"Class of 18" pouchers: how are you?

Hi all -
I've been off the boards for a while. I've been trying to read and catch up but thought I'd just ask. How are you all? Valli, have you recovered from the peanut issue? Generally, when I've eaten something unwise too soon, it's worked out in a few days. My challenge is to be patient and not to freak. But not to ignore it too long. It's a game we've all played for a long time! ("Is it a flare or just a blip...?")
Champ, how are you? How is mom? Chemo is not fun. I've been off chemo for more than a year and I still have side effects. To be honest, having been through chemo...if I were a bit older, unless it was going to keep me out of pain, I might not do it. It's tough. I'd want to know the chemo was really going to buy me a long period of good quality. Have you checked into Palliative Care, which is not Hospice/end of life care but is a kind of care focused on comfort and good quality of life? It can be used at the same time as chemo, etc.
My news... I just came back from a 10 day trip to Italy! I had organized a group of 20 people and was the leader (not the actual tour guide.) I was nervous because I'd heard bathrooms are not easily found there, but... I did fine! The food sat fine, I had a few "full J pouch/uncomfortable/where is the bathroom" moments but no real issues! Kept my travel tube of calmoseptine with me at all times, and each of our hotel rooms had a bidet! Woo hoo!
I'm having a few issues because of a bad reaction to a post-breast cancer med, but GI-wise things are going pretty darned well. I share all this not to brag but hopefully to be an inspiration! My hernia hurts some, and I see the surgeon later this week to get his opinion about it. I hate to head for more surgery, so... we'll see what he says!
Best to you all! Ciao!

---

Age 63. Diagnosed UP 1983, UC 1986
Step One surgery on 12/28/17.
Surgery: planned. The colon cancer they found: a surprise.
Prior meds: sulfasalizine, Asacol, Delzicol, Lialda,
6 MP, Humira, Metamucil
two hips replaced thanks to pred.
6 months of chemo finished 7/9/18
Reversal to J pouch 8/9/18

Good seeing you on here Song! I'm SO glad to see you're doing ok. Best of luck to you in the future, and thank you for posting. I'm watching all of you who have been through surgery. Who knows what the future may bring. Stay well and safe!!

Thanks, geezer and Flowers. I am so happy to report that my j pouch function has continued to improve even past the 1 year "takedown" mark.
I saw the surgeon today. He is recommending me for a laparoscopic hernia repair, insertion of mesh, to take place just after the 2 year post-surgery date. The reason he wants to wait the 2 years is because of the complication of the cancer he found when removing my colon. (To summarize: I'd had no clue there was actual cancer other than occasional dysplasia cells over a year or two and a weird narrowing of the colon. I'd undergone colonoscopies every 6 months for 2-3 years prior.)
He had some blood drawn, in particular to check the cancer markers - the CEA test (which my oncologist apparently thinks ought to be checked every 6 months; surgeon wants it checked every 3 months!) So... I'm hoping that comes out fine. But assuming that it does, all looks good!
Champ - hang in there, with mom. I know it's tough. You are in my thoughts.

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Age 63. Diagnosed UP 1983, UC 1986
Step One surgery on 12/28/17.
Surgery: planned. The colon cancer they found: a surprise.
Prior meds: sulfasalizine, Asacol, Delzicol, Lialda,
6 MP, Humira, Metamucil
two hips replaced thanks to pred.
6 months of chemo finished 7/9/18
Reversal to J pouch 8/9/18

Songlady it’s so nice to hear from you . And so glad you enjoyed Italy ... it’s still one of my favourite countries . Sad part is I know if I went again there would be no red sauce on my plate I absolutely adored pasta now it’s garlic and butter sauce for me only. No salads no cheese no tomatoes base sauces .its been a live and learn over the last 12 months .

Wish i could say things have settled down
I tend to have maybe 2 good days then I will go for a straight 3-4 days of hell ... tonight is one of them . I am on my 3 rd sitz bath tonight and my stomach is empty the next few trips will be yellow liquid which still burns my back door exit . It’s just something I accept now and there isn’t really much to do about it
Booked a cruise for the first week of November... that should make me feel a bit better . Lol it’s my solution to all my problems.

Sorry about the issues you are experiencing with your post cancer meds , . If your surgeon recommends waiting for the hernia surgery I guess that’s a good idea . You truly have been through enough. How often does it hurt the hernia?

---

49 year old female mother of 4
UC since 1993 remission off and on
The last flare-up was 2008 till 2009 remission till June 2017
Hospitalized November 2017 for 5 weeks
Anemia 4 blood transfusions in hospital
prednisone, asacol, pentasa,encort enemas, steriod enemas, hurmia all failed
Dec/17 Total colectomy
March/2018 2nd surgery J pouch
Take down 3rd surgery Aug/ 18
Cuffitis sept/Mar 2019

Thanks 3 TC wishing your mom a speedy recovery .
On another positive note I am feeling a lot better haven’t had an issue in close to two weeks . I certainly don’t go 1-2 times a day but that’s ok it’s closer to 10 and up no pain internally and no pain in the back door area. 👌🏼Needless to say I am thrilled about all that.
Song I hope all is well with you. Only well wishes for 2020.

Hi all!
I hope it's still going ok for you, Valli.
Champ, how's mom?
I saw the surgeon today for hernia repair. It has gotten bigger over the last 10 months,(the CT scans I've had for the oncologist show it very clearly) so he thinks it would be better to go ahead and fix it. Trouble is, we're coming up on the holidays! So maybe I should wait till 2020. BUT, I've used up all my "out of pocket" maximums on my insurance, so the whole thing is free for me if I do it before the end of 2019. Hmmm, money vs convenience.
So the first date he has free is November 20. I figure if I get a lot of my Thanksgiving foods prepped beforehand - I can dice things for stuffing and freeze that, and apple pies freeze well..... I can do the surgery on 11/20 and direct my family to help on Thanksgiving Day. And I should be good for the pre-Christmas season, which is busy at my work.
This guy only does laparoscopic and robotic, and anticipates sending me home the same day. Champ, you're the hernia expert. Am I crazy to do this, with my schedule?
Also, we had hoped to drive 850 miles to see my 95 year old MIL the week of Dec 9. The surgeon said he thought I could ride in a car for that long by then. Hmmm......?
Hope all is going good for everyone!

Song my hernia was different,mine was up at top of stomach and my colorectal surgeon said it could spread downward.Remember all my colorectal surgeries i had large vertical incision and same incision for my hernia.Now they cut thru 3 layers of muscle each of us has to remove my colon,not everyone gets the vertical cut.So it made sense to do surgery ASAP since having 2 stomachs would of looked funny.Your hernia is below/next to belly button? where most hernias are? You cant lift for weeks.Saving money is nice but convience is also good.Your call but get it done over winter so u can enjoy spring/summer.