Logo for MeetAnOstoMate
Support | Friendship | Relationships
28,362 members

Some Good, Some Bad

Posted by Abefroman1969
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 surgeons 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, 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. 

See all blogs by Abefroman1969
Comments:
Apr 13, 2022 12:18 PM
HenryM : Hang in there, man.
Apr 13, 2022 1:04 PM
RaenotRay : 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! ????????????????
Apr 13, 2022 2:38 PM
delgrl525 : 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 very 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 routing for you! You are doing fantastic, whether you realize it or not. All the best to you, Terry
Apr 13, 2022 5:12 PM
Abefroman1969 : 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.
Apr 19, 2022 10:39 AM
Abefroman1969 : 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!
Apr 19, 2022 10:49 AM
Abefroman1969 : 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!
Apr 19, 2022 11:17 AM
Abefroman1969 : {llama emoji} now that's funny!
Apr 20, 2022 6:30 AM
Abefroman1969 : Finally going to the hospital to my actual surgeons 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. Have some anxiety as usual and 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 2 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.
Apr 20, 2022 12:20 PM
Abefroman1969 : Thank you Sally even though you aren't here physically you are my wingman, your support means the {world emoji} to me {hugs}
Apr 20, 2022 12:23 PM
Abefroman1969 : Oh yeah it actually went well, I hated my stoma nurse at first now that she and mostly I have loosened up I actually look forward to seeing her, and 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!
May 01, 2022 7:13 AM
Abefroman1969 : After my latest surgery the drainage and pain from my fistulas and abscess continues 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. Very lucky 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 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. Abe Aka Paul
May 01, 2022 11:50 AM
Abefroman1969 : 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 sprung a leak, caught it just in time! I was at 450ml or FULL, 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. 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!
May 02, 2022 1:52 AM
RaenotRay : 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?
May 02, 2022 6:56 PM
RaenotRay : That sounds amazing Sally! The beach AND a llama?!? I'm 100% in!