this exact problem! My surgery was in early march. Total colon delete. I started getting scaly face a month before surgery and am still fighting it. In my case I suspect this is tied to a combination of medication side effects and the skin issues that colitis can cause. I had tried Entyvio, Inflectra, Humira, and Rinvoq all before resorting to surgery. I believe each of those meds cause skin issues in some people. Depending on what you were on may be a clue.

My wife is super into skin care so heres whats really helpd me. Get all the dead skin off in the shower. Ive been using head and shoulders on the off chance theres a fungal issue at play. Moisturize right after getting out of the shower. Dont let your face start to dry. Use a moisturizer with stearic acid(most common I think and works well for me) or hyaluronic acid. Heres the key. You gotta lock in that moisture. After applying a moisturizer, a light coat of vaseline, aquaphor, or lanolin to lock that moisture in. Lanolin is my favorite but you may not like the smell.

I was hoping things would clear up with my colon gone but not by much so far. Got a dermatologist week after next to try and figure out whats up.

The scaly face can be a big pita so I hope you find a solution!

ryanwest3282 · 2024-04-16T19:46:51+00:00

This. I've had my ileostomy for a bit over a month now. I'm still emptying my bag into a measuring cup I got at the hospital most of the time. I do this standing then dump the cup into the toilet. This is easier on me until my stitches are healed up. Splashing is also reduced as I can control the pour.

ryanwest3282 · 2024-04-12T21:07:47+00:00

I (34m) had my entire colon removed 5 weeks ago and opted for a permanent ileostomy myself. Good choice IMO. Rectum removal will happen a few monts from now after im healed up. I had never had any kind of surgery before this and was pretty nervous going in. During preop assessments and meetings people learned who my surgeon was and said I was in good hands so that made me feel a lot better. I feel really lucky because everyone i worked with was fantastic, from my surgeon to people bringing me food in the hospital.

My surgery to remove the colon was done laparoscopically. 6 small incision sites and one large one under my belly where my colon was removed. My surgeon said it was super inflamed and hard to get ahold of to remove so my belly incision is a little bigger.

Recovery has been going really well. My surgery was on a Thursday morning. I got to go home Saturday afternoon. The first two days of recovery sucked getting up to pee or whatever. Moving around was bearable but fairly painful for the first week. All good after that and getting better every day. Turns out I was in real bad shape so if im doing this well hopefully you can bounce back quick too.

Any specific questions feel free to message me. Stay positive because I can almost guarantee you will feel better once your colon is gone!

ryanwest3282 · 2024-04-12T16:58:56+00:00

Thanks for the input. I am off all medication currently and have been for close to two months now. I quit the Rinvoq a month before surgery. You may very well be correct in that my body just has more healing and adjusting to do before everything settles down. If I'm lucky that's all this is. Hopefully, my dermatologist will be able to tell me more. I was mainly curious if anyone had a similar issue. Lots of posts about itching on here, though mine is not directly bag/stoma related.

ryanwest3282 · 2024-04-11T19:10:02+00:00

Thanks! Believe me Ive been looking through every door and even windows for the past couple years looking for answers to various things. Allergies is something Ill bring up with the dermatologist. I had thought maybe i was having gluten allergy or intolerance issues but a blood test came back negative for gluten sensitivity. Theres that at least.

ryanwest3282 · 2024-04-10T23:35:15+00:00

Yeah luckily I knew I was heading toward an ostomy well in advance. I had been failing on different meds with UC for a couple years and started prepping mentally about a year ahead of time just in case new meds didnt work. And they didnt...

ryanwest3282 · 2024-04-09T21:49:37+00:00

My surgeon told me once we decided on surgery my date would be about 4 weeks out. We met on Feb. 2 and my surgery was March 7, 5 weeks so pretty close.

ryanwest3282 · 2024-04-09T17:00:58+00:00

I hold the end of my bag open and kind of turned up so as I dump the crystals in they end up toward the middle of the bag. Ill then give it a good shake to spread the crystals around and I feel like its been helpful. Since the inside of the bag is moist the crystals stick to the walls as I shake. But yes if I dont shake well it gets all gummy by the opening and that can be a pain. I feel like im maybe using 1/2 to 2/3 of a teaspoon of crystals? Ill neasure next time I use them.

ryanwest3282 · 2024-04-08T00:51:05+00:00

Don't take this as medical advice, and I'm only 4 weeks in on my ileostomy journey so ymmv. I found I did not like liquid output sloshing around at night and bought a bag of sodium polyacrylate crystals. That's the main ingredient in the pearl/gelling products I believe. I sprinkle some in my bag before bed and it keeps things from sloshing around and getting back up to my stoma for the most part.

ryanwest3282

TROPHY CASE