My surgery journey

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Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 382
   Posted 2/7/2018 12:20 AM (GMT -6)   
notsosicklygirl said...
I am so happy for you to find something that works. That's usually the case, something works, even if it's not your ideal thing, there is something. That is what is most important. I hope you can get even longer wear time, and before you know it, you will be ready for your takedown.

Plucky, it's nice to hear from you. How are you doing overall? I am sorry to hear you've had blow outs sad

Hey NSSG! Not trying to "hijack" Kanva's thread but for the record I am good! Finally weaned off prednisone & definitely experiencing adrenal fatigue as well as some rectal inflammation, but it's all manageable. Trying to stop stuffing my face and get in shape 😁
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

Kanva
Regular Member


Date Joined Mar 2017
Total Posts : 139
   Posted 2/7/2018 12:58 PM (GMT -6)   
Thanks for all the support, everyone! It helps to have other people who have gone through this.
Plucky, it’s so great to hear you’re doing well, and yay for getting off of prednisone! Hopefully it will work its way out of your system quickly. I know it took me months to feel anywhere close to normal after I stopped.
Diagnosed with ulcerative colitis in 2011. In remission until 2015 with Lialda and prednisone.
No response with Entyvio or Remicade, azathioprine.
Opted for three-step j pouch surgery. Completed step one (subtotal colectomy with ileostomy) May 2017. Completed step two (protocolectomy, ileal pouch anal anastomosis and loop ileostomy) January 2018.

Kanva
Regular Member


Date Joined Mar 2017
Total Posts : 139
   Posted 2/9/2018 11:01 AM (GMT -6)   
Big milestone for me today, giving me hope that there is light at the end of the tunnel:
Two weeks and two days after surgery, I took a shower this morning and ... it didn’t make me exhausted! Then I went up a flight of stairs and was only slightly winded! Woo boo ... I’ll take the small victories!
Diagnosed with ulcerative colitis in 2011. In remission until 2015 with Lialda and prednisone.
No response with Entyvio or Remicade, azathioprine.
Opted for three-step j pouch surgery. Completed step one (subtotal colectomy with ileostomy) May 2017. Completed step two (protocolectomy, ileal pouch anal anastomosis and loop ileostomy) January 2018.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16724
   Posted 2/9/2018 12:03 PM (GMT -6)   
That's great. I am happy you're feeling stronger. It's funny you mention getting so tired quickly, I remember when I was like that. I haven't thought about feeling that way in so long. I am generally fatigued, but going through the surgeries put me on another level.
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

Kanva
Regular Member


Date Joined Mar 2017
Total Posts : 139
   Posted 2/9/2018 12:13 PM (GMT -6)   
It’s funny how well our brains can forget adversity like that, isn’t it?
Diagnosed with ulcerative colitis in 2011. In remission until 2015 with Lialda and prednisone.
No response with Entyvio or Remicade, azathioprine.
Opted for three-step j pouch surgery. Completed step one (subtotal colectomy with ileostomy) May 2017. Completed step two (protocolectomy, ileal pouch anal anastomosis and loop ileostomy) January 2018.

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 382
   Posted 2/9/2018 12:16 PM (GMT -6)   
Yay for improvement Kanva! Have a great weekend!
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

Kanva
Regular Member


Date Joined Mar 2017
Total Posts : 139
   Posted 3/5/2018 9:58 PM (GMT -6)   
Well, I’ve been away from the forums for a bit. My sister died of colon cancer two weeks ago, so it’s been a blur. I started back at work full-time today. It was a relief to get back to some semblance of normalcy, but the fatigue is hard to battle. I think that if I hadn’t had grief to deal with, I would have been OK, but it’s been a setback for sure.
Diagnosed with ulcerative colitis in 2011. In remission until 2015 with Lialda and prednisone.
No response with Entyvio or Remicade, azathioprine.
Opted for three-step j pouch surgery. Completed step one (subtotal colectomy with ileostomy) May 2017. Completed step two (protocolectomy, ileal pouch anal anastomosis and loop ileostomy) January 2018.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16724
   Posted 3/5/2018 10:52 PM (GMT -6)   
I am so sorry to hear about your sister Kanva. I cannot imagine how difficult that is. Take it easy, and don't work too hard, you will regain strength. It's just a tough time you're going through.
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

Mak37
Regular Member


Date Joined Jan 2018
Total Posts : 313
   Posted 3/5/2018 11:52 PM (GMT -6)   
Kanva, sorry about your sister, that is a tough thing to deal with. Take things slow and don’t let work stress you out. Focus on your health and family. The word brave is overused a lot but you certainly are brave.
Diagnosed at 7, in the gray area between crohns and UC. Surgery on Jan 27, 2018 #nocolonstillrollin

FlowersGal
Veteran Member


Date Joined Feb 2017
Total Posts : 501
   Posted 3/6/2018 7:44 PM (GMT -6)   
My condolences on the loss of your sister. I hope you allow yourself time to grieve and don't push too hard to be at work right now.
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)

Woogy
Regular Member


Date Joined Apr 2004
Total Posts : 136
   Posted 3/7/2018 11:37 AM (GMT -6)   
I'm sorry for your loss Kanva. Take things day by day.
~Diagnosed in 2001 - Left Side UC
- Humira- started 12/19/17 - No relief yet
-Prednisone 40mg
-Tumeric, Fish Oil, VSL#3DS, Healthy Origins Probiotic, Vit D, Vit C, Multivitamin

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

**Step 1 of 3 - Surgery on 1/29/18**

Kanva
Regular Member


Date Joined Mar 2017
Total Posts : 139
   Posted 3/11/2018 8:34 PM (GMT -6)   
Thanks, everyone. I survived my first week back at work, but not too well. I don’t have anything left by the time I get home. I know I just have to keep moving forward, so that’s what I try to do. I keep telling myself it’s getting better slowly, even if it doesn’t feel like it. I also feel like I’m failing my family ... doesn’t seem fair to keep being sad and tired. I tell myself it’s OK to take time to be sad, but I feel like I should be back to “normal” by now. Self-imposed, I know, but sometimes those are the hardest expectations to escape from.
Diagnosed with ulcerative colitis in 2011. In remission until 2015 with Lialda and prednisone.
No response with Entyvio or Remicade, azathioprine.
Opted for three-step j pouch surgery. Completed step one (subtotal colectomy with ileostomy) May 2017. Completed step two (protocolectomy, ileal pouch anal anastomosis and loop ileostomy) January 2018.

Kanva
Regular Member


Date Joined Mar 2017
Total Posts : 139
   Posted 6/2/2018 11:30 AM (GMT -6)   
I'm headed to my third and last surgery next week at the Mayo Clinic (takedown of the j-pouch). It's hard to believe that I'll be done with ostomy supplies after this (fingers crossed).
I'm dreading the surgery, honestly - I think it will just be a flashback to this winter and the second surgery, which was hard and complicated with my sister's death. I'm just starting to feel "normal," and now I'll have to build back up all over again.
I know this ultimately is a good thing - I'm progressing through my UC journey, and the end is in sight. It's just hard to get excited about the prospect of anesthesia time, recovery, and diarrhea! smile
Diagnosed with ulcerative colitis in 2011. In remission until 2015 with Lialda and prednisone.
No response with Entyvio or Remicade, azathioprine.
Opted for three-step j pouch surgery. Completed step one (subtotal colectomy with ileostomy) May 2017. Completed step two (protocolectomy, ileal pouch anal anastomosis and loop ileostomy) January 2018.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16724
   Posted 6/2/2018 1:31 PM (GMT -6)   
Best of luck. The closure is actually really easy, but the process of healing after can take some time. We just had a member do takedown though, and he's doing fantastically well, you will do great too.
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

3timechamp
Veteran Member


Date Joined Oct 2009
Total Posts : 1023
   Posted 6/2/2018 8:40 PM (GMT -6)   
Got mine in July-Lets do it

Kanva
Regular Member


Date Joined Mar 2017
Total Posts : 139
   Posted 6/3/2018 4:25 PM (GMT -6)   
NSSG: I’m definitely a little nervous about the after-surgery adjustements. Its hard to imagine what it will be like to have a digestive system again. But knowing that I’m healthy going into it helps.
3TC: You give me courage! Strength in numbers, right? smile

3timechamp
Veteran Member


Date Joined Oct 2009
Total Posts : 1023
   Posted 6/4/2018 8:09 PM (GMT -6)   
No doubt in my mind surgery is the right choice,I'm 59yo male i want to live,i want to go to Yankee games,i want to go to Ranger games[can u tell I'm a NYer]. UC held me back fearing i would have an accident.No more anxiety,no more stress.Surgery 3 in July.What should my first mean be once i get out of hospital??? Nothing can be as bad as 32 yrs with this UC monster-GOOD LUCK ALL

Kanva
Regular Member


Date Joined Mar 2017
Total Posts : 139
   Posted 6/10/2018 6:46 PM (GMT -6)   
Well, my third surgery is in the books. Takedown was Friday afternoon, and I was discharged today (Sunday). Pretty quick turnaround, but I felt so much less fuzzy and painful than I did with the first two surgeries.
I have had quite a bit of swelling and bloating, but it’s slowly getting better. My appetite is very minimal, but I am passing stools without difficulty.
The drive home is probably the worst part so far ... it’s not comfortable to sit in the car with a bloated and gurgly abdomen, and we have an 8-hour drive. We broke it into two days, and I will be so glad to get home and get on with life!
Diagnosed with ulcerative colitis in 2011. In remission until 2015 with Lialda and prednisone.
No response with Entyvio or Remicade, azathioprine.
Opted for three-step j pouch surgery. Completed step one (subtotal colectomy with ileostomy) May 2017. Completed step two (protocolectomy, ileal pouch anal anastomosis and loop ileostomy) January 2018.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5159
   Posted 6/10/2018 7:43 PM (GMT -6)   
You had different anesthesia for your 3rd surgery than the first two surgeries; I makes a difference. I’m sure that you weren’t as active the first few days after first two surgeries.

Rest up, you’ll feel better soon.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 13206
   Posted 6/11/2018 7:16 AM (GMT -6)   
Kanva said...
Well, my third surgery is in the books. Takedown was Friday afternoon, and I was discharged today (Sunday). Pretty quick turnaround, but I felt so much less fuzzy and painful than I did with the first two surgeries.
I have had quite a bit of swelling and bloating, but it’s slowly getting better. My appetite is very minimal, but I am passing stools without difficulty.
The drive home is probably the worst part so far ... it’s not comfortable to sit in the car with a bloated and gurgly abdomen, and we have an 8-hour drive. We broke it into two days, and I will be so glad to get home and get on with life!
Congrats! Glad it went well. The drive sounds tough!

Kanva
Regular Member


Date Joined Mar 2017
Total Posts : 139
   Posted 6/11/2018 11:23 AM (GMT -6)   
Turns out that having my intestines wake up has given me some negative flashbacks to pre-surgery. The gurgling, some cramping, needing to restrict my diet, and increase in urgency ... It's nowhere near what it was like pre-surgery, and I know it's just recovering from anesthesia, bit it's hard to not have negative associations from life before.
Diagnosed with ulcerative colitis in 2011. In remission until 2015 with Lialda and prednisone.
No response with Entyvio or Remicade, azathioprine.
Opted for three-step j pouch surgery. Completed step one (subtotal colectomy with ileostomy) May 2017. Completed step two (protocolectomy, ileal pouch anal anastomosis and loop ileostomy) January 2018. Completed step three (takedown) June 2018.

Post Edited (Kanva) : 6/11/2018 10:48:49 AM (GMT-6)


Bull101
Veteran Member


Date Joined Feb 2015
Total Posts : 565
   Posted 6/11/2018 11:56 AM (GMT -6)   
You've got brand new plumbing. Give it time. I can still see improvement for me and it's been more than 1.5 years post op.

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 6/11/2018 12:18 PM (GMT -6)   
Congrats on your surgery and being UC-free. I am glad your surgeries all went well. You are one tough cookie, resilient and brave. Take care of yourself.
34 years old; diagnosed March 2007.
Latest scope: 9-29-16: mild-to-moderate chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018.
Current meds: Delzicol, 6, 2xday; Rowasa nightly; singular and Allegra for allergies; Xanax.

RunJerRun
Regular Member


Date Joined Oct 2017
Total Posts : 69
   Posted 6/11/2018 2:07 PM (GMT -6)   
Congrats! I am truly excited for you. Please keep us posted to how you adjust to your new system. smile
42 year old male
Sept 2017 -DX UC Symptoms since Jan 2016
Nov 2017 - DX Kidney Cancer, Partial Nephrectomy Surgery.
Failed meds, diets, - UC progressed to sever Pancolitis
Feb 2018 - Surgery, Step 1 - Subtotal Colectomy, Ileostomy
Med Free - Pred Free!

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16724
   Posted 6/11/2018 3:06 PM (GMT -6)   
Congrats on having the final step.

In the beginning, i had a lot of those weird gurgle pains and frequent trips, my butt was also on fire, but I could eat well again, and that was a positive. it takes a lot of time to heal.
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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