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Posted 1/13/2019 2:10 PM (GMT -5)
I am happy you're seeing good results valli. Hopefully the antibiotic course does the trick and you are clear after. Are they going to scope again at some point? I wonder if they had scoped before you got on treatment, would it have shown more inflammation? Did you speak to the surgeon? I wonder what she would think about everything.. she's been so passive.
Posted 1/13/2019 5:39 PM (GMT -5)

Woogy said...

As for me, I'm having some issues. I've had this pain in my left buttock area which I finally couldn't take the pain and went to my chiropractor to see if he could help (since my GI doc thinks it's muscular). Chiro thinks it's my periformis muscle which is very tight. So I've been stretching/heating it and it seems to help. But then last night I woke up with horrible pain in my left side that traveled to my groin. And I couldn't go to the bathroom, which is off since I'm up so many times a night going. I drank 3 cups of coffee this morning and it got things moving but the pain is still there. I ate some pasta for lunch and now that pain is really bad. WTH. If it's not one thing it's another. My coworkers want me to go to immediate care but I don't think they will know what is going on. I emailed my GI since after lunch the pain is worse. I don't think it's a blockage since I can not go to the bathroom so not sure what could be causing it. Ugh.

How did you make out with this?
Blockages produce a lot of stomach noises, bloating and nausea.

Wine is a good blockage clearer for me. Also a shower and then a heating pad on the area.
Posted 1/13/2019 5:47 PM (GMT -5)

valli1234 said...

What I do not understand is it has to be bacterial right, because once on both antibiotics the first time last week I saw a 90% difference in just two days, I finally have my life back and its all due to the antibiotics so I wonder was it in my pouch and it healed already or the cuffitis?

about 3/4th of stool is living bacteria, when you kill off a lot of the bacteria in the stool with antibiotics then you’ll go a lot less and less friction on the infected areas.

I’m not sure about this but I think antibiotics has some anti-inflammatory properties.

No matter what, they worked really well for my pouchitis.

There is another surgery if you have reoccurring cuffitis were they go in and scrape the textual cuff and remove some of the membrane that is giving you that UC/cuffitis issues.
Posted 1/14/2019 5:06 AM (GMT -5)
I feel like crying everytime we get snow , as you can tell from my love of vacations I am so a sunshine kind of gal... palm trees 🌴 and blue skies are what I truly love . Not snow, not seeing blue skies for days at a time and certainly not the extreme cold. Yes! we tend to watch a lot of hockey our team in the house is Tampa Bay ( go figure ) lol .
Up for the first time in days 4:50 am I had fish and chips for dinner I believe the greasy food isn’t doing well in my pouch ... my fault for trying that out plus I had a butter tart. Live and learn
When is your operation and are you numb around the stoma site I have yet to have any sensation in that area.
Posted 1/14/2019 8:37 AM (GMT -5)

notsosicklygirl said...
I am happy you're seeing good results valli. Hopefully the antibiotic course does the trick and you are clear after. Are they going to scope again at some point? I wonder if they had scoped before you got on treatment, would it have shown more inflammation? Did you speak to the surgeon? I wonder what she would think about everything.. she's been so passive.

Thank you NSSG smile
That’s what I assumed there had to be a bit more inflammation because by the time I went for the scope I was feeling terrific . I can’t be bothered with the surgeon I won’t waste anymore of my time on seeing her. It still gets me mad when I think of all the months I suffered .
Posted 1/14/2019 9:07 AM (GMT -5)

ks1905 said...

valli1234 said...

What I do not understand is it has to be bacterial right, because once on both antibiotics the first time last week I saw a 90% difference in just two days, I finally have my life back and its all due to the antibiotics so I wonder was it in my pouch and it healed already or the cuffitis?

about 3/4th of stool is living bacteria, when you kill off a lot of the bacteria in the stool with antibiotics then you’ll go a lot less and less friction on the infected areas.

I’m not sure about this but I think antibiotics has some anti-inflammatory properties.

No matter what, they worked really well for my pouchitis.

There is another surgery if you have reoccurring cuffitis were they go in and scrape the textual cuff and remove some of the membrane that is giving you that UC/cuffitis issues.

KS how long were you on the antibiotics for and are you on biological drugs now for your pouchitis ?
Not sure I like the sound of removing some of the membrane I haven’t come across any info on that.
I just pray the antibiotics will do the job , I had watery diarrhea early this morning first time since I started my meds.
Posted 1/16/2019 2:20 PM (GMT -5)
Valli how you doing?
Posted 1/16/2019 8:59 PM (GMT -5)

valli1234 said...

KS how long were you on the antibiotics for and are you on biological drugs now for your pouchitis ?
Not sure I like the sound of removing some of the membrane I haven’t come across any info on that.
I just pray the antibiotics will do the job , I had watery diarrhea early this morning first time since I started my meds.


Valli,

Bull101 has the surgery to fix his cuff, seems like minor surgery from his experience.

https://www.healingwell.com/community/default.aspx?f=38&m=3929645

I was on antibiotics for most of 3 years and another 3 of Stelara. There was some overlap there with both and another when I had my hip replaced ( had to go off of a biological for that)
Posted 1/16/2019 9:29 PM (GMT -5)
I had the cuff scraped or mucousectomy... Someone told me that if you have a pouch redo, they always scrape the cells. I wonder if I would be struggling if I hadn't done it? I was scared about it though personally. I read that it can make you more likely to have incontinence, but for me, I haven't had issues. That said my surgeon is very experienced, probably has done 1000s of pouches.
Posted 1/17/2019 10:10 AM (GMT -5)
Yeah I had it done, I went to Vegas a week after my surgery with a buddy and no real issues besides a little bit of pain obviously.

I did have a little bit of an episode 1 night where i was bleeding and it wouldn't stop, had to lie on my side for 2 hours with gauze in between my butt cheeks and hope it stopped, which it did. I think it helped me a lot. I can hold it for like 1-3 hours if I really need to, though it becomes VERY uncomfortable. I'm at 4-6 times per 24 hours if I eat healthy (salads, smaller meals) or 6-7 if I eat bigger meals and carbs. If you need the scraping done, don't worry.
Posted 1/21/2019 7:49 PM (GMT -5)
Hey guys,

I've been MIA lately. Still not feeling the best. Went to the GI and they couldn't figure out what was causing the pain in my groin which got worse after eating. They don't think it's a hernia so that's good. Gave me some anti-spasmatic meds to take before meals and that helps. I still get a lot of pressure inside my pouch which is uncomfortable. And I'm up 3-4 times a night going. I'm exhausted. It's weird last night I woke up with a screaming headache. All I had was Aleve so I took 2. After that I didn't have to get up to use the bathroom the rest of the night. Even this morning, I ate breakfast and had coffee. I didn't go until a couple hours later which is really nice but not my normal. Usually the minute I start eating I have to go. It reminds me of my UC days. I can only hold it a short amount of time and then I have to go. It's really frustrating. I thought by now I would be doing great. I'm going on Wednesday to get an MRE to check out my pouch and see what could be causing all this.
Posted 1/21/2019 8:21 PM (GMT -5)
It sounds like it could be pouchitis. I hope you get answers on Wednesday so you get better quickly. Let me know what they say. Have you tried antibiotics?
Posted 1/21/2019 9:01 PM (GMT -5)
I wouldn’t take Aleve, it’s a NSAID and can cause bleeding. My GI warned me about them with a j-pouch.
Posted 1/21/2019 10:19 PM (GMT -5)
No I haven't tried antibiotics. The doc wants to wait for the MRE before doing anything. Yeah I have been using Tylenol now but last night all I could find was Aleve. It was 3am and I was too exhausted to do downstairs to find the Tylenol. I hope something shows up on Wednesday so I can get relief.
Posted 1/21/2019 10:50 PM (GMT -5)

ks1905 said...

valli1234 said...

KS how long were you on the antibiotics for and are you on biological drugs now for your pouchitis ?
Not sure I like the sound of removing some of the membrane I haven’t come across any info on that.
I just pray the antibiotics will do the job , I had watery diarrhea early this morning first time since I started my meds.


Valli,

Bull101 has the surgery to fix his cuff, seems like minor surgery from his experience.

https://www.healingwell.com/community/default.aspx?f=38&m=3929645

I was on antibiotics for most of 3 years and another 3 of Stelara. There was some overlap there with both and another when I had my hip replaced ( had to go off of a biological for that)

Isn't three years a long time to be on the antibiotics? Did you try to get off them in that time? And thanks for the info on BULL 101
Posted 1/21/2019 11:14 PM (GMT -5)

Bull101 said...
Yeah I had it done, I went to Vegas a week after my surgery with a buddy and no real issues besides a little bit of pain obviously.

I did have a little bit of an episode 1 night where i was bleeding and it wouldn't stop, had to lie on my side for 2 hours with gauze in between my butt cheeks and hope it stopped, which it did. I think it helped me a lot. I can hold it for like 1-3 hours if I really need to, though it becomes VERY uncomfortable. I'm at 4-6 times per 24 hours if I eat healthy (salads, smaller meals) or 6-7 if I eat bigger meals and carbs. If you need the scraping done, don't worry.

Hi Bull101 I was reading a post by you from 2017 when you had your cuff scraped. What were your symptoms you were experiencing with your cuffitis. And Keith mentioned in a post the amount of cuff you were left with?. My gastro said I had inflammation in the last 5 cm. So is it UC there or cuffitis or is that the same thing.
thanks
Posted 1/21/2019 11:36 PM (GMT -5)

Woogy said...
No I haven't tried antibiotics. The doc wants to wait for the MRE before doing anything. Yeah I have been using Tylenol now but last night all I could find was Aleve. It was 3am and I was too exhausted to do downstairs to find the Tylenol. I hope something shows up on Wednesday so I can get relief.

I hope it all works out Wednesday and you figure out what is going on. What is the thinking behind the test isn't it a test for blockage of the small intestine or bleeding?
Posted 1/22/2019 7:54 AM (GMT -5)
I don't know the exact amount of cuff I have left my doc just used fingers to show and it was around 1" or so that he left. He said it was very very minimal.

I was experiencing a lot of itching, some discomfort and a little bit of urgency. Also had some bleeding so we did the procedure and I've been okay since. I get up once a night most nights but that's no biggie.
Posted 1/22/2019 8:08 AM (GMT -5)

valli1234 said...

Woogy said...
No I haven't tried antibiotics. The doc wants to wait for the MRE before doing anything. Yeah I have been using Tylenol now but last night all I could find was Aleve. It was 3am and I was too exhausted to do downstairs to find the Tylenol. I hope something shows up on Wednesday so I can get relief.

I hope it all works out Wednesday and you figure out what is going on. What is the thinking behind the test isn't it a test for blockage of the small intestine or bleeding?

I had an MRE prior to surgery and it shows a lot actually. It can show if there's inflammation in the upper GI system, or issues with other organs... It should be able to tell you whether there's inflammation in the pouch I would think. Mine showed all of my issues in my colon, but it was clear in the upper - I was thankful for that.
Posted 1/22/2019 8:10 AM (GMT -5)

Bull101 said...
I don't know the exact amount of cuff I have left my doc just used fingers to show and it was around 1" or so that he left. He said it was very very minimal.

I was experiencing a lot of itching, some discomfort and a little bit of urgency. Also had some bleeding so we did the procedure and I've been okay since. I get up once a night most nights but that's no biggie.

It's so nice to hear you're doing so much better! I am happy for you. I am usually up once in the night too, but it really depends what I eat and when. I don't use bowel slowers either, there are probably things I could do to avoid the nighttime trip, but I get up often regardless, I am a very light sleeper, so I am used to it.
Posted 1/22/2019 11:56 AM (GMT -5)

valli1234 said...

I was on antibiotics for most of 3 years and another 3 of Stelara. There was some overlap there with both and another when I had my hip replaced ( had to go off of a biological for that)

Isn't three years a long time to be on the antibiotics? Did you try to get off them in that time? And thanks for the info on BULL 101

Valli,

You go on an antibiotic for 2-3 weeks and then go off of it for 5-7 days (antibiotic holiday). I would take pepto during that time. I did this for almost 3- years. You rotate antibiotics so you don't build up immunity to them. I would use about 4 different antibiotics and combinations. There are people doing to for 20 years, I am much happier on Stelara.
Posted 1/22/2019 4:58 PM (GMT 0)

Woogy said...
No I haven't tried antibiotics. The doc wants to wait for the MRE before doing anything. Yeah I have been using Tylenol now but last night all I could find was Aleve. It was 3am and I was too exhausted to do downstairs to find the Tylenol. I hope something shows up on Wednesday so I can get relief.

Woogy,

Are you staying hydrated? It's like an instant headache for me if I don't stay hydrated. I'm always drinking something.
Posted 1/23/2019 7:37 AM (GMT -5)
Good luck with your test today Woogy and ks1905 what other antibiotics did you use other then cipro?
Posted 1/23/2019 7:54 AM (GMT -5)

valli1234 said...
ks1905 what other antibiotics did you use other then cipro?

Flagyl, Cipro, Augmentine, and Xifaxan. There are others if necessary but I haven’t used them.
Posted 1/23/2019 8:16 AM (GMT -5)

notsosicklygirl said...

Bull101 said...
I don't know the exact amount of cuff I have left my doc just used fingers to show and it was around 1" or so that he left. He said it was very very minimal.

I was experiencing a lot of itching, some discomfort and a little bit of urgency. Also had some bleeding so we did the procedure and I've been okay since. I get up once a night most nights but that's no biggie.

It's so nice to hear you're doing so much better! I am happy for you. I am usually up once in the night too, but it really depends what I eat and when. I don't use bowel slowers either, there are probably things I could do to avoid the nighttime trip, but I get up often regardless, I am a very light sleeper, so I am used to it.

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.

If I eat carbs, and bigger meals, I go a little more often. It seems that the more carbs and fried type food I eat, the more liquid my stool is, and the more often I have to go. Seems counter intuitive but it works for me. Yesterday I went 3 times during the day and once at night with that sort of meal plan (Pork chops, sweet potato gnocchi and green beans for dinner).

It definitely started settling for me around 1.5 years after surgery to where it really started improving.
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