ULAR + ileo tips welcome!

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Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

ULAR + ileo tips welcome!

Postby Rock_Robster » Wed Jul 17, 2019 8:03 pm

Hi all, so this Monday 22nd I go in for laparoscopic/robotic ULAR with a temp ileostomy. I’ve been through most of the general surgery readings etc. posted here, and am solid on the walking, breathing etc. having had an open liver resection back in March.

What I’d love to hear is any personal tips from those who’ve been through this. Whether it’s around eating, recovery, pain, managing a stoma - I’m open to suggestions on anything that helped you!

Thanks again,
Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

Punky44
Posts: 403
Joined: Mon Oct 01, 2018 4:29 pm

Re: ULAR + ileo tips welcome!

Postby Punky44 » Thu Jul 18, 2019 10:20 am

Just went through this with my mom!

Her recovery from the surgery itself wasn’t a big deal at all, but we had so many leak issues at the beginning with the ileo because the output was so watery—it took a few weeks for it to bulk up to the consistency of baby food and then the leaks stopped. MissMolly and others gave me great tips to prevent and manage leaks (you can search my threads.)

My mom had issues with dehydration (due to the excessive watery output) so make sure you stay hydrated—Sugar free/reduced sugar Gatorade worked for her.

The thing may bleed a little every time you change it and that’s normal.

It may also form granulomas if the bag equipment rubs against it—also normal.

You start to become a pro about when you need to change the bag and how efficiently you can change the system after the first few weeks—we learned not to even think about changing it until post 2 hours eating or it would be a mess.

Good luck—it is only temporary!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — nodules on lungs—possible infection or mets—PET scheduled for 11/25

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: ULAR + ileo tips welcome!

Postby Rock_Robster » Thu Jul 18, 2019 5:26 pm

Thanks Punky, that’s really helpful!
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

tminor5
Posts: 37
Joined: Wed Jun 13, 2018 11:46 am

Re: ULAR + ileo tips welcome!

Postby tminor5 » Thu Jul 18, 2019 5:28 pm

My husband had a colostomy in May 2018. End of March 2019 went in for take down. He now has a temp illeostomy (which is a good thing because his colostomy take down connection is too small and they are having to enlarge it to do the ileo take down) Anyway I have found the illeostomy has been more difficult for us. We also had leak issues. He has to eat by 7pm for me to be able to change his wafer and such the next morning. If he doesn’t we have serious draining while trying to change it. We actually have to use a paste (that is usually odd with an ileo) and other things to make a good seal. He had hip replacement on June 25 and is feeling awesome. Needless to say he has been doing more. So he had had a couple leaks. We have found that he can’t like bend down from a sitting position or it breaks the seal on the edges. We also found (since it leaked during the day just after he ate) that duct tape does hold the seal until we could change it the next morning. The other time it was over night so we just changed it when he caught it.
DH DX at 46  pT4a,pN1a CEA 1.6
5/25/18 ER bowel obstruction
5/26/18 Colonoscopy couldn't insert stint
5/27/18 Surgery removed 18", not seen on any near by organs, colostomy due to infection
6/25/18 1st FOLFOX (12 cycles)
11/26/18 Last chemo
12/17/18 Colonoscopy clear
3/29/19 Colostomy takedown (temp illeo because of scaring)
5/23/19 Scan (sm node lung believe scar tissue)
6/20-7/25-8/9-8/20-9/5-9/26 Colon stretch for illeo takedown
10/3/19 Scan (node same)
10/25/19 Ileo takedown

Gravelyguy
Posts: 263
Joined: Thu Jul 05, 2018 6:03 pm

Re: ULAR + ileo tips welcome!

Postby Gravelyguy » Fri Jul 19, 2019 7:44 am

Rock,

I found that changing the bag right away in the morning was the best time for me. Once I got used to changing it, I started changing in the shower. I would set up all the the changing supplies next to the shower beforehand. Then take off the old bag rim the shower. Shower without the bag )felt great). Towel off in the shower and then quickly put the new one on.

This way if it started spewing it just ran down the drain and I could wash the rest off and start over. It worked great for me!

Hope this helps,

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

Eleda
Posts: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: ULAR + ileo tips welcome!

Postby Eleda » Fri Jul 19, 2019 8:03 am

I stopped eating late the night before so my stoma wouldn't b active in the morning so I'd take off the old one
Shower and have the new one on no probs then ( nice and fresh)
It took me a while to get the right bag ( coloplast convex) and from then on never had another, problem after that I also used the seals so if the bag was cut too big it didn't matter
Getting the bad right means everything
Good luck

ADELE x
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

ozziej
Posts: 239
Joined: Thu May 21, 2015 8:35 pm

Re: ULAR + ileo tips welcome!

Postby ozziej » Sat Jul 20, 2019 3:48 am

Hi Rob
I'm also an Aussie and live in rural Victoria.
I had a ULAR with temp ileo in March 2015, reversal in May 2015, so I'm 4 years out.
However, my surgery was open rather than laparascopic, so my recovery time was probably longer than what you might experience. I was in hospital for 10 days. Had my ileo for 12 weeks. The stoma nurse was very helpful and showed me how to manage the stoma and equipment. For me, having the stoma was the easy part. I ate a low residue diet to avoid obstructions, and had no real trouble with the bag.
My problems started after reversal. Most ULAR patients can expect to have some degree of LARS, which is what I developed. It has been a challenge, but eventually I've found what works for me to give me a good quality of life.
My advice would be to take it one step at a time, it's a marathon not a sprint. Stoma websites have lots of helpful information. Post reversal, there is a great website and Facebook page to provide support for people with LARS, if you find that you have ongoing issues.
If you have specific questions after your surgery then just post them here and we will try to answer them. There is always someone who has had a similar experience.
Best wishes for Monday.
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: ULAR + ileo tips welcome!

Postby Rock_Robster » Tue Jul 23, 2019 12:55 am

Thanks so much everyone for all the tips. This forum is amazing.

Had the surgery yesterday, and in the surgeon’s words it went “perfectly”. Had a play with the bag today, it’s gonna be a learning curve but we’ll get there!
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

User avatar
Maggie Nell
Posts: 1134
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: ULAR + ileo tips welcome!

Postby Maggie Nell » Tue Jul 23, 2019 2:15 am

Good to hear everything went tickety-boo.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
July 2019 : pending liver U/S, colonoscopy
rut roh

ozziej
Posts: 239
Joined: Thu May 21, 2015 8:35 pm

Re: ULAR + ileo tips welcome!

Postby ozziej » Tue Jul 23, 2019 8:23 pm

Glad to hear things went well.
Give your stoma a name and boss it around.
Things called Eakin seals (like playdough rings) are a big help if experiencing leaks.
Remember to stay well hydrated and eat low residue, avoiding skins, seeds etc. Chew, chew, chew.
Change your bag in the shower. If you find your stoma spits whilst being changed, try eating a few marshmallows about 30 mins before the change.
There are different types of wafers and bags so, if the one you have is giving you grief, ask to try a different type.
If you experience a lot of itching you may have thrush, easily dealt with by fluconazole.
Keep a change of clothes handy just in case you have a blowout.
You can do this. Before long you will be saying goodbye to junior.
Best wishes.
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

Punky44
Posts: 403
Joined: Mon Oct 01, 2018 4:29 pm

Re: ULAR + ileo tips welcome!

Postby Punky44 » Wed Jul 24, 2019 10:01 am

Glad your surgery went perfectly!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — nodules on lungs—possible infection or mets—PET scheduled for 11/25

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: ULAR + ileo tips welcome!

Postby Rock_Robster » Thu Jul 25, 2019 3:06 am

Thanks guys. Apparently I have quite a “high output” (yay) and it’s very watery, so they want to see it thicken up before I go home. It’s only day 3 after surgery though so they want to wait and see what it does first before trying any medical tricks. I had a brief round of cramping and vomiting this morning too which was less than fun, but that passed fairly quickly.

Drain is still in too as that’s also still doing lots of stuff (I’m just too productive apparently :shock: ).

So fingers crossed for some slowing down and thickening up over the next few days!

Cheers, Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: ULAR + ileo tips welcome!

Postby Rock_Robster » Tue Jul 30, 2019 8:09 pm

A brief update... now and feeling pretty good - still on the painkillers, but will start tapering soon. Pathology was pretty good - clear margins and 1/26 lymph nodes positive. While of course I’d prefer that to be 0, under the circumstances I’m happy :) .

Output has calmed down a lot, still having the occasional high-output event but generally much more as expected. Doc has me on loperamide x2 per day to keep things calm for now. And - touch wood - no leaks yet!

Thanks to all for the tips.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

Punky44
Posts: 403
Joined: Mon Oct 01, 2018 4:29 pm

Re: ULAR + ileo tips welcome!

Postby Punky44 » Wed Jul 31, 2019 1:38 pm

Glad to hear! And great news about no leaks!! That was the worst thing for us and once we got that under control it was just a mild annoyance until reversal day.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — nodules on lungs—possible infection or mets—PET scheduled for 11/25

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: ULAR + ileo tips welcome!

Postby Rock_Robster » Mon Aug 05, 2019 10:58 pm

Just a brief update for those following along - things are slowing settling down, which is good. I’ve done 3 bag changes myself, with only one leak (and I know what I did wrong!). I’m up to 4 Imodium per day, but that’s ok. The output isn’t too bad during the day, but very liquid overnight (which gets me up every few hours) so the nurse has arranged for some gelling sachets for me to try in the bag before bed, along with an extra Imodium.

Just a shout-out for a product which is helping a lot (which I’m not affiliated with in any way!) - the Stealth Belt. I bought it online and if arrived today, and I’m so much more comfortable with the weight/pressure taken off the adhesive seal, and also knowing that if the bag ‘peeks’ out from under my clothes it just looks like black fabric. I don’t think I’ll be taking it off except to shower! I got it in the vertical (Stingray) version so I didn’t have to try to wear an ileo bag sideways, but the horizontal version looks good for colostomies too. Not cheap but worth it.

Cheers,
Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal


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