Hows class of 2018 surgery comrades doing??

Hi all - Yes, Andrina, of course you are welcome to this class! I would think all who consider their most dramatic surgery to be in 2018 (mine bridged 2017-2018) are part!
I started gaining weight about 5-6 months post reversal. I've put 10 lbs on since then! Gosh, since I am overweight to begin with, I sure want to stop this. I have been enjoying the way I look/feel for the first time since before my kids were born! (30 years!)

My big news is that I had my 1 year post-chemo CT scan, bloodwork, and oncology appointment, and all is fine. I know the CEA results are not back yet, and my surgeon has told me that's the number to watch, for cancer recurrence. But so far everything else is good, so I am going with that!

My zinc oxide cream (I use Calmoseptine, I like the "minty freshness" lol) and my portable bidet, basically a fancy squirt bottle from Amazon, keep me in a comfortable place. I took the squirt bottle on a recent vacation and will take it again when visiting relatives next week. And I'll bring it when I take a group to Europe in 6 weeks! (My hotel rooms might have actual bidets but I don't want to assume that.)

valli - you'd asked about my work. The trip above is something I'm doing as an extracurricular activity for work. In general, I am back to it, intensely, and my colleague and I have been taking turns taking vacation time all summer long. I have time off again this coming Monday and he'll be "it" - !

Champ... I am glad you have siblings to help with your mom. She sounds like a Rock, so I am sure you're all glad to be able to give back to her. But it's still tough. Having been through caregiving with my mom over the last few years and also having my own chemo experiences, I know it's a tough journey. Hang in there! The hernia hurts some, but it's hard for me to judge. I see the surgeon again in Oct and we'll talk about whether to fix it.

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Age 63. Diagnosed UP 1983, UC 1986
Step One surgery on 12/28/17.
Surgery: planned. The colon cancer they found: a surprise.
Prior meds: sulfasalizine, Asacol, Delzicol, Lialda,
6 MP, Humira, Metamucil
two hips replaced thanks to pred.
6 months of chemo finished 7/9/18
Reversal to J pouch 8/9/18

you're all still early out since your takedown. You will probably be able to pass gas in time. Three months is very soon after Andrina. Give it some time, things will continue to get better. I have a lot of loud noises on the toilet too, it can be embarrassing, and I'd love a bidet too! That's certainly a bucket list item for me. I feel like a toilet with a built-in bidet would be lifechanging for me. No more using so much paper... Have you been checked out for the joint pain? Perhaps you should see a rheumatologist?

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Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free
Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

valli1234 said...
Andrina yes voltaten gel helps with the joint pain.
I would assume a fever is common with pouchitis. Mind you I haven’t had a fever yet and have been battling pouchitis and cuffitis since my take down .

I don't think I have pouchitis. Would I be bleeding if I did? I have no idea how the inflammation of a small intestine looks like. I'm all too familiar with the colon inflammation. I wouldn't be able to tell. But overall I think my J-pouch is doing well. What kind of tests are done to determine pouchitis?

valli1234 said...
What is your gastro saying ?

He says: See you in 6 months.

Edit: My joints are now swelling. Both my ankles and my right wrist. I'm right handed. What could be the cause of this? I'm worried.

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UC since 2002
Colectomy 11/8/2018
J-Pouch creation 4/4/2019
Reconnection 5/28/2019

Post Edited (Andrina) : 8/17/2019 3:38:48 PM (GMT-6)

Hi Andrina -- I have no idea about your question, but have been concerned about you since your post of a few days ago. You really need to see a doctor -- a surgeon, GI or even your primary care physician. I hate to see you struggling so much when help could be available if you can find a doc who will listen.

Best wishes to you that you can find some relief!!

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60 yo female diagnosed w/UC to mid transverse 1/1/13, now UC or Crohn's colitis. Remission on Entyvio 10/2016-12/2017 before losing response. Had response to Humira with loading doses in Nov 2018, but then lost response. Current meds: Remicade 3/15/19, Asacol HD 2 Tabs 3x/day, Capozide 1/day (hypertension). Dexilant.

Sounds like you are taking the right steps to find some answers and hopefully get treatments that can help you.

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60 yo female diagnosed w/UC to mid transverse 1/1/13, now UC or Crohn's colitis. Remission on Entyvio 10/2016-12/2017 before losing response. Had response to Humira with loading doses in Nov 2018, but then lost response. Current meds: Remicade 3/15/19, Asacol HD 2 Tabs 3x/day, Capozide 1/day (hypertension). Dexilant.

I haven’t been on here in so long! I am glad everyone from class 2018 is doing well!🤣 I never got the reversal because they don’t really know what’s wrong with me (surprise surprise) which I am perfectly fine with an Ostomy, I don’t think I ever want a reversal because it’s easier with the pouch with the way my life functions. I feel healthy and better than ever though! And am glad everyone’s reversals went great!

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Diagnosed at 7, in the gray area between crohns and UC. Surgery on Jan 27, 2018 #nocolonstillrollin

Colitisresearch Yes!- by no means perfect, but compared to what I was like before I feel pretty amazing. I am lucky to have no skin issues and am able to get exactly what I like and need! Happy your reversal went well and you are doing good!

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Diagnosed at 7, in the gray area between crohns and UC. Surgery on Jan 27, 2018 #nocolonstillrollin