will it ever get better

techwrenchMember

My pouch worked pretty well for 16 years,and for the last 5 months pouchitis has turned my work upside down.I usually suck it up,but recently just could not take it anymore.I believe this was brought on by major stress from work,mortgage,family relationship issues,and pouchitis.Even my EAP councilor said "wow',you got a lot going on"! I finally had to get on anti depressants for the first time in my life,because it's been that bad ! I could probably manage the other issues,were it not for the pouchitis. Pouchitis is in many ways like having colitis all over again. It threatens my ability to work should I lose my job,and all I do is lay around and try to sleep because of the depression, and the gas pains getting me up 4 or 5 times a night.I honestly think all the sleep deprivation has finally run me into the ground.I'm taking over $2000 a month in medicine and wonder what next ? The doctor says Imuran.I'm ready to bring out the "big guns",and hit it with Remicaid,or go back to a diverting ileostomy.....I just don't know any more.

7/13/141:59 PM

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Scott FMember

I'm sorry you're going through this. Pouchitis is *usually* pretty easy to treat. I suppose you've tried all of the usual antibiotics, including combinations (e.g. Cipro + Flagyl), right? It's also worth double-checking the diagnosis when the usual treatments fail.

7/13/144:38 PM

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techwrenchMember

We have,tried Cipro and flagyl.Now budesonide and xifaxin,along with cortizone supositories. I'm now getting treatment at the University of Colorado Hospital in Denver,and they have run all kinds of stool samples and blood work etc. and everything checks out.No c-diff. Same as back in March at my local clinic.Early August I'm going in for another scope to biopsy the cuff.I'm also wondering if the budesonide and cortizone (corticosteroids)are contributing some of my mood issues? I sometimes just start pouring sweat,and get hot flashes as well.

7/13/148:25 PM

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ktaMember

I got horrible hot flashes when I was on pred. Sweat would literally run down my face. It stained my pillows. So, that part of what you are experiencing would be from the cortisone.

I hope you get some relief from the pouchitis.

7/13/1411:26 PM

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LambiepieMember

Techwrench, there's a fine line between depression and anxiety. I would pore sweat with anxiety over my pouch, yet feel like I wanted to crawl under the covers (which sounds more like depression.) i literally could not catch my breath. Xanax helped. Sometimes staying away from Cipro for awhile and doing something else in the interim and then going back to Cipro can make Cipro work against pouchitis again. I used Cortifoam and rowasa enemas in the interim that helped some, but I just went back to Cipro yesterday and I got relief already even tho Cipro stopped working for me in the past. I feel for you and know what you're going through. The interim periods s*#k!

7/14/1412:12 PM

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AllyKatMember

I'm in the same boat

7/14/146:45 PM

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techwrenchMember

I haven't thought about trying cipro again, but it is interesting that it could work on a second attempt. Feeling a little better now after resting all weekend.

7/15/142:10 PM

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LambiepieMember

Glad you're feeling better! Really, as long as you do well on it, consider trying the Cipro again. I do well on it. Flagyl is another story....

7/15/142:32 PM

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AllyKatMember

Xifaxan worked, then failed, a few times. I recently went back on after getting a massive yeast infection on augmentum and now its working again. So fustrating.

7/17/148:50 PM

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Rebe0505Member

i am on the same roller coaster..like i have said before our pouches are like moving targets i think..your good,your not good,something works it stops working,then it works again..it seems hopeless,then a ray of hope...some of us get some real good years at first and then they join those of us who have always been on roller coaster...i can`t figure it out but i am in good company neither do the best drs on subject..

had a few good day, on antibiotic second week today in bathroom since 7a.m first thought oh i ate this or that..but got my c-diff kit this afternoon ready to take test and so it goes...

7/17/149:01 PM

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Rebe0505Member

forgot to say i think its good you are taking something for your depression/axiety that is a positive step in doing what you can to help yourself to cope...this stuff we deal with on daily basis is not for the faint of heart..other suggestion to keep us going is sleep and rest..liquids and some food if possible.the lack of any of those puts more stress on our minds..no apologies necessary

7/17/149:08 PM

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Scott FMember

Cipro alone stopped working for me after a couple of years. Flagyl had failed when I tried it. Most recently I had the idea of Cipro and Flagyl together. For now, at least, that's working brilliantly.

Shen does write about combining antibiotics when pouchitis becomes difficult to treat.

7/17/1411:20 PM

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albertagirlMember

I was being treated for pouchitis for nearly two years. Turns out it wasn't pouchitis, it was Crohns. Although I had been diagnosed for years with UC. Ulcerations were now in the pouch. I was given remicade and I felt better almost immediately.

Good luck!

7/18/1410:09 AM

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techwrenchMember

Thanks for all the reply's! I started a new probiotic 6 days ago.I'm going to bathroom less frequently,and passing less water and seldom see blood now.The anti-depressants have taken the edge off, and I feel more at ease now.
When I was scoped back in March,the Dr. said he didn't see any Crohns.I go back on August 7th for another scope,so we'll see.

7/18/1411:51 AM

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