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"Class of 18" pouchers: how are you?

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Posted 10/7/2019 1:44 PM (GMT -8)
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! smile
Posted 10/7/2019 5:58 PM (GMT -8)
Song all is good.Mom had 4 of 6 rounds of chemo.After 4th round she ended up in hospital because of low blood count.Rehab told us she cant come back to rehab because shes going thru chemo so we stopped chemo.While on chemo she had fracture on spine,shingles and UTI.Since we stopped chemo no issues thank God.Now does she have any cancer inside her??? blood test are good.She is still in rehab,we got notice last week that Blue Cross wont cover her since last Wed so we sent in a appeal.Hope she gets few extra weeks til house is ready for her and community medicaid kicks in.Moms a tough cookie at 88yo.Im good,everything fine.I wanted hernia fixed ASAP,didnt want another surgery hanging over my head.Good luck
Posted 10/8/2019 4:31 AM (GMT -8)
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!!
Posted 10/8/2019 6:50 AM (GMT -8)
I second geezer! I enjoy all your updates and have been following your progress!
Posted 10/10/2019 1:43 PM (GMT -8)
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.
Posted 10/13/2019 9:21 PM (GMT -8)
I’m almost a year out from my takedown. Things are going pretty good and I don’t regret my decision for a second. I still have frequency and maybe one trip to the bathroom overnight..but the urgency is gone and that makes all the difference.
Question for you guys: are we supposed to go back and see our GI for a check up after surgery? I Went for all my follow ups with the surgeon but I never heard from my GI about what I’m supposed to do going forward with her.
Posted 10/14/2019 9:59 PM (GMT -8)
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 sad 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?
Posted 10/23/2019 6:05 PM (GMT -8)
Valli and Song hopeing that rest of 2019/ 2020 is a great year for you girls and Mom
Posted 10/24/2019 4:34 AM (GMT -8)
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.
Posted 10/28/2019 5:57 AM (GMT -8)
You go girls-nothing butt good things ahead for all
Posted 11/4/2019 12:59 PM (GMT -8)
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!
Posted 11/4/2019 2:21 PM (GMT -8)

valli1234 said...
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 sad 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?

For the burning have you tried any pancreatic enzymes? I think you need a script for them. I wish that I could remember the name of them...I think it starts with a Q. If I recall, NCOT takes them and she wished that she knew about them years ago.
Posted 11/4/2019 5:17 PM (GMT -8)
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.
Posted 11/5/2019 10:31 AM (GMT -8)
Hi Champ - My hernia is where my stoma was - a little above the belly button, over a few inches, on the right. He said they'd make two small incisions over on the left side, the opposite side, blow air in there and robotically reach in to put in mesh. Because I've been having CT scans every 6 months to make sure there's no new cancer, they've been watching this get bigger. He said it wouldn't hurt to put it off till after Christmas, but it would be good to do it sooner than later. Hmmmm. Thanks for your words! I'll definitely do it in winter. I'll look at my schedule and figure it out.

Keith - Right! Thanks!! Valli, this could help? Questran, which is cholestyramine, a cholesterol-lowering medicine that for our purposes reduces the acidity in the stool so it doesn't burn. Actually, my surgeon prescribed a related medication - cholestipol - which I take. There are warnings about not taking it at the same time as other meds, etc, but the nurse ran down my medication list and said nothing was a worry, go ahead and take it with my regular pills (a vitamin, a probiotic...) For me it thickened the stool a little and reduced the burn! I've taken it since a few weeks post-reversal, so I didn't even think about it.
Posted 12/19/2019 7:13 AM (GMT -8)
How is everyone? I haven't seen some of you in a while smile

Happy holidays!
Posted 12/19/2019 9:46 AM (GMT -8)
Hi guys NSSG thanks for reaching out 🥰
I am doing a better thank you.
I guess I am one of the odd balls that My system takes awhile (13 months ) to settle down . I still go often 10 times min a day but I no longer suffer with the serve gas pain and backdoor pain. That doesn’t mean I have perfect days, I still have the odd one here and there . I discovered salad which I love is definitely the worst for me , and being stubborn I have tried it a few times and each time I pay a heavy price so salad , red sauce and anything remotely spicy is a no go . Ohh plus alcohol I can’t do maybe one drink and that’s it . I never was a heavy drinker but I used to enjoy 2-3 drinks 🍷 once in awhile that too is a thing of the past ... all minor compared to the issues I had with my colon . Life is good
Got away down south twice in the last month so no more vacations booked till the spring , ran out of vacation weeks sad
Today is -17 so outdoor activity has been cut down to ....0% lol
Looking forward to the spring and seeing the sun again in 4 months sad I truly hate winter. So wish I was American so I could move my sorry rump to FL .

? Songlady did you have the surgery for your hernia or still waiting till after Christmas
3TC how’s life ? How is your mom ?
How is everyone else ?
I wish everyone a Merry Christmas 🎄 sending well wishes for health this coming year . Xoxo 👼 enjoy the holidays with family and friends
Posted 12/19/2019 5:02 PM (GMT -8)
Mom hasn't had it easy.She fell 2 weeks ago so to the hospital in morning/home by night.This past Monday she fell out of bed and fractured her hip.So surgery this past Tuesday.She's a fighter/never complains .Valli i'm happy that your doing better,you deserve it.I'm having kidney stone surgery Jan 3rd so hospitals love me.Have a great holiday
Posted 12/19/2019 7:26 PM (GMT -8)
I'm on cipro and I feel like I'm finally living. I can hold it, sleep through, fart hehe. I'm enjoying this.
Posted 12/19/2019 7:38 PM (GMT -8)

Andrina said...
I'm on cipro and I feel like I'm finally living. I can hold it, sleep through, fart hehe. I'm enjoying this.

This makes me happy!
Posted 12/19/2019 7:42 PM (GMT -8)

valli1234 said...
Hi guys NSSG thanks for reaching out 🥰
I am doing a better thank you.
I guess I am one of the odd balls that My system takes awhile (13 months ) to settle down . I still go often 10 times min a day but I no longer suffer with the serve gas pain and backdoor pain. That doesn’t mean I have perfect days, I still have the odd one here and there . I discovered salad which I love is definitely the worst for me , and being stubborn I have tried it a few times and each time I pay a heavy price so salad , red sauce and anything remotely spicy is a no go . Ohh plus alcohol I can’t do maybe one drink and that’s it . I never was a heavy drinker but I used to enjoy 2-3 drinks 🍷 once in awhile that too is a thing of the past ... all minor compared to the issues I had with my colon . Life is good
Got away down south twice in the last month so no more vacations booked till the spring , ran out of vacation weeks sad
Today is -17 so outdoor activity has been cut down to ....0% lol
Looking forward to the spring and seeing the sun again in 4 months sad I truly hate winter. So wish I was American so I could move my sorry rump to FL .

? Songlady did you have the surgery for your hernia or still waiting till after Christmas
3TC how’s life ? How is your mom ?
How is everyone else ?
I wish everyone a Merry Christmas 🎄 sending well wishes for health this coming year . Xoxo 👼 enjoy the holidays with family and friends

Merry Christmas. I am happy you're doing well. I have good days too, and days where I go a little more than I'd like to, but really, it's a lot easier than living with UC for me. With UC, it was repetitive and urgent. At least this, I go and I am done for a while, and going is once in a while, not over and over. It sounds like you're still improving. Can you spend the winters, or at least part, somewhere in the US? It's been cold here in southern CA lately, I can't imagine what it's like in the north. I don't think I could handle it.
Posted 12/22/2019 11:29 PM (GMT -8)
Sending well wishes for the holidays + 2020 to the Class of '18 and fellow Forum members! Last month I celebrated my 4th anniversary of surgery for a pelvic malignancy & got good C-scope report in the the spring, YAY! But I still have a pesky bout of periodontitis in upper left jaw & needed 3 oral surgeries between Oct-Nov, plus my 4th bone graft there since late 2011. Problem compounded by periodontists' fixation & preference for installing implants! Now I finally got a trusted endodontist to supervise a periodontist in treating me, taking my inflammatory over-response into consideration for a change! (Because my oral inflammation resembles UC in that it seems to stop for a while, but then recurs.) For that reason current periodontist wants me to dab chlorhexidine (generic Peridex) on graft site AM + PM 'til April 2020; then he'll re-evaluate. Interesting UC point is that my recent ESR test by gastro resulted better than it has for the last 2 yrs! (C-reactive protein also good.) So gastro added the chlorhex to my online Rx record in the meantime. We just have to expect crazy things from our immune system, it seems. / Old Hat (39 yrs with left-sided UC; presently in remission on brandname Colazal)
Posted 12/23/2019 6:06 AM (GMT -8)
Welcome back Old Hat, and merry xmas wishes to you. If it's not UC then it is something else, keeps life interesting and frustrating at times...
Posted 12/31/2019 11:49 AM (GMT -8)
Hi all - Sorry to have disappeared for a while!
Hernia repair, week away, busiest time of year at my work (right up till about midnight on 12/24) and my SIL's extended family at my home for Christmas Day (because we have a big ol' house that can handle the crowd...) It's been a busy and stressful 6 weeks, and I'm only beginning to feel human now, lol!

Hernia surgery was on 11/20, outpatient. The pain was HORRIBLE for a week after. It hurt more than when I had my colon removed and Jpouch built! Partly because there was some staffing issue at the hospital, nurse was overworked, I was given the wrong pain instructions (half dose of what was intended) for aftercare. For a week I was miserable, then it got better. (Fine now and I am glad I had it done.) At post-op I learned that so much had herniated that they needed to widen the tear a little in order to get it all back in there! They put in a 6 inch round mesh and stitched it all around. the Dr. said that this particular area of hernia repair hurts more than any other place (said a groin hernia, for instance, hurts a fraction of what this was.)

I'd strained a knee in Fall... and it was gradually getting better, but at beginning of December I was going up stairs with laundry and suddenly felt like fireworks were going down my calf! I actually yelled out in pain.
But the next day we left and drove 850 miles to see my 95 year old MIL. I couldn't even drive because of the knee! It's still painful and mostly in the calf. I'm going to the orthopod later in the week finally. (I'd gone a few months ago and Xrays showed mild/moderate arthritis; at that point I was given DX of a sprained hamstring.) It still hurts like #%$^!! if I stand or walk a lot, and stairs are a challenge. Argh! Normally I like to walk, and DH and I even got certificates for completing a state Hiking Challenge last summer, so this is frustrating.

Champ: sorry Mom is having such a tough time. Valli: I am glad things are generally better! OH: I am sorry for the dental issues; interesting interaction between mouth and gut! I'm so glad things are good otherwise.

Andrina - Yay! Sounds good. NSSG and iP - thanks for doing the Mod thing! I appreciate you both very much.
Posted 12/31/2019 1:03 PM (GMT -8)
Happy New Year Song-my hernia[ except for taking it easy] wasn't too tough even though they cut me vertically from above groin to top of stomach[longer recover]..All good now with lifting even though i'm still careful.Mom is a work in progress-is she slowly dieing? we dont know-not easy.Off to Aruba for me Jan 9th with my youngest,wasnt able to go on many vacations in last few years bc of UC so this is a celebration of surgery and marraige ending,All good here=hope you all have a good New Year
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