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Rectum removal

Mbanda1969
Posts: 3
Joined: Dec 2018

Hi my dad just had his reversal where they hooked his colon to his anus and he can’t stop going to the bathroom his bottom is so red and raw and he is in the highest amount of lomitil (the anti diarrhea med)nothing is helping his surgery was oct 19th and we recent went to his coloneectal dr and she basically said there is nothing We can do just try to control with meds and food and last resort would be a liquid  drug op drug does anybody have any advice?

Annabelle41415's picture
Annabelle41415
Posts: 5810
Joined: Feb 2009

Try the BRAT diet.  Bananas, rice, applesauce and toast.  Rice binds up very well.  Unfortunately this is one of the side affects of being without a rectum as mine is gone also.  I'm still going up to 15 times a day but when first starting out it was about 35 and yes the bottom gets terribly raw.  Have him try a sitz bath to help.  Also calmoseptine (get that behind the pharmacy counter) and it works wonderful as a barrier for skin that has been exposed to the acid from the diarrhea.  I'm not able to eat during the day if I'm going somewhere as the food will go right through me with little to no warning and it's been 10 years.  I'm hoping that things improve for him.  I've been there and feel for him.

Kim

Mbanda1969
Posts: 3
Joined: Dec 2018

thanks So much Kim we are also dealing with depression he dont Want to get out of bed or go anywhere anymore! Anytime he tires to go to market or anything he’s has to turn right around and change his diaper/pad

Annabelle41415's picture
Annabelle41415
Posts: 5810
Joined: Feb 2009

It's so very familiar to me.  Give it some time though.  He will likely get better and not worse.  Make sure that he knows where the bathrooms are at when he goes somewhere - that can make a big difference on if he will go out or not.

Kim

Mikenh's picture
Mikenh
Posts: 797
Joined: Oct 2017

I joined Planet Fitness this past summer so that I could workout late at night or early morning but it's turned out to be helpful after the reversal. They have a lot of gyms in my area and the ability to use a clean bathroom, open 24 hours a day, makes life a little easier.

Kazenmax's picture
Kazenmax
Posts: 188
Joined: Feb 2016

That must be horrible for him! I can't imagine.

I had my rectum, sphincter, and anus removed so I had No choice but a bag. In the long run it hasn't been too bad. 

I'm so sorry he's experiencing this. Hope things settle down soon.

K

Mikenh's picture
Mikenh
Posts: 797
Joined: Oct 2017

I went though this as well and am still dealing with it but it seems like your dad has more problems than I had.

I had runny stools for about two weeks. The large intestine's job is to remove water from waste and it can take a while to get back to doing its job after resting for a long time. Waste is caustic and can cause great irritation to the skin in the area. There are a number of barrier products that I bought to try out. I only used Cavilon Spray and Lantiseptic Cream but I also bought Calmoseptine ointment and Cavilon Cream. I used Sage Shield products in the hospital (they had them there). These are barrier cream cloths. The idea is that they protect the skin that the waste gets on. I think that Calmoseptine also has a pain reliever.

Toilet paper generates a lot of friction which can result in irritation. Many will recommend getting a bidet if possible. I bought a few three packs of Peri bottles. These are small bottles with a spray head. You fill them with water and use water to wash off the waste instead of toilet paper. I also buy Kirkland Diaper wipes by the thousand pack as those can be useful. I also use Depends with pads. I don't always use the Depends - it depends on how I am feeling.

When I go out, I have a bag with three peri bottles, diaper wipes, Depends and pads. Sometimes I don't need any materials and sometimes I need everything. Sometimes things are a mess but most times they aren't and things are gradually getting better. I talked to the surgeon about how bad it was and she told me that this is expected and that things improve after 1 month, 3 months and six months but it can take a year to feel normal. Some number of people don't ever get to that point. But the option for a permanent colostomy is always there.

Then there are drugs. The usual drug for slowing things down is Imodium (Lomotil may be the same thing). It takes a while to get used to using it and figuring out dosage and timing. I also use fasting - I will stop eating for 20 to 40 hours if I have to do something and be sure that my GI system won't be a problem. Doctors will usually recommend a fiber supplement. The purpose of the fiber supplement is to bulk up waste to avoid clustering - clustering is when you need to go to the bathroom every ten minutes for several hours.

Some also take a laxative like Miralax. There are two ways to avoid accidents: speed things up or slow them down. The idea of a laxative is to speed up the evacuation process so that you have freedom for some period of time.

Some people do daily enemas in the morning. They clean themselves out and then have the rest of the day available. I asked my surgeon about them and she said no. So I don't do them.

The best place on the web to chat about these problems is https://www.facebook.com/groups/786555674854989/ - there are about 600 people there with these kinds of problems - there's a lot of knowledge on how to make things manageable.

These links may be helpful:

https://bmcsurg.biomedcentral.com/articles/10.1186/s12893-018-0368-5

https://www.sth.nhs.uk/clientfiles/File/Managing%20Bowel%20Function%20after%20Colorectal%20Cancer%20Treatment%20-%20Louise%20Foster.pdf

 

 

 

 

 

ellend
Posts: 94
Joined: Apr 2016

I found the following discussion board helpful. The link I posted is just for reversal questions and issues.

https://www.uoaa.org/forum/viewforum.php?f=25&sid=aa3e94f0733dc10b518860d6b786df78.

My surgeon also suggested fiber to thicken the output. That seems to help as well as the BRAT diet suggested earlier. Drinking water is important to avoid dehydration. Some foods make things worse for me. I cut way back on soda, drinking them only occasionally. Caffiene, including black tea also seems to speed things up and lead to diarrhea. Spicy food is mostly out too, though I will indulge occasionally - sometimes paying for it later.

Your dad's post-reversal symptoms are not that unusual, unfortunately. It does get better, it just takes awhile for the colon to get used to working again.

Good luck.

Ellen

Lovekitties's picture
Lovekitties
Posts: 3288
Joined: Jan 2010

Is he able to eat rye bread?  I have found that it tightens up the stool as well.

For the red bottom you might want to see if you can connect a bidet seat to his toilet.  I know they make them.  It might help to make sure the area is clean.  Might also try baby wipes with aloe or any ointment made for babies bottoms for diaper rash.

Food instake more often with smaller amounts and always a BRAT component might help as well.

Hope something offered here on the board helps.

Marie who loves kittes

Trubrit's picture
Trubrit
Posts: 4517
Joined: Jan 2013

I purchased two from Amazon, and they were only $26 (at the time). Spraying the bottom is not only soothing, but it cleans better and you don't have to rub the sore area with toilet paper. I pat dry with a special towel, used just for that purpose. 

I still have accidents. I had one at work yesterday, and was grateful there were no customers around, or my boss. Like Kim, you learn to live with certain things, without them stopping you living your life.  Your dad will learn also, but its hard to come to terms with, at first. 

Keeping a food diary and a seperate BM diary helped me to learn what foods trigger and what foods help.  I keep a little two year calendar by the loo, an just keep a tally of how many BM's I have each day. I've done that since diagnosis, six years ago. I'm happy to say, things have improved, tremedously. 

What a wonderful daugther you are, to come searching for answers.  All my best to your dad, as he goes forward and lives life. 

Tru

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