My surgery journey

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iPoop
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Date Joined Aug 2012
Total Posts : 12551
   Posted 1/24/2018 7:27 AM (GMT -6)   
Good luck, we'll be thinking of you! When you feel well enough, let us know how it went!
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

A semi-finalist in the Olympic 15-meter bathroom-sprint. Aimed for the gold but just ended up getting brown...

Woogy
Regular Member


Date Joined Apr 2004
Total Posts : 125
   Posted 1/24/2018 11:38 AM (GMT -6)   
Good luck today!!
~Diagnosed in 2001 - Left Side UC
- Humira- started 12/19/17 - No relief yet
-Prednisone 40mg - tapering
-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.

FlowersGal
Regular Member


Date Joined Feb 2017
Total Posts : 487
   Posted 1/24/2018 11:55 PM (GMT -6)   
GOOD LUCK!!!!!!
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)

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16288
   Posted 1/25/2018 10:20 AM (GMT -6)   
Check in when you can. I hope you're getting some rest.
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 : 135
   Posted 1/29/2018 6:15 PM (GMT -6)   
Hey, everyone! I just made it home from my second surgery last night (out of the hospital on Saturday), and I’m feeling pretty good!
Surgery was last Wednesday at the Mayo Clinic. As much as I want to be done with surgeries, I was pretty anxious about this one. I know a lot of people say it can be harder than the first. Lucky for me, everything went great. I don’t think my pain ever was above a 3 after this surgery, which is significantly less than after first surgery.
I will say, though, that I was amazed at how differently my body reacted to anesthesia this time around. I had quite a bit of nausea, which was not fun. Then they think I had a reaction to the first anti-nausea med they gave me, and I starting shaking/shivering uncontrollably. It took almost an hour to get a Benadryl, which helped right away. I think the delay was because I started having issues right around shift-change, doctor rounds, and the time people started to come back from surgery. At one point, a very nice nurse in training asked me if I wanted a warm blanket, which pushed me over the edge into tears and shouting “No, I just want meds to make this stop!” Kind of embarrasing to lose control, but I don’t think I handle discomfort well. Pain, yes, discomfort, no. smile
After that, I was reluctant to take another anti-nausea med for fear I would have another reaction, even thought it was zofran, which I have tolerated fine before. So I tried to go the night without any anti-nausea stuff, and I felt uncomfortable and could feel my intestines kind of twitching. I kept getting up to walk around, thinking that would help. Turns out I was really nauseated, and by the time I realized it, I was exhausted, vomiting, and frustrated. Luckily, the nurse that night was fantastic and calmed me down and got me to take zofran, which took care of it right away.
I had basically no appetite the next day, but I stayed on zofran for about 24 hours straight and started to feel more normal.
They discharged me Saturday morning. I haven’t even needed any pain meds other than Tylenol and ibuprofen, so I feel really fortunate. I’m not wild about the loop ileo, but it’s also hard to make a judgment until a little farther along in the healing process.
I don’t feel nearly as tired and sore as I did after the first surgery, and I definitely think I will be back to “normal” way before the 6-week mark. I guess the variable may be how the loop ileo treats me ... I definitely can tell that things are going through me more quickly, so I hope my body can adjust and absorb the nutrients it needs.
Once again, I was amazed at the Mayo Clinic. It’s how health care should work: everyone is compassionate, competent, and cooperative. They don’t talk down to you, they explain everything clearly, and they always give you options, not orders. Usually in a hospital, I run into a range of staff competency and kindness, but at the Mayo I have yet to meet anyone who has been less than stellar (OK, except for one slightly brusque secretary). The nurses were the best ever.
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.

Kanva
Regular Member


Date Joined Mar 2017
Total Posts : 135
   Posted 1/29/2018 6:20 PM (GMT -6)   
Ha. I was just reading my post from after my first surgery, about having issues peeing after the urinary catheter came out. That was an issue again this time, although this time I saw it coming and asked for the catether nurse before the pressure got too bad. Unfortunately, it also coincided with the beginning of my shaking episode, which made it even less fun.
Both times, after the “in and out” recatheter, I have had no more issues. Wish there were a way to just avoid that step after the next surgery.
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.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16288
   Posted 1/29/2018 6:26 PM (GMT -6)   
Thanks for checking in kanva. The loop was a huge challenge for me, but some people don't have issues. I hope yours is easy enough to work with. Are you planning to get takedown in 8 weeks? I think I was able to schedule mine before the 8 week mark, just a few days, but I was thankful to get it sooner than later, since my loop was such fast transit and I was always dizzy. I had to take quite a bit of imodium and drink a lot of fluids, but I was never readmitted. I've heard it can happen if you don't stay hydrated, so stay hydrated & chew well. Loops are easier to block. I don't think I took pain meds when I was out of the hospital after the 2nd step either. I am just so allergic, without an anti-nausea, I get horribly sick. Sometimes with the ansthesia they give you demerol or something, and that makes me so ill. I've thrown up from that.
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 : 135
   Posted 1/29/2018 6:29 PM (GMT -6)   
NSSG: Thanks for sharing about your loop ... so helpful to be reminded of others’ experiences!
Droperidol was the med I apparently didn’t tolerate well.
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.

Mak37
Regular Member


Date Joined Jan 2018
Total Posts : 312
   Posted 1/29/2018 9:23 PM (GMT -6)   
Glad to hear your updates kanva, you are doing very well! I hated the catheter as well, mine wasn’t draining so they had to take it out so I could pee! It was pretty uncomfortable!
Dx with severe pancolitis with appearance of Crohn’s at 7, now 20
Taking humira bi weekly for 3 months, lialda 3x a day 1.2mg, prednisone 40mg, calcium and vit D. Flaring since 2015

Kanva
Regular Member


Date Joined Mar 2017
Total Posts : 135
   Posted 1/30/2018 7:16 AM (GMT -6)   
Mak37: to me, the injustice of needing surgery because you can’t quit pooping, and then having a side effect be that you CAN’T pee, just seems too much! smile
NSSG: I’m not sure yet when I’ll have the third surgery. They sounded like they want to wait three months. Honestly, that may be what works best for my life schedule.
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.

Woogy
Regular Member


Date Joined Apr 2004
Total Posts : 125
   Posted 1/30/2018 8:22 PM (GMT -6)   
Thx for the update Kanva. Sorry you had issues not only with anesthesia but then with the catheder. Ugh. That's rough when your trying to recover. I hope your loop works great and the time flies so you can have your final surgery and it will be all over. smilewinkgrin
~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 : 135
   Posted 1/31/2018 1:11 PM (GMT -6)   
Woogy, me too!
The loop is definitely different. Either I cut the opening too big on Sunday or my stoma shrank, but when I changed the pouch today I had a big red angry spot below my stoma. I’m still waiting for my order of new supplies, so I was using the last of the samples the hospital sent me. I grabbed the wrong piece and had to dig for the right thing, and my stoma (of course) started to output, and the top skin tore off the red spot. Total ordeal ... I even lost my scissors and spent about 10 minutes looking for them before realizing they were stuck in the leg of my leggings. I got some stoma powder on the spot and got a wafer slapped on eventually. Now I just hope it will stay snug and not need changed for a few days, so the skin can heal. I was very lucky with my skin the first time around, and I didn’t have any redness, let alone weepy skin, so I guess it’s just my turn. Ah, ostomy slapstick! smile

Woogy
Regular Member


Date Joined Apr 2004
Total Posts : 125
   Posted 2/1/2018 10:02 AM (GMT -6)   
Oh yikes, that sounds painful. That's one of my biggest worries are leaks. My skin is very sensitive to begin with. I can't imagine how it will be if my stoma leaks. Ugh. I don't sleep good at night for fear the output is pooling around my stoma since I'm on my back. I've tried to lean towards my right side at night to keep the output off my stoma. Lol

I hope the loop gets better for you soon. smile
~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**

3timechamp
Veteran Member


Date Joined Oct 2009
Total Posts : 882
   Posted 2/1/2018 10:12 AM (GMT -6)   
Nurse taught me little trick. After cleaning area Put Stoma powder on skin around Stoma. Then takes the little wipes u get to clean area around Stoma. Only dab at area around Stoma,don't wipe it. Powder kind of turns into crystal type feel. Nurse said this gives skin more protection. Will see tomorrow when I change bag

Kanva
Regular Member


Date Joined Mar 2017
Total Posts : 135
   Posted 2/2/2018 12:36 PM (GMT -6)   
Well, bleh. My itching got out of control yesterday, so I went to see my ostomy nurse. She confirmed it’s yeast. Luckily my doctor sent an antifungal powder home with me, so I have the tools to fight it. She said the redness at the bottom of the stoma is looking much better, though, so that’s good. She suggested Benadryl at night to not go crazy from the itchiness while it’s healing, and she also said an ice pack might help numb it during the day.
At least I know I’m on the right track.
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 : 135
   Posted 2/2/2018 4:02 PM (GMT -6)   
But it turned out that the system the ostomy nurse helped me set up (Hollister one-piece) had a blowout leak within about three hours. Now I’m trying the last of the Coloplast samples I have where the wafer hole is a bit too big, so I have a Hollister Adapt ring behind it hoping to take up the slack. I’m using a belt, too. Still waiting for my regular shipment, and Monday seems a long ways away. It’s very discouraging because I feel like nothing will work, and I’m tired of having sore red skin with poop leaking everywhere.
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.

Mak37
Regular Member


Date Joined Jan 2018
Total Posts : 312
   Posted 2/2/2018 6:01 PM (GMT -6)   
Don’t get discouraged yet!! You’ll find out what works for you soon, I haven’t had a leak or anything yet so I can’t really relate but it definitely sounds very frustrating! Especially feeling out of control, do you have a measuring set thing (with different sized holes in it) to put around your stoma to help cut the holes? I got one in the mail and it helps a lot to figure out the sizing!
Dx with severe pancolitis with appearance of Crohn’s at 7, now 20
Taking humira bi weekly for 3 months, lialda 3x a day 1.2mg, prednisone 40mg, calcium and vit D. Flaring since 2015

Kanva
Regular Member


Date Joined Mar 2017
Total Posts : 135
   Posted 2/3/2018 7:50 AM (GMT -6)   
Feeling out of control is really hard. It also makes me worry about easing my way back into the world, because oozing poop in public is kind of one of my worst nightmares.
I do have the sizing chart, and that has helped me make sure I’m adjusting as my stomaa changes.
It’s been 16 hours with the current setup and no disasters, so I’m keeping my fingers crossed for a better day!
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.

Woogy
Regular Member


Date Joined Apr 2004
Total Posts : 125
   Posted 2/4/2018 11:10 AM (GMT -6)   
Having leaks is one of the things I fear the most. I hope you find the products that work for you Kanva.
~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**

Mak37
Regular Member


Date Joined Jan 2018
Total Posts : 312
   Posted 2/4/2018 3:13 PM (GMT -6)   
Hey 16 hours is a big difference!! You’ll find out what works for you soon, I’m glad that you got that 16 hour break that must have felt great!
Dx with severe pancolitis with appearance of Crohn’s at 7 but actually had it whole life
After failing humira and not responding to IV steroids had to have surgery for j pouch- step one complete on January 27, 2018!!

Kanva
Regular Member


Date Joined Mar 2017
Total Posts : 135
   Posted 2/4/2018 6:09 PM (GMT -6)   
Made it to 24 hours, which did feel great! Then I decided to switch back to the Hollister setup my ostomy nurse had recommended because I thought the fabric wafer would breathe a bit more than the Coloplast plastic. Big mistake. Another leak within 2 hours, which set off another horrible attempt at changing everything while my output wouldn’t stop. My skin had looked a bit better after the first change, but by the end of the second change, it was so burned from acid output it was raw. So ... guess I’ll stick with the Coloplast and just hope the yeast infection can heal.
And at least my full supply of Coloplast stuff came Saturday instead of Monday. I’ll take any victory I can get!
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 : 135
   Posted 2/6/2018 10:40 AM (GMT -6)   
Good news: I changed my setup today, and there were no leaks! My skin is looking much better, and I feel less itchy. I’m sticking with Coloplast, as that’s what seems to be working. Thank goodness, because Sunday was a pretty low point for me.
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.

Mak37
Regular Member


Date Joined Jan 2018
Total Posts : 312
   Posted 2/6/2018 5:02 PM (GMT -6)   
So happy you finally got it figured out, you must feel great!! I can tell your spirits are back up!
Dx with severe pancolitis with appearance of Crohn’s at 7 but actually had it whole life
After failing humira and not responding to IV steroids had to have surgery for j pouch- step one complete on January 27, 2018!!

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 379
   Posted 2/6/2018 5:51 PM (GMT -6)   
Kanva--
My record was FIVE bag changes in one day. And sometimes it's bad for a few days, and then something I do starts working and everything goes smoothly for a bit. I've had blow-outs in public but luckily I've always been prepared with supplies and extra clothes--it was my worst fear, but now that it's happened and I've handled it I'm not afraid anymore (side note: my output is thick and I caught my leaks before anyone else noticed). And also I've learned from my blow-outs and thus managed to avoid others.
One thing that has helped me avoid leaks is using paste around the opening of my base.
Glad you are doing well Kanva!
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

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16288
   Posted 2/6/2018 11:10 PM (GMT -6)   
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
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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