Songlady without colon!

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songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3586
   Posted 12/31/2017 7:19 AM (GMT -7)   
Hi all!
Yup, the first few days were/ are tough! All went well. The surgeon is thrilled ! I look l forward to the pathology results. No appetite, but I imagine that will come. I just wanted to check in!
Come

hateuc
Veteran Member


Date Joined Jun 2010
Total Posts : 2304
   Posted 12/31/2017 8:14 AM (GMT -7)   
Hi Songlady,
Congrats on the start of a new UC (or worrying about dysplasia) life!! I hear that the beginning is tough and than it gets better. Please continue to keep us posted on your journey.
B

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15667
   Posted 12/31/2017 8:22 AM (GMT -7)   
Great to hear from you songlady. I never had an appetite after surgery either. It doesn't help that the food at the hospital stinks, but it does get easier. How long do they think you will be there for? I think I was there for a full 5 days, but I was fine to leave at 3, I stayed longer because I had a drain.
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

momto2boys
Veteran Member


Date Joined Jun 2013
Total Posts : 1889
   Posted 12/31/2017 8:43 AM (GMT -7)   
Glad to hear you are doing well for now! I’m sure your appetite will return in a few days. Hope the pathology report comes back with good news.
42 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 2 Lialda + sfRowasa every other night- supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri) 1 gram krill Oil, 1TBSP p. seed powder, 2 g curcumin. Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.

Post Edited (momto2boys) : 12/31/2017 9:44:30 AM (GMT-7)


imagardener2
Veteran Member


Date Joined Jan 2010
Total Posts : 5625
   Posted 12/31/2017 8:48 AM (GMT -7)   
Best wishes on your new improved life without UC !

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 926
   Posted 12/31/2017 9:30 AM (GMT -7)   
You are a brave woman!

Best of luck song!
female, Canada


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. RVF. Failed setons...it was pure torture.
started Stelara May 24, 2017. 150mg imuran

Doing extremely well on Stelara!

IVIG on occasion.

3timechamp
Veteran Member


Date Joined Oct 2009
Total Posts : 627
   Posted 12/31/2017 10:00 AM (GMT -7)   
Hey so happy to hear from you. Have been paying close attention to you and Valli. What is your diet once u are allowed to eat or drink?? Do they start feeding u right away?? Would think you are on IV fluids which should help keep u strong. How long were u knocked out?? I'm preparing myself for whatever comes my way

quincy
Elite Member


Date Joined May 2003
Total Posts : 29947
   Posted 12/31/2017 10:53 AM (GMT -7)   
New beginnings....hope you have a smooth recovery. I look forward to your updates on how you're doing.

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 !!

Serenity Now
Veteran Member


Date Joined Jan 2009
Total Posts : 2061
   Posted 12/31/2017 12:17 PM (GMT -7)   
Thanks for the update. Best wishes for a speedy recovery!
Female, 51, Vancouver BC
Pancolitis: Currently in remission

Jan-Mar2009: Asacol HD. Resulted in severe joint pain and no discernible benefit.
May26-Sep4/2016: Mezavant 4800 mg
Sep5/2016 - : Mezavant 2400 mg

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 163
   Posted 12/31/2017 2:03 PM (GMT -7)   
Very glad it went well and you are on the road to recovery!
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hosp 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, Started Humira 12/15/17, 40 mg pred, waiting on Entyvio due to reaction Humira. Veg, gf, no cows milk, multi, cal-mag, Aroga, Purrium

DBwithUC
Veteran Member


Date Joined Feb 2011
Total Posts : 3982
   Posted 12/31/2017 4:27 PM (GMT -7)   
lets hope you leave the suffering in 2018 and all the best in 2018
11/08: ischemic colitis and scope perf colon. 12cm colon/ileocecal resected. IV antib:sepsis.
01/10: Dx: Mod. UC pancolitis. Rx: Lialda 3x.
02/11: Major flare w/antib:sinus. Rx: 40mg Pred taper. 6mp.
07/11: Histol remiss rt/trans; worse sigmoid. Rx: Rowasa & hydrocort
---
Curr: 1-2 soft-formed stool, no urgency: Lialda 2x, NO PRED, probiotics, Vit-D/C

Michelejc
Forum Moderator


Date Joined Jan 2011
Total Posts : 2011
   Posted 1/1/2018 9:28 AM (GMT -7)   
Glad everything went well!
MODERATOR-UC FORUM
59, female - diagnosed with moderately severe proctitis/mild diverticulosis
Lialda - one a day
6mp - 50 miligrams
VSL#3 DS - 1 pack a day or as needed
Zocor - 40 mg
Calcium with Vitamin D
Glucosamine
Magnesium
B-Complex

"Fly under the radar" - Dad -

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11275
   Posted 1/1/2018 9:46 AM (GMT -7)   
Here's to a wonderful uc-free 2018 for you! Glad you're doing well!
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Severe flares make the common toilet worse than any medieval torture imaginable. The rack? Bah! I survived the thousand razor blade poop for weeks!

3timechamp
Veteran Member


Date Joined Oct 2009
Total Posts : 627
   Posted 1/2/2018 2:46 PM (GMT -7)   
Song how are u doing??

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 2045
   Posted 1/2/2018 3:13 PM (GMT -7)   
Well done! I always think people that have surgery deserve a medal..it cannot be easy.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

countess18
Regular Member


Date Joined May 2016
Total Posts : 144
   Posted 1/2/2018 5:07 PM (GMT -7)   
I agree with Poppie ! congrats to you

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15667
   Posted 1/2/2018 10:11 PM (GMT -7)   
Poppie said...
Well done! I always think people that have surgery deserve a medal..it cannot be easy.



wooo, a medal. I want one shocked It's not easy, but sometimes it's unavoidable. I wish no one had to deal with these decisions...
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

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4888
   Posted 1/3/2018 11:05 AM (GMT -7)   
Bump.

How are you doing? have you changed your bag yet? Are you walking around? Have you seen your mother?
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

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15667
   Posted 1/3/2018 11:47 AM (GMT -7)   
I am looking forward to hearing how you're doing as well. We are all rooting for you songlady. I hope you're getting rest & feeling better quickly.
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

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5142
   Posted 1/3/2018 5:36 PM (GMT -7)   
Wishing you steady progress & hoping that you feel as comfortable as possible at this stage of your recovery. / Old Hat (37 yrs with left-sided UC; presently in remission taking brandname Colazal)

songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3586
   Posted 1/3/2018 7:32 PM (GMT -7)   
Hi all -
I am definitely better each day! Yesterday I was in some pain; they took the last drain out, and it was amazingly long; it was some sore while it came out and then after. Also, I came home yesterday. I am not sure they gave me quite enough meds to last me through, but I guess I'll just see how it goes and then ask for more if needed. (I must really be a wimp about pain - or maybe the meds don't have as strong an effect on me?)
But I never even napped today. The visiting nurse came by for the intake interview early afternoon, and then a dear, close friend who now lives a few hours away came by and we just sat and chatted.

I showered at home on my own this morning, no issues. (I had done so in the hospital the other day also.) I remembered to put the little waterproof sticker over the bag filter, which I had not remembered in the hospital... otherwise, just showered with the bag on. Definitely not a big deal!

An ostomy nurse changed my bag with me yesterday in the hospital. I've looked over all the supplies they sent home with me, and I am good about doing it on my ow again in a day or two. The only challenge is that with this loop ileo, the stoma opening is on the bottom, facing down (like a faucet.) In he hosp, the nurse didn't come by until mid morning, so it was slowly producing the whole time we were working. Sigh. First thing in the morning would definitely be better!

I have talked to my mother each day, Keith, but I likely won't see her until this weekend. Once she sees me out, she'll think I am fair game for any help - and I am not ready for that yet! My sibling is doing very well by her in the meantime!

I'll write more tomorrow and ask some questions! lol. Thanks for your support, everyone!
Age 61. Diagnosed UP 1983, UC 1986
Humira started 6/5/17; stopped 12/1/17
Lialda, 4 pills a day
Metamucil - 2 doses/day
two hips replaced thanks to pred.
Bentyl as needed as of 8/31/17
Surgery scheduled for 12/28/17 because of dyplasia!

3timechamp
Veteran Member


Date Joined Oct 2009
Total Posts : 627
   Posted 1/3/2018 7:52 PM (GMT -7)   
Awesome. Sounds like your progressing well. I'm taking in all u r going thru since my turn comes soon. Missed a late voice mail from surgeons office today. She only mentioned discussing "procedure"?? Does "procedure "mean surgery???? So happy your doing well. How many days were u in hospital?? Did u start eating or drinking right after waking up??? What were u allowed to eat?? Clear liguid diet or some solids?? Hopeing my date is next week. We will see tomorrow

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4888
   Posted 1/3/2018 8:03 PM (GMT -7)   
You can eat until your ostomy starts producing stool output, which could take 24-48 hours for it to wake up. You won’t have an appetite because of the pain meds and sediation meds.
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

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4888
   Posted 1/3/2018 8:06 PM (GMT -7)   
SL,

I’m glad that you are doing so well. I really liked Coloplast ostomy supplies, their accessories with the loop ostomy was great, once I figured out the best setup for me I didn’t have any issues. I recommend the brava barrier strips(stops leaks) and the protective sheet(protects your skin).
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

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15667
   Posted 1/3/2018 8:17 PM (GMT -7)   
I just wrote a whole reply but it got lost... I am happy you were able to go home, but sorry to hear you're having pain. I remember when I first got home, I was pretty overwhelmed with everything, but I had a home health nurse who came to see me a few times. She helped me change my pouch 3x, after that, I was on my own, but I felt very prepared. Do you have someone coming?

I had 3 steps and the first was the hardest for me by far, but I'd imagine in 2 steps, it's even harder. Stay strong, you will be feeling so much better very soon! As for supplies, you can start ordering samples from all the big manufacturers if you know the general size of your stoma. I used to use the cut to fit wafers, or the moldable, especially early on. My loop was especially hard because it pointed down, and it was short, but I made the best of it. Convex helped a lot, but nothing worked great on my loop like it did with my end ileo. Knowing it was temporary helped a lot with mental aspect. The loop was mentally draining for me because it wasn't manageable compared to the end, which I had for 12 weeks and I was comfortable with. It does get easier.

I am happy to hear you're free of the cancer threat. Did you hear anything about the pathology?
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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