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Posted 2/3/2019 10:51 AM (GMT 0)

Woogy said...
Doc gave me Cipro. But it's a 30 day supply. I thought it's normally 2 weeks?? But I'm already feeling better and only had to get up one time last night in a span of 7 hrs. Man was that nice!!! lol I no longer have that feeling of pressure going on and now it actually feels like I can empty my pouch fully. I actually feel "normal" finally. I'm going to touch base with my doc tomorrow and see if and when I should start the suppositories.

That’s awesome so happy it’s working for you . You mentioned the pressure was cleared up .. that’s when I knew my cipro was working . I remember 3TC saying once he can empty his pouch in the evening and I remember thinking my pouch never gets empty it’s keeps pooping out it never stops . But with the cipro I was actually emptying my pouch and it sounds like you are as well .
I hope to feel “ normal “again as well . When do you finish your course of meds ?
Posted 2/3/2019 11:07 AM (GMT 0)

songlady said...
I am doing well! Even with the bumps in the road, I would not at all say (to respond to Woogy) that I am not doing well with my pouch. I sure had some issues with the ostomy, with a horribly painful hernia and the pyroderma gangrenosum, and this is better than that!

I think, nssg, that I have been particularly grumpy about the frequency because my UC had not a bad flare in years. So unlike those whose UC is out of control prior to surgery, I was feeling well - and this has been sort of a surprise. I hadn't had a situation of 8+ bathroom trips per day for.... more than 30 years?

The Docs told me recovery would take 6 months for the acute recovery and 1 year for something like 98% recovery, and I think I am on track. (I am almost 6 months post-reversal.) Being an incurable optimist (lol) I had assumed I'd beat everyone's expectations and do better than their predictions. But, realistically, given my age and having gone through 6 months of chemo, which obviously affected all my cells, I think I'm doing fine.

I've been back at work since about 3 weeks post-reversal. At first I was p/t, but now I'm really back to it, which includes not only days but several evenings a week. My BMs tend to cluster in the evenings, so sometimes that's difficult.

But, your question, Keith: I have been great since the last round of Cipro. I started with just that (per Dr) but then added Flagyl for the last few days. Have been off them So far so good. Stupid thing, I ate acorn squash a few days ago, as I finished my meds, and squash has always caused me issues (but I LOVE squash!) ... so I had some increased urgency/frequency until that got through me.

My 6 month post-chemo CT scan is this week. Then the following week I do extensive bloods and see the oncologist. I hope the pouchitis issue is calm for a while! And that all the oncology stuff is clear.

I think you are doing amazingly well for everything you have gone through plus 6 months of chemo has to affect everything I woukd give yourself a big pat on the back .

And squash doesn’t sit well with me since all this has started . There are certain foods you try and then say to yourself “ nope never again “ that may be one .
Keep us updated on your up and coming tests.
Posted 2/3/2019 11:10 AM (GMT 0)

3timechamp said...
Woogy my fellow 2018 surgery mate,i hope you and Valli can get some peace with cuff/pouch issues.Between your Dr and the great people here you will get to that peaceful life we rarely had during UC days.Good Luck my friend


Thank you 3TC I am sure peace is around the corner for all of us.
It better be because if not “ somebody going to get a beating “
A quote from Russell Peters the comedian.
Posted 2/3/2019 3:28 PM (GMT 0)
Valli that's why I say give me 1 year from last surgery. If no complications then I'm ok. It's 5 months since surgery so besides hernia I'm ok. You mentioned emptying pouch before bedtime. Sometime after 9:00PM I will get the urge to go. After BM there's a large amount of gas. Once gas is out I know I'm empty. I am a heavy sleeper so after surgery I had few accidents while sleeping. Haven't had an accident in few months. So sleeping has been great thank God. I'm lucky bc I see people here are getting up during night to go. I try not to eat much later in night so I have less food in my system. Not easy but seems to be going ok for me now. Cold weather has been a ***** for many of us so let's hope Feb and March are mild and spring gets here ASAP. Be well all
Posted 2/4/2019 11:34 PM (GMT 0)
I’ve heard it takes up to 18 months for your jpouch to fully adjust.
Posted 2/5/2019 12:27 AM (GMT 0)
It's doing well after 5 months. Hope it stays that way
Posted 2/7/2019 12:46 PM (GMT 0)
3timechamp that is awesome and it should be that way... I have been trying to get hold of my gastro so we can switch to Rifaximin but since we have had two ICE days here it means half the city is closed.
Posted 2/8/2019 5:34 AM (GMT 0)
I hope you can get seen soon valli. What a challenge with this freezing cold weather. I can barely step foot outside here, and I live in the south. It's been a really terrible winter. sad

how are you doing?
Posted 2/9/2019 1:33 PM (GMT 0)
Thanks NSSG and yes looking forward to warmer weather . I am even further north now came up to my boyfriends chalet an additional 2 hours north of Toronto it’s -9 and these fools are up on the hills skiing . I am facing Georgian Bay nice and warm by the fireplace looking at the waves crash against the ice caps .

Still in great pain I started my antibiotics yesterday the doctor and pharmacist were going back and further regarding my dam allergy they finally settled on sending my back on cipro and flagy for the main reason it did work before and I think my new menopause was the reason for the heart palpitations. I didn’t want to risk an allergic reaction on the cephalosporin till I get tested by an allergist . I had 17 BM yesterday and serve pressure pain by the back door and I also had my second accident in the middle of the night . I can’t live like this praying by tomorrow the meds will have kicked in and I can go back to a normal life.
Posted 2/10/2019 10:17 PM (GMT 0)
I am so sorry valli. I hope you're feeling better. How are you? You had really quick results with the flagyl/cipro last time... Did your GI give you ideas for longer-term treatment options?
Posted 2/11/2019 4:21 AM (GMT 0)

notsosicklygirl said...
I am so sorry valli. I hope you're feeling better. How are you? You had really quick results with the flagyl/cipro last time... Did your GI give you ideas for longer-term treatment options?

So far so good . Friday and Saturday I had liquid diarrhea all day but no pain so I am ok with that . Drinking a few Gatorades today because I started to feel dizzy guessing the liquid BM is the reason . Overall I am feeling more like myself not 100% but at least 70%. The only long term solution he talked about was if the antibiotics didn’t work he was doing a fectal transplant study in 8 weeks and I could be part of that.
Trying to remain hopeful this time around. My question is how long can I stay on the antibiotics? He gave me a months supply but after that I want to see if all is healed inside. I knew within 3 days my symptoms were back so let’s hope a month on them is enough.
Posted 2/11/2019 1:31 PM (GMT 0)
I stayed on antibiotics for most of 3 years. You have to take vacations (time off) from the antibiotics otherwise you can get a yeast infection (thrush) and make your symptoms worse.
Posted 2/11/2019 2:48 PM (GMT 0)

ks1905 said...
I stayed on antibiotics for most of 3 years. You have to take vacations (time off) from the antibiotics otherwise you can get a yeast infection (thrush) and make your symptoms worse.

I had thrush for 3 weeks when I was hospitalized in 2017 and my poor mom suffered with it from meds it went into her throat and she couldn’t eat or drink for weeks couldnt get it under control.
It’s something I want to avoid at all costs but thanks for the heads up KS1905 three years is a long time to be on antibiotics . When you tried to get off how long till you knew your symptoms returned?
Posted 2/11/2019 2:55 PM (GMT 0)
I was really never able to get off of them, I was able to go off for 4-7 days at a time. I would take Fluconozole with the antibiotics as a preventative to Thrush.

The antibiotic holidays help with avoiding Thrush.

I’d go really hard on the antibiotics for a month or so and if that didn’t work then I’d try the transplant.

I’m prone to Thrush myself, I would get it really bad too. If the transplant doesnt work then I’d consider a biological since Thrush will be an ongoing battle if you continue on antibiotics.
Posted 2/11/2019 3:00 PM (GMT 0)
I can't take antibiotics for any period of time. I get yeast so easily from antibiotics. I would have to try to find something else. Three years is pretty impressive though. I guess people who have other situations, like Lyme, take antibiotics for longer periods. They might have some tricks for avoiding thrush - the board here on HW is quite active too if you want to ask over there.
Posted 2/11/2019 3:33 PM (GMT 0)

notsosicklygirl said...
I can't take antibiotics for any period of time. I get yeast so easily from antibiotics. I would have to try to find something else. Three years is pretty impressive though. I guess people who have other situations, like Lyme, take antibiotics for longer periods. They might have some tricks for avoiding thrush - the board here on HW is quite active too if you want to ask over there.

Cider vinegar daily. Certain mouthwashes, and tooth paste, diet restrictions, probiotics, fluconozole and antibiotic holidays. I would also use Pepto to extend the holidays.

I went to a dietitian who specializes in yeast infections. There is a book that you can buy called coping with Candida with more recommendations.
Posted 2/12/2019 8:44 PM (GMT 0)
I had my scheduled appointment with the oncologist today. CT scan was clear, blood levels are good! I see him again in 3 months for more bloods, and in 6 months for another CT and again bloods. This is protocol for the first year post-chemo.
However, as I had suspected, I do have a "small" hernia. I didn't ask details because the surgeon had asked that the CT results, along with certain blood results, be sent to him. We'll talk in the next few days.

I had spoken to the surgeon re. gas. (After a few days of violent gas it had died down to more normal levels. I wonder if I'd actually had a touch of a virus, because I'd had some queasiness also.) He thought the level of gas I was describing sounded within the normal range for this stage, and said it would improve as time goes on. But for now, he suggested I take Gas X and Beano with meals. That has helped a lot. Also suggested Heather's Tummy Tamers - a peppermint capsule which also contains ginger and fennel. I ordered those and they just arrived today. Will report on them!

Whew: successfully jumped through another hoop!
Posted 2/14/2019 5:32 AM (GMT 0)

ks1905 said...
I was really never able to get off of them, I was able to go off for 4-7 days at a time. I would take Fluconozole with the antibiotics as a preventative to Thrush.

The antibiotic holidays help with avoiding Thrush.

I’d go really hard on the antibiotics for a month or so and if that didn’t work then I’d try the transplant.

I’m prone to Thrush myself, I would get it really bad too. If the transplant doesnt work then I’d consider a biological since Thrush will be an ongoing battle if you continue on antibiotics.

That was the only time I had thrush and it lasted for a week or so then came back a few or so days later
I remember what it was from it was the high doses of prednisone. I did the banana tasting gargal 3 times a day.
Posted 2/14/2019 5:44 AM (GMT 0)

songlady said...
I had my scheduled appointment with the oncologist today. CT scan was clear, blood levels are good! I see him again in 3 months for more bloods, and in 6 months for another CT and again bloods. This is protocol for the first year post-chemo.
However, as I had suspected, I do have a "small" hernia. I didn't ask details because the surgeon had asked that the CT results, along with certain blood results, be sent to him. We'll talk in the next few days.

I had spoken to the surgeon re. gas. (After a few days of violent gas it had died down to more normal levels. I wonder if I'd actually had a touch of a virus, because I'd had some queasiness also.) He thought the level of gas I was describing sounded within the normal range for this stage, and said it would improve as time goes on. But for now, he suggested I take Gas X and Beano with meals. That has helped a lot. Also suggested Heather's Tummy Tamers - a peppermint capsule which also contains ginger and fennel. I ordered those and they just arrived today. Will report on them!

Whew: successfully jumped through another hoop!

Songlady all that sounds like you are heading in the right direction and the gas does sound like a virus specially the queasiness part.
Let us know how the heath tummy guys work out , I have gas often no queasiness just dizziness. I worry that I too have an hernia but trying to tackle my none stop stupid diarrhea now my stomach and scar area can wait. Do you have symptoms from the hernia

And again I am truly happy all went well CT scan .
Posted 2/16/2019 10:36 PM (GMT 0)
Hey peeps. Sorry I haven't been online much. Been busy with work, kids, etc. The antibiotics and suppositories have seemed to help. It's been a week since I stopped taking them and I feel pretty good. But I did start taking VSL 3DS and this makes a difference. I still get up at night but it's only once so I'm not complaining lol. I hope the pouchitis/cuffitis don't come back because that was awful.

Song, I'm glad your CT was good. Valli, sorry you're still having issues. I hope the antibiotics so the trick for you. Champ, glad you have your hernia surgery coming up and hope your divorce is finalized by then too (I'll keep my fingers crossed). And everyone else, hope all is well.

Everyone stay warm and let's pray this cold snap is gone soon. 😋
Posted 2/20/2019 8:15 PM (GMT 0)
Well....I guess I spoke to soon. The pouchitis is back. I noticed 2 days ago that I was getting up every 2 hrs at night again, the pressure slightly returning and the having to go as soon as I eat something. I had my follow up appt with my GI today and he did an endoscopy to confirm and yes it's pouchitis. So back on the Cipro. But this time he's doing 2 weeks taking it twice a day and another week at once a day. He's hoping that the extra week will clear everything up for good this time. This is really frustrating to go through. I hope this works for good this time around.
Posted 2/20/2019 8:52 PM (GMT 0)
For most people you have to be aggressive with pouchitis to knock it out.

You may need to add a 2nd antibiotic in to the treatment.

The nice thing is that it acts fast (like 24 hours) but you need to continue on if for a while to knock out the remaining pouchitis.
Posted 2/21/2019 8:47 AM (GMT 0)
Oh no. I am so sorry. I hope you're better soon. Keep me updated!

Valli and song, how are you two?
Posted 2/25/2019 1:20 PM (GMT 0)
Hi nssg and all - I am doing fine.Taking more Gas-X and Beano has helped me a lot. For the first few months, I couldn't see a pattern between eating and bathroom visits, because it seemed as if I were in the bathroom a lot no matter what, but now it's settling down to heavier food/bigger meals = more bms, lighter food = less.

Evenings are still the most difficult time, with gas and more frequent bms, and my job requires some evening meetings. At this point I just warn them I am not at my best and might need to leave the room from time to time. We try to have lighter meals those days but sometimes it just "is what it is!"

At the end of the week DH and I are flying to see his family for his mom's 95th birthday! This will be my first time flying since before the surgeries. There will be large time periods of no bathroom accessibility (or only on the plane, ugh.) I'm thinking it will be OK!

Bottom line (lol, "bottom line"!) 6 months post-reversal, I am feeling like I am getting my life back. smile
Posted 2/25/2019 2:46 PM (GMT 0)
Song u know routine by now. Eat very light before your plane trip. I take Half daily amount of lomitil and Imodium per day(around 2 of each). I just hope it binds me up a little. Most of time stool is loose depending on what I ate. Once in a while I'll add another lomitil or Imodium if stool is loose loose. Are u flying out of Conn airport??? To where?? With my UC I flew to Cancun(3hrs) and Florida (3hrs) from JFK and luckily went fine but barely ate for 24 hrs before trip. 3 hour flights seemed to go by quickly,always brought newspaper etc to read and keep my mind off UC. Little stressful. Hope all goes well

Post Edited (3timechamp) : 2/25/2019 8:38:11 AM (GMT-7)

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