Frustrated and feeling defeated

There is a decent chance that it's just a bug, though a week is starting to be long for a garden-variety virus. You might have salmonella or shigella, bacterial GI infections, or Giardiasis, or even C. diff. Extreme pain doesn't have anything to do with diagnosing pouchitis, but even if it did the next step is ruling out (or in) infections. Even doctors who know little to nothing about pouchitis can usually order the right tests for GI infections. Do make sure that the C. diff test is a "PCR" test, since the other ones tend to give false negative results. 

It's critical that you stay hydrated through this. Make sure you're peeing light-colored urine a few times daily. Good luck!

Hi goofeegutz,

Well, they could be right, it is the right season...But that doesn't mean that you are wrong either...Both share a lot of symptoms...diarrhea, dehydration, cramping, headaches, nausea...do not discount the possibility...Deal with it "as if" if were a nasty bug...Stay hydrated with not just water but hot tea with honey and if you can tolerate it, a squirt of lemon...bouillion from cubes full of sodium to keep your mineral salts up, white rice made with tons of water then drink the leftover water (it is full of thickening starches that will help you to thicken your output), slightly burnt toast (the charcoal in the burnt toast also absorbs the extra water running through your body and is supposed to help with the bacteria...if you don't like the taste they sell charcoal tablets at the drug store).

Antispasmotics help with the cramping and pain. My go-to nonprescription medication is Gravol (a motion sickness medication) that seems to slow down my whole system in case of gastro..it also makes me very sleepy so it helps me to get my rest.

That's all I've got...it should hold you until your doctor gets back.

If you spike a fever, start uncontrollably vomiting, get very dizzy or have sharp pain etc...do not hesitate to head back to ER.

Sharon

I've had non stop diarrhea ever since 1988, the day of my surgery.  I'm at the point now where I'm looking forward to death.   There's really no options left, no way do I want to exist with a colostomy.  Long ago before my colitis days, I never had any clue that life could actually become this miserable. 

Good dawg,

How about a k pouch instead of death? Not being cynical or ironic here...I understand the horrors of malfunctioning pouches, pain, incontinence and constant leakage and accidents...a k pouch is still another surgery but such a positive step towards healing as opposed to giving up on life.

Sharon

Thank you @Scott F and @skn69 for the tips. I am doing stool tests to be turned in today, just have to figure out how to get it to the lab since I feel so weak to drive! Lol but it will be a relief to know what's going on and start treating it. @Former Member I'm so sorry to hear this. So it sounds like you still have some of your colon left? I know the bags aren't for everyone, I myself had a difficult adjustment with my temp ileo, but if it could give you a better quality of life it might be worth it. I will keep you in my prayers! 

No thanks Sharon, the K Pouch is something I wrote off long ago the first day I heard about it.    There's only one alternative and it's impossible to do colon transplants now.   

An end ileo is better than death.  Which is the way I was headed. 

And having an appliance (bag) is not the end of the world. 

I am living proof.  It works and I adjusted quickly.  Dreaded it like anyone would.  But now.  It's just a pain in the ass to empty all the time.  Lol.  I figure if I can do it anyone can.  I do mean that.  

Richard. 

Good Dawg, what does your doctor say about your ongoing diarrhea?  Have you had some moments of good function since 1988?  What do you eat? 

I haven't mentioned the diarrhea problem to my doctor in a long time.   The closest I ever came to defeating it was by trying some Metamucil.   That was still far from perfect.    I have not had one case of solid stool since 1988 or the first day of my J Pouch.   All I can do  is grin and bear it.   Tonight I had a bowl of brown rice.  It's less harmless than other foods I can think of but I still wind up with diarrhea.  I hope the rice gives me some energy too since I'm iron deficient too now.     

No thanks Richard the 3 months I had between surgeries of living with a bag was all the experience I need with a bag.   I couldn't stand living like that. 

I also had a temporary.   It did suck.  And my only option was an end.  I had to do it. My pouch was worse than the UC I had previously.    I was dying slowly and I couldn't put  that on the people I loved and loved me.  

I dreaded  it.  Serious.  I thought my life was over.  Most times I forget I even have it.   I sure as hell don't miss the other end.   I hope you find an answer.  I too had the same food problem.   No matter what I ate it was like liquid rocket fuel lit up coming out.  Always. 

Good luck.  Don't give up. 

Richard. 

I understand your problems Richard.    The best way to sum up my pouch is by calling it a very miserable existence.   Socially along with everything else it's ruined my life.   That's not to say my life was terrific with ulcerative colitis.   I'm deadset against a bag though and nobody can change my mind, same goes with a k pouch too.   I want to find a more natural way out of this. 

I understand. 

I went through it because my last question to myself was my age. 

How long would I have to live with it.  Serious.  Age is a huge factor.  I'm 60. So.  It's not like I'm looking for love or have a super social life.   If I were younger.  Sure.  I would look for another way.   So age does come into the decision making.  I have 20 years to live with it.  If I'm lucky!   My wife is happy.  I'm happy.  Kids have forgotten I even have it.  Only been a year.  But.  All that is in the past. 

Again.  I wish you the best and I hope you can find a way out.   Not too many options.   

Richard. 

Good Dawg, 

You are long past "natural" solutions. Life lesson: Once you're missing a major organ and living a medically-assisted life (like with a j pouch) diet can help, sure, but most of your serious options to problems are also going to be medically assisted (like medications, revisions, end ileo w bag, or k and tube.)

If you insist on not getting help and not considering other options then you're giving up on yourself... you're actually choosing to accept misery and/or death. That just doesn't make any sense.

I've been where you're at, many others on this forum have too. We are real people with real problems, just like you. And like us, you can come out of this healthier and happier. Every life matters and every one of us has to chose to live! For love, family, God, destiny, whatever -- there are so many reasons, just pick one!

Sometimes this gets really hard and yes, suffering is difficult. But sometimes you have to learn to ask for and accept help. There's more than a couple of us on this pebble for a reason :-)

Please get in to see a professional counsilor/therapist and maybe consider asking them or your doc about antidepressants. Please find and talk to a pouch-knowledgeable GI doc about your options. And please seriously reconsider eliminating every option that will help you both survive and thrive.

Jen

Good Dawg, how are you today? What did you eat today, and are you able to hold it? If you are not getting or retaining your nutrients, are you taking a multi-vitamin?

An update in case anyone was interested. Got scheduled for an urgent scope today and it looks like my j pouch was indeed inflamed. Got a 2 week course of flagyl. All my stool tests were negative for bacteria. My GI also mentioned Crohns which I pray,pray,pray it's not but have to wait for biopsy results. 

Hello, Goofeegutz.

That's great you got in to be tested and scoped so quickly. I hope you get relief with Flagyl. When I had to take Flagyl my doctor told me to take Florastor probiotic to restore the good bacteria killed off by Flagyl. Any probiotic containing S. Boulardi will be helpful. I hope you feel better by tomorrow.

S. Boulardi is most helpful as a supplement to Cipro or Levaquin. It is intended to help prevent C. diff. Flagyl is used to treat C. diff, though often without success.

Hello, Scott. Of course! I got it mixed up -- Flagyl, Cipro and what s. Boulardi is is meant for! 

Yes, Goofeegutz, sorry to hear you are having so much trouble so early on.  Fingers crossed that this works for you and you get back on track.  

Goofeegutz,

Good to hear you got an answer and some appropriate medication! Will also say a prayer it's just pouchitis and nothing more serious. I had it a lot before I went from the j pouch to the k pouch and ended up on Cipro because flagyl didn't work. So don't lose hope if you don't see improvement -- you might need to try a different med. (I think I've heard others also mention using Xifaxan.)

Also, don't know where your diet is right now, but suffice to say that you might want to dial back on the acidic, sugary and difficult to digest foods -- try to keep it a little simpler until you're feeling better.

Blessings,

Jen