Just Curious, Symptoms of Pouchitis

It took me a few months before they diagnosed me with pouchitis, we just thought it was the adjustment period but I probably had pouchitis from the takedown.

My main issues were diarrhea, stomach noises all the time, difficulty emptying my pouch.

Usually the only way they diagnose it is by a scope but they also will prescribe antibiotics and if things get better then it was pouchitis.

Now might be a good time to get scoped, to see if you have any strictures or if it is pouchitis. I had both, things did get better after I got dialated but I still have pouchitis.

I hope that you feel better soon.

I definitely have diarrhea more than I do any type of formed stool, my stomach is LOUD and I have a lot of gas pressure. I had a stricture which he dilated already and has checked it two more times and it hasn't come back. I don't have any tailbone pain but there have been times when I've gotten up and it feels like my joints in my hips have been pretty sore.

notsosicklygirl said...
I don't have formed stools all the time either. I have a mix, sometimes it's like pebbles, sometimes it's like water and other times it's anywhere between. I don't have any leaking or urgency. Do you take immodium? I haven't tried it, but with my loop, my doctor had me taking it a few times a day to try to slow things and prevent dehydration. I have to wonder if starting with longer intestines helps in general, because we know shorter intestines causes faster transit. It's weird because you have these surgeries, but you're never aware of how much you had, and how much you have left.

I've been taking a combination of Immodium and Lomotil, especially before I go to bed but it doesn't help. My surgeon said I can take 8 immodium / day.

spoke to my Surgeon and my GI's office, my surgeon is going to try and antibiotic and see if anything improves and my GI prescribed VSL3 double strength probiotic to go along with it and we'll see what happens

ks1905 said...
Good luck getting your insurance to cover VSL-DS, my insurance wouldn't cover it. A good alternative is a combination of Florastor and Culturelle.

You might want to cut back on carbs, they are food for bacteria. I try to starve and kill the bacteria with the antibiotics.

Which antibiotic(s) are they prescribing you? The only thing that works for me is a combination of antibiotics.

He gave me 7 days of Cipro so far. The pharmacy needed to order the VSL it will be here tomorrow

ks1905 said...
I don't know if they gave you any instructions for when to take the Cipro and VSL-DS but you should space them out. The Cipro will kill off the VSL so if you space it out then more of the probiotic will survive.

I take the Cipro twice a day, breakfast and dinner. I figured if I take the VSL with lunch or possibly before I go to bed, that would work. Idk if this is just a coincidence but I took my first Cipro last night and I slept through the entire night, no leaks, no constant gas pressure at all and still this morning no issues. I haven't even emptied my pouch since I woke this morning.

I'm going to keep track of my BM's over the 7 days and see how many times a day I go / consistency in my stool etc so I can give the surgeon a detailed update. I would say if my nighttime leaks stop it's probably a good indication that it's pouchitis as that's one of the symptoms

blksteeda said...
so far I've only emptied my pouch once today since early evening yesterday and I have no gas pressure or any sensation that I need to empty. I didn't know antibiotics can work that fast if this is what it is

One time I emptied my pouch after 26 hours.

If I stop the antibiotics then it takes about 7-10 days before my issues return, when I start them back up it takes 24-48 hours before things really start to improve

I'm glad that you're feeling better, I hope that you can stop the antibiotics after the 10 day dose.

ks1905 said...

blksteeda said...
Idk if this is just a coincidence but I took my first Cipro last night and I slept through the entire night, no leaks, no constant gas pressure at all and still this morning no issues. I haven't even emptied my pouch since I woke this morning.

That is similar to my experiences, I never have to wake up at night. I have almost no gas or pressure but I do get some gurgling noises. I empty 3-4 times a day. Sometimes I do get tired, usually when I rotate antibiotics. I'm not sure if it is the antibiotics or pouchitis, most likely both.

Wow, never up in the night and only 3-4x a day, that's amazing!!!

Maybe I have something going on. I usually get up once in the night and I go probably 6x during the day - when I pee. I don't really consider my situation to be a problem so I've never tried to minimize it. I guess if I worked long hours in an office I might take a tablet or two of immodium. I never have leaks or trouble emptying, no issues with gas... Not sure what we are looking for so far as symptoms.

Blksteeda,

Are you still taking lomotil & imodium?

Hey Blk Steeda and others taking Fluoroquinolones like Cipro or Levaquin or considering Cipro or any Fluoroquinolone if you have not yet started it. Cipro is from a class of drugs called Fluoroquinolones.

I know a lot about many pharmaceuticals and side effects etc., working as an activist. I'm up on the court cases etc. Fights in gov on many etc.

Flouroquinolones are unfortunately known for a condition called "getting floxed". The term "floxed" comes from the generic names of some of them that end in flox or ox. EG:> ciprofloxacin, levafloxacin and gatifloxacin.

The physical side effects this class of antibiotics cause are tyically irreversible. They can cause irreversible permanent excrutiatingly painful ongoing neurological symptoms through central nervous system PLUS irreversible tendon damage.

I've linked you a site that has Flouroquinolone Victims and their stories plus sites showing you lawsuits.

Though these specific antibiotic lawsuits are somewhat new, this fight to help the public against the side effects and to get it out to the public has been ongoing for a number of years. They finally have enough information and proof that ties the antibiotic to injury over a very long time, to actually start individual and class actions though it should NEVER have taken this long.

In the past keeping it hidden, docs keep prescribing, people keep getting injured. So it's all "just" coming out now though it's been happening since this class of antibiotics was manufactured.

Flouroquinolone Victims.

http://fqvictims.org/fqvictims/index.htm

With this next info link, they have generalized side effects from it. It is all much more painful than the words describe One of the most common is peripheral neuropathy and tendon damage. The nerve pain is so painful and ongoing a person is left debilitated and some do not make it. This is more specifically what they mean when they say a person gets floxed.

Excerpt from bottom link:

Excerpt:> Individual Nerve Damage Lawsuits
--Plaintiffs claim after they took one or more of these powerful antibiotics, they were left with debilitating nerve pain. Some patients took antibiotics for illnesses like simple sinus infections that could have been treated by other types of antibiotics.

https://www.drugwatch.com/cipro-levaquin-avelox/lawsuits/

More validation on the nerve damage. I've talked to a few people that have it and it's excrutiating painful. Their life is over. One man was a golfer, it separated both shoulder tendons from bone. He will never golf agains plus is in ongoing pain. He's in a class action suit. Another woman got hit with the painful neuropathy. If you read the Fluoroquinolone Victims website and read some of the stories, you'll see this is in fact very serious and life changing.

Many here with UC and Crohn's have enough going on with pain conditions to have to endure more.

http://www.forthepeople.com/class-action-lawyers/antibiotic-nerve-damage/


Last, someone that got the severe side effects from Cipro.

http://www.survivingcipro.com/about-cipro-2/lawsuits-and-the-fda/

** I don't post drug info to "scare" people. People have a "right to know" and our doctors don't. The public is not getting transparent informed consent. It's your right to know EXACTLY what you are getting prescribed.

Then you can choose and say "I've heard of too many side effects from Flouroquinolones 1 being Cipro and Levaquin and others from this class and would prefer a different class of antibiotics to avoid possible issues."

Some docs are aware of the Flouroquinolone side effects but ONLY the tendon damage which they play down. They are never told the whole truth on the drugs they prescribe.

Cipro Lawsuits:>

http://www.yourlawyer.com/topics/overview/cipro

Levaquin Lawsuit:>

https://www.schmidtandclark.com/levaquin

There are class actions as well. Google fluorquinolones, Cipro, Levaquin lawsuits etc. And remember, there are MANY DIFFERENT NAMES FOR FLUOROQUINOLONE ANTIBIOTICS and they ALL have the potential to give the same side effects. Research and find the names of all in the class, find a different antibiotic.

There are many antibiotics in different classes without this potential.

I hope you don't mind me posting this Blk Steeda.

ks1905 said...
Blksteeda,

Are you still taking lomotil & imodium?

I haven't taken it in the last couple days or so. Just emptied my pouch for the 4th time today. Still no gas pains/pressure. I got my VSL3 DS today, it cost me $35. I got the powder form and will start to take it near the end of my antibiotic course, maybe a couple days out.