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Pouchitis makes me grouchy!

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Posted 11/4/2012 8:01 AM (GMT 0)
I have been so happy with the j-pouch but I developed pouchitis. The antibiotic, flagyl, does not seem to be working. My symptoms are exactly the same now as ulcerative colitis. I just keep getting weaker and weaker.

If anyone has success stories about treating pouchitis, I would love to read them.
Posted 11/4/2012 11:52 AM (GMT 0)
Lots of heartfelt empathetic grumpiness from me plus explative deletives.
I hope it clears up before you have to do another round of antibiotics, but if you do maybe switch to ciprofloxicin. It is one of the first-choice treatments for pouchities, has helped me in the past with other things with absolutely no side effects, no antibiotic funkiness. I took it the week before my collectomy when I still had to do things like job interviews, because of its anti-diarheareal effects. I have also taken it after my jpouch op, when I had a UTI from having to have been cathetered twice.
I've accepted the possibility of occasional pouchitis as part of the jpouch bargain and so far I've been lucky and not had it. From what I've read here and elsewhere, it's like having to go through a flu and then you're fine again. And I've read lots of success stories in the sense that people mentioned having had pouchitis -- in the past.
My best wishes that you feel better very soon.
Posted 11/4/2012 5:19 PM (GMT 0)
Thank you. I am going to ask for Cipro Monday. The surgeon said he felt Flagyl was more effective but the side effects are too much for much me. Headaches 24/7. Cramping, bleeding and diarrhea have not improved.
Posted 11/4/2012 5:53 PM (GMT 0)
Ask for the liquid form. I assume you can get it in the states. You mix the powder from one little container with the liquid in a little bottle and shake. Does not taste bad and I think it works better than the tablets.
Posted 11/4/2012 7:53 PM (GMT 0)
I could not get the liquid form but the surgeon did call in prescriptions for Cipro and VSL #3. I have had to triple the painkiller dose. I had no idea this could become so painful so quickly. Hopefully, the Cipro will work fast. I am planning on scuba diving with all of my four siblings on Friday in Florida. My niece is getting married on Sunday. We will also be doing the usual stuff: making a wedding quilt from fabric donated by friends and family (it takes about four hours and many Spanish coffees), hosting a bridal shower, rehearsal dinner, etc. I still have a lot of work to do but I am in bed due to the pain.
Have you found a Siberian? I met a rescued one last week. She is a beautiful approximately one-year-old brown and white with blue eyes. Zoey has been having a great time playing with her. Zoey and my other dog, Loki, will be on tv Nov. 8 in a local pbs show called Oregon Field Guide. You might be able to find it on the internet. The show is really about my husband's books and his obsession with hiking but Loki loves cameras and is allegedly featured in almost every shot. He was also on practically every other page in Jim's first book. Zoey does not like cameras so she is rarely seen on film. Jim is originally from Munich.
The oxycodone is starting to work. It was tough today. There were times I just wanted to cry from the pain. I am glad my surgeon responds fast and really seems to care. My GI's were the opposite.
Just an interesting FYI, the surgeon said I was drinking too much water and needed more sodium so now I have to drink chicken broth a couple of times a day.

Post Edited (Subzeromambo) : 11/4/2012 12:58:36 PM (GMT-7)

Posted 11/4/2012 9:08 PM (GMT 0)
I'm sorry you're in so much pain and hope the oxy will at least let you sleep and maybe get on with all activity in the morning.
I found an org about 2 hours north of Berlin that rescues huskies and malamutes who have been abandoned or given up by people for whom the fashion aspect wore off (apparently this happens quite often). There is a 1,5 year old named Mali (dark grey/white and blue eyes) who is described as sweet with very good social habits. The fact remains that I live alone, and I have to remember an entire week of being layed out with full bronchitis this past September, barely able to go down to the kitchen to make tea. There was no way I could have gotten Mali out even  for 5 minutes, let alone to the park for at least an hour of romping. I'm going to put the project on hold and maybe I'll have a partner soon.
They probably won't have the video on the internet until after it's broadcast, maybe you could post a little reminder then?

Post Edited (B'Dereh) : 11/4/2012 2:13:20 PM (GMT-7)

Posted 11/5/2012 5:50 PM (GMT 0)
Subzero, are you feeling better today?
Posted 11/5/2012 10:02 PM (GMT 0)
Really sorry to hear this... Has the cipro helped at all? Can't offer much advice but just wanted to say I'm thinking of you and hope you get some relief. X
Posted 11/6/2012 1:59 AM (GMT 0)
Thank you both for your queries. The surgeon is having me take both Cipro and Flagyl although the Flagyl makes me very dizzy and nauseous. I am stuck in bed again because of the side effects and the pain. There have not been any improvements. The surgeon keeps having his staff check in on me. It makes me feel nervous. If it is just pouchitis, why is he so worried?
Of course, I am also worried about not being able to go work tomorrow, training for the half marathon has completely stopped and I still have to fly to Florida on Thursday. Do you think it is safe to train on oxycodone? Maybe if I just use a treadmill so I can grab hold of something if I get dizzy?
Please remind me that this is temporary and I will get my life back. I am trying hard not to have either a pity party or a frustrated temper tantrum. Everything was going so well before this.
Posted 11/6/2012 5:13 PM (GMT 0)
If it was anything else besides pouchitis, he would have said so. The antibiotics are not working as quickly as they normally do, that is why they keep checking. I have not had pouchitis but when I took cipro for something else it was clearing up after two days.
Try to stop worrying about going back to work tomorrow. You have pouchitis and you need to rest and treat yourself like a sick person so that you can get better. Of course it is temporary and super frustrating. I don't want to say this but I get the impression that you may not be up and at it by tomorrow. I do not think it is safe to train at all right now and you need to concentrate on getting better which means staying in bed and distracting yourself with books and movies. But I'd say we're allowed tantrums so call someone close who will understand. Do it from bed. That is, no shoes on and under the covers, where you belong until you start feeling better.
Posted 11/6/2012 5:15 PM (GMT 0)
Oh and it's election night. There is a party down the street from me hosted by American Democrats Abroad going all night until the end. I feel like I should go later but I have to admit I do not enjoy the kinds of conversations that take place at these kinds of events.
Posted 3/19/2014 12:03 AM (GMT 0)
Sorry to hear so many people having pouchitis problems. I was diagnsosed with UC when I was about 16 (I'm now 63). The only period of remission I had was an eight year period in my 20s when I smoked marijuana. It worked wonders! I stopped using it when I decided to return to college to get my Ph.D. The UC immediately returned in grad school, and I eventually had a complete colectomy and a Koch Pouch (the predecessor to the J Pouch). I had my option for either one, but chose the Koch Pouch. Because of the construction, I'm able to irrigate the pouch each time, which I think keeps things pretty clean. In the 26 years I've had the pouch, it has worked amazingly well about 90% of the time. I have had short periods of pouchitis occasionally which have been well-controlled with Cipro and probiotics. I exercise regularly with a trainer at the gym and have learned that any "crunching" exercise (e.g., sit-ups) will activate the pouchitis. Thus, I have to be careful. Hopefully, you all will find an answer. I think it's probably different for each person. When I retire (in less than a year), I fully plan to use medical marijuana. I suggest people give it a shot.

Post Edited (indialogue) : 3/18/2014 6:08:38 PM (GMT-6)

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