Reversals Any positives?

[StDrogo]

My wife never had any issues with her reversal, despite the extended right hemicolectomy. She has not had to modify her diet in any way, nor does she take metamucil.

[Caat55]

Home is great, just harder to get out of my bed than hospital bed so nighttime was challenging.
I appreciate the longer range reports.
S

[juliej]

JulieJ, you somewhat answered this, but are these going to be lifetime issues, or do things generally get close to normal over time? Cancer's taken so much already, the thought of also losing some of my favorite foods is a bit depressing.

I think it varies widely from person to person. Some people like me get damn close to their old normal. (I always carry a few Imodium in my purse/bag whenever I leave the house just in case though.)

Other people have more problems. I know one guy who couldn't eat spicy foods at all afterwards without it triggering an all-night session in the bathroom. He loved spicy food though, so he simply took 2 Imodium right before he went out to eat and that fixed the problem.

Give it time. Carefully try new things, and like I mentioned, if it doesn't work out, try it again in a few weeks. Also, learn which foods soothe your insides. Sometimes it's a case of balancing the meal. For example, potatoes of any sort (french fries included) are easy to digest and slow down peristalsis (the action that moves food through your intestines). So if burgers are iffy for you, adding fries to the meal can balance things out. Same goes for cheese, yogurt, bananas, rice, bread. At first I couldn't eat a salad before a meal, but if I had some bread (or a slice of pizza) beforehand I was fine. Then a few months later I could eat a salad first. Your body tries to adapt but it takes time.

I know what you mean about cancer taking so much though. The chemo, the surgeries, the scars - they're bad enough. But when you can't have chocolate cake for your birthday? Now that sucks! But I got it back and hopefully you will too!

Hope this helps!
Juliej

[Caat55]

Thanks for keeping it positive. It’s strange so far day time nothing happens but after dinner and then is we hours, bam it’s toilet time. I no sooner pull up my drawers and have to pull them down again and sit. Just the beginning I know.
S

[juliej]

Thanks for keeping it positive. It’s strange so far day time nothing happens but after dinner and then is we hours, bam it’s toilet time. I no sooner pull up my drawers and have to pull them down again and sit. Just the beginning I know.

I swear my intestines waited until bedtime so they could be the most disruptive!!! There's nothing worse than being tired/sleepy and not being able to go to bed without feeling the "urge" the minute you lie down and so you keep heading back to the bathroom!

Try raising your feet up on a little stool or stack of books while you're on the toilet. That position facilitates bowel movements and might keep it going longer. And remember to take an Imodium to slow things down if it gets totally ridiculous.

Things will get better. Give it time. I can't believe you don't have to pack your wound! I had to pack mine with gauze for several weeks. It healed up nicely though. Just a small scar is left now.

Juliej

[Eleda]

I'm a month out and seem to have a pattern of 5pm to 11 pm,,,
Not to bad really, because you can get some work done and sleep also,
Had chicken curry and rice with salad last night and Doritos and dip, in a friend for diner, with prosecco,,, so far so good, took one imodium because I forgot my physillum, I need the poo firmer because it's still managing to escape my butt cheeks ( hurts at the anastomosis site) feels like hemies inside, and waiting to see the continance nurse,
CAN ONY GET BETTER!!!!
ADELE X

[Gravelyguy]

I am 10 months out and can still remember how hard the early going was. I am soo much better than then.

Reversal is so strange. I think almost everyone has issues early on. It is what happens as time goes on that is so variable. I am taking a very good probiotic at more than the minimum dosage and a magnesium based supplement and am getting along fine. It is not quite back to normal but am teaching and coaching full time without issues and even now things continue to get better.

I have no rectum so should be really struggling but most days go by without issues.

Hope this helps!

Dave

[Eleda]

Hi Dave
thats great to hear, I'm the same I've a coloanal anastomosis, so no rectum left,,,, I take these daily also
https://probion.com/probion-basic.html
t's the unpredictability is rough,( and the burned bum lol)
I've no patience for this carry on lol
Hopefully I'll b following in Ur footsteps and b kinda normal soon,,,
Adele

[Caat55]

Well my time appears to be 11 pm to 4 am. Rough . Started the morning with sneezing, so much pollen in the air, yikes that hurt. I did get lovely bouquets of lilac for the house, some snap dragons too. Adding yogurt to my regime, try to get some healthy flora going. I got called in for jury duty this afternoon, had to explain to court clerk why having to come in for jury duty isn’t going to work this time around. Life goes on.
Thank you Dave for some good news.
Adele...totally get the burn.
Susan

[Eleda]

Susan
I think I turned a corner today,,,,
While waiting for the aftermath of my last night's diner,,, along comes 5.30 and went to the loo,,,,,,,,,
and had a very productive ( lol ) half hour,
I'm now convinced it was the imodium at diner that helped it, this was my only toilet episode so far today, so I'm hoping I haven't spoke too soon
Had a fish sambo for diner tonight along with another imodium so
Fingers crossed for tomorrow
Adele X

[Caat55]

Good news, no bathroom trips last night, bad news no bathroom trips last night. I feel something hard above old stoma site, sore. Wonder if it’s a blockage, scaring, etc? Have first follow up visit today, a conference call with PA. I will ask her. Unfortunately she can’t palpate so it’s dependent on me to describe it.
It’s supposed to reach upper 80s here today. Got to wear a pair of shorts that I haven’t worn since diagnosis. Got in almost 6000 steps yesterday, going to be productive and make some CBD salve which my mom, mother in law, and friends swear is best thing for their pain. Also going to make mosquitos spray. Have nothing but time these days
Susan
Cheers to turning corners Adele!

[Eleda]

I can relate today Susan
No 5pm poo or 6/7/8/9pm either, but am not unwell so no concerned
Didn't eat much yesterday so maybe that's it....
I'll know tomorrow lol, just had a battered cod sambo. ( discussing I know lol )
ADELE X

[Rikimaroo]

Today I think I went to the bathroom at least 8 times I think its my fault though cause I did eat some Jamaican food curry etc...and such, but still even when I eat fine this happens but not as bad. . Some days I go 2 times. It's rather frustrating and I am 6 months out. I take Metamucil at night before going to bed. I take Imodium when it keeps going and I need to break.

My times are usually in the night as well. But today I started around 11am in the morning and finished around 2pm, meaning I had frequent visits to the toilet. I am not sure if I will have to go anymore tonight, but I am hoping I am done for the day. Also when I fart, sometimes I think I need to poo, but its just fart and tender booty, so sometimes the fart is like a fire fart. All around I hate the reversal so far, but hoping things get better soon. Although I am doing Chemo now, but even when I was off chemo and reversal in October 2018, its been an annoying ride indeed.

The not knowing when I am going to poop and the fact I also have no rectum (coloanal anastomosis) means that I find it hard to go anywhere without worries that I am either going to be stuck in a bathroom somewhere that is no comfortable like my home.

I know friends that are doing great and things are much better, but that is 2 years out. There might be a chance I might have to go back to the bag if we do another surgery because of my local recurrence. I welcome the bag to be honest as I could do anything with it and never had worries. Yes its a nuisance at times, but mostly its perfectly fine.

[susie0915]

Today I think I went to the bathroom at least 8 times I think its my fault though cause I did eat some Jamaican food curry etc...and such, but still even when I eat fine this happens but not as bad. . Some days I go 2 times. It's rather frustrating and I am 6 months out. I take Metamucil at night before going to bed. I take Imodium when it keeps going and I need to break.

My times are usually in the night as well. But today I started around 11am in the morning and finished around 2pm, meaning I had frequent visits to the toilet. I am not sure if I will have to go anymore tonight, but I am hoping I am done for the day. Also when I fart, sometimes I think I need to poo, but its just fart and tender booty, so sometimes the fart is like a fire fart. All around I hate the reversal so far, but hoping things get better soon. Although I am doing Chemo now, but even when I was off chemo and reversal in October 2018, its been an annoying ride indeed.

The not knowing when I am going to poop and the fact I also have no rectum (coloanal anastomosis) means that I find it hard to go anywhere without worries that I am either going to be stuck in a bathroom somewhere that is no comfortable like my home.

I know friends that are doing great and things are much better, but that is 2 years out. There might be a chance I might have to go back to the bag if we do another surgery because of my local recurrence. I welcome the bag to be honest as I could do anything with it and never had worries. Yes its a nuisance at times, but mostly its perfectly fine.

It may be early for you, but have you thought about daily tap water enemas. I started doing them 2 years ago because of constant clustering and unpredictability. I was 15 months out from reversal. I went to the Bowel control clinic at the University of Michigan. It was recommended to me by the GI there. It is really quite simple once you become comfortable with the process. I purchased an enema bag on amazon for about $25. I use approximately 4 cups of water and it takes about 30 minutes from start to finish including clean up. The goal is to empty the lower bowel. I do them daily and don't go again until I do again the next morning. I told my surgeon I was doing this and he was okay with it. He is from a different hospital. There are many that have lost their rectum that do enemas and have had great success. All that is needed is tap water (do not use fleet enemas). Some use more water, others use less. I can be awkward in the beginning, but once you become comfortable with how the bag works and administering the water, it is really pretty easy. I have a friend that irrigates his colostomy so he doesn't need a bag, and this is the same premise, just administering water through the rear end vs. the stoma. There are some feeds on this sight about enemas if you type into the subject section. I know it can be very frustrating spending so much time in the bathroom.

[Caat55]

Today I think I went to the bathroom at least 8 times I think its my fault though cause I did eat some Jamaican food curry etc...and such, but still even when I eat fine this happens but not as bad. . Some days I go 2 times. It's rather frustrating and I am 6 months out. I take Metamucil at night before going to bed. I take Imodium when it keeps going and I need to break.


The not knowing when I am going to poop and the fact I also have no rectum (coloanal anastomosis) means that I find it hard to go anywhere without worries that I am either going to be stuck in a bathroom somewhere that is no comfortable like my home.

I know friends that are doing great and things are much better, but that is 2 years out. There might be a chance I might have to go back to the bag if we do another surgery because of my local recurrence. I welcome the bag to be honest as I could do anything with it and never had worries. Yes its a nuisance at times, but mostly its perfectly fine.

I am so sorry to hear how this continues to be a struggle for you. There is truth in knowing the bag works and what to expect, no surprises. I was terrified myself, still am of the what ifs. I went almost two days without a productive trip to bathroom and then spent yesterday afternoon in the toilet on and off for four hours. Thank goodness for my bidet. I went out with a friend to get some plants and spent much of the time worried, "what if" I hope this will pass as it has just been a week.
There is good news, two nights of uninterrupted sleep. I went to bed at 10 and sleep to 6, haven't done that since radiation treatment in October of 2017. What a difference sleep makes. Now I just have to slow down and let my belly heal. The PA said the pain I am experiencing is from the pulling and suturing of muscles when they put everything back in. She said if Ibuprofen treated the pain, that was my problem, and it did. NOW---- to do nothing and heal. I am not good at that especially as it is 85 degrees outside and my garden is calling me.
Susan