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Hows class of 2018 surgery comrades doing??

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Ulcerative Colitis
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Woogy
Regular Member
Joined : Apr 2004
Posts : 215
Posted 8/14/2019 9:58 AM (GMT -7)
Hey class/j-pouchers! I wanted to let you all know about a product I'm using on the advice of my naturopathic doc. It's called GI Benefits, made by DaVinci Labs. I completely forgot to mention it in my original post. I believe this has helped with my pouch and having formed stool. I take it everyday and noticed this past weekend I was so busy I forgot and it all went back to being liquid. Started back on Monday with lunch and by the evening I was back to normal. I do mix this with Amazing Greens powder as I don't get enough vegi's in my diet, but you don't have to. I just thought I would let others know since it's helped me. ;-)
~Diagnosed in 2001 - Left Side UC
-Vit D, Vit C, Multivitamin

Previously tried colozal, lialda, asipro, sulfasalazine, rowasa, canasa, hydrocortisone enemas, Imuran and Humira - they all failed or made symptoms worse.

**Step 1 of 3 - Surgery on 1/29/18**
**Step 2 of 3 - Surgery on 8/6/18**
**Step 3 of 3 - Surgery on 11/12/18**
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songlady
Veteran Member
Joined : Aug 2009
Posts : 3776
Posted 8/14/2019 2:31 PM (GMT -7)
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.
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
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Andrina
Veteran Member
Joined : Aug 2011
Posts : 3480
Posted 8/15/2019 12:07 PM (GMT -7)
I'm originally from Europe and bidets are still rare. I don't think that hotels have them. So bring your squirt bottle 😊
UC since 2002
Colectomy 11/8/2018
J-Pouch creation 4/4/2019
Reconnection 5/28/2019
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17515
Posted 8/15/2019 7:31 PM (GMT -7)
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?
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
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valli1234
Regular Member
Joined : Aug 2017
Posts : 422
Posted 8/16/2019 11:49 PM (GMT -7)

Andrina said...

valli1234 said...
Why do you have a fevers everyday ?

I would like to know the same. Before the colectomy I had daily low temperature like this and I was in Tylenol every day. I was flaring.

valli1234 said...

Try the voltern rub it helps my joints I only use extra strength.

Do you mean voltaren gel?

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 .

What is your gastro saying ?
49 year old female mother of 4
UC since 1993 remission off and on
The last flare-up was 2008 till 2009 remission till June 2017
Hospitalized November 2017 for 5 weeks
Anemia 4 blood transfusions in hospital
prednisone, asacol, pentasa,encort enemas, steriod enemas, hurmia all failed
Dec/17 Total colectomy
March/2018 2nd surgery J pouch
Take down 3rd surgery Aug/ 18
Cuffitis sept/Mar 2019
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Andrina
Veteran Member
Joined : Aug 2011
Posts : 3480
Posted 8/17/2019 9:16 AM (GMT -7)

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.
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)

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Andrina
Veteran Member
Joined : Aug 2011
Posts : 3480
Posted 8/21/2019 3:33 AM (GMT -7)
My joints are hurting and swelling please I need help. What could this be and what do I do?
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 1295
Posted 8/21/2019 10:10 AM (GMT -7)
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!!
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.
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Andrina
Veteran Member
Joined : Aug 2011
Posts : 3480
Posted 8/21/2019 10:19 AM (GMT -7)
Thank you. I met with my gynecologist for the vaginal mucusitis and received antibiotics, lidocaine and hydrocortisone suppositories. I think it already started to heal but I keep getting the canker sores in my mouth so I wouldn't be surprised if it comes back. I will meet with her again next week. I also setup an appointment with my GP for my joint problem and see if he has an idea and maybe he can give me a referral to a rheumatologist. My suspicion right now is rheumatoid arthritis and it fits with the fevers and the swelling.
UC since 2002
Colectomy 11/8/2018
J-Pouch creation 4/4/2019
Reconnection 5/28/2019
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 1295
Posted 8/21/2019 3:51 PM (GMT -7)
Sounds like you are taking the right steps to find some answers and hopefully get treatments that can help you.
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.
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17515
Posted 8/21/2019 8:09 PM (GMT -7)
That sounds like a good plan. I am happy you're moving forward. I am sorry you were hurt by the way things went with your surgeon. I am sure it was a misunderstanding, but there's not much you can do at this point, and you need to get yourself in a place where you can feel good and be happy. Let me know how it goes.
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
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Mak37
Regular Member
Joined : Jan 2018
Posts : 328
Posted 8/22/2019 2:03 AM (GMT -7)
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! smile
Diagnosed at 7, in the gray area between crohns and UC. Surgery on Jan 27, 2018 #nocolonstillrollin
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colitisresearch
Regular Member
Joined : Mar 2018
Posts : 75
Posted 8/22/2019 6:54 PM (GMT -7)
Mak37- I had my reversal last fall and I have to say that while I’m happy with my decision- I can totally see now why people are OK living with the ostomy. If you don’t have any skin issues and you get the equipment you like.. it can make life a lot easier. Never thought in a million years I would feel that way but I was surprised at how easy it was.
Good luck to you!
45 yr old woman, diagnosed in fall of 2014 6 months after having 2nd baby. tried just about every drug under the sun with no luck. also tried probiotics, supplements and accupuncture.
Jpouch surgery step1 of 2 August 2018. Final surgery scheduled for nov 2018
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Mak37
Regular Member
Joined : Jan 2018
Posts : 328
Posted 8/30/2019 6:32 AM (GMT -7)
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! smile
Diagnosed at 7, in the gray area between crohns and UC. Surgery on Jan 27, 2018 #nocolonstillrollin
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