Rectal Cancer Summary

Ginger_Ale

Hi. This is my first interaction with any support forums/chats since my Rectal Cancer diagnosis in early October 2017. I'm sure i'll post more history, but right now, i have a couple of major concerns i'm hoping someone else has some experience with and/or considerations to share. I had 80% of my rectum removed on June 23, 2017. I had an ostomy installed then and it was taken down on Sepetmber 29, 2017. I never experienced loose stools, or diareha on a regular basis before my diagnosis. in fact i was pretty regular. I'm actually doing much better today than i was in early ostomy removal days, but still, it's a big consideration, since i have little storage, and leaking is a problem. I'm trying to stay off immodium, and using foods for stool control, but now I think i may have IBS, and my surgeon wants me to try the FODMAP diet. So I'm going to start that this weekend.

The other thing is I am a 59 year female, pretty much no sex for several years, too embarrasingly long, lol anyway, a little overweight but have all my female parts and no children. I am now diagnosed with level 2 prolapse, seems bladder or uterus us falling into the space between my rectum and vagina, causing a big bubble in my vagina, it's not as bad as it could be, but is worrisome. I'm so freaking pissed about that i can't stand it. While i'm totally grateful for being cancer free based on my last scan 2/28/2018, i'm just pissed that no one told me that this could happen, cause maybe i could have done something to prevent it. it did not exist before my ostomy was reversed.

I had aggressive chair chemo, radiation, and pill chemo over a period of 9 months. I was stage 4 rectal cancer cause they saw spots on my liver. the liver spots were gone in January 2018. The tumor was big initially, but almost gone by the time surgery happened, but he took all of the original marked spot, i had no cancer in any lymps, or other parts of my organs.

I worked all the way through chemo, and radiation, up until my surgery. Recovered pretty well, and managed the ostomy pretty good. Seems since the ostmy has been gone, i've had most of my issues. While i'm forever grateful to be cancer free at this point, I'm constantly worried about what i eat, when i eat, when i'll poop, and for how long i'll be stuck on the toilet.  As well as, worring that i'll poop out my bladder. I still work in a professional office and attending meetings are a regular part of my job, kinda stressed a lot worring about my bowels.

i'm going to physical therapy to learn keegles, i've gotten some estrogren cream to help thicken the walls. I'm also going physical therepy for hip and knee pain on my right side becasue of bone and muscle loss from treatments and low activity. I'm supposed to loose weight, and now go on this FODMAP diet. Dr dosent' want to do surgery to fix prolapse, i wonder if he knows something he is not wanting to tell me?

So how to  you manage your bowels after cancer rectal tumor removal surgery? Immodium, Fiber, diet?

How are you handling a prolaps after having rectal surgery?

i'd rather not have surgery to fix prolapse, just starting to accept that i'll never be the same, but I do have hope i'll be better than today

Thanks for listening.

Trubrit

Welcome to the forum, Ginger_Ale

What a story you have to tell. So sorry for it, but as you know, its a road many of us travel, albeit in our different ways. 

As for the bowel issues, I dodged the bag bullet, but radiation did do a number on my bathroom visits. I 'control' that through diet alone. I am getting to know what sets off a bad day - though I had a bad one yesterday and can't for the life of me figure out why -  I have ekpt a food journal and BM journal ever since my treatment, and that helps me decide what and what not to eat. 

I ignore it often enough to still enjoy some of the forbidden foods. Just not when I know I'm going out the next couple of days. 

I can't help you with the prolaps question. 

I don't blame you for being 'pissed'. What is that saying 'When it rains, it pours'.

I hope you find the help you need here on the forum. 

Tru.  - Now I have to go look up the FODMAP diet. Never heard of it before. 

lp1964

Dear Friend,

Hello to everyone by the way. I come here everyday and check on you guys lol.

Happy to hear that you are cancer free. After the initial scare the aftermath of treatment becomes more prominent and that is understandable.

i thicken up my stool with 2 chelated iron capsukesfrom Whole Foods and eating as little fibre as possible.

im a male and before my surgery I was offered an option of having one of my abdominal muscles folded down into the space where the rectum used to be to prevent the prolapse you are describing. I chose that option which left a 15 inch scar on my stomach but I’m very happy with the result. 

I was stage 2-3 and my big 5 year NED is coming up in May.

 

Kazenmax

Tough

This is all very tough.  I had the same surgery. They took muscle and fat from my stomach and it was used where I needed it. I had my anus and rectum removed and have a permanent  colostomy.  I also went through radiation and chemo but had to stop because it caused a fistula. That caused stool to leak through my vagina so a colostomy was way better than that.

I'm sorry you are having problems. Tru's suggestion on a food journal makes great sense and I think I will do that (I sometimes have production issues). 

What is the FODMAP diet?

Thanks

K

Trubrit

Kazenmax said:

Tough

This is all very tough.  I had the same surgery. They took muscle and fat from my stomach and it was used where I needed it. I had my anus and rectum removed and have a permanent  colostomy.  I also went through radiation and chemo but had to stop because it caused a fistula. That caused stool to leak through my vagina so a colostomy was way better than that.

I'm sorry you are having problems. Tru's suggestion on a food journal makes great sense and I think I will do that (I sometimes have production issues). 

What is the FODMAP diet?

Thanks

K

I found this link, K

https://www.dietvsdisease.org/diy-low-fodmap-diet/

I've yet to read it in full, as I'm on the run (not to the loo). 

Tru

Mikenh

Thank-you for your story. You

Thank-you for your story. You're ahead of me so I have this stuff in my future and it may be a potential problem for me as well. I plan to increase yoga, core exercises and will probably add Kegels before reversal surgery. I hope that you find solutions to your current difficulties.

Ugur

Kazenmax said:

Tough

This is all very tough.  I had the same surgery. They took muscle and fat from my stomach and it was used where I needed it. I had my anus and rectum removed and have a permanent  colostomy.  I also went through radiation and chemo but had to stop because it caused a fistula. That caused stool to leak through my vagina so a colostomy was way better than that.

I'm sorry you are having problems. Tru's suggestion on a food journal makes great sense and I think I will do that (I sometimes have production issues). 

What is the FODMAP diet?

Thanks

K

FODMAP

FODMAP is actually stands for chain carbs that can or cannot be digested easily especially in the bowels.

Low FODMAP diet is to avoid certain foods which has high chain carbs to help IBS or similar problems. It is not a permanent diet, it is applied for 6-8 weeks and then slowly you start to get some high FODMAP food for next 2-3 months to see one by one which foods irritate the bowels and which are more tolerable. 

Before my diagnosis, I was thinking I had IBS, and tried this diet by myself.

There are nice android applications which show high and low FODMAP food.

I hope I could answer your question

And Ginger_Ale, I hope all your troubles will end soon. Stay strong, 

Ugur