Urgent Surgery Needed to End Years of Pain and Blockages

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20
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1431
Abefroman1969
Aug 10, 2022 12:55 pm

Decided to go forward with Ken/Barbie butt procedure the first week of June, had to wait 8 weeks for the 3 scope procedure and then 10 days for pathology.

So everything is good to move forward with the K/B butt, fixing parastomal hernia and prolapsed stoma. 
First offer for surgery was OCTOBER! I politely declined and asked for ASAP. Two plus years of blockages, ileostomy surgery, ridiculous amounts of pain and bills just stacking up, I literally can’t afford to wait.

The GI and the Surgeon both gave me their cell numbers, I’ve told them both I’ll be texting daily until I get a date for surgery. 
I can see the light, I just want out of this cycle of pain and helplessness. 

Thanks for reading and I hope to have things other than my Illness to talk about soon! 
Abe 

HenryM
Aug 10, 2022 1:13 pm
Very helpful

Power on, buddy.  You'll get to where you want to be soon enough.  Stay tough.  HenryM

Past Member
Aug 10, 2022 1:17 pm
Very helpful

Focus on the light ✨✨✨ I will cross my fingers & toes and anything else for you if I think it will help! 🤞🤞🤞 Sending loads of love and positive vibes your way! ❤️❤️❤️ Rant any time!!! Always, always here to listen. ❤️❤️❤️

Posted by: ejbetty

Geekyjen,

Thanks for the reply.  I will be seeing my doctor on Friday and mention Entyvio.  I did not remain paralyzed for more than 2 days, but it was terrible and I was so scared.  The doctors just used alot of xanax and other drugs like that to UN paralyze my joints that were being attacked by the remicade.  Turns out I have been diagnosed with LUPUS. It is attacking my nervous system.  I had ulcerative colitis in 1996 and they had to remove my colon.  Had a J pouch for 10 years, until it started failing.  I then got a permanent iliosomy, and I suffer from severe chronic diareha, and I dehydrate frequently.  I recently had a proctectomy, and that is when the new autoimmune disorder, Lupus, appeared.  I have had two hospital stays now because of the blisters and the paralyzing incident.  I will be dealing with this forever now.  I have just been working on acceptance.

I love this website because of wonderful people like you!

 

Betty

Abefroman1969
Aug 10, 2022 1:26 pm

Thank you Henry and Sally, I really appreciate the support. 
Since I had my ileostomy in January finding this site has been my go to for the people and the help, it’s been a great resource of health and levity, I appreciate all of you!

Abe

Homie With A Stomie NS
Aug 10, 2022 1:49 pm
Very helpful

You got this... stay strong, smile on...

We are with you, my friend.

 

 

My Ostomy Journey: Ryan | Hollister

Play
AlexT
Aug 10, 2022 3:28 pm

October isn't that far away. I wanted my surgery the day after I stopped the chemotherapy and radiation but had to wait 3 months until I could have surgery. I worked all through my chemotherapy, radiation, and up until 4 days before surgery, so that helped pass the time. Find some simple thing to occupy your mind/thoughts, and it'll be October before you know it.

bowsprit
Aug 10, 2022 5:15 pm

Persevere, Abe. Things will get better. All the best wishes.

Past Member
Aug 10, 2022 6:37 pm

Abe, I am so sorry you have to go through all of that. Can I ask why you have had so many blockages? I just got mine revised like a day ago, lol. She was beyond flat and retracted, and would get stuck sucked in my stomach, and then would swell; she was stuck on stupid, lol. I hope they get you in quicker and you have no more problems.

Abefroman1969
Aug 10, 2022 7:15 pm

Tentatively scheduled for the 17th, one week from today.

Beth,

My blockages were pre-ostomy, scar tissue in the colon basically decided it was time to just close the opening. When they did the ostomy, they had to clean out 11 liters of impacted stool. Insurance denied TPN, so I was forced to eat with no way to get it out.

Alex,

After 2 years, I've done what I can hobby-wise. This should have been done when I spent the entire month of May in the hospital but wasn't. The decision to proceed with the surgery was made the day after I got out of the hospital. So, I'm already 9 weeks into waiting. Also, physically and financially, waiting until October would be devastating to me. Luckily, the surgeon, like me, wants it done right away. Then, after I heal, I can get my own snow leopard!

bowsprit,

Thank you, I'm doing the best I can.

Homie with a Stomie

Thank you, Tracey. My doctors and nurses love your handle, and I don't appropriate it as my own.

Casper9
Aug 10, 2022 7:27 pm

Hang in there, Abe! 

Sending you strength and support. 💪❤️

Casper

Justbreathe
Aug 10, 2022 7:38 pm

Let me guess... due to Covid, there has been a delay in the shipment of Barbie Butts - sorry, but my attempt at humor is my modus operandi.

In all seriousness, you have been through so much - my heart goes out to you! Hopefully, those docs will be able to accommodate you sooner - in the meantime, I am hoping you can keep a positive attitude. Fingers crossed for you! Rants are good to get things out of your head - though laughter is better for your brain and well-being.

We are all rooting for ya - we'd be tooting too if we could - jb


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AlexT
Aug 10, 2022 7:51 pm

Has anyone told Abe about the initiation “jump in” to being a gang member? I hope he’s up to it. 😬😁

TerryLT
Aug 10, 2022 9:51 pm
Very helpful

Hang in there Paul.  You will get there!  I totally relate.  I had four surgeries in two years, plus several hospitalizations for blockages and had to wait for several months for my last one, then had it cancelled a few times (three or four? lost count) before it finally went ahead.  All good now, and it will be for you too.  Stay positive!  I know, easy to say.

Terry

nobecindy7
Aug 10, 2022 10:33 pm

Good luck, getting mine on September 1st, pre op on your surgery day. Hope all goes well, prayers!

Abefroman1969
Aug 11, 2022 10:26 am

Now wait just a second, joining a gang is quite possibly the worst hobby I can think of! 
😉

Abefroman1969
Aug 14, 2022 12:19 pm

Ken Butt has been delayed; my hidradenitis is too bad right now for skin grafts, so they are removing the rectal stump but leaving the anus. Also, possibly moving the ileostomy because of the prolapse and fixing the parastomal hernia. I can't wait to have the prolapse fixed, having 3-4” of intestine hanging out of my stoma bothers me to no end. Going in on Wednesday the 17th. Waiting on the pre-surgery COVID test, then in I go. Already confirmed my favorite nurse will be there when I'm admitted after surgery. I've been given zero info on a timeline for my stay after the surgery; I'm fine with that, they have been wrong on every estimate of recovery with me, I'm planning on a month.

AlexT
Aug 14, 2022 12:40 pm

Good luck. 

Caz67
Aug 14, 2022 12:49 pm

Good luck 🤞🤞 with the surgery and recovery, Abe. We're all rooting for you and awaiting your post when you get time. XX

Past Member
Aug 14, 2022 5:58 pm

Good luck Paul ❤️

Sobecool
Aug 22, 2022 1:31 am

Good luck! I have the same exact issues now where the stoma was repaired and then put on the left side; the right side has a tangerine-sized hernia. I am scared to do the Barrie/Ken butt. Do they say it helps? No one has approached me with this option. I wish you a speedy recovery!
Cheers,

Pascale

Abefroman1969
Sep 26, 2022 1:30 am

Pascal, I'm so sorry I'm just now seeing your post. You have been through quite a bit yourself!

I would ask your doctor about Barbie Butt, there must be a reason for them not suggesting it. There is no reversal from it, so if there is a chance your doctor thinks he can reverse your ostomy in the future, he won't suggest it.

Best of luck to you!