Reversal Log: Experience,Problems, Q & A's

[SammyJ]

Jane - sorry to leapfrog on to your post but a huge thanks to everyone for their advice and reassurance. Unfortunately I have had another horror night with pathetic, unsatisfying BMs from around 5pm through to 3am, no chance of sleep til then. I guess the upside is that my days are relatively easy to navigate.

From today I will take on all the advice - back to a few low residue foods and then gradually introduce things (my surgeon told me to eat anything), journal, kegels and trying to "hold" things in and psyllium.

Yesterday we ad lots of people drop in for cups of tea, lunch etc and I wonder if part of my experience is the consequence of eating too much and the wrong stuff - cake and an ice cream.

The other thing I have noticed is that my wound site is very very tender the last few days but has closed up incredibly well ( I have an open wound, no staples etc, just a hole where the ileostomy was) and it really is quite remarkable how my body has healed itself. Physically I feel so well recovered from the surgery compared to how I felt after the resection.

[justin case]

O.K. All seriousness aside, the first two weeks of reversal, reminded me of my worst weeks of chemo/rad. I managed to get through those, just to end up with surgery and an illiostomy I was so glad to be back to a normal evacuation, I gave up beer for 3 months Jane you will be so happy you went through this, in a very short time. I can't remember if you had a port,( I think you were on 5FU) but that may be the next thing about cancer you can kiss off!!!! Do the pain meds. if your bottom starts to hurt, and don't hesitate until your ready to stop. I used them occasionally for 6 months, and I do not regret it
Warm regards,
Michael

[Badass]

HI Sammy,
No problem-- share this thread with me as we log our progress. Maybe Kelltx can join us and we will have a good blow-by-blow of three different reversal stories all compiled under one roof!
I am jealous that you had cake! I can't imagine this (as I sit here, Cream of Wheat in my tummy, waiting for the very white potatoes to boil). I hope you have a better night tonight and get some sleep!

I am having a return of intestinal cramping. Feels just like an intestinal bug. But so far no output and thank goodness no more diarrhea attacks today!

Jane

[Badass]

Hi Justin,

I already got the ok to have the port taken out but will schedule that when my life is under control again!
Thanks for the encouragement.
I have a bidet toilet seat, which has been fantastic! NO SORE BUTT (except of course during "the episode")
I did take some pain meds last night to slow things down along with the imodium.

I am very patient just was kind of traumatized by the violent diarrhea with no control at all that went on and on last night. I hadn't heard of others having that. But so far so good today!

[SammyJ]

Seems a pattern is emerging for me - two days of constipation, one horror night in the bathroom. Psyllium obviously a bad Ideafor me. Although I am grateful for a good night's sleep! Have had enough of the nature knows best approach, taking light laxative this morning!

[Badass]

Sammy, I would love to hear how the laxative goes. I am in a similar situation. After Saturday's nightmare diarrhea spell, everything settled down Sunday and actually had formed output that evening. Just a couple or three sessions over half an hour or so. Today the gas pains and constipation have really built up. I saw my internist for another reason and she suggested eliminating dairy and other gas producing foods, taking gas-x and one dose daily of benefiber which is much milder than psyllium husks. I will see how this goes! Oh yes, she also suggested Smooth Move (senna) tea which I have yet to buy.

Keep us posted!

Jane

[BrownBagger]

Smooth Move is really good. I'm also a big fan of Metamucil. Even now--3 years out from my reversal, I still see benefits from taking it every day. Constipation has always been my biggest problem in that department.

I hope you have some Calmoseptine in your medicine cabinet. If not, try to get some. The overuse of your anal tissue gets really painful (uniquely painful), and the C cream really helps protect it.

Sounds like you're doing fine.

[RayGirl]

Thanks, RayGirl! What kind of oatmeal do you have? I am limited to instant right now per doctor's orders. Also, when you say "they were fast to drop in a hurry"-- do you mean the bloat?

Jane

Ughh! My mind is scattered these days. You will find when you get farther out from treatment that you say yes to everything that sounds fun because you realize how precious everything is. Of course now I'm going 90 miles an hour and get caught up in a whirlwind, so sorry for not catching your question.

I just used plain jane quick oats (well I'm too lazy to wait around cooking the slow kind), I prefered mine with fresh blueberries when they are in season, but a little sprinkle of brown sugar this time of year satisfies my desire for some taste.

Yes brownbagger was right. Fast down was when the urge was strong and the race to the bathroom was on. those early days I had so little control, especially when I was walking. No one every said try doing keigels while you are walking to get ready. That really should be listed somewhere!

The fiber helps both sides of the problem, it helps regulate and work on schedule. Drinking it with a less water for me help bulk up my stools so that I didn't have to worry about the dash. I would start the fiber as soon as the doc says. Start slow one dose a day for 5-7 days, then add the second dose. I really did not get the benefit until I was I taking three doses per day. I did the three dose a day for a few months and then I back it down to one double dose per day after my system settled.

I remember those early nights, cursing my doctor and everyone else that said I had to at least try the reversal. They weren't the ones running ten times to the bathroom from 11:00 p.m to 2:00 a.m. I was so exhausted but I was scared to take a mid-day nap thinking it was the relaxing at bedtime that set off my system. It gets better. I rarely have those nights and when I do, I can always pinpoint the food item that is the most likely culprit. Which is usually my husband's cooking, but dang it taste so good, sometimes it's worth the pain.

Also everyone system is different. My mentor found that a half cap of Miralax a night, help keep him regulated.

[RayGirl]

why is computer deciding to post twice everytime these days???

[Badass]

Thanks, RayGirl!

Things are so much better now. Yesterday, Day 6, I had bloat and constipation all day but cluster in evening with well-formed output- size of finger. Better than I expected at this point. Slept all night and feel good this morning. I think adding the gas-x and the beneful dose is helping a lot. Hard to be off dairy because I love cheese (snuck in a bite of goat brie last night because I am SO hungry in the evening). Almond milk fine for me, though. I think next week I might be ready to start the psyllium and prune juice routine if everything continues along as it is. Trying to have soluble fiber as much as I can- instant oatmeal, banana and applesauce for breakfast with continued banana and applesauce throughout the day. I love my PCP-- saw her about my incision pain and she really helped me sort out digestive stuff too. Big hug at the end

Jane

[BrownBagger]

You might have to limit your cheese intake moving forward if constipation becomes an issue.

[Badass]

Oh, I am off all dairy. Was just saying I snuck one bite of goat cheese in last night (cheated ).

[Jachut]

The thing is constipation isn't constipation if there's nothing there to be passed. You don't ave to have a bowel movement every day. Since I had a lapband seven years ago I pave never been an every day pooper, I simply don't eat enough! Several days without much action followed by clustering is fairly normal after reversal and all the laxatives in the worldwon't fix it - your colon and new pouch have to adjust and stretch out to act as a reservoir.

Also, if lie me you lost your rectum, not your whole colon, disregard most of what you read when you google. If your colon is doing its job, transit time is longer, diarrhoea and sore butts much much less. The horror stories tend to be pouches created fro the ileum, not coloanal ones.

The uncomfortable feelingsof needing to go re disconcerting, but fairly norml too.

Hang in there it seems to get better fr most people reasonably quickly.

[kelltx]

Joining in as a brand new reversee :

I had my reversal on Friday after a month of ileostomy. My surgeon did mention it will be very difficult as there may be scar tissue from the original. Michael (justin case) was a great inspiration for me. So I begged and cajoled and went in to get it done and sure enough, my surgeon was blocked by the adhesions while going through the stoma. So she had to cut me open.

On night 3, I was off IV for bleeding veins, and doctor thought it was ok since I had passed gas, I could start regular food.

Day 4 : As soon as I came off IV, and drank some apple juice for breakfast, BM started. yay!! I had to go 5 times, all bile. My surgeon said she will add fiber to bulk it up.

Day 5 : They discharged me the next day (yesterday). I had to stop by at work first after getting discharged as I had a deadline and was there for two hours. Pain was on and off only while moving and getting up. No bm all day, lot of gas. It was only after I had apple juice at night with dinner, had BM again; not loose, not too formed either. But doable.

Today is day 6 since surgery. I am working from home. So far no pain except when the cramps come in. Ouch! Did feel like going once after having green tea in the morning, but it was false alarm. After finishing lunch, had some apple juice and good ole AJ did the trick again BM, first formed but then major watery. Oh well.

Staples are to come off next week. Chemo in a month!!!

I was so so so nervous before this, thank God for all He does.

[SammyJ]

Hi All,

I am pleased to report a bit of progress. Whilst i still feel quite backed up, I am producing much better formed stools - not quite normal but not the 5000 little pellets one by one anymore. So significantly fewer trips to the bathroom. This has no doubt been assisted by a small dose of light laxative, Normacol, prescribed by my surgeon. I am also having success in resisting the urge to go every time i feel pressure and having a great deal of success - no accidents yet. 2 weeks tomorrow for me. I still have to get up a several times in the middle of the night but its been about 4 days since i have had an all night session.Most of my movements seem to be post 5pm so today i am going to venture out (padded up!) to finish off a little bit of christmas shopping. Wish me luck!

So - far from "normal" but a significant improvement on last week where i couldnt see that things would ever get better. A huge thanks to every bit of advice from people on this forum which have kept me going. I know there will still be days where it is worse than this but i feel really encouraged by the progress.

Have decided to stop talking about it as much at home after my 8yo told me he told the class about my constipation and the hole in my tummy in show and tell.......