Mom's ileostomy reversal 07/24/18

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ocstacy
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Mom's ileostomy reversal 07/24/18

Postby ocstacy » Thu Jul 26, 2018 1:57 am

Hi all,

My mom had her reversal done on 07/24/18 7:20 a.m. Her surgery lasted about 2 hours, her recovery was much longer. Her surgeon walked out to the visitor's lounge and I was surprised to see him so early. He said surgery was a success and my mom did great, however, they did find a hernia behind stoma and had to repair it during surgery. I wasn't happy to hear that as it caused my mom problems with her last surgery. We were expecting my mom to get out of recovery sooner but it wasn't until about 1 pm. is when we went to the room. My poor mama was in so much pain and this was after they gave her Morphine and all. It was hard to see her in that much pain. Her pain level was a 9 and she was making all kinds of noises and I couldn't take it anymore. So I went and got crushed ice and put it in her mouth and elevated her head. Gave her some juice to drink, lemon slushee, water little by little. Her face started to have some color after that. Her nurse gave her oxycodone and all the goods, and her pain level gradually started to go down to a 6-7. Fast forward to today. Still on clear fluids, and today her mid section blew up and became puffy filled with gas. We all encouraged her to walk around the hospital to get the gas out. She walked a lot today and only took Tylenol for pain She burped and finally she had some gas come out of the other new end. While that happened she had her 1st leaky BM. We had to get the bedside commode and get her in some mesh underwear and I even put a diaper on her just to be safe of an accident. She had about 3 more soft BM's more like diarrea, and it look like there was some tissue and lubricant in there from the new plumbing starting, sorry to be so graphic. My mom was getting irritated cause everytime she would pass gas, she would leak :-( So that is when I reminded her again that it would take a while for her to get used to it, and hopefully eventually it may get better. It looks likes she will get discharged in the next couple of days. She stopped the narcotics and the nurse said that it will make the healing process faster, just Tylenol for pain. Anyhow, I am super exhausted as living in the hospital got very tiring. I felt like a nurse more than the other nurses working at the hospital. Everytime my mom would push the nurse button, it would take them forever to walk into the room to help. I am exhausted and ready for bed. My mom will be staying with me and family for a week after. I pray and hope this is the last surgery for us and that her BM's get easier. Just happy that her recovery is getting easier as the first surgery recover was much worst. I am hoping when she gets discharged, her home recovery will be much easier. :D Some questions that I have: 1. What types of creams do you recommend to use on the "BUTT" after reversal? 2. Did you wear mesh underwears, pads or pull-ups for the accidental leaky bowel?

Thank you,

Stacy
Last edited by ocstacy on Fri Jul 27, 2018 1:57 am, edited 1 time in total.
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Mom's ileostomy reversal 07/24/18

Postby NHMike » Thu Jul 26, 2018 5:37 pm

Thanks for all of the graphic detail to set my expectations for next week.

I've had a few previews of this already with the couple of times when I slept flat and stuff flowed from the bag to the large intestine through the other side of the stoma so I know a bit as to how it should feel and I just wore a large pad which caught things. I would not wash any of the pads that are designed to be disposable. I think that I tossed out the mesh underwear as well as I didn't know what it was made of and didn't think that it could survive the washing machine. I plan to bring several pads with me to the hospital.

It sounds like your mother had a rough time but you also did a great job. I think that it helps a lot to have family in the room all the time or a good deal of the time and sometimes it can save a life or prevent a problem.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

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ocstacy
Posts: 264
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Facebook Username: stacy

Re: Mom's ileostomy reversal 07/24/18

Postby ocstacy » Sat Jul 28, 2018 2:54 am

Thanks for all of the graphic detail to set my expectations for next week.


Hi Mike,

I will be thinking of you and wish you a successful surgery and fast recovery. My mom's dr. wanted to discharge her today, but my mom didn't feel comfortable due to her diarrhea. She had her first real meal in almost 4 days and she ate everything on her plate, and she mentioned that her BM was much more firm so that made her feel happy. Pretty neat that I was there for her first gas, first real BM after 9 months. I think the key to healing after surgery is walking, walking and walking to get the bowels working again. Also, she had BAD gas, so walking around the hospital def. helped with that. She didn't bring enough underwear, so that is when the nurses suggested mesh hospital underwear and even diapers cause it does get messy. My mom was so embarrassed wearing diapers, but hey they helped for the 1st two days. I think after she started to walk on day 2, that is when her 1st BM began. I was there to witness everything and let me tell ya, it was a rather interesting, yet proud moment :lol: I plan to pick mom up tomorrow a.m. with my daughter and father. I have the guest room all ready for her with a brand new bed, brand new sheets, pillows, and bath towels. I even threw in a bedside commode just in case she can't make it to the bathroom in time. I used it during my colonoscopy prep and it was so helpful just having it in the living room while watching T.V.! I even got her a new remote control lazy boy chair for the living room. What a nice daughter I am. Keep us posted on your hospital recovery, etc. best of luck. :D
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

tater
Posts: 133
Joined: Wed Jul 19, 2017 5:53 pm

Re: Mom's ileostomy reversal 07/24/18

Postby tater » Mon Jul 30, 2018 8:52 am

ocstacy wrote: :D Some questions that I have: 1. What types of creams do you recommend to use on the "BUTT" after reversal? 2. Did you wear mesh underwears, pads or pull-ups for the accidental leaky bowel?

Thank you,

Stacy



My wife is four weeks post surgery. To try to answer your questions is yes the hospital did send her home with a product for a barrier. Its a cream and I believe it is called cologuard. It has helped a lot. The other thing that has been helping are flushable wet wipes and we purchased before radiation from amazon a cheap bidet that attaches to the toilet and this really has been a life saver. She also wore those disposable diapers the first few nights and they did help. I don;t think she wears them much anymore. She does wear a extra large always pad now. I think things are getting better but she is far from any type of normal. I remember her first gas, it was very painful for her but now she is fine. The good news is that the wound is almost healed.

good luck
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Mom's ileostomy reversal 07/24/18

Postby Aqx99 » Mon Jul 30, 2018 10:33 am

My pelvic physical therapist told me to use diaper rash cream in order to protect the skin from the caustic bowel movements. I was all red and inflamed down there because I hadn't been wiping for 7 months, so my sweat had been just sitting there. After starting the diaper rash cream, she told me my skin looked much better. I also use Aquaphor sometimes, if I need to heal the area from too much wiping causing it to bleed. I wear pull up diapers. I buy the Walmart brand. They are actually pretty comfortable, most of the time I forget that I am wearing them. They also have done a great job containing accidents.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: Mom's ileostomy reversal 07/24/18

Postby teachpdx » Thu Aug 02, 2018 8:37 pm

I highly suggest getting a bidet seat/attachment. I have a "Biffy" that has saved my ass. Wiping is so painful and no wipe is as gentle as water. Some of the models heat the water. Barriers help, butt then when you go you now have slippery poop/barrier which is even MORE difficult to deal with.

Best of luck getting some rest.
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Mom's ileostomy reversal 07/24/18

Postby NHMike » Thu Aug 02, 2018 8:56 pm

ocstacy wrote:
Thanks for all of the graphic detail to set my expectations for next week.


Hi Mike,

I will be thinking of you and wish you a successful surgery and fast recovery. My mom's dr. wanted to discharge her today, but my mom didn't feel comfortable due to her diarrhea. She had her first real meal in almost 4 days and she ate everything on her plate, and she mentioned that her BM was much more firm so that made her feel happy. Pretty neat that I was there for her first gas, first real BM after 9 months. I think the key to healing after surgery is walking, walking and walking to get the bowels working again. Also, she had BAD gas, so walking around the hospital def. helped with that. She didn't bring enough underwear, so that is when the nurses suggested mesh hospital underwear and even diapers cause it does get messy. My mom was so embarrassed wearing diapers, but hey they helped for the 1st two days. I think after she started to walk on day 2, that is when her 1st BM began. I was there to witness everything and let me tell ya, it was a rather interesting, yet proud moment :lol: I plan to pick mom up tomorrow a.m. with my daughter and father. I have the guest room all ready for her with a brand new bed, brand new sheets, pillows, and bath towels. I even threw in a bedside commode just in case she can't make it to the bathroom in time. I used it during my colonoscopy prep and it was so helpful just having it in the living room while watching T.V.! I even got her a new remote control lazy boy chair for the living room. What a nice daughter I am. Keep us posted on your hospital recovery, etc. best of luck. :D


A lot of this applied to me. Not enough underwear, loose stools wearing me out, diaper rash from not pooping in nine months, not wanting to leave a day before scheduled. You can read the gory details on my thread. I hope that she's doing a lot better now.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Mom's ileostomy reversal 07/24/18

Postby NHMike » Thu Aug 02, 2018 9:00 pm

teachpdx wrote:I highly suggest getting a bidet seat/attachment. I have a "Biffy" that has saved my ass. Wiping is so painful and no wipe is as gentle as water. Some of the models heat the water. Barriers help, butt then when you go you now have slippery poop/barrier which is even MORE difficult to deal with.

Best of luck getting some rest.


Some of the stuff in the early days is gastric juices and they are yellowish in color and it leaks out, whether with diarrhea or with the first, small clumping stools. You get this in your bag and can see it most clearly when you haven't eaten in 16 hours (all of the food has flushed through). It is very hard to get rid of it completely when you clean up and it can accumulate in the diaper and get back on your skin. I like to take a small container and pour warm water in the shower to get rid of it. That's the best way I've found without having to take a full shower.

Getting control is very nice in that you don't need anywhere near the number pads and diapers but you may still wind up sitting a lot on the toilet.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT


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