Recently taken-down friends

I’ve had blockages, they clear themselves. Drink so wine, cola, coffee and add a hot pad or shower.

It’s really noisy and bloating. I’m not sure good caused any of mine.

I eat most things. You should definitely avoid popcorn. Chew your food and drink

---

Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

Bull101 said...

NSSG, and this is maybe a good note for all new jpouchers, for me it depends a lot on what I eat. usually I eat a cheese, grit, meats casserole for breakfast, and a chicken cobb salad for lunch. If I do that I go maybe once around 8am (12 hours after dinner), and then most days I don't have to go until around 4:30-5:30 which is incredible for me.

It doesn't matter what I eat, I am very regular and similar to your schedule, 8AM, 4;30-5:30 and then once before bed.

I have difficulty emptying my pouch if it is not liquid and can take me some time to empty but I'm not living in the bathroom like I did with UC. I am fortunate that I can always sleep through the night without getting up to empty.

---

Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

Got the results back from my doc. There are no surgical complications but there is inflammation in the pouch and the cuff. So they want to start me on an antibiotic. I did ask them if I should also use a suppository since I have inflammation in the cuff too. I really hope this helps me feel better.

For those of you who go on schedule and only get up once a night, I'm so JEALOUS!!! LOL I would love to sleep through the night just once. I get up every 1-2 hours to go. Ugh. :-(

---

~Diagnosed in 2001 - Left Side UC
-Vit D, Vit C, Multivitamin

Previously tried colozal, lialda, asipro, sulfasalazine, rowasa, canasa, hydrocortisone enemas, Imuran and Humira - they all failed or made symptoms worse.

**Step 1 of 3 - Surgery on 1/29/18**
**Step 2 of 3 - Surgery on 8/6/18**
**Step 3 of 3 - Surgery on 11/12/18**

Woogy, I am sorry. At least now you know what you're dealing with and you can treat it. I am sure the inflammation is causing all the trips. You will probably go much less once you're treated. Hopefully it's short-term, like Keith said, a lot of people suffer from pouchitis, it doesn't mean it will continue to occur.

I keep seeing quite a few people suffering with pouchitis after surgery. it makes me sad. I wish everyone could do well and get their lives back quickly!

---

Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free
Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

Yes, take probiotics but not at the same time that you take the antibiotic because it will just kill the probiotic (So space them out).

My GI recommends Florastor and Culturelle. Florastor is a yeast so I think it lasts a little better against the antibiotics.

---

Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

That should be good spacing.

What antibiotic(s) did you get?

---

Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

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

Hi all!
I've been MIA. So this post will meander a bit.

Hubby and I took a road trip to see family- 825 miles each way. The good news is: I did it! and lived to tell about it - lol! I had some white-knuckle discomfort on the way (see below) and had a tour of the restrooms in the town we visited, but this is my first trip in almost 1 1/2 years (I wasn't up to traveling during chemo) and it can be counted as a victory. We may do the trip again in 6 weeks for a significant family birthday!

I'd had a prescheduled appointment with the surgeon the day before we left. He made sure I was stocked up on Cipro and Flagyl just in case. Good thing, because before we even left home I started with enormous, ENORMOUS amounts of gas and incredible gas pains. I toughed that out for about 4 days until I hit the meds. Doc had suggested I try just the Cipro, since Flagyl had caused me nausea. The Cipro helped.

I know, KS, you advise the full course of it, but for now I am trying to play it as per the doc - so I stopped the Cipro after about 2 1/2 days.

All was fine for about 5 days and it started up again. (We were back home by then.) As soon as I swallowed one mouthful at a meal, the other end would react (good ol' gastrocolic reflex!) and I'd have to RUN to the bathroom. Urgency, pain if I didn't run. After one memorable evening leading a committee meeting at work, in which I had to run to the bathroom twice in an hour, and such urgency I soiled undies 3 times, I restarted.

I talked to the nurse, who basically calmed me down and gave me permission to be a little "creative" in seeing what works for me. So, as of 2 days ago I am trying Cipro (500 mg twice a day, with breakfast and dinner as per Doc) and I am doing one Flagyl per day, at breakfast. So far no nausea. I am doing Probiotics halfway through the day (or at bedtime, if I forget during the day.)

The amount I am seeing in BMs hasn't decreased much, but the number of trips has.From 12 to 6, with usually once at night, depending on food/schedule of food.

I have a CT scan schedule in a few weeks for the oncologist, and the surgeon wants to check it to see if I have a hernia. He said the abdominal wall was very weak, and I definitely have a bulge. But otherwise, I feel optimistic!

I just caught up on this thread. Hope everyone is doing OK this weekend.

---

Age 62. 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

Thanks for the update Song. I am sorry you've been up and down, but it's good to hear you're finding ways to get your pouch to function how you want it to. I guess there is a tough period following takedown, and it's for everyone, but it's especially hard when there's an issue and you don't know whether it's normal 'adjustment', or something more. Keith has also mentioned pepto being helpful for his pouch. I know for me, I ned to take zofran with a lot of meds in order to tolerate them. Might not be a bad idea to have some on hand.

---

Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free
Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

songlady said...
When I saw the surgeon just before my trip, he told me to make sure I also took Pepto with me. So I did. I've taken it a few times, but.... I am not altogether clear on what it is supposed to do?

Pepto helps me with the gas, bloating and diarrhea. It only works sometimes for me and not all the time. Mostly the gas.

I haven't needed it since I started Stelara.

---

Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

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.

---

Age 62. 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

Champ, the surgeon suspected pouchitis. Told me to try them and discontinue after 48 hours if they didn't help. They did help - within about 3 hours I felt better! But the Flagyl tends to make me nauseated, so Doc suggested I try just the Cipro. It didn't do as much, so I added in 1/2 the Flagyl he'd prescribed. I was able to do that few several days before the nausea hit! And so far all seems fine.
What's the news on the hernia? How is the pouch life otherwise?

---

Age 62. 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