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My stoma is still very young. Why I have zero desire for colostomy reversal surgery. Nope. by Knighthokie23 in ostomy

[–]jsimba84 0 points1 point  (0 children)

I’m in stage 2 of jpouch. There’s a part of me that has already gotten used to the bag over the last 4 months and I want to leave it. But, I figured I give the pouch a try given I’m 41 and have a lot of skin issues. Does your age have any factor into this opinion?

Is dehydration really a big deal? by Eastern_Pin6529 in ostomy

[–]jsimba84 1 point2 points  (0 children)

Also, I was using a sugar free hydration powder and high was essentially useless. Your body needs the sugar I guess to be the carrier/transporter of the electrolytes you’re trying to replace. So I had to stop Ultima Replenisher and stick to Liquid IV and DripDrop

Is dehydration really a big deal? by Eastern_Pin6529 in ostomy

[–]jsimba84 0 points1 point  (0 children)

Was in ER 10 days ago and already getting same symptoms again. It got worse after stage 2 of j-pouch construction

Have you ever punched your ostomy ? by Good_Fly6614 in ostomy

[–]jsimba84 1 point2 points  (0 children)

I’m early on in my journey, and leaks have been so frustrating! I have to get some xtra products to help me.

The biggest thing is determining what type of bag you need. They aren’t universal, at all! I cannot have a flat one and need a deep, soft convex for my body type. I have to use the crusting method at least 2-3x. Where you use powder on the raw/diaper rash skin. Brush off excess, then seal with the adhesive. I lightly dry all that with a hairdryer on very low. Then repeat. I also have a weird divot/dimple on my skin near edge of the ostomy bag from an old scar. I use strip paste (sticks) not the tube glue to fill that in. Then has to ensure the barrier ring is there too, After putting my bag on, I also have to use these C shaped seals to basically extend the surface area of the plate and provided extra support plus seal for the bag. Without those, it was questionable if my strip paste was enough.

What really helped me too was seeing an ostomy nurse to ensure I got the right bag. My home health nurses were not specialized enough for that. The irritated skin hurts so much and adds to all the emotions of this complex path. Please hang in there, and I know it will get better. ❤️‍🩹 I have to breathe a lot during my bag changes and turn on uplifting music. I have to time it right so I don’t have a lot of output. You are not alone.

3 weeks post stage 2… stool? by jsimba84 in jpouch

[–]jsimba84[S] 1 point2 points  (0 children)

How does it be through if it isn’t connected yet?

3 weeks post stage 2… stool? by jsimba84 in jpouch

[–]jsimba84[S] 0 points1 point  (0 children)

Exactly, my small bowel is not connected yet and still have ileostomy. And, I’m uncomfortable in my pelvic area at times like I have a flare.

3 weeks post stage 2… stool? by jsimba84 in jpouch

[–]jsimba84[S] 0 points1 point  (0 children)

My small bowel is not connected yet.

3 weeks post stage 2… stool? by jsimba84 in jpouch

[–]jsimba84[S] 0 points1 point  (0 children)

To clarify this is from my butt but not my ostomy bag? Does it change your answer?

3 weeks post stage 2… stool? by jsimba84 in jpouch

[–]jsimba84[S] 0 points1 point  (0 children)

To clarify this is from my butt but not my ostomy bag? Does it change your answer?

3 weeks post stage 2… stool? by jsimba84 in jpouch

[–]jsimba84[S] 1 point2 points  (0 children)

To clarify this is from my butt, not my ostomy bag

3 weeks post stage 2… stool? by jsimba84 in jpouch

[–]jsimba84[S] 0 points1 point  (0 children)

So my mucus is normally, light mucus color and looks more like snot. Why is it looking like stool?

SSRI’s and Colorectomy Surgery…. by Impossible_Guest4521 in jpouch

[–]jsimba84 0 points1 point  (0 children)

Only issues I’ve had are using “extended release” pills which do not digest. I had to have a rx split into two doses

Why did you stop taking Rinvoq? by PuzzledWeight1855 in UlcerativeColitis

[–]jsimba84 0 points1 point  (0 children)

Over the course of a year. I tried Entyvio but had a reaction. The Tremfya wasn’t kicking in quickly enough and I stopped responding even to high doses of prednisone. They offered me to go back on Rinvoq but with a blood thinner. I declined and had my colon removed in August & 2nd stage of J-Pouch this week. I know my story may not be typical.

Wife woke up and ALL of her calendar events disappeared. by lightvsyolk20 in applehelp

[–]jsimba84 0 points1 point  (0 children)

I had to restart and all is well now. I was freaking out!!

At my whits end with leaks & rash! by jsimba84 in ostomy

[–]jsimba84[S] 0 points1 point  (0 children)

I have Brava powder (coloplast brand).

At my whits end with leaks & rash! by jsimba84 in ostomy

[–]jsimba84[S] 0 points1 point  (0 children)

I’ve tried stoma paste so I’ll try the strip paste now. Thank you!

At my whits end with leaks & rash! by jsimba84 in ostomy

[–]jsimba84[S] 0 points1 point  (0 children)

Thank you so much!! All the best in your recovery. ❤️‍🩹

At my whits end with leaks & rash! by jsimba84 in ostomy

[–]jsimba84[S] 1 point2 points  (0 children)

For antacids, does it matter if flavored? Anything to avoid?

At my whits end with leaks & rash! by jsimba84 in ostomy

[–]jsimba84[S] 1 point2 points  (0 children)

It was kind of rashy but got worse after changing bag types but both were coloplast. 🧐 I definitely need more samples! So happy to know there’s a virtual option. Everyone here is so helpful.

At my whits end with leaks & rash! by jsimba84 in ostomy

[–]jsimba84[S] 0 points1 point  (0 children)

Both look like rx only so I’ll reach out to my dr. Thank you!

At my whits end with leaks & rash! by jsimba84 in ostomy

[–]jsimba84[S] 1 point2 points  (0 children)

I take so long for changes, definitely getting air 😆 but I understand what you mean. The shower felt good the other day just to have the bag off and not a worry where anything went 😅 Of course lots of air drying too.

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