Appliance troubles and medical setbacks


Had a great week last week with my appliance. I managed to go 6 days, mostly out of laziness, without changing. Saturday I changed. Monday, at the surgeon's office, I sprung a leak and did a quick but I thought effective change. Just now, I was reminded it was a quick change as my appliance started leaking again.
I'm headed to the shower now and hopefully I get this one right and puts me back on my Wednesday/Sunday change schedule.

I'm so exhausted, not dehydrated, and am taking my meds. The doctor has now ordered imaging and my entyvio was halted to switch to remicade. Now that's on hold because the surgeon found an abscess, so I get to go have another procedure.

I'm not confident the remicade is an answer either as my body rejected it the last time they tried to introduce it.
I haven't been posting as much because I really just don't have the energy to engage.

I'm not looking for advice or sympathy. I just needed to get it out.


I have nothing to offer but virtual hugs. {hugs emoji, heart emoji} Miss your posts. {heart emoji}

Hang in there, man.
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You're doing an amazing job, Paul! We are all rooting for you! I hope you find something beautiful every day. Each of your small successes will add up to a dashing success with lots of character to boot. Soon you'll be the seasoned veteran telling everyone else how it's done. Hugs and love being sent your way, friend! ????????????????


Rae is right, one step at a time, sometimes one step forward, two steps back, or at least it might feel that way. But, you are getting there, learning every day. And you are always looking forward and trying to keep positive, even when it's really hard. And you know you can always reach out to us, and that we are all rooting for you! You are doing fantastic, whether you realize it or not. All the best to you,


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Hi Abe, one foot in front of the other and one day at a time. Try not to be discouraged by the bad days, there are many good days to come. It's such a huge change for the body and there is an adjustment period, I found that out. Hang in there, dude, and give updates, please.
All the best.
Eamon ??


Thank you everyone who liked and commented and respected my wishes, it really does mean the world to me. I'm sick and tired of being sick and tired.
Imaging isn't until the 28th.


My surgery is now April 23rd and my imaging has been moved to May 1st to give me a little more time to heal after surgery. I had the date wrong, my imaging was originally scheduled for the 24th. I know I won't be able to drive that day, so I rescheduled it.
Again, I want to let everyone here know how much I appreciate the support and am very thankful I found this site. It really does help me and my head. Thank you!


Good luck with your surgery. I will be thinking of you. Sending good vibes. {{{Hugs}}}


Thank you Sally {{Hugs}} right back to you!
Not to brag or anything but I've been told by lots of folks in real life that I give great hugs. One of these days I'll be able to give you a real one!


I will count the days, my friend! {{{Hugs}}} {smile emoji}{heart emoji}{hug emoji}{llama emoji}{maple leaf emoji}


{Llama emoji} Now that's funny!


Finally going to the hospital to my actual surgeon's stoma nurse this morning, this is my post-op visit. They have been backed up or on vacation since I had my ileostomy done on 1/26/2022. I have some anxiety as usual and am not looking forward to all that time in the car. This afternoon is my pre-op phone session with the surgical nurse. I got instructions for surgery prep, including an enema or two and the taking of mag citrate. I've already told the surgeon I will not be doing that.
Hoping it all goes well, there will be an appliance change at the stoma nurse appointment. I'm hoping they do it for me as I'm not a fan of having an audience during a change.
I hope everyone has a wonderful day. I'm back on the doctor/nurse appointment treadmill. Good, I'm sick and tired of being sick and tired!
Thank you all so much for the support y'all have given and continue to give me, along with advice when I ask for it.
I'm so glad I found this site and all of you.


Wish I could be your wingman/woman for this next step of your journey. I am here anytime so just reach out. Big Big {{{Hugs}}} {heart emoji}{smile emoji}{llama emoji}{happy poop emoji}{sunshine emoji}{friend emoji}


Thank you, Sally. Even though you aren't here physically, you are my wingman. Your support means the {world emoji} to me {hugs}.


Oh yeah, it actually went well. I hated my stoma nurse at first, but now that she and mostly I have loosened up, I actually look forward to seeing her. She did the full change herself for me. I was measured, cleaned, and changed. She also recommended a hernia belt and is working this afternoon on getting the belt for me, dealing with insurance and the supply company!


Wonderful news! 😊


After my latest surgery, the drainage and pain from my fistulas and abscess continue unabated. At least the bleeding has stopped. A seton was also placed at that time; it's uncomfortable.
This morning, I head to the hospital yet again for an MRI. I'm very lucky that my Ma is driving me to Foxboro, about an hour away. At most, I can only drive for 20 minutes without becoming a danger to others on the road. At least I get to see Ma and Gillette Stadium, home of the 6-time Super Bowl Champion New England Patriots and the New England Revolution soccer team.
I would really like to start wearing my underoos again, as the hospital underwear and gauze are kinda uncomfortable!
I hope this MRI provides some answers for the doctors to get my pain level down, so I can, at the very least, stop having to wear fentanyl patches.
I hope y'all have a lovely Sunday, and I hope to be home in time to watch the basketball game. Go Celtics!
Once again, I say thank you to all of you for your help, support, advice, and kindness. I would truly be lost without all of you.


Good luck with your MRI, Paul! I also hope they can help reduce your pain. {{{Hugs}}}


Almost had an appliance blowout on the way home! Luckily, we had pulled off the highway for a burger. I noticed that I could feel a bit more than usual and was worried I had sprung a leak. I caught it just in time! I was at 450ml or full. I grabbed my kit from the car and went behind a dumpster to empty while Ma was in the drive-through, just in the nick of time.
I was very irritated that the MRI prep mentioned nothing about not having my fentanyl patch on and was made to remove it. I just put the damn thing on this morning, and they wouldn't replace it, so now I'm short on my patches {angry face emoji}. Going to enjoy my burger now and celebrate catching my appliance before leaking!


Awesome save, Paul! 👍🎉❤️🍔👩🏻‍🍳💩


Aww Paul! I missed your updates until now. I'm so sorry you've had a tough time of it. My surgery was April 14th, and I've very selfishly been focused on me. Lol, but true. I love the way you ticked through the bad in a positive way. You are a new man in many ways I suspect. Character has a way of creeping into these dark days, and showing us what we're made of. I'm also sending you hugs and healing vibes. Also, a few llama emojis. Why not?


There is a place here in New Brunswick I want to take you, Paul Rae, when you visit. It is called Llama-zing Adventures. Everyone gets a llama to walk on the beach with! LOL It looks like so much fun! {llama emoji}{fun emoji}{happy emoji}{hugs emoji}{kissy face emoji}


That sounds amazing, Sally! The beach and a llama?!? I'm 100% in!


{Jumping up and down excited emoji}{Llama emoji}{Fun emoji}{Happy emoji}{Hugs emoji}{Kissy face emoji}

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