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notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15256
   Posted 10/19/2017 11:35 AM (GMT -7)   
I am still thinking about you and hoping you're getting better quickly. Check in when you can.


We want to hear how you're doing. idea
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

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.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15256
   Posted 11/10/2017 4:37 PM (GMT -7)   
Plucky, how are you doing now that it's been a few weeks?
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

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.

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 347
   Posted 11/11/2017 9:11 AM (GMT -7)   
NSSG!
I didn't see your original post or I would have replied (I was 2 days post-op so still pretty loopy on meds). Thank you for thinking of me!

I am now 3.5 weeks post-op and no regrets--the surgery has given me my life back.

I had resigned myself to being a "chronically ill" person and living life with limitations, pain, fatigue, and constant medical attention. I couldn't imagine having the stamina to continue my education, work outside the home, or be a competetive athlete the way I once was. I had been trying and failing for years to "get better" and it was 2 steps forward, 3 steps back. So I thought it was time to accept my limitations and not have goals and expectations for myself beyond managing my health and my family/home as a stay at home mom.

But now, I feel like I can do anything!

Maybe I'll return to school for nursing...maybe I'll become an ostomy nurse...

Maybe I'll start that gluten-free bakery that I've dreamt of...

Maybe I'll have the second child I've hoped for...

I definitely plan to run a marathon at some point--it's a bucket list item for me as I'm a bodybuilder and not a runner, but just always wanted to accomplish it as an athlete. I just bought a stealth belt and look forward to being able to work out again soon.

I'm still figuring life with an ostomy, but it's quite manageable even on a bad day. My biggest challenges post-op really have nothing to do with my ostomy. I'm still anemic and I'm weaning off the prednisone, which are the physical equivalent of dragging around a ball and chain--frustrating and exhausting--but I still feel 100x better than I did prior to surgery.

So, I'm good. I mean, compared to how I was prior to surgery, I'm great! 😉
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Total Colectomy Oct. 2017!
Previously used: Remicade, Humira, Stelara, Imuran, 6MP, Apriso, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam, Prednisone
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10854
   Posted 11/11/2017 9:18 AM (GMT -7)   
I like the gusto! Sounds like you're doing great for a few weeks post-op. I bet you'll kick-butt at that marathon smile
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

I believe that my anus is a portal from Hades as only evil comes out of it.

quincy
Elite Member


Date Joined May 2003
Total Posts : 29798
   Posted 11/11/2017 9:24 AM (GMT -7)   
Wow.....sounds like you are doing pretty darn good compared to before surgery. Hope the anemia improves so that the ball and chain is soon released!

Hugs,
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15256
   Posted 11/11/2017 10:16 AM (GMT -7)   
That's amazing. I am so happy you're getting your life back. It may be the right time for the baby, it will be so great for you to be able to focus on doing what you want, and not on your health. It has been a long time since you've had that luxury. I have thought about the ostomy nurse career. I think a nurse with an ostomy would be awesome. You would definitely have an advantage, both in knowledge, and in understanding the emotional aspect of mentally preparing for the surgery. I loved my ostomy nurse, she was so strong and positive. I would have never thought about that as a path if I hadn't been through all this. It would just be so much schooling for me unfortunately. Are you almost off pred?
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

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.

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 347
   Posted 11/11/2017 10:56 AM (GMT -7)   
notsosicklygirl said...
That's amazing. I am so happy you're getting your life back. It may be the right time for the baby, it will be so great for you to be able to focus on doing what you want, and not on your health. It has been a long time since you've had that luxury. I have thought about the ostomy nurse career. I think a nurse with an ostomy would be awesome. You would definitely have an advantage, both in knowledge, and in understanding the emotional aspect of mentally preparing for the surgery. I loved my ostomy nurse, she was so strong and positive. I would have never thought about that as a path if I hadn't been through all this. It would just be so much schooling for me unfortunately. Are you almost off pred?


Yes I agree with you that nurses with ostomies or who have had ostomies have a lot to offer to ostomy patients. And there is a shortage of ostomy nurses, from what I've heard. I have a BA in communications, and actually had started taking classes--prerequisites for nursing school. I completed anatomy and physiology courses (A&P) in 2013 and was top of my class. Then my UC became very active, we moved, and I got caught up in infertility treatments/pregnancy/parenting. I just need a couple more prereqs and then I can apply for nursing school. There is a time limit (like 5 or 7 years?) and then I'd be required to re-take my A&P classes, which are very difficult, so if I want to go the nursing route it'd be best to do it soon so I don't have to waste time and money re-taking A&P.

I am down to 22.5mg prednisone and weaning 2.5mg per week. My IBD Specialist and CRS said to reduce by 5mg every 2 weeks, but 2.5mg per week seems manageable--I still have withdrawal symptoms and it still sucks, even in small increments. I take several supplements including cal/mag, krill oil, vit D+K, VSL#3, EZFE iron, and a prenatal. I just ordered a new supp which is a methyl-B complex and it has extra pantothenic acid (B6) which is supposed to help the adrenal glands. I'm hoping that with time the supplements will help me heal and replenish my depleted vit/mineral stores. Then I can consider a pregnancy.

Thanks NSSG!
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Total Colectomy Oct. 2017!
Previously used: Remicade, Humira, Stelara, Imuran, 6MP, Apriso, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam, Prednisone
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

FlowersGal
Regular Member


Date Joined Feb 2017
Total Posts : 404
   Posted 11/11/2017 10:45 PM (GMT -7)   
So glad you're already doing better. Weaning off the pred will hopefully be the last challenge in your ibd journey! Did you decide yet to stick with the ostomy?
UC pancolitis DX March 2016, Partial Colectomy for diverticulitis Sept 2014
Apriso .375 g x 4/day, Canasa & Uceris foam as needed
Supplements: Zinc, L-glutamine, Probiotics: Reuteri pearls, VSL #3, Folic Acid, CoQ10, turmeric, boswellia, milk thistle, NAC, reservatol, colostrum, glycine
Started Entyvio 3/29/17 (Constant flares since March 2016 only relieved by Prednisone)

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3524
   Posted 11/12/2017 4:29 AM (GMT -7)   
I'm glad to hear from you too! I'm proud of you to take that new challenge on and I hope you heal quickly and hope the pred taper gets better!

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 347
   Posted 11/12/2017 7:42 AM (GMT -7)   
FlowersGal said...
So glad you're already doing better. Weaning off the pred will hopefully be the last challenge in your ibd journey! Did you decide yet to stick with the ostomy?


Thanks FG!
I haven't spoken to my CRS yet about his recommendations (ostomy vs.j-pouch) and last I knew pathology had not released their report on my colon--it still remains to be seen if I have UC or Crohn's.
I am leaning towards keeping the ostomy.
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Total Colectomy Oct. 2017!
Previously used: Remicade, Humira, Stelara, Imuran, 6MP, Apriso, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam, Prednisone
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 347
   Posted 11/12/2017 7:48 AM (GMT -7)   
therearemiracles said...
I'm glad to hear from you too! I'm proud of you to take that new challenge on and I hope you heal quickly and hope the pred taper gets better!


TAM--
I saw that you are quitting Xeljanz. What are you going to do? I hope my results from surgery make you feel less afraid of it. And I did it with a toddler and sick husband and on high-dose prednisone under the worst circumstances and still bounced back.
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Total Colectomy Oct. 2017!
Previously used: Remicade, Humira, Stelara, Imuran, 6MP, Apriso, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam, Prednisone
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3540
   Posted 11/12/2017 3:24 PM (GMT -7)   
Wow, Plucky, how great to hear your positive attitude! Thanks for posting!

smile
Age 61. Diagnosed UP 1983, UC 1986
Humira started 6/5/17
Lialda, 4 pills a day
Failed 6 MP (Liver enzymes skyrocketed)
Metamucil - 2 doses/day
Various probiotics
Multivitamin, vit. D3
two hips replaced thanks to pred.
Bentyl as needed as of 8/31/17
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