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Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Aug 07, 2018 3:23 pm
by ocstacy
It's been a lot of 1, 2, 1, 2, 1, 2 and sometimes 1, 2, 2, 1, 2, 2, 1, 2, 2. I hop in the shower after every couple of rounds to clean up areas that I can't get with toilet paper.


Hi mike,

Sounds a like what my mama is going through. She had to stop Metamucil and take Immodium for Diarrea. I got her Aquaphor to help her pain on her rear. She said she is so sore down there from going so much. What do you use for cream or ointment? We bought her "Calmoseptine" as I heard that worked well, but she said that it didn't help her soreness. So then I bought her Aquaphor and that seems to help. She pretty much needs to stay at home due to the bathroom issues. She is only only 2 weeks post op, and I know she needs to at least have one more to heal. Are you taking that nerve medication? Anyhow, hope you are healing well, but sounds like you both are on the same road to recovery. I just miss going out with my mom. She still feels uncomfortable leaving and she has to wear pads for protection. My mom will never wear a diaper. :0(

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Aug 07, 2018 3:46 pm
by NHMike
ocstacy wrote:
It's been a lot of 1, 2, 1, 2, 1, 2 and sometimes 1, 2, 2, 1, 2, 2, 1, 2, 2. I hop in the shower after every couple of rounds to clean up areas that I can't get with toilet paper.


Hi mike,

Sounds a like what my mama is going through. She had to stop Metamucil and take Immodium for Diarrea. I got her Aquaphor to help her pain on her rear. She said she is so sore down there from going so much. What do you use for cream or ointment? We bought her "Calmoseptine" as I heard that worked well, but she said that it didn't help her soreness. So then I bought her Aquaphor and that seems to help. She pretty much needs to stay at home due to the bathroom issues. She is only only 2 weeks post op, and I know she needs to at least have one more to heal. Are you taking that nerve medication? Anyhow, hope you are healing well, but sounds like you both are on the same road to recovery. I just miss going out with my mom. She still feels uncomfortable leaving and she has to wear pads for protection. My mom will never wear a diaper. :0(


I'm not using any creams for soreness. In general, things are okay if I can get three or four hours of sleep (the skin heals). I'm actually in the office right now. I came in to talk to someone but they were busy so I may come back tomorrow or Friday. It's very tricky stuff. I am not taking the nerve medication - Gabapentin I presume. I'm just living with the neuropathy hoping that it declines over time. These days, I usually wear a diaper and put a pad in it. Most accidents will be contained by the pad so I can reuse greatly decreasing waste and cost. I'm purely pragmatic - if something works I'll give it a shot.

I'm using diet-timing right now. Eat once a day so that the output is predictable with-regards-to-time. It's definitely challenging though.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Aug 07, 2018 4:00 pm
by Eleda
Can u not take immodium Mike to thicken Ur output therefore reducing frequency and liquidity??? And someone also recommend in a previous post a keto diet helped hugely!!!!
I'm beginning to dread the reversal period now!!!!!
Looks like a tough ride :| :| :|

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Aug 07, 2018 4:15 pm
by Foreveryoung
I just had a follow up with my surgeon, two weeks post the ileostomy reversal. He said he generally doesn't like using immodium and would recommend slowly incorporating psyllium husk (1 teaspoon a day) to my diet starting next week.

Also he said don't use soap down there. That area doesn't need to be super clean. Desitin has worked wonders for me, and warm water toilet paper has been my weapon of choice. I'm going through almost a roll a day (20+ BMs daily), but just ordered a Toto bidet.

One thing to note, I've been showering with my wound covered. But the nurse said that I should be showering with the wound open and have soap/water run over it. This will speed up recovery and helps with granulation.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Aug 07, 2018 4:26 pm
by Eleda
Yes the husk is a good idea,,
Showering with the open wound????
Sweet baby Jesus!!!!!! I dunno ????
Sounds excruciating :?
And the sitz bath should be great n this case too,,
I've a press full of imodium and miralax,,, depending on what I needed, but fortunately ATM neither,, as in doing mop up,,,,,, I did use the adult pull ups and found them great after surgery ( random jelly type leeks )
I hope it resolves soon for u
Adele X

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Aug 07, 2018 4:36 pm
by NHMike
Eleda wrote:Can u not take immodium Mike to thicken Ur output therefore reducing frequency and liquidity??? And someone also recommend in a previous post a keto diet helped hugely!!!!
I'm beginning to dread the reversal period now!!!!!
Looks like a tough ride :| :| :|


I think that mine is complicated by a stomach bug. Things were getting better last Wednesday and Thursday, and then it all fell apart Friday evening. The stool was getting darker and firmer and it would have been easier to manage (not easy but easier). Today, some of the darker stool came back and I suspect that that's due to the Pepto Bismol. I'm going to take another two doses and hope that kills the stomach bug. Whatever the bug is - it's mild, because it hasn't slowed me down much.

I think that the surgeon will recommend Immodium for control at the post-op meeting and I think that one of her residents hinted at this. But I don't know that it will help if I have a stomach bug.

Most people that I've read have a challenging time with the reversal. A very few have no problems with it and I think that you have everyone in-between with some having it so hard that they go to a colostomy. I can see this working but I have a hump to get over.

On the positive side, a lot of the things that used to cause abs twinges no longer do. I can get out of bed without much extra effort and I can get in and out of the car without thinking about levers and limbs.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Aug 07, 2018 4:39 pm
by NHMike
Foreveryoung wrote:I just had a follow up with my surgeon, two weeks post the ileostomy reversal. He said he generally doesn't like using immodium and would recommend slowly incorporating psyllium husk (1 teaspoon a day) to my diet starting next week.

Also he said don't use soap down there. That area doesn't need to be super clean. Desitin has worked wonders for me, and warm water toilet paper has been my weapon of choice. I'm going through almost a roll a day (20+ BMs daily), but just ordered a Toto bidet.

One thing to note, I've been showering with my wound covered. But the nurse said that I should be showering with the wound open and have soap/water run over it. This will speed up recovery and helps with granulation.


Hmm. I guess I'll see what my surgeon says but I wouldn't expect anything different or else she would have recommended it after surgery.

There are some times when I will just fill a bucket with water and pour it out with a plastic bowl over my lower parts. I use shampoo when I take a shower. I try to do more of the rinses because they are quicker.

A roll a day sounds about right. I was thinking of buying a water bottle with a squirt nozzle.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Aug 07, 2018 4:46 pm
by Foreveryoung
I thought you are using a bidet? I went ahead and purchased one based on your post, set to arrive on Thursday.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Aug 07, 2018 4:49 pm
by NHMike
Foreveryoung wrote:I thought you are using a bidet? I went ahead and purchased one based on your post, set to arrive on Thursday.


I had one in the hospital room.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Aug 07, 2018 5:07 pm
by heiders33
I showered with my wound uncovered. It helped clean the area and actually felt pretty good.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Aug 07, 2018 5:15 pm
by NHMike
heiders33 wrote:I showered with my wound uncovered. It helped clean the area and actually felt pretty good.


The doctors put a piece of tape on it that allowed air to flow below and above the gauze and indicated that I could shower with it like this and let the water get in the gauze. The nurse taped the top and the bottom so air could flow in the middle and I guess that water could get in that way. So both designs were intended for it to breathe and that includes water.

The doctors didn't tell me about showering with the gauze off though.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Aug 07, 2018 6:35 pm
by Caat55
I have concerned about my skin, wiping, breakdown post reversal. I went to a local surgeon, Board certified, rather than the 6 to 8 hour nightmare of traffic to Stanford. He said my skin is too fragile to even do the barium enema. He recommended two more months of healing and then to come back. I will let my Stanford doctor know what's up. He said that every thing is looking so good with CEA, response to treatment, not to rush into reversal.
I can live with ileo for a bit. I couldn't take what you are going through Mike.


S

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Aug 07, 2018 7:02 pm
by Eleda
Susan is that from the radiation Ur skin is still that bad??????

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Aug 07, 2018 7:23 pm
by Caat55
Eleda wrote:Susan is that from the radiation Ur skin is still that bad??????

Yes. I am very fair skinned. Damage was healing then surgery and chemo and nack again.

Susan.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Aug 07, 2018 9:07 pm
by NHMike
I had a real dinner with lots of protein and fiber. Total of about 1,000 calories. We’ll see how much I have to pay for it in the morning.

Bought Depends from Costco along with two boxes of pads. These should last a week under the worst case scenario.