Page 1 of 3

Reversals Any positives?

Posted: Wed Apr 17, 2019 9:11 pm
by Caat55
So as I head into my reversal, I am hoping for good news, success stories and advice. Have at it friends, what is your story, what did you learn, wish you'd been aware of before hand?
S

Re: Reversals Any positives?

Posted: Wed Apr 17, 2019 9:43 pm
by Ehut
The first week was pretty rough for me. It felt like I was passing razor blades until I discovered Metamucil (psyllium husk fiber) which kind of acted like training wheels for my system. Total game changer for me. It took several months for things to fully stabilize but things have been good ever since (6.5 years). Calmoseptine was also my friend for the first few months. The only downside is that I go about twice as often as before. The benefit is that constipation is less frequent. In some ways my system works better than before the surgery.

Re: Reversals Any positives?

Posted: Wed Apr 17, 2019 10:59 pm
by Caat55
Thank you for sharing. Calmoseptine was a friend during radiation. Will pull it out again. My system has always been slow, hope this will be a balance.
S

Re: Reversals Any positives?

Posted: Thu Apr 18, 2019 8:21 am
by Jolene
I am also very curious about positive stories for reversals.

While I am on WW, there is still a high chance of recurrence in which I will have to be operated on immediately and undergo reversal at some point.

How long did it took for your LARS to stabilize ?

How did you get round your job situation and social life ? Did you have to take time off work ?

Re: Reversals Any positives?

Posted: Thu Apr 18, 2019 8:23 am
by Jolene
Ehut wrote:The first week was pretty rough for me. It felt like I was passing razor blades until I discovered Metamucil (psyllium husk fiber) which kind of acted like training wheels for my system. Total game changer for me. It took several months for things to fully stabilize but things have been good ever since (6.5 years). Calmoseptine was also my friend for the first few months. The only downside is that I go about twice as often as before. The benefit is that constipation is less frequent. In some ways my system works better than before the surgery.


Hi Ehut - thanks for sharing ! How do you mean your system works better than before surgery ? Do you mean life has returned to normal for you without any LARS ? How about the toilet runs and all ?

Re: Reversals Any positives?

Posted: Thu Apr 18, 2019 8:57 am
by Ehut
Jolene wrote:Hi Ehut - thanks for sharing ! How do you mean your system works better than before surgery ? Do you mean life has returned to normal for you without any LARS ? How about the toilet runs and all ?


By "better", I mean that I am more regular and my bathroom breaks are usually very fast. The challenging times were mostly in the first month and gradually got better. I had the occasional "clustering" but that is long gone.

Re: Reversals Any positives?

Posted: Thu Apr 18, 2019 10:12 am
by Eleda
I have to concur with the physillum husk
I began only 2tbsp in the morning with a banana, but I'm a month out and I know some Surgeon won't allow this but I didn't Evan ask, my ass is on fire so I don't care what he thinks at this point
Past 2 days fade been great, still going a fair bit but not burning like before
Had it n my porridge this morning ( first porrige) prob too early still,
I'm having cramps now 4 hours later but still feel ok
I think I've turned a corner so grasp into that Susan ( its only been a month
As for the cream
Yes that has been recommended before to me but not available her and has quite a low zinc
But I've found one that was higher called DISTIAL, MUST SOURCE IT( haven't used it tho, high in zinc)

https://www.desitin.com/diaper-rash-pro ... 4300000657
AQUAFORE DURING THR DAY, ZINC AT NIGHT
good luck su and keep us posted
ADELE X

Re: Reversals Any positives?

Posted: Thu Apr 18, 2019 12:17 pm
by mandosquiddy
I had my reversal on January 3rd of this year so I'm only a few months out. It has not all been positive but the negatives I have had have improved (or I've learned from and not repeated some mistakes). The first few weeks were rough and I had a lot of bathroom time and sore butt. A good cream is 100% necessary and I still use it to this day but luckily not every day anymore. In those first weeks I did have some accidents on the way to the rest room. I haven't had any issues with that since. I have at times taken metamucil but have actually had more success taking a few immodium pills everyday. It reduces the clustering and keeps things a bit more solid. I did have one incident a week ago where I overate pizza and the next night ate a meal with several veggies. The combo resulted in a blockage and a couple nights in the hospital for monitoring. Luckily, the blockage cleared on it's own. Since then I've stuck to a low residue diet and the immodium pills and have been operating like clockwork. I tend to go 3-6 times a day and I can hold things for a bit if I need to.

I returned to work a few weeks after surgery. For the most part work has been fine with the exception of a day or two where I spent way more time in the bathroom than ideal. I also survived 5 days in Mexico in March just by being very careful about what I consumed. So far in my situation I feel like the reversal was the right decision. I don't have to deal with the ostomy (supplies, leaks, etc). I am hoping things will continue to improve in the coming months.

Re: Reversals Any positives?

Posted: Thu Apr 18, 2019 5:43 pm
by juliej
It took me a full 3 months to get back to normal (well, my "new normal"). As others have noted, the first few months are the hardest. Your plumbing has been "offline" for awhile so it takes some time for it to get used to processing food. I was beyond thrilled when I produced my first fully formed turd after I left the hospital! :D :D :D

Taking probiotics helps a lot. You need to reestablish your good gut bacteria. I ate yogurt, drank kefir, and took probiotic capsules (the kind that take refrigeration).

Also, take it easy introducing new foods. Eat low residue foods at first and then gradually introduce ones with fiber. If something doesn't agree with you, stop eating it for a few weeks and then try again. Often it's just a matter of time. You'll quickly learn which foods trigger diarrhea (usually chocolate, nuts, salads, spicy foods, raw veggies, etc, but it can vary wildly from person to person). Have plenty of Imodium handy and don't be afaid to take it for clustering and/or diarrhea. If you feel constipated, lay on the floor, pull your knees up to your chest and rock back and forth. This realigns your intestines and can smooth out a kink or a minor blockage.

I don't have any serious issues now. I know not to have chocolate on any empty stomach (unless I want a good cleanout! :D ), but I can eat fruit, salads, nuts, even popcorn with no problem.

I looked at my reversal as one more step in getting my body back. Best of luck to you!

Juliej

Re: Reversals Any positives?

Posted: Fri Apr 19, 2019 11:17 am
by cgb13
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.

Re: Reversals Any positives?

Posted: Fri Apr 19, 2019 11:37 am
by Caat55
Thank you JulieJ for your positive statements and information. I love yogurt, make it at home. I am going to pick up some imodium for just in case days. I enjoyed lots of foods going into reversal that I was afraid I would not be able to eat.good to know I will have some kind of normal eating again.
S

Re: Reversals Any positives?

Posted: Sat Apr 20, 2019 10:55 am
by Eleda
Hi Susan
How is the plumbing comming along????

ADELE X

Re: Reversals Any positives?

Posted: Sat Apr 20, 2019 12:47 pm
by Caat55
I have started with small, bloody stools. One yesterday three today. Literally walked it out. 6700 steps yesterday.
I get to leave today, waiting on discharge orders. Just gauze over wound. Got a shower.
How are you doing?
S

Re: Reversals Any positives?

Posted: Sat Apr 20, 2019 1:10 pm
by Eleda
That's brilliant,,,
No wound packing??
Ur doing amazing already Susan
Long may it last...
I'm doing good today :D
So hoping tomorrow will b same,
Still no complete control, but getting there,,,
Going out tonight to a party (100 yards from my house incase I've to come home )
So fingers crossed it will go well
Enjoy Ur own bed tonight and a rest
Talk soon
ADELE X

Re: Reversals Any positives?

Posted: Sat Apr 20, 2019 2:03 pm
by Caat55
That's great news, a party to celebrate
We are on way home. About 2 and 1/2 drive. Hope I make it.
Wound is just covered with gauze which I take off to shower..
Susan