one month to go

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3timechamp
Regular Member


Date Joined Oct 2009
Total Posts : 484
   Posted 12/7/2017 7:05 PM (GMT -7)   
Surgery set for one month from this week.Pred is only thing keeping me out of hospital now.Big D 24/7 for last few months. BMs about 5x a day.I can hold it in pretty good but never easy.My toiiet radar is on high alert if I'm driving.Up few times during night,lost 10 lbs in last month.pray for me

momto2boys
Veteran Member


Date Joined Jun 2013
Total Posts : 1866
   Posted 12/8/2017 4:03 AM (GMT -7)   
I’m sure four weeks seems like an eternity at this point. Hang in there and ask your doc to put you up on the list if they have a cancellation.
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.

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1998
   Posted 12/8/2017 8:34 AM (GMT -7)   
It sounds like Hell! and we have all been there..Imagine very soon that this will all be behind you after surgery!

Best to you!
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!!!

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15427
   Posted 12/8/2017 2:45 PM (GMT -7)   
5x a day isn't the worst. Same as after surgery in good results, and it's always somewhat loose, as the pouch doesn't absorb fluids like a colon. On pred though, and still having that, yup, that's tough. I really hope you improve so things are easier leading up to your surgery. I am sorry you're struggling. You were doing quite well for a long time too, frustrating to backslide like this when you're so close to being done with UC.
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.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11046
   Posted 12/8/2017 2:47 PM (GMT -7)   
Hang in there! We're thinking of you and hoping for the best!
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

U.C. = Unimaginable Crapnado

3timechamp
Regular Member


Date Joined Oct 2009
Total Posts : 484
   Posted 12/9/2017 6:33 AM (GMT -7)   
Thanks everyone. Left voice mail with my surgeons that I might not be able to wait til Jan. Yesterday was rough day. Little weak. Very tired. One of just get this darn diseased body part out of me. Want to know from surgeon if I wanted it outbthis week is that possible. Just preparing myself for the possibilities. Had to increase the Pred just so I can function. Every woman in New York wants there house worked on for Xmas. So I just need to get to Xmas and I'll be happy that I got all my Xmas jobs done. Not easy but have to pay the bills

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3534
   Posted 12/9/2017 6:38 AM (GMT -7)   
Hi, Can you try Cipro and Flagyl to help settle things down? It always helps me. I know I need it when I wake up in the middle of the night to go to the bathroom. When I see pus with blood with my bm. I don't mistake the pus for mucus, which is white, my puss is like snot color.
 
You are in my thoughts and prayers for sure 3timechamp.

Michelejc
Forum Moderator


Date Joined Jan 2011
Total Posts : 1970
   Posted 12/9/2017 7:48 AM (GMT -7)   
Best of luck and please keep us updated after your surgery
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 -

3timechamp
Regular Member


Date Joined Oct 2009
Total Posts : 484
   Posted 12/9/2017 8:51 AM (GMT -7)   
I had got down to 20 mg of pred.Most aggravating was that pain you get above groin area when u have gas or a BM coming.Hurts bad til u either go or it passes.Well last night i couldn't take it anymore and since i ate dinner the pain was more frequent so i took 20mg of pred and it mostly went away.Problem is taking Pred at night means u aren't going to sleep anytime soon .So i didn't fall asleep til 2-3 in morning.Upped my pred to 35mg today.Can i survive til January surgery????

3timechamp
Regular Member


Date Joined Oct 2009
Total Posts : 484
   Posted 12/10/2017 7:52 PM (GMT -7)   
Calling surgeon in morning to see if he can do surgery this week or next. Don't care about my deductibles at this point. Think I need to stay on 40-50 mg of Pred to keep inflammation down. Not good. BMs up to 10 day. Joy. Joy joy. Let's just do it. Too much of a struggle at this point. Plus I know my weight 6"5-235 will go down more if I wait til Jan. Hope for best

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15427
   Posted 12/10/2017 8:06 PM (GMT -7)   
Aww. Poor thing. I totally understand when money becomes the back-burner issue and you just need your life back. In reality, the prednisone could have long-term implications on your health that would cost more than just paying the deductible. Do what will make you happy & healthy. Waiting really doesn't provide too much benefit in your situation I don't think, you already know what you want... I didn't realize you were 6'5". I have a lot of really tall friends actually. I am tiny, 5'3.
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
Regular Member


Date Joined Oct 2009
Total Posts : 484
   Posted 12/11/2017 8:27 PM (GMT -7)   
Got appt with surgeon on Wednesday.Surgeon will be away most of month.Told nurse i don't care if Bugs Bunny does surgery i need it pronto.Surgeons partner is available so hope to get date of yesterday to have surgery.Every day losing another Pound,50 mg of pred every day isn't good but only thing that helps me function

Bull101
Regular Member


Date Joined Feb 2015
Total Posts : 460
   Posted 12/12/2017 7:01 AM (GMT -7)   
Just be careful.....2 weeks of surgery sooner is not worth a lifetime with a bad surgery outcome....

3timechamp
Regular Member


Date Joined Oct 2009
Total Posts : 484
   Posted 12/12/2017 9:13 AM (GMT -7)   
Its a months wait. Bull i can't last til 2nd week of January,i need surgery now.Have had UC for 32 yrs i know when things are bad and there bad

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15427
   Posted 12/12/2017 9:23 AM (GMT -7)   
Try not to rush, but see what they say tomorrow. Hopefully you get good news & you feel confident about the surgeon. I agree with Bull though, better not to rush if you can wait, at the same time, better to have surgery now with a qualified surgeon than end up with an emergency situation because you waited. It's never an easy decision. I know I'd want to be off the pred, but I'd also want the best outcome.
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
Regular Member


Date Joined Oct 2009
Total Posts : 484
   Posted 12/12/2017 10:32 AM (GMT -7)   
Yea i trust surgeons partner.Cornell is one of best to have surgery,at this point i can't wait.What if pain and blood is from cancer???

Post Edited (3timechamp) : 12/12/2017 10:35:23 AM (GMT-7)


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15427
   Posted 12/12/2017 11:42 AM (GMT -7)   
IT'S NOT. Please don't let your mind go there. You will be fine. You're so close to being free of it all. You should get something, or talk to someone, for this anxiety.
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
Regular Member


Date Joined Oct 2009
Total Posts : 484
   Posted 12/12/2017 2:09 PM (GMT -7)   
the only anxiety I have is now once I wake up. Are u diagnosing me??? Wow that's scary. I can not wait to have this surgery. Saw my gastro today and he agrees. Blood count is bad. Not anemic yet but that could come if I don't get surgery sooner then later. Hey cancer is definetly a possibility even though I don't think I have. I've had this disease longer then most people. Chances of cancer increase every year u have it. Prepare for anything

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15427
   Posted 12/12/2017 2:21 PM (GMT -7)   
Of course not. I am not a doctor, and even if I were, that wouldn't be appropriate. Sorry if you got that impression. I said "talk to someone" or "get something" - meaning see someone to work through it. Having surgery is extremely stressful in itself. When I got close, like you are, I started to get antsy, I just wanted to do it. I wasn't worried about C. I had a MRE just before surgery and nothing was seen. Did you have one?
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
Regular Member


Date Joined Oct 2009
Total Posts : 484
   Posted 12/12/2017 2:53 PM (GMT -7)   
Funny that back in October surgeon wanted an MRE. Once I told him I want to do everything in 2018 he said ok no need for MRE. Now I was scheduled a colonoscopy for Jan 3rd with my gastro. I'm wondering can they just admit me tomorrow and do colonoscopy in hospital. Maybe do surgery next day??? I'm extremely relaxed right now. Just want to get this done sooner then later. More worried about driving into Manhattan tomorrow Don't want to get any urges to go so I'm not eating tonight even though I'm not eating much anyway

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 109
   Posted 12/12/2017 3:39 PM (GMT -7)   
Best wishes tomorrow. Please keep us updated.
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hospitalized 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide Disodium 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, in a more major flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, starting Humira soon. Vegetarian whole life, Gluten free since 2008, dairy free

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15427
   Posted 12/12/2017 3:47 PM (GMT -7)   
It's good to do the upper prior to surgery, just to get an idea of whether there is any involvement there. Though you've had UC for quite a while and you may have had an upper in the past. I didn't have a scope prior, just the MRE. I hope things work out as you want tomorrow. You're right, if you're admitted, things can move quicker. I hate those longer drives while flaring. It's always stressful being in a car, but you will make it, you may have to stop, but just get there safe. Good luck. Let us know what you find out asap.
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 : 4815
   Posted 12/13/2017 10:36 AM (GMT -7)   
From my experience at NYP Cornell, you'll want to avoid the hospital if a lot of the staff is on vacation around the holidays or end of the semester (teaching hospital). They have a new class rotating in to learn about Colo-rectal surgeries and the Surgeons and experienced nurses are on vacation.

You'll be treated by people with limited experience over the holidays. I ran into that problems around July 4th when the new class came in and my surgeon was on vacation. If it wasn't for the head nurse stepping in and saying that I needed to stay then the residents would have discharged me with an abscess.

I'd try to wait until your scheduled appointment in January.
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 : 4815
   Posted 12/13/2017 10:43 AM (GMT -7)   
who would be your substitute surgeon?
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

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 109
   Posted 12/13/2017 11:35 AM (GMT -7)   
I know you are wanting this over, but an experienced surgeon can make a huge difference. A student cut a nerve in my father in law's heart and he then required a pacemaker that he otherwise didn't need. I hope you get adequate answers and feel comfortable with whatever you decide.
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hospitalized 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide Disodium 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, in a more major flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, starting Humira soon. Vegetarian whole life, Gluten free since 2008, dairy free
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