Pooping in public...

Well, I have what I wanted. Poop in daylight hours. Ok now to calm the clustering and NOT poop myself when out and about.

Went to three stores. Had to poop in two. Had accidents in two. Little tiny amounts of poo, but still not great enough control ... I know I have to poo. I clench. Some just sneaks out. Sigh. I have pads for that reason and I was able to test my travel bag today. Passed the test so to speak.

Only 2 weeks and a few days out. Not disheartened as I have FULL nights of sleep. So it’s easier to rebound as I’m not nearly as emotional as I would be if sleep deprived.

There’s still hope and I will continue to try and get a grip as it were in the situation.... and the saga continues.

Odds and ends and Stoma wound healing

Look how pretty this variety of daffodils is!


It’s amazing how different the varieties are in daffodils.

And I finally started working on the craft room after running around with Mom a bit this week. Monday we loaded the car and worked on the craft room a bit. Tuesday we drove to the Consignment Shop and dropped off items and pick up money. Thursday we went to shop RVs and see what is out there for David and Laura. It was fun to see all the fun RVs out there..

Fun stuff.
Then today I worked on the craft room and organized some more.




Making progress!!!


We won’t talk about what is under the desk. Ha!!


And Angela’s bed is cleaning up more as well.

And with that we shall move into the health update. I’m 2 weeks and three days past surgery. Healing right up - shockingly so. The pooping is getting more and more regular. Working more towards daytime pooping instead of the middle of the night. Yay!!

The Stoma hole. Well here is your warning.
*** don’t look***






Scroll on if you’re squeamish.





You have been warned.



So really you can’t see the details on the 7th however the hole was down to the muscle. By the 18th scabs are starting to form and I moved from gauze to bandaids to avoid sticking (nice belly button scar). Today (23rd) the scabs are well formed and looking really good. Healing up nicely!!

Now to get control on the pooping a bit more and ill be set!!

Anniversaries flowers and spring weather.

I went to Aldi’s Sunday and found these roses left over from valentines. They were in such good shape I thought “what the heck!” They even smell good.


Then today THESE came for my anniversary! Wow. Pretty. They smell nice too and dwarfed the white ones but I’m in flower heaven right now.


Then Mom came over with the solid yellow daffodils you see here. So pretty and my favorite flowers of all time! Then I thought “I haven’t looked at MY daffodils this spring”. Duh. So I walked out and low and behold MINE are blooming as well. This the white and yellow ones added to moms bouquet.


Not sure why the few are dropped over.


Pretty pretty pretty!!


And the lemon was moved back into the sun and watered. Poor guy had been neglected as of late!! Whoops!! Hope he recovers well.

Presidents’ Day weekend used to mean a trip to Linda’s, games and visiting. Now? It’s laying around and sleeping. You’ll note there is a DOG in this picture. This is Bodie. He is being dog sat by Liz


I left for Aldi’s just before that fiat picture. Then came back to this.....


The dog was flat out when I walked in and raised his head to look at me just as I was taking the picture. Talk about sleepy heads!! Ha!

Me? I’m enjoying some late nights watching TV then not having any activity pooping until about 6am or later. Whooohooooo!!! I don’t want to jinx it and say all is well, but I think my body may be figuring out the schedule on its own. So this is two nights. We shall see if this is a trend or just a fluke.

Nights and days mixed up....

The saga of having meh nights and days mixed up continues.

I slept in really late this morning after finally going back to sleep after going potty for hours from 2am to 6am... then went BACK to sleep napping in the late afternoon.  Zzzzzzzz. That’s something new. I don’t typically nap, and I’m a huge proponent for napping but with not working I’m able to sleep in and don’t tend to nap.

Hoping my body will adjust within the next week or so. I hear there is a magical window of time where things iron out....

BUT I did complete two things this weekend with kids home. Went through the cup cabinet and the Tupperware cabinet to get rid of stuff not used in 5 years. Bundled up for a Tuesday run to the Consigment Shop!  With stuff from the craft room and these things my drop off should be pretty good.

So, making some headway on getting stuff cleaned out!
Next up is back into the craft room with my new Iris boxes to get paper put away and finish that mess up!!

Craft room clean out

My craft room exploded!! Mom came over and we moved all that we could with MULTIPLE trips to Angela’s room. The top shelf on the panorama you can’t see is empty as well. Then I pooped out. I need to get a few more Iris boxes to get papers more organized then cull through everything I have and craft my brains out for 20 years - hahahaha

Yeah. I’m a craft hoarder. Sigh.

Then I tired out. Done for a while. Time to sit and relax









More tomorrow

updates on a poopy week

Sunday’s thoughts were (found this in draft today) 

Well, I keep wondering “is this it?”  I know, weird. I wondered and worried so much. I have lots of odd cramping and pains but the doctors didn’t pay any attention to them in hospital, so I’m assuming it’s just body adjustments. (Yeah, this was the colon firing up to FULL production, heaven help me!)

Thursday Day 1 was rough, but doable. A few accidents, but go be expected. Night one was horrible with lots of wake ups and accidents. But being prepared was good and saved my sanity. 

Friday Day 2 was OK just a few times with mad dashes and limited accidents. Night two was accident free however gassy which is weirdly painful in the rectum, not the body. 

Saturday Day 3 I took a shower with the gaping hole in my gut. That’s a weird thing. Having a hole in your body that isn’t stitched and it open and weeping. I put gauze on it daily and tape it. Well, Butch tapes it. 

I was just feeling “off” that whole weekend. 

I had more accidents at night...more up and down at night...more clenching in the day to no avail. I feel a bit demoralized at this point. 

Tuesday’s doctors appointment - they put me on gapapenten spelling optional. It’s for the neuropathy in my feet that is moving up my legs. Maybe it’s a case of me not noticing it earlier, who knows. They said it was weird. It should not progress at this stage. Ok, so explain the two toes on the right foot now being numb. Which, by the way as of Wednesday they are better. I started the prescription Saturday.  Who knows. The doc wants to think it’s spinal related. I will leave it up to them to decide. They’re looking at vitamins levels, everything. We shall see. I’m ambivalent at this point. (Too worried about pooping in a diaper for life)

So..this is Day 7 (Wednesday) and here’s the skinny....

The hole in my stomach puts me off...which is weird because I’m usually ok with this sort of stuff...the gaping hole? Not so much...it’s very strange for me to not find this fascinating but gross. 

Then there’s the bowels...the other shoe dropped...it wasn’t as easy as first assumed. The nights are horrible lately. I sleep right through my warning signs. Then wake you a mess at 3am. Last night I walked around, cleaned up, sat down, laid down, moved around in an attempt to empty my bowels before going back to bed. An hour later, I lay down, get the urge, get up, lay down, get up, lay down. You get the gist...I finally lay down...no urges. Drop off to sleep only to wake to another mess at 8am...ugh. This has been the last few nights... the silver lining is in sleeping really well and well rested. I’m realistic and wear depends to bed nightly. I’m optimistic, however, not stupid. 

I need to find a way to get my gut to shut down at night. I’m OK with purges during the day and even the occasional “whoops” as well...but night time should be more sleep, less worry about pooping myself. 

So, aside from that, I’m not a shut in. I did go to the movies with Mom Tuesday after a doctors appointment. We saw Peter Rabbit. Cute movie. I have gone to the grocery store.  Ah, thrilling exciting life I lead, eh?  Regretfully anything more and I do need to know where the bathrooms are ;)

I’m trying to keep my chin up, but there is just something about this portion of the treatment for cancer that’s just wrong. Yeah, I’m cancer free but on drugs for neuropathy in my feet - which seems to be working, thank you! And I poop in diapers. Yeah, thrilled that this is “all over now” as everyone keeps telling me. I do try to be nice and not scream at them. It’s not over... it’s just in the not so glamorous stage of pooping paints, blood tests quarterly, CTs every six months and a colonoscopy in a year (silver lining it’s 1 then 3 then 5 - could have been annually).  So yeah...it’s “over”.... for today....

Body function update

I peed today. Yay!! As some of you know there were issues the last two surgeries with a very sleepy bladder. They backed off the long parting narcotics (drat) and that seemed to help. The pulled the catheter at 8 and we had action at 10. Yay me!! Now to get the rest flowing. Expecting some colon spasms which indicate it’s waking up. Just no “deposits” yet.

How it’s gone so far...Photo warning...

If you don’t like open wound don’t scroll to the bottom! The top part is good ;). I’ll put another warning right before

So the drive down was entertaining. I drive down as I won’t drive back.

So I had ONE job on the way to Mayo Clinic. Turn on I-10. Literally What ONE turn. Yep. I missed it. And it’s HUGE!! Good lord. Then to add insult to injury? Part of the freeway is totally shut down. Stop and go traffic and a big detour. Took an extra hour to get here - good thing we came the night prior or I would have missed my show time tomorrow!! First hibacleanse shower down. Time for bed!!! 1 am geeze. At least show time is 11am. I can sleep in!!!

Even that was a change in plans. Butch’s phone rang at 7am. Weird. My ringer was off. Whoops

He answers it. It’s Mayo. Cancellation (by someone else) and mad dashed to the hospital. Ok so my family doesn’t do mad dashes anywhere. Maybe a mad amble.
I’m got up and ready quickly ....

Bad thing is we have had 6 hours or less of sleep. Good news is I didn’t have time to get rattled. Yeah right.

I was so calm on the last few surgeries. This one? Not so much.

So. Headed in early to get this show on the road.

When I got here they were super ready for me. I was shoved into a room
In back before Butch even made it back into the hospital. He had dropped me at the door to expedite checkin ;)
They were sweet and held me off 5 minutes so Butch could say bye and take my phone :)


Happy. Not!!


Ok happy face for the world.


My view :)



Final farewell to Audrey and the bag!!

Then off to surgery. I was awake. lol the way into the surgical room AND awake for the mask. That was new for me. That mask was shoved on tight and didn’t have a huge positive air flow, that’s for sure. But out like s light after three or four good breaths. Zzzzz

Recovery was good. Pain was really there. They took off the long acting narcotics to see if that would get me bladder activity quicker. We shall see. I have the catheter removed at 24 hrs from surgery.


Last night in the room. Took two walks. Used the elbow walker. That’s interesting didn’t use it after my last surgery. Was probably suppose to. Oh well. First walk was short. Second walk was longer. Hummmm thinking I may have had three walks. Remember three different cut through. Short, medium and long. Who knows. I was walking - need to get the bowels working.

I will walk this morning once they get my catheter and IV unhooked. It will make walking MUCH easier as I can then walk solo. So. After breakfast sometime I’ll take 2 rounds. That 1/2 mile I think they say. 4 rounds is a mile. Per the nurses last time.







******* photo warning******
They pulled my packing and I gut to see the opening :)
***if you don’t want to see quit now***


















It’s bigger than my belly button right now!!! I was expecting the smaller gauze packing I had seen on TV shows where it’s more solid. Had I been quicker I could have gotten a shot of him pulling it out. Wasn’t that quick! Not a lot of pain removing it. It was more painful for the drain removals.

Sweet. Now I just shower as usual I don’t worry about the hole. If can get wet and soapy. I then just pat it dry and and put a new gauze pad over it until it heals over.

I read articles on it. This is shockingly the least infection causing solution to the wound closer. They get more infections closing off the wound fully.

Cancellations (not mine)

Cancellations and mad dashed to the hospital. Ok so my family doesn’t do mad dashes anywhere. Maybe a mad amble.
I’m up and ready....

Got a call at 7:00 of a cancellation with the hospital. We’re on our way in now to get in early.

Bad thing is we have had 6 hours or less of sleep. Good news is I don’t have time to get rattled now ;). Yeah right.

I was so calm on the last few surgeries. This one? Not so much.

So. Headed in early to get this show on the road.

Preparations

Items picked out for the hospital - check
Two jammies
Slippers
Supplies

Movies loaded to phone and iPad - check

What am I forgetting?

I’m starving already. No food after lunch today. Grumble grumble grumble. Clear liquids. I should go get some Italian ice. Those are allowed until midnight :) some Chinese soup broth too. Yeah. I’m hungry!!!

I don’t want to do another surgery. Am I being a wimp? I’m just over this already. Aren’t we done yet?? I don’t hurt enough to WANT this one.

Gallbladder? Heck yeah, get it OUT
Cancer? Heck yeah get it out.

This surgery? Is this worth it??? Sigh. Wimp....

Bidets and thought on reversal.

Today Butch installed my new add on bidet.

Holy hell!  That thing will shoot you off the toilet at the lowest setting! I have to say, I was worried about the cold water would be a bit much, however it was refreshing even without butt burn!  All set for coming home from the hospital next week!

As embarrassing as it is I also have adult diapers as well as pads and creams...
This is my reality.

There are a few studies that indicate that my recovery is going to be a doozie. I have no retention capacity. Well, I have 1 inch. Possibly two counting the tiny “end” past the attachment point. Uh, yeah, that’s nothing compared to the well designed 6” of rectum that is now missing. Add to this that the portion I need to “retain” as a rectum will have peristalsis going on. Something the rectum does not do.  So active “pushing” will be going on at all times. So, if I’m lucky I’ll go less than 30 times a day and more like 5 times a day.  Even that sounds excessive to me, but if it’s controlled, I will be OK with that.

The harsh reality is that the surgeons concentrate on removal of cancer, they are not concentrating on quality of life AFTER the surgery. They  cut out the cancer with little discussion of what life can really be like after.

Part of the discussion on one of my reversal boards was around this lack of possible outcomes being  supplied to their patients. That surgeons are shocked to find out after surgery when things do not miraculously resolve 6 weeks post op for a majority of individuals who have had all of their rectum removed. Shoot I wasn’t even given a choice on how I was reassembled. I may have been able to ask for a j-pouch for more retention power!

Another train of thought on that is that the only individuals you hear from are those with issues seeking out solutions, not those who have merrily gone on their way with happy outcomes. So maybe we only see the bad outcomes on the boards and not the good outcomes.

So, although I’m looking forward to the reversal and going more towards a “normal” I’m not looking forward to the unknown nor the possibility of a horrible outcome BUT I’m going to give this a solid 12 months to see results, find my food triggers (if I have any), find what works and what doesn’t. At 6 months if things aren’t going well, I’ll seek out a GI person to go for more invasive pelvic floor intervention and training. If, after 12 months I’m not better and miserable, then I will seriously consider going to a permanent colostomy. The bags doable and I haven’t had issues with the one I have now. The only major issue I had was initial adjustment to putting it on without making angry skin :) I’ve figured that out. I don’t  consider the bleeding after surgery as MY issue in that it wasn’t something I did to cause that one and I handled it well and got it to heal without issue. So a bag isn’t the end of the world. At least not mine :) I can travel with a bag easy enough!

Sol not going into this blind and know there is going to be one hell of an adjustment period on this one!

Well, hell.

I have started to get a sore throat. Yep a week from surgery and I’m coming down with a blasted cold.

I sent the Mayo team a message and told them I would keep them informed.

I took Zicam as soon as this started in hopes of heading it off. Took it for two and a half days as I don’t know if I can take it within a week of surgery... had to discontinue all other supplements so quit that one too - did ask if I could resume if it’s not harmful and they think it may help. Ugh!!!

Here’s hoping it doesn’t develop into a full blown cold after all!!!

Lizzie came home from Boston hacking and coughing. We have been diligently wiping everything with Clorox wipes.... I really can’t blame her as I started feeling this right as she came home... so I caught it at Mayo. Drat it!!

Hopefully this doesn’t delay me again!!

Bag decorating

Bag decorating to say “bye!!”



1st attempt I drew Audrey too large!


2nd attempt there is. Message to the docs!

Mayo adventures

Tuesday:

7:00 leave house

11:45: first appointment MRQ very close to three hours dang near. A full hour on the table. :( I took an Aleve prior to ward off the back ache. Yeah. Didn’t work but it kept me to where I wasn’t in super pain till the last 15 minutes. I also got sick with the glycogen they shoot you up with. I think I didn’t react last time as I got it in the IV. When you get it in a port it’s straight into your system. Made me flush and nauseous. Yuckie. And you have to have it twice. Once before you go in and once about the 45 minutes mark. Barf!! I didn’t but there for a minute I thought I would. Good thing the feeling wears off in just a few minutes!!

2:50: CT I swear 5 minutes in the tube and GONE. Whoop!

And all this time I am fasting. No food before MRQ for four hours. I didn’t eat breakfast - not thinking. Nerves? Not hungry? Unknown!
THEN CT said nothing to eat two hours prior. Funny. I didn’t finish the MRI until just before the CT time. The funny thing is I had water - lots of water and was fine until about 2pm then started getting hungry. So on the way to the hotel I got a cheese burger happy meal and I was... well....happy :)

About 6:30 we headed out and got a proper dinner at Millers Ale House. I had their dinner special of 35 fried shrimp. Butch got steak. I had 15 shrimp 1/2 a potato and a few bites of steak from Butch. Urp. I was stuffed!!

Wednesday

8:30 and 8:40: fasting blood draw and urine sample. I had said I wasn’t going to use the port. I used the port. Ha!!

After blood I got to eat in the cafeteria for the FIRST time. Really. Since July I haven’t eaten at the Mayo. I watched Butch eat there while on Optifast. Yeah. That was fun. Today I got a made to order omelet - YUM!!! I got ham with spinach, black olive, and cheese. And it was delish!! Butch had one with bacon and something. I didn’t pay attention - I was off getting tea while they cooked both of ours. All in PLENTY of time for my next appointment!

10:00 - barium enema X-ray. Ok that way freaking COOL. Ok not the enema and me freaking out prior (babbling and telling them to be nice to me and my gut - ha!) however watching the fluoroscope in action was awesome!! I’m a medically curious person and should have stuck to the medical field in my youth! So that said I didn’t dribble all the way to the bathroom - bonus. I only (?) had I would consider slight lack of control. Yay! I’m seeing some hope in that. What scared me was a consistent narrow spot a few inches into the bowel and not near the surgical sight from what I could tell.... but I’m not a doctor so we shall wait to see what he says.

12:00 pre-admit basically paperwork. Simple Simon. Got it done then we took a ride.

We drive south quite a bit and saw some HUGE beautiful beach mansions!! Looked them up on Zillow after. There is this one that I love.



Bwahahaha

Or this one. (Not for sale currently)





It’s a little further south where my more acceptably priced house is.



You have to admit this one is CUTE!!!

Ok done drooling.
No one more!!


Because who doesn’t need a house with a Harry Potter size chess board outside. Right??

Also seen on the way back. An alien.


Oh disregard!!


And the perfect license plate on a Tesla


I even got a short nap as we dropped by the hotel. Zzzz. It was lovely!!

3:30. Dr Landmann, surgeon. Answers today. Open does not mean surgical cut it means they will go through the Stoma. He will then do a purse string leaving it open to continue to heal. Ok. Relieved!! I didn’t want a center cut - not sure why. Not like I’ll avoid a scar. There will be one where the Stoma was. Oh well.

Not a lot of questions other than how he would be closing it up. He’s confident I’ll be just grand as I could hold water fairly well. Me too honestly!!

It will take some time but I know this game me more hope for normalizing fairly quick. Then I messed myself (with a pad) on the way to the hotel later - hahaha. Oh won’t be perfect at first!

The downside to this appointment was he did a flex sigmoidoscopy. Basically a short flex colonoscopy only looking at the lower parts of the colon and you’re awake. So. Now Liz and Bitch have both seen my colon and the doc was nice enough to let me get up on my elbows and see the repair in the screen. Nice little round scar tissue where he joined me together. He was quite proud of his handiwork as I’m clenching my cheeks trying NOT to shoot that took across the room. Ha!!

I told Angela she is the only one not to witness my colon. She needs to see it next - hahahaha. Yeah, she said no. Ingrate. I was going to let her in the colon club.

My schedule for colonoscopies is one year, then three, then five after that for life. Ok. I can deal with that.

4:00 appointment with nurse at Colorectal Group. Going over preop stuff.

4:30 appointment with preop group to get EKG and go over orders for surgery date. All is well on the EKG. And we are DONE for the day. Whooo hooo!

Out by 5:00

Headed to the hotel to hang loose and relax a bit.

At about 6:30
We headed out to dinner. We chose Ted’s Bison House. I had the meatloaf with garlic mashed potatoes and squash casserole. I liked the meatloaf and potatoes but wouldn’t have the squash casserole again. Butch had a bison steak with asparagus and baked potato. He wasn’t impressed with the steak :(

The off to the hotel and settled in for the night. Zzzzz

Thursday.
Up LATE. Dragged bootie. I then took a LONG time getting ready as I did a bag (flange) change as well. Finally out the door at 11 ish. We got a car wash thanks to the berry eating birds. Yuck!! The headed to lunch after a drive to the beach - frustration and long story. We went to Tazikis for Mediterranean food. Yum!! Gyros and hummus. Butch was under the impression my appointment was at 3pm. I was wondering why he was “wandering” earlier and debating full restaurant food. Nope. I have to go get stuff done. Really, I could probably be late it’s just blood work. I got that done at 1pm. We tried to sit outside:


Too windy and cold!!! Burrrr. We went to the car to nap and wait out the 3pm visit with Mody in oncology.

3:00. Talked with Mody. His recommendation is conservative and he would like me to scan (CT) at 6 months rather than 12. Protocol states 6 to 12 months. We will go with his protocol. He is sending orders to Sumrall and we will set that up with them.

So. NED (no evidence of disease) the official “remission” of cancer.

I should be thrilled but I’m still cautious and scared as there were no symptoms the first time. BUT I’ll be scanned and watched. And I can be scanned and watched locally. Bonus. I will switch to Dr Brewer who is a Colorectal specialist here. And stay with Sumrall at the cancer center here for the rest.

So. Next up. Reversal!! 6 Feb. less than two weeks away. Eeek!!!

Hair cut.

I’m so not sure about this still ...
Feels like a Utah housewife cut












What I REALLY feel like.


How tiny the pony tail was in the end.

And so it goes.

A first in 5 months

Well that was a fist. I guess I was super sleepy for the bag dump in the middle of the night last night.

Not only did I dump contents on BOTH hands (thank goodness for strong stomachs and baby wipes) BUT i cracked my shin as well.



NOT a tiny crack a blood drawing crack. I assumed I would just have a bruise. Surprise!! Ouch!!

Nice socks, don’t you think? Lol left over from yesterday. It’s COLD here!!



And gouged my other knee last night too and not a CLUE how. Goodness. We need to stop these middle of the night trips before I break something!!

Snow!

7am


7:30am


7:30am

Same times








Grass is almost covered. More snow sticking around the edge of the pool.



An inch has been reported. It’s possible!

My view from work





It’s accumulating

Out front.


Bigger flakes and every now and then a gust of wind will blow snow off roofs. It’s really not windy just an odd breeze was blowing there for a bit!



And with that. It’s 9:44 and sunshine is coming out!!


Yes that’s blue sky!




How did I know? Looked up from work and it’s WAY brighter out there!!


(Marked out so you can’t see what I’m working on!)



Maybe I should fire up the hot tub for lunch?