doctor called

Tom -
I have been going through the same thing since my takedown 4/30/2012. I have been active just like the UC. Still fighting the fight! Definitely see your GI doctor that is what I did. She found I was still diseased in the anus (cuffitis). Have been on suppositories to try and heal that area. I personally have been doctoring myself w/suppositories. When I am really bad and uncomfortable I use them and then try every other day. It really isn't a cure! Not sure what is in store when I go back and see Surgeon and GI doctors in Jan. My GI also put me on an antispasmodic drug (works sometimes) but again, I am not faithful in taking them. I thought w/this j pouch we would be able to get off all these meds. So far, it hasn't happened for me! Wish I could have the cure for all of us!

Roberta

is giving up on hc suppositories after 8 days the norm? could last nights swelling have been food irritation and not cuffitis inflammation? this is just so confusing...

have they tried giving you cipro? It will calm things down and give your rear end a rest.

cipro for cuffitis? also, could the ensure i added yesterday have caused diarrhea inflammation instead of it being hc supp failure? the hc seemed to have minimized my pain but in one week on it ive been able to eat nothing but babyfood rice and rice crackers. not sure if i can call that hc supp success...

I don't know if cipro helps this or not, maybe worth finding out if only to give you some relief for a period of time. Seems to be the miracle pill for some of us j-pouchers.

Sorry that you are going through this despite getting a j-pouch! I don't know if 8 days are enough to expect a huge change but if the suppositories were helping I'd stick with them. Also, I don't have a j-pouch yet but have active UC and whenever I have tried Ensure my symptoms seems to have gotten worse immediately. It is a miracle food for a lot of people but I can't seem to tolerate it at all. My stomach starts grumbling, I get cramps and the trips to the bathroom increase. I guess it's the sugar in it that I can't tolerate. It's loaded with sugar and is highly processsed. Hope you feel better, Tom!

so do i follow docs suggestions and stop the hc supps? i have a call into doc again to ask about cipro. i have a few days worth here. i was told to get this surgery and id be having Christmas dinner with my family by now. i now have so many limitations i didnt have with colitis and it looks like ill be on more medications as well. i controlled my colitis with spinach and rice but was told i cant go on like that and this surgery would let me eat nutritious foods again. i was also told not to fear cuffitis and that its easily managed just a week or so ago on here. why am i so different than you guys. i am so sad and frustrated to find out i have colitis again/still. this isnt living its slowly dying. again, should i listen to doc and quit hc supp after 8 days if last night was hell? someone please read this whole string and advise as best you can so im ready for my doc to call back...

Tell the doctor that you want to try the suppositories for more time. I have been on HC enemas for more than a year and my doctor doesn't mind me being on them for so long as I feel they help me.

a year?! dont you dread using them? i thought life was going to be worth living after this. i know some fail but never thought id be one and still dont want to believe it. i do have some good days as long as im eating rice with nothing added. that is not success. im nutritionally starving. im so sick of pissing and moaning on here and to family. i thought this surgery would bring me a little dignity but i guess that is too much to ask for and im a bit disappointing in my docs asst giving up on me so easy...

and what about cipro? any think its a good idea to add to hc supps?

Not the most fun thing to do every night before going to bed. But, you got to do what you got to do....

dont you fear things will be the same as now or worse if you go through the surgery? i wish i had a do over at this point. i may feel different down the road but i am so much worse than when i had colitis. i never expected such a brutal recovery and my hope is so low from be told i still have colitis. i think its hard to explain cause so many say "tom you have to relax and give it time" the problem is none of you are in my body. you may have gone through this but we are all different and my body is saying something is very wrong. i was told by my surgeon to relax stop being afraid and eat what i want and just deal with the discomfort it brings or ill never train my pouch and that my colitis is somewhere in a lab in cc florida then a week later tells me i have colitis. the common phrase at cc florida was thomas, you WILL feel better. i heard it on a daily basis. not you might or you could but you WILL...

I am nervous and have doubts at times but I am hopeful things will better after surgery. If they aren't, I'll deal with them when I get there. If things are so bad for you why don't you get rid of the pouch and get a permanent ostomy?

because its only 3 months old.

ok guys! here it is and im not crazy. doc just called back apologizing saying pathology did show mild pouchiltis and i should in fact start cipro right away. first i have a fresh batch here at 500mgs. do i do one a day or 2 a day because i forgot to ask doc how hes prescribing it and second my symptoms have been like this from day one so if ive had pouchitis from the start is it more likely to be chronic or no. do i have a shot at clearing both the cuffitis and pouchitis up and having a great pouch? also, could pouchitis cause cuffitis either directly or indirectly from straining etc?

I am prescribed 2 a day. I'm glad they confirmed your feelings. I think if you are not feeling right than something is wrong. We know more about our bodies than the doctors do. I have lived in my body longer than my doc. has been hired to help me.

Hi Tom
Don't know if you remember, but on another thread I said I was experiencing similar symptoms to you but just assumed it was my new way of going. Anyway, after that I deceided to email my Gastroenterologist who prescribed me Cypro and within about 12 hours there was a huge improvement. Now stuck in bed with a partial blockage again feeling so sick......if it is not one thing it is another. Keep you chin up and hope the cipro brings you some improvement too. Caroline

im sorry kiwi. hope you feel better soon. can cipro cause yeast problems? whats protocol for probiotics and or boulardii yeast?

I'm on day 6 and have had no thrush or anything. I have had problems with other antibiotics in the past but Cipro seems OK for me. Don't know anything about probotics I'm afraid.

hi tom take the cipro 2 500 mg a day..

3 months is not a long time..i had my pouchitis from beginning it seems..and cuffitis ..treated the pouchitis after a while cuffitis just faded away..it can ..i was bumped too to find out i had colitus in the cuff..but her i am 6 years down the road..i had a terrible 1 and 1/2 first years because surgeon put me on suppositories,off supositories on cipro ,off cipro...i took vicodin to get by every day..lomitol and was about 12 pds lighter ..

but heres what i recommend..take cipro see if that works..if it does great..maybe continue with suppositories..next i would see someone for your state of mind..you sound besides yourself and maybe overwhelmed..maybe taking something for anxiety would help everything..i did and still do take something...this is a tough operation and some of us have more trouble than others with it..take it a day at a time maybe taking something for anxiety and some therapy to deal with your difficult situation will be beneficial..

after that year and a half i became more proactive and just had to use trial and error to figure out what works for me..not great but it brought me to a place that has given me a life back..and you will get there too..try not to think about the what ifs that is not productive therapy and drug to relax might be the key there..just remember you are not alone and there are many of us out there who did not have it go the way we or drs thought..

rebe

tom one other thing.go one step at a time otherwise you will not know what is helping or not..

probiotics will not cure pouchitis but is taken by a lot of us if we are on antibiotics especially long term...i had been disgnosed with antibiotic pouchitis for years..i eventually rotated antibiotics to stay functioning..as i said the cuffitis just went away..i am know diagnosed by dr. shen at ohio cleveland clinic(he is the kng of jpouches,and is referred to by many on site)with bacterial overgrowth instead..no matter because it is not treated differently i still take antibiotics...i never had yeast problem but we are all different..i did have a few bouts of c-diff..iit was at that time i started culturelle and s boulardi,to avoid getting c-diff again and have since added align..these are all good bacteria..no harm taking them but no guarantees either it does anything special..(thus been on probiotics plus my antibiotics for 3 years plus..

rebe

sorry tom ..i was diagonosed as chronic antibiotic dependent pouchitis not as i stated it in thread before this..

rebe

what can one do to avoid antibiotic dependent pouchitis? i had c-diff years ago. any way to avoid that as well?

also, if you have chronic antibiotic dependent pouchitis what is shens protocol for you and is there a point to probiotics and boulardii for you? finally, do i have to start avoiding certain foods before ive even had a chance to enjoy them? i just wanted to be as carefree about my digestive system as my surgeons eluded to prior to surgery...

could being dxd with pouchitis and cuffitis end up being acute still 3 months out? the word chronic really does something to my psyche...