Rectal fissure post reversal

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ocstacy
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Rectal fissure post reversal

Postby ocstacy » Mon Aug 13, 2018 10:58 pm

Hi all,

Tomorow marks my mother's 3-week recovery from ileostomy reversal. She was doing okay up until last week when she developed a horrible excruciating pain in her rectum. She said her pain level was a 9 and explained it to be like "Ice picks" while going to the bathroom. So she finally took an Oxycodone. I had a conference call with the on- call rectal surgeon dr. and she thought it was a fissure base on her complaints. She had her follow up appt today with the rectal surgeon and it looks like her pain is from a fissure in her sphincter muscle from hard bowel movement. He has her taking a special powder drink to numb the muscle for a week so it can heal.. and she is also on a cream called "Clotrimazole and Betamethrasone Dipronopionate". Has anyone tried this?

My mom came over and she could barely stand or sit without shaking or moving around. She spends most of her time in the bathroom and home and she cannot go anywhere as she feels the need to always go. I feel so bad for her but I warned her about how the healing can take a while and sometimes this is just how it will be. Here are my questions:

1. Is this a normal healing process for a reversal ileostomy? Even a fissure?
2. When do you start to feel somewhat normal again to where you can travel on a road trip, fly, or even go shopping or to the zoo?
3. We have spent a fortune on creams/meds for her. She loves Aquaphor, and we tried the expensive zinc creams such as Calmoseptime, etc. I have also bought her sitz bath that you can put on a toilet commode but she WILL not try it. She is stubborn. We have metamucil, immodium, myralax, etc. etc. The Metamucil she stopped due to making her go alot but now I'm thinking she should still take it.


My mom couldn't even attend my daughter's b-day party yesterday and she lives on our same street. I feel awful for my mom because I was hoping that her life would be getting better after the reversal but it's almost like she can't even enjoy her life anymore. She has also lost about 12 pounds which I am really worried about thinking it's from the diarrhea. I have offered her the Ensure drinks too. I hope that she will feel better soon. This whole process has been hard on the whole family. Hard seeing her in so much pain and discomfort. We are hoping that this fissure will go away. I hear they hurt bad!
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 - back home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileostomy reversal 07/24/18
First BM after reversal 07/25/18
Me: 1st Colonoscopy age 38. 08/17 Benign polp.

NHMike
Posts: 1674
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal fissure post reversal

Postby NHMike » Tue Aug 14, 2018 5:28 am

Hello Stacy,

I was wondering how she was doing and it sounds like she's still having a tough time. I'm having a tough time as well with these crazy bouts of three to four hours in the bathroom to clear out the colon and it often gets a little painful and there's some blood.

But I'm able to get out of the house and I've been going to work daily. I'm in Boston at the post-op meeting and it was a one-hour drive in from home. What I've worked really hard on is products and logistics. The products are diapers, wipes, pads, the radiation seat cushion, and Chux. The logistics involves knowing where handicapped bathrooms are available along the way or at my destination. I do not think that I can fly anytime soon but I do think that I could dispense with the diapers and just use pads if I can find the brand that the hospital uses. The ones that they use are the best that I've run into - I just haven't figured out where I can buy them.

When I went up to my room after reversal surgery, I was in the bathroom doing my thing and the nurse was in the room talking and then she came into the bathroom to chat and she made the comment that I wasn't embarrassed that a stranger was in the bathroom with me - I said something like it wasn't a big deal at my age as I've been through it all. And something like not wanting to wear diapers may be not wanting to accept that we're aging. But I have a lot of things to get done and try to be pragmatic so that I can live life as best as I can.

Things are challenging for me at two weeks. I do not expect them to get significantly better at three weeks so I'm not surprised that she finds things challenging. The surgical site should be getting better quickly so she may have fewer restrictions but spending a lot of time in the bathroom wears you out, puts stress on parts of your body that can break down, and isn't great for your mental health unless you can find something that you really like to do or need to do in there.

The diapers can give you enough protection and confidence that you can leave the bathroom for long periods of time. Or sometimes for long enough to take a nap to get some really needed sleep.

My wife put a sheet of plastic on the bed and a diaper (cloth) on top of it. I have only left on small spot (1 cm diameter) on the diaper. It's not comfortable and it moves around so I'd like to get some Chux but the type I want has a minimum quantity of 100 but I may get them anyways. I would really hate for someone to have to clean up for me and I'd guess that your mother feels the same way but they may make it possible for her to get more sleep.

On losing weight: I dropped about 13 pounds in about 11 days after surgery. You eat less so that there's less to come out the other end or you're just too tired to eat or you don't feel like it. I had scheduled things yesterday and today and I limited consumption not eating 12-18 hours before the scheduled things so that I could make the appointments on time without a mess to deal with.

I do wish that there was a book on just the reversal stuff. I have starting materials for such a book but I haven't started yet as I have an accumulating pile of stuff to do at work.

I hope that your mother can get some rest and some solutions toward some areas of normalcy.
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; 9/8: 1.8; 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
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

Caat55
Posts: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: Rectal fissure post reversal

Postby Caat55 » Wed Aug 15, 2018 10:12 pm

I am still healing from chemo, made the skin on my butt extremely red and irritated so I am waiting another two months for reversal. I am actually pretty terrified of the reversal after reading these comments and Mike's. I can say that the fissure was the MOST PAINFUL thing I have ever experienced. Felt like razor blades, this coupled with the fear of an accident would certainly change how and what I would do. Encourage her to sit in the bathtub and soak if she won't use the sitz bath, it helps a lot.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

Phillypatient
Posts: 14
Joined: Sun Aug 05, 2018 11:28 am

Re: Rectal fissure post reversal

Postby Phillypatient » Wed Aug 15, 2018 11:47 pm

I’m so sorry to hear about your mom. Honestly, post reversal is brutal. I would encourage her to use the sitz bath which can provide immediate relief sometimes. Also, Calmoseptine is pretty awesome. I also use witch hazel. And most important, I got a bidet attached to my toilet.
It’s important to stay on top of things because the wear and tear over time is awful. I’m 8 months out and I don’t find things any better. The added wear and tear of sitting on a toilet for hours at a stretch doesn’t build any beneficial sort of stamina or endurance like jogging or lifting weights. It’s literally just torture. And that’s why it’s important to stay on top of this and allow your body to recover and heal from the day before.
I hate to be so negative but this is my honest assessment. I hope things turn out much better for your mom.
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

NHMike
Posts: 1674
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal fissure post reversal

Postby NHMike » Thu Aug 16, 2018 12:11 am

Phillypatient wrote:I’m so sorry to hear about your mom. Honestly, post reversal is brutal. I would encourage her to use the sitz bath which can provide immediate relief sometimes. Also, Calmoseptine is pretty awesome. I also use witch hazel. And most important, I got a bidet attached to my toilet.
It’s important to stay on top of things because the wear and tear over time is awful. I’m 8 months out and I don’t find things any better. The added wear and tear of sitting on a toilet for hours at a stretch doesn’t build any beneficial sort of stamina or endurance like jogging or lifting weights. It’s literally just torture. And that’s why it’s important to stay on top of this and allow your body to recover and heal from the day before.
I hate to be so negative but this is my honest assessment. I hope things turn out much better for your mom.


Thanks for your data points.
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; 9/8: 1.8; 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
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

Caat55
Posts: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: Rectal fissure post reversal

Postby Caat55 » Thu Aug 16, 2018 1:18 am

Costco has bidets seat on sale. I found it easier on bottom when going through radiation than TP. Turned water pressure way down, warm water was soothing.
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

NHMike
Posts: 1674
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal fissure post reversal

Postby NHMike » Thu Aug 16, 2018 11:07 am

Caat55 wrote:Costco has bidets seat on sale. I found it easier on bottom when going through radiation than TP. Turned water pressure way down, warm water was soothing.


Some pretty interesting technology there. It looks a lot better than the one at the hospital that I tried.

You're talking about the type that goes over the regular toilet seat and they run about $400? Do you leave it on all the time or remove it when you are done?

Are these in the stores this week or online-only?

Could you provide the model number too?
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; 9/8: 1.8; 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
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

Caat55
Posts: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: Rectal fissure post reversal

Postby Caat55 » Thu Aug 16, 2018 12:01 pm

It is a replacement to current seat, just need a plug nearby. Stays on all the time, self cleaning. Usually shipping is included, limited products in warehouse.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

Gravelyguy
Posts: 30
Joined: Thu Jul 05, 2018 6:03 pm

Re: Rectal fissure post reversal

Postby Gravelyguy » Thu Aug 16, 2018 5:28 pm

So sorry your mom is having such a rough start to her reversal. No one told me how acidic my bm’s would be nor how painful the backside would get.

I am 2 months out now and I know it is different for everyone but I am way better than I was at 2 weeks. Some things that helped me were eating small meals. When I went to a lower carb diet it seemed to really help. My body wasn’t used to all the carbs. I have been taking a good probiotic for a while now, I take one by Plexus, and that has helped I feel. For the sore bum I would soak in a Dreft bath. I can not stress how much that helped relieve the burn.

I will admit that I still have days when I have to go frequently, particularly in the evenings and there are occasions when I am out and about and I can’t find a bathroom fast enough. But that is way less than in the early days.

Hope everyone can find what works for them. We didn’t fight this long, to get to this place, to not be able to enjoy life.
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me

User avatar
ocstacy
Posts: 262
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: Rectal fissure post reversal

Postby ocstacy » Fri Aug 17, 2018 3:41 am

I would encourage her to use the sitz bath which can provide immediate relief sometimes. Also, Calmoseptine is pretty awesome. I also use witch hazel. And most important, I got a bidet attached to my toilet.
It’s important to stay on top of things because the wear and tear over time is awful.


I had bought her a Sitz bath on Amazon prior to her radiation. I got her the Sitz bath that you put over a toilet commode but she never used it cause she was so stubborn about using a commode. She hates being labeled as a "Handicapped" person, or refuses to use a cane, or wear diapers temporarily to heal, etc. get my drift.. even if it's for the healing process. I am done spending money on my mother because she rarely will use it and it's a waste of money. Her bathtub does not work.. poor thing.. I have offered her to come here but she won't. I think it's cause she can't crawl in and she has osteoporosis and that is another reason why I got her this sitz bath but now she cannot locate it. I even had a butt pillow custom made for her rectum and she uses that. Even the Dr. and nurses suggested for her to use this for her fissure. Here are some of the things I'm inquiring about. I used the #3 while I was pregnant as I dev. really awful hemmy's. This really helped me heal when I was in the worst pain of my life. I probably had a fissure too but I had to take pain meds. My mom is feeling a little bit better but I feel like if she tried the sitz bath, it will help her out.

1. Sitz Bath - https://www.amazon.com/Yunga-Tart-Seatz ... merReviews ( you can put over your toilet or a bedside toilet commode)
2. Costco Bidet- https://www.costco.com/Bio-Bidet-USPA-4 ... 14700.html
3. Perineal hand held squirt bottles.. love these for post pregnancy healing.. for hemmy's.. and it really helped me with the healing and discomfort https://www.amazon.com/Perineal-Lavette ... tal+bottle
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 - back home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileostomy reversal 07/24/18
First BM after reversal 07/25/18
Me: 1st Colonoscopy age 38. 08/17 Benign polp.

stevieb
Posts: 395
Joined: Sat Feb 09, 2013 12:26 am

Re: Rectal fissure post reversal

Postby stevieb » Fri Aug 17, 2018 11:59 am

I had a botox injection into the muscles around the fissue done at MDA when I had my fissure. Pain went away almost instantly and haven't had any since. They put you to sleep for the injection.
Dx age 33
12/19/12 Stage IV liver/lung
1/14-2/28/13 Folfox
3/27/13 rectal/lung rst; temp ileo
7/11/13 liver res/ileo rev
9/30/13 - Folfox
11/13,2/21 NED
3/14 lung recur;6/16-VATS
7/14 5 bi lung mets
10&11/15 laser lung surg
2015 Colondar Model
12/15 5 lung met-folfiri
5/15 NED
11/15 2 lung mets; cryoablation
1/4/17 2 lung mets; cryoablation
NED as of 1/23/17


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