Step 3 surgery scheduled!

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Doggiedo
Veteran Member


Date Joined Jan 2014
Total Posts : 565
   Posted 9/28/2017 1:46 PM (GMT -6)   
I had a post op appt with my surgeon the over day and she did a rectal exam to check the pouch. She said it looked good. I have the test to see if there are any leaks, scheduled in a week and a half. I get married last weekend in Oct and she said I can do my surgery that following week ignore I want, which I do! I wanna just move on and do it!

Woot woot!!! Fingers crossed the testing goes well and I'll be as good as nee (minus one stoma) by Nov!!

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15083
   Posted 9/28/2017 2:45 PM (GMT -6)   
Yes! I am so excited for you. That test, btw, isn't as bad as you may read. They basically put you on a tilting table, put a tiny tube in your butt, and fill the j-pouch with contrast, then they xray at angles. There was no mess at all, and nothing went into my ileo pouch. I had read so much about it being messy and difficult, I was freaked, but it was a piece of cake. Not messy, no urgency or inability to hold. At that point, I realized that I could FINALLY retain something!!! Luckily, I only need to retain stool now. I had surgery the day after my "pouchogram". Since then it's been steady progress. Things are great now, no drugs, no running to the toilet. Much more enjoyable life. It takes time, the early stage is hard, but it gets better.
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.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4747
   Posted 9/29/2017 9:17 AM (GMT -6)   
Doggiedo,

Like NSSG my pouchograph was easy and uneventful. By the way, just be patient with these techs, they don't perform these tests very often. It took them 3 times before they got it correct with the help of their supervisor. They also knew nothing about j-pouches; they told me there was something wrong with my pouch and I couldn't use it but all I needed was a dilation of a stricture which is very common with a new pouch.

I didn't have any issues adjusting to the j-pouch but I have seen some people say that the pouch adjustment period after the takedown was the toughest part of all of their surgeries. The butt burn, leakage, diarrhea, etc.

The adjustment period can last for a few weeks or months.
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 : 15083
   Posted 9/29/2017 10:37 AM (GMT -6)   
My tech seemed to have the procedure down. They had one immediately before me. I bet they do a couple a week. I was lucky in that respect... I was in and out in 30 minutes or less. I had a radiologist in the room who confidently was able to tell my surgeon that we could go ahead with the procedure. I had to go get a little scope after, at the surgeons office, which took about 5 minutes. He talked to the pouchogram dr, then I was ready for the 1 hour reconnection in the AM. Nothing moved until 24-36 hours following the resection, but literally something moved right as I was getting ready to leave the hospital. After that, the flood gates opened and that went on for a while. Get yourself one of those water bottle handheld bidets and some protective ointment for the anus... It seemed all fantastic to me, being reconnected, being able to get back to life. Now looking back, I don't think of the bad, but I remember there was a time when I was really struggling post reconnection. Just going often and feeling like I had zero capacity. A couple inconvenient sharts at home. So please be aware that you will have moments of frustration, and stay positive when you can. Things will continue to improve.
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.

blksteeda
Veteran Member


Date Joined Dec 2009
Total Posts : 1608
   Posted 9/29/2017 12:54 PM (GMT -6)   
The nurse for my x-ray was about to use a normal catheter to insert the fluid into my pouch o_O Thank god the technician caught that and had her switch to the correct sized one
43 Male, South Florida

10/14/15 - J Pouch step one complete

2/10/16 - Takedown and very happy with my J Pouch

Doggiedo
Veteran Member


Date Joined Jan 2014
Total Posts : 565
   Posted 10/4/2017 4:33 PM (GMT -6)   
So my pouchograph is scheduled for Monday but I found out my health insurance company (the biggest in the state) is no longer working with the health care offices/hospital that is taking Caremark of my surgery and all my doctors- they are all linked.

Anyhow, until they figure out the contract ALL my doctors are considered out of network. Sooo I'd have to pay out of pocket if I want to do the procedure on monday, which of course I'm not.

So I put in a request for "continuation of care" in which case if it gets approved I can continue with my docs and appts. But, that'll take up to 3 weeks. That puts me justnforwarded one week before my surgery. Did I mention that's also two days before my wedding?!?! I can't wait that long! If I do, I'll have to postpone my surgery.

I'm so frustrated. I'm hoping they figure it out relatively soon. I was so excited get this whole process over with but now who knows. I mean what if they don't make an agreement and I have to change doctors?!? That would be the worst. My doc is one of the next three docs in the state and the only one that has a special office just for ostomies. It's exceptional.

I guess idk what I'm looking for by posting this, but just wanted to share my frustration.

Did I mention today was my First day back at work and I'm exhausted! Good thing only only two more days left in this week!
Moderate to severe colitis, diagnosed in 2003, hospitalization in 2006, Feb 2017, July 2017 for colitis related complications

Step 1- iliostemy and j pouch creation surgery on Aug 25
Obstruction - hospitalized early Sept
Anticipated reversal- Nov/Dec

Medications: 7.5 mg pred (tapering), Zantac

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4747
   Posted 10/4/2017 9:39 PM (GMT -6)   
Usually if you started with a surgeon they will approve continuation of care for that surgeon. Even if they approve the surgeon just make sure that they also approve the hospital care as well.

The 3rd surgery is rather minor compared to the others. it's about 45 minutes without complications like adhesions. Most general surgeons could do this.

I'm sorry that you're caught up in this.
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 : 15083
   Posted 10/5/2017 1:15 PM (GMT -6)   
I do not understand how they can change things like that in the middle of the plan year? I mean, I know it's coming up to the end of the year, but you're in a contract with that plan to provide certain coverages and you've done your part and made payments throughout the year. Seems unfair for them to back out of their side of the agreement. They should definitely cover & rush the appeal. I hope it works out. Getting the pouchogram any time is really not an issue in my opinion, it only takes a short time and it's no biggie, but pushing back the reversal would definitely have me angry.

You could always get a quote for the surgical fees. I paid out of pocket on a lot of mine. The hospital was 100% covered. I would imagine it's not as much as you think, but then again, why should you have to pay it when you specifically chose an in-network doctor.
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.

Bull101
Regular Member


Date Joined Feb 2015
Total Posts : 429
   Posted 10/5/2017 2:05 PM (GMT -6)   
I had my pouchogram a week before my takedown but that's because it was just before thanksgiving and I was ready to get it done and didn't want to wait until after the holidays. I think there were maybe like 4-5 days between pouchogram and takedown surgery. I was also only 7 weeks out from surgery #1.

As far as the test, I hate to disagree with a lot of people here. I think it was 1 of the worst tests I've had so far. The pipe in the butt is not comfortable, then they blow up a balloon in your booty and mine actually tore my rectum a bit, which I think may have started a fissure going forward....there was blood coming back out after that pouchogram not very pleasant. Then this pipe being up there for 15-20 mins while (for me) I was laying on a steel table that was cold and my bare butt was on it, not pleasant. All in all it's not a "oh my god I'm so scared" moment, but it's far from comfortable and pleasant.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15083
   Posted 10/5/2017 2:58 PM (GMT -6)   
I didn't have a balloon. That sounds scary. They tacked mine in with a little sticky thing and the tube was tiny. He explained everything he was doing. My table was cold too, but it literally lasted 10 minutes, no blood after mine. I had my reversal after 7 weeks - the day after my pouchogram. smile

Seems like people either have a good experience or a bad one with this test. I will be interested to hear about yours doggie.
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.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4747
   Posted 10/6/2017 9:23 AM (GMT -6)   
Sounds like they dilated (scar tissue) you while you were awake....ouch. why did they do that? They dilated me during the takedown surgery.


I didn't mention it before because it is not totally relevant but I had a pouchogram 12 days after my surgery because my output was so high they couldn't let me out of the hospital. They were considering reconnecting me so they could release me.

The pouchogram at 12 days was the most painful experience of my life, it hurt so much. And I was on pain meds. I asked them to stop the procedure because I couldn't tolerate it.

After I healed 10 weeks later it wasn't bad at all, other than the inexperienced techs.
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

Doggiedo
Veteran Member


Date Joined Jan 2014
Total Posts : 565
   Posted 10/8/2017 5:18 PM (GMT -6)   
It sounds insane right? If I'm paying all the money to have good health insurance and then they pull the rug out from under us like that.

I should hear back about the continuation of care approval by late Oct. I rescheduled my Peocedure until Oct 23 to give the stupid insurance company time to get their act together.

about the precedure in general, I don't think they'll expand the rectum or anything. She said it's a simple procedure, but now I'm curious and a little nervous. I guess there isn't anything I can do- they procedure is what it is. The doctor who is doing the procedure does all these types of tests for j pouch patients, so that's reassuring. They said they just really trust him and he's the expert. Plus I'll be two months out so hopefully it won't be as painful as some of you have experienced at a few weeks out.

So fingers crossed the insurance company gets their act together!!

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 852
   Posted 10/10/2017 5:48 PM (GMT -6)   
I'm confused; please help me understand...

Doggie....you had UC but now have a jpouch. What is the surgery you're having in November?

Congratulations on the upcoming marriage!!
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

Doggiedo
Veteran Member


Date Joined Jan 2014
Total Posts : 565
   Posted 10/10/2017 7:20 PM (GMT -6)   
Oh sorry if I was confusing - I only had the first part of the surgery. I had the colon removed and the temporary ileostomy created. The j pouch was created but it's not hooked up to the small intestine yet. It's the final piece of the project.

Thanks- we were working on the seating chart tonight. Lots to do! Did I mention I'm writing a dissertation to get my PhD in May, too? Lol
Moderate to severe colitis, diagnosed in 2003, hospitalization in 2006, Feb 2017, July 2017 for colitis related complications

Step 1- iliostemy and j pouch creation surgery on Aug 25
Obstruction - hospitalized early Sept
Anticipated reversal- Nov/Dec

Medications: 5 mg pred (tapering), Zantac
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