Jpouch doing well...but other (OT) issues, sigh

How many rounds of chemo does your mom need to go through? I hope she doesn't get many more side effects. If she does, they night be able to adjust the dose - they did that for me, just "tweaked" it a little, and things were better.
Yeah, I get what you mean about relationships. But you'd better believe that you'd need to describe any woman in detail to us before we'd approve - we HW pals have been through so much together, lol!
I'm on the Affordable Care Act insurance now. My husband got let go at the time of my second chemo (I had 12 treatments/ 6 months.) He'd just turned 65, so he gave up the idea of rejoining the rat race except a part-time gig he'd been doing on weekends. He went on Medicare, I went ACA. So far I am happy with what it's covering!
I do take lomotil at bedtime, and so far, no leakage issues. But, as they say... we're all different!

songlady said...
Hi everyone - OH, Q, so many others...!

valli - wow, sounds like a great trip. I can't imagine that kind of ancient history! How wonderful to see it! Sorry for issues since then. and - my surgeon said that NOT eating would indeed cause excess gas.
Champ - congrats on your son's graduation! and I am glad the hernia repair is healing well. At some point you might meet someone interesting, but.. your comment about not being sure if you're ready? - I would think you might need a little time to breathe after recent drama in almost every department of your life (health, which affects job; divorce, moving, etc!)
Woogy - how's it going? Sounds like your doc doesn't like to think out of the box, and pouchitis treatments need some creativity.
NSSG - always good to have the input of a "Pouch Mentor!" And Keith!

After my breast surgery I had a bit of what I assume was pouchitis. Prior to that I'd found a perfect balance of foods, probiotics, a little immodium, some Metamucil - and then of course for surgery I had to stop everything for a day or two. A week after I realized I was going a lot, with urgency, discomfort in lower abdomen, etc... so (per my surgeon) I did 48 hours of Cipro/Flagyl. It fixed my gut, got things re-balanced... but 12 hours after the first dose, my fingers and feet went numb. Darn! The chemo-induced neuropathy had been 75% gone, but now a month after my antibiotic fling I still have more tingling than I did before those few Cipro pills. So I need to get some other option from the surgeon. I'd like to have something on hand for when we go away this summer.
Other than that, no gripes. My colon recheck bloodwork was fine.

DH and I are walking at least 10,000 steps briskly, at least 4 times a week... I've just finished my first week of radiation (5 days a week for just under 4 weeks) and so far it's not a big deal.... and work has been long, stressful hours, but that is starting to improve with the lighter summer schedule.
One of my happiest things is that I have found I can eat tomato-based things with only the slightest burn. I'm going to Italy for 10 days at the end of September, and I do want to enjoy the food!

Hi Song the trip was amazing yes worth every penny . You are going to Italy 🇮🇹 ohh you wil love it which cities are you visiting if you can do Pompeii do it .. to me it was the best part of my trip .

Sorry to hear about your fingers going numb that has got to be frustrating hope you find out from the Dr what is going on. And walking 10,000 steps is awesome
It’s funny my daughter and I walked for an 90 mins every night for 4 weeks before we went to Italy 4 years ago knowing we would be doing some heavy duty waking and I can tell you the practise came in handy because we walked and walked on that holiday .
And great you can eat tomatoe based foods I have yet to be able to digest them I tried a few times to enjoy red sauce and I literally had a blow torch lightening up my back door all night . So I will wait again till I am all healed up to try again.

Summer is almost here in Canada so far it’s been a rotten spring send us some warm hot weather please , i am ready for another vacation of this weather doesn’t warm up.

Tomorrow I start the FMT wish me luck . I have no idea how I am
going to hold it inside for 30 mins
I plan on taking an ativan to relax me and my BACK DOOR, 😬
Will let you guys know how it went .

Warning to all women-The Healingwell girls need your SS#,finicial portfolio,and previous dating history before you date me.You've been warned

All joking aside.Wife was a sweetheart until she started enabling the children to the point she was sending beer to my son at school and a million other things she thought were ok .Bit unstable would u say.Dangerous enabler were therapist words.Thank God im away from her world.Just keeping my eye on kids[19-22-24] and her to make sure shes not making there life tougher.Mom pulled through 3rd round of Chemo very well.Moms a tough woman.Colitis is tough-Relationship might be only thing on earth thats tougher

Songlady, this is the thing I HATE THE MOST about the medical community. Did you know that even though they call DCIS "pre-cancer", they haven't done any studies to see whether it actually develops into cancer? They are only now starting to make it a semi-regular part of autopsies to see how many women die *with* DCIS vs *of* DCIS (and p.s. no one dies of DCIS).

It just BURNS MY BUTT that they are doing this to you. I know what it's like to have breast cancer, I know what it's like to have an easy time with breast cancer, and I also know good and cot dam well that you can't say "cancer" to anyone and have it be okay. They are committing malpractice every darn day by the horrorshow they put women through re DCIS.

Did you know that there is a huge mammogram industrial complex that is due in large part to the nasty Susan Komen Foundation -- it feeds itself. The Komen Foundation exists to promote "awareness." Awareness of what, you ask? Awareness of the need for mammograms. All of their fundraising goes to the goal of awareness. Not cure, not testing, just awareness.

OK, so if you were promoting awareness, you would need some stats that make you look effective, right? So it turns out that DCIS is only diagnosable by mammogram, and that is unlike any other kind of breast cancer, which can be confirmed by mammogram and sometimes discovered by mammogram but is not exclusively diagnosed by mammogram. (I had invasive ductal carcinoma -- stage 2 -- with a palpable lump that I could feel, my doctor could feel, and the mammo tech could feel, and they couldn't get it to show up on the mammogram.)

Do you see where this is going?
If you have a population of 1000 women, 25% of whom get mammograms, and if DCIS affects 10% of women annually, then your starting point will be that mammograms identify 25 women with DCIS.
Komen "raises awareness" and maybe you get 50% participation in mammos, so that means you double the number of women who are diagnosed with DCIS, and it is ALWAYS CURED because we don't even know if it ever becomes cancer but they chop you up and radiate you and shoot toxins into you and say oh now you're cured of cancer, and the Komen foundation says, oh look, we are responsible for doubling the number of lives saved by mammo. In the meantime, all their "awareness" does is create the worst possible experience for women who are subjected to this massive deception.

I've already told my doctor that if I'm ever diagnosed with DCIS, I'm going to decline treatment. I declined the hormone therapy (tamoxifen) because I had an unusual form of IDC that has a recurrence rate that is lower than the risk of endometrial cancer if I were to take tamoxifen for 5 years like they wanted me to. That was 10 years ago. I was diagnosed with UC the same week as my IDC diagnosis, and let me tell you, UC has been the much much bigger deal.

I'm not telling you to decline treatment. All I'm telling you is that they are being horrible to you for no good reason. I could go on and on and I'm happy to do so if you have any interest. But the most important thing here is that my heart goes out to you in the deepest way possible. This is the kind of thing that makes me just hate doctors.

Hey all,

Sorry I'm MIA. Dealing with a heavy workload, daughter's high school graduation, my pouchitis and about a million other things. I talked to my doc again and they said if the antibiotics are working, they won't move on to anything else. They switched me to Flagyl and I do feel better, but now I'm afraid to even try to stop them because if my symptoms come back, it takes so long for the antibiotics to kick back in. It's been a frustrating roller coaster. :-( I have been reading when I can on the jpouch.org site to see if there are any other options. One of the posters on there has been on antibiotics for his pouchitis for over 20 years. He never comes off them. I really don't want that either. Ugh. I may try to find another doc, it's just hard to get an appointment with a really good GI when your a new patient.

Valli - I hope the FMT went okay and you are feeling better. Song - it's great to hear you are getting out and getting your walks in. And great news that you can eat tomato based sauce, you will really get to enjoy the delicious foods in Italy!! Champ - Glad to see you are enjoying your own place. I'm sure it's a change, but at least it's a good change!!