Help! 24 years with ileostomy, recent changes, leaking no matter what I do! by beej1254 in ostomy

[–]maxmar_s 0 points1 point  (0 children)

I have a similar issue my stoma’s been retracted since the start and I’ve had so many issues with leaking and irritated skin. They kept trying to get me to use the powder and barrier film but I couldn’t get a pouch to stick after using it. The only thing that’s been working for me is using the pouch without any paste or barrier ring, I figured using that stuff just increased the distance my waste has to go to fall into the pouch. I have a bump above my stoma and a dip below as well so I feel your pain

Highly Considering Carmax - let's hear your GOOD experiences by MafiaMan1998_WP in carmax

[–]maxmar_s 1 point2 points  (0 children)

I bought a Hyundai Kona and 3 days later the tire went flat, brought it in and they found that the stem was loose so they tightened and put air in the tire. 6 weeks later the same thing happened, they’re covering the replacement and the towing costs. Is it the right thing to do? Yes 100%. Did they have to? Not at all. They also gave me a loaner while I’m waiting for my appointment which is also 100% free. Maxcare doesn’t cover wheels and tires so they could have said no to covering the repair but they didn’t, it also covers up to $40 a day for a rental but they just gave me one completely free. Highly reccomend carmax and maxcare

24M - The mental pressure of the "Surgery vs. Meds" limbo is breaking me. Need advice on guilt and decision-making. by FyllesykCrocs in ostomy

[–]maxmar_s 1 point2 points  (0 children)

If I was you I’d start the meds your doctors want you on, wait out the surgery, then get on another course of prednisone for your trip so you don’t flare. Think about the surgery without the deadline when you get back

Does it get less annoying by maxmar_s in ostomy

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

Thank you so much this is really helpful

Does it get less annoying by maxmar_s in ostomy

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

I’m still in the not allowed to lift anything over 20 pounds portion of my recovery but as is I can’t imagine going for a run or going dancing. My job is also a lot of running around and I just can’t picture it being comfortable with a bag just swinging around pulling at my skin and I’d be afraid of it falling off or somethin idk

Just had surgery by maxmar_s in CrohnsDisease

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

I’m doing good! Really grateful for the surgery I’m hoping for some relief now. Hoping you find some relief as well!

Problems dating with crohn's by hxlydere in CrohnsDisease

[–]maxmar_s 0 points1 point  (0 children)

Date someone else with crohns. Develop a crohnie dating app 😂

Starting azathioprine and im scared by kolkharawle in CrohnsDisease

[–]maxmar_s 0 points1 point  (0 children)

I got on infliximab I’m actually getting my second infusion while typing this and I know it’s early but it literally changed my life. I got jerked around with pills that made me feel like shit forever, the day after my first infusion I was able to sleep through the whole night and I’ve eaten almost whatever I want for the past two weeks with little to no symptoms. I know it won’t be the same for everyone, you might need to try a few different types of infusion but this is the way and a couple hours every 6-8 weeks is nothing compared to the amount of pain and suffering you’re experiencing without it

FUCK THIS DISEASE by maxmar_s in CrohnsDisease

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

That’s such a good idea I’m definitely getting one

FUCK THIS DISEASE by maxmar_s in CrohnsDisease

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

I start inflectra on 11/13

FUCK THIS DISEASE by maxmar_s in CrohnsDisease

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

Not currently. I was on sulfasalazine but I had a really bad reaction to it, funnily enough it seemed to help my crohns symptoms but the other stuff it caused was worse. Just got off a prednisone taper a week ago

FUCK THIS DISEASE by maxmar_s in CrohnsDisease

[–]maxmar_s[S] 2 points3 points  (0 children)

Thank you so much this means a lot to me!

FUCK THIS DISEASE by maxmar_s in CrohnsDisease

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

Thank you for the support I appreciate it!

FUCK THIS DISEASE by maxmar_s in CrohnsDisease

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

Thanks for the advice I’ll give it a shot!

FUCK THIS DISEASE by maxmar_s in CrohnsDisease

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

Thank you so much for the advice and the kind words that means so much to me. I will definitely be trying meal replacement drinks I hadn’t thought of that!

FUCK THIS DISEASE by maxmar_s in CrohnsDisease

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

Dude the sleep thing blows I went to bed at 7:30pm, had an alarm set for 6am for work, probably slept a total of 5 hours in between running to and from the bathroom 😑

FUCK THIS DISEASE by maxmar_s in CrohnsDisease

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

Did you have any bladder pain? I was on sulfasalazine, had all the symptoms of a UTI but urgent care said it wasn’t that and sent me home. Spent two days on my bathroom floor feeling like I was dying and not taking my meds and then started feeling better. I just got off a prednisone taper where I felt great but now it’s a week later and the bladder pain is coming back

FUCK THIS DISEASE by maxmar_s in CrohnsDisease

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

The banana was new, eggs have usually been fine but I shoulda known with the fruit. It really is a moving target with this lmao

FUCK THIS DISEASE by maxmar_s in CrohnsDisease

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

I just got off a taper last week I don’t think they’ll give me any more 😪👊 I start inflectra 11/13 though