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Hi everyone,

This is probably a repeat post that has been viewed by others in the past. I am now a year since takedown and virtually cannot function more than a few days max without antibiotics (augmentin to be precise--875 x 2 per day).

I am extremely discouraged as without the meds, I have incredible anal pain and irritation and pain emptying my pouch along with all the other symptoms that go with pouchitis and I have been fighting ongoing cuffitis as well with canasa really doing nothing. I find it so odd that when I am on the antibiotic, the cuffitis also subsides.

I cannot understand how I can falter without these meds to the point of requiring multiple passes each time I empty my pouch, extreme anal irritation and pain, diarrhea and just a total lousy feeling with constant muscle aches and pain since having this surgery.

I have tried diet changes, probiotics daily etc. to no avail. My recent scope shows chronic inflammation mostly in the distal pouch and at the anastomosis and cuffitis and my GI tells me I should not be concerned about losing my pouch as I am antibiotic responsive. He also has had me try and go without the antibiotics to get a two week clean up and I am never manage to get through a few days.

I am so uncomfortable about long term antibiotic use due to the breast cancer risk I have read about and the link to crohn's and colitis and fear I may eventually end up the the crohn's diagnosis after being on constant antibiotics.

Is my only next option to move to biologics or remove the pouch? Am I being delusional in thinking I may ever be able to function without antibiotics? Has anyone been on them long term and been able to successfully get off them and maintain a healthy pouch? My GI doc is now telling me he has patients that have been on them for even as low as four months and are no longer responding to them which is another concern I have.

I guess I am having a hard time coming to grips that I fall in the 10 /20 % range where my pouch is not working out like I thought it would and should I continue to be on the drug path and still suffer or bite the bullet and be done with this nightmare.

Replies sorted oldest to newest

EthumbEthumbMember
I am just tagging along to see what responses you get.

I also just finished up a course of Cipro/Flagyl (my 3rd or 4th round) one week ago and can't believe how night and day it is without antibiotics. I crapped myself five times yesterday and my guts were literally rolling around in my abdomen. I spent last night on the toilet.

I had my 1st surgery 1 year ago and my takedown 5 months ago. I remember walking around in my hospital room last year at this time thinking that I would be back to normal and thinking of ways to celebrate my one year anniversary. I did not picture the celebration involving my bathroom.

I have to start taking a new antibiotic because I believe the flagyl or cipro is causing some tingling in my hands and feet. I am miffed because I thought that I had begun to get this figured out and was really starting to feel good. I hope the new script (still waiting on the call back from the doc) works as good without the side effects as the Cipro/Flagyl.

Anyway, it kind of sounds like you are kicking around the idea of going back to the bag. I have come to the conclusion that I will gladly take that route if I can't find another antibiotic that works or cause side effects. I am not happy about taking antibiotics but, right now at least, I think it easier to take a few pills a day than the maintenance of the bag.

I have not heard that I could become antibiotic resistant in four months. I guess I assumed that if I rotated them then I would not make one ineffective.
Ethumb
AllyKatAllyKatMember
Yes, I was on and off antibiotics and UC meds. It's been for 8 years. After only 2 treatments with remicade, I had a bad reaction to it, I have been antibiotic free for 2 years now. I just take 3 canassa every night and lots of anti inflammatory vitamins. I also removd my cuff 8 years ago but as you can see I still suffer from pouchitis and a cuffitis without the cuff, go figure, with everything till can't get rid of this disease. Ps if you are afraid of cancer with antibiotics then biologics ay not be for you either. Would you consider first a rectal cuff stripping?
AllyKat
J jeaneMember
Allykat,

Thanks for the response. I have discussed pouch advancement surgery and mucosectomy with my surgeon. I have pouchitis in the distal portion of the pouch so I am not sure I would be a candidate for this or not.

I am guessing if you can get cancer from antibiotics, I am sure the biologics are not any better. It is odd though how the cancer risk for antibiotics appears to be of the breast and not lymphoma or hodgkins which are the cancer risks with biologics.
J
TE MarieTE MarieMember
Ethumb,

Have you been tested to see if you have a C-diff infection? Cipro is one of the antibiotics that can cause it but on the other hand flagyl is one of the antibiotics that they use to treat C-Diff. I had it and cuffitis at the same time and the symptoms are the same - just magnified when you have both.

kjeane,

I'm sorry you are still having all of these problems. It seems like you and I have been going through this not so fun trip together the last year.

Have you considered going to Mayo or the Cleveland Clinic? Of course I recommend Mayo as that's where I went for another opinion. I wouldn't give up on my pouch unless I got the opinion of a more specialized GI. My testing and appointments there for 3 days totaled over $9,000 before the insurance write downs and it was considered in-network. We also had a $400 hotel bill plus meals, although I didn't get to eat much as I had a CTscan and flex pouch scope.

I didn't try biologics and would go back to an ileo before I'd go one them. That's my opinion.

There was a discussion on here a while back about rotating antibiotics to deal with chronic pouchitis. Did you see that thread?

I'm taking an antispasmodic now to help with my pains as I was diagnosed with IPS too.

On top of all of this I thought I was having sinus headaches but they drainage is almost gone and the headaches are worse. I'm having cluster and/or migraine headaches.

I didn't know about the breast cancer risk from antibiotics. None of my blood female relatives have ever had it but my mother-in-law did. I know the longer you take antibiotics you become resistant to them and need stronger ones. This is a major health problem of my father's.
TE Marie
KarbearKarbearMember
I've been on antibiotics or some form of pouch medicine almost since day 1. My doctor decided to try Entocort to get me off the antibiotics. The Entocort did great for my pouchitis, but I developed 2 abscesses while on it. So I stopped the Entocort and started back on Cipro. Now I'm in the midst of trying to figure out the cause of the abscesses.

I'm with Toughenough. I wouldn't go back to the bag unless I saw one of the top centers for the j-pouch. Every doctor appointment gets me one step closer to visiting the Cleveland Clinic, but I have a lot of faith in my doctors in Philadelphia as we have a lot of great GI doctors here as well.

Another point. I would rather stay on long term antibiotics than go back on the biologics as long as the antibiotics keep working. My next long-term solution to ask it to go back on Entocort or try Canasa or something along that line of defense.
Karbear
J jeaneMember
KarBar,

Did your GI tell you the abscesses may be a result of the entocort? Since I have never had one, were they internal or near the rectal area and how did you resolve them (if you have)? Also, how did they determine you had an abscess?

My gi recently prescribed xifaxin as the side effects are less and this antibiotic is less likely to cause bacterial resistance. The killer is insurance does not cover it so I am fighting that currently as it is about 300 a month oop if not covered.

I too would rather be on antibiotics than biologics but I do feel I have a shelf life with this pouch and the antibiotic route will eventually expire.
J
KarbearKarbearMember
My GI believes the abscesses are the result of a fistula and not the Entocort. It only popped up when I was on Entocort because the prior antibiotics were killing anything before it had a chance to abscess.

According to my GI the abscesses are behind my pouch. Since I've only had belly pain and no back pain, I'm not really sure were they are. They are both internal and I was treated with antibiotics once again. I'm not sure if the antibiotics completely get rid of them or if it just reduces them to a more manageable level. I was given a MRI to look for a fistula when the abscesses were found.

I'm still dealing with this, so it is still new to me. I just saw my surgeon who couldn't find a fistula either. My next stop in the Gyn to see if something is up with the lady parts. I have a follow-up with my surgeon in a month to see how things go while on the Cipro once again.

I understand it's a headache. I'm still always at the doctor. I've had 4 scopes since takedown and 3 in less than 1 year. My biggest concern with antibiotics is C-diff since I had it once before. So far, so good though.
Karbear
R Rebe0505Member
i am a rotating antibiotic user female with chronic pouchitis..doing it for three years and as of late i had started augmentin and i have not needed to switch for 5 months now!i am planning to stay on it as long as it lets me!this is a new development for me because i had to keep switching as the 4 i rotated became uneffective..however i should mention after a period of time after being off one antibiotic it worked again..

my doctor is in cleveland clinic dr. shen and he has never mentioned antibiotics can cause breast cancer..where did you get that from?

rebe
R
R Rebe0505Member
forgot to mention i have had c-diff a few times once with colitus and once with jpouch..was given a remedy antibiotic and i was fine however to avoid it in future i take florestoor which is sacharomyces boulardi recommended for reoccurrance of c-diff and culturelle..so far so good two years without c-diff issues ..so i think you can put aside worries of c-diff.

rebe
R
P peewee80Member
Hi Kjeane,
When I read your story I thought I was reading mine. I had my jpouch surgery in 2006 and have been on antiobiotics ever since. My GI changes me up every now and then but nothing seems to help the little bit that Cipro does. I keep getting closer to going back to the bag but the GI wants me to hold off as long as its working some. Its hard!! All the symtems you described is me. Almost like I still have UC just no blood. I wish you lots of luck and maybe we can keep our heads up. Probably the only thing that holds me back is the fact my surgery was a very sick time for me and I hate going back through any of it. Good Luck and I hope you get some relief.
P
TE MarieTE MarieMember
Rebe0505,
Is the florestoor/sacharomyces/curelle a probiotic? It sounds like it might be.

I have been taking VSL#3DS and got C-diff along with my cuffitis and had not been taking an antibiotic that causes it. (I had taken a course of flagyl. just in case I had pouchitis, before my first scope.) It took 2 rounds of flagyl to get rid of the C-Diff.

I think my immune system is in such a flux the C-diff just decided to take advantage of the opportunity to strike again! I had it before the surgeries too. Thanks

kjeane,
I hope you are feeling better.
TE Marie
R Rebe0505Member
the two things i mentioned are specific to c-diff..the florestor s.bulgarii is not a probiotic and the culturelle is a probiotic but it is only lactobasii gg(spelling) the only one that had some benefit to prevent c-diff in combination with s bulgarri(florestor).anything else vsl or whatever are not the remedy as i found on internet when researching my c-diff..there is actually a community of folks with serious reoccuring c-diff lol..and this was found by me on various occasions to be the go to for prevention..so if you get them remember the dosage i said..4 of the s,bulgari(twice a day) 2 of culturelle(one twice a day..

rebe
R
R Rebe0505Member
tough enough..two things..

one you might have c-diff and i is not unusual for it to reoccur in the month because a spor might not have been killed off..reason dr. shen insists upon a second test follow up..

point two once you have c-diff you are more inclined to be victum of it again..thus that is reason i decided to go and take the only remedy for prevention i found ..s. bulgardii and lactobasillius gg..found in florestor and culturelle only..

rebe
R
L liz11Member
kjeane- I too have never heard of the connection between antibiotics and breast cancer. However, there sure are a lot of other reasons to not be on antibiotics indefinitely. If you are concerned about those, then I couldn't imagine you moving to biologics. Also, I don't think doctors usually move you to biologics unless you have antibiotic resistant pouchitis, which it seems you don't have.

So... your choices seem fairly clear. Stick with your antibiotic regimine and don't worry about long term consequences. Go for a second opinion with the world's pouch guru, Dr. Shen. Or get rid of the pouch, because you don't want long term dependency on medications. There is a member on here, who recently made the later decision, simply for the fact that he didn't want to continue to destroy his body with antibiotics. I believe he had his pouch removed end of last year. Personally, I chose pouch removal verse a pouch redo after I had antibiotic resistance pouchitis due to functional pouch problems. I couldn't imagine getting a pouch rebuilt only to be stuck with pouchitis, pain, and not being able to get off the drug train.

also usually if your doctor writes a letter for a drug need after you get turned down, your insurance will probably cover it. Thats how I got my rifaximin paid for.
L
J jeaneMember
Thank you everyone for your posts. My GI is writing me a letter to hopefully get xifaxin covered. My insurance company is tough as my insurance is through my husband's employer and it took me quite awhile to get VSL3DS covered. I am on day four of xifaxin and not sure if it is really helping a lot or not. I still have chronic stomach pain and the annoying butt burn that canasa seems to do virtually nothing for.

Below are a few links on the risk of antibiotic use and breast cancer FYI. They are from 2004, but nonetheless this information concerns me for those of us who are female and on long term antibiotics for chronic pouchitis.


http://www.nytimes.com/2004/02/17/health/17CANC.html

http://articles.baltimoresun.c...ancer-risk-of-breast

http://www.sfgate.com/health/a...t-cancer-2794769.php

http://www.cancer.gov/newscent...s/2004/antibioticsQA


This one discusses the link between antibiotic use and crohn's and colitis:

http://elbiruniblogspotcom.blo...-tied-to-crohns.html
J
TE MarieTE MarieMember
Rebe0505,

I know I'm prone to C-diff because I had it a couple of times before my surgeries. It was just off of my radar as I thought all of my problems were cuffitis related. My surgeon took no biopsies or stool samples during the scope he did and treated what he saw, cuffitis for only 2 weeks.

Maybe I didn't have the C-diff then but I think I did. It's hard to tell without the stool test as C-diff and cuffitis's symptoms are so similar. It's like cuffitis on steroids to have them at the same time! You can have a fever with C-diff and it can escalate to horrible, like the people who have it chronically. If you are hospitalized with it they consider it the same as MRSA - contagious, and have to wear those hasmat suits. Well not hasmat but you know what I mean Wink

Thanks for posting your combination,I need to take it to the health food/supplement store.

I'm with kjeane about chronic antibiotic use but think I'd keep using them if doing so made me feel some where close to normal. I have not reached that point yet and have not even had pouchitis. Confused

My father has had to take daily antibiotics for years and it is getting to where it's hard to find one for him to take that will work. He has built up tolerances. He doesn't have IBD and is elderly - there is no alternative for him.

Biologics really scare me. If I had crohn's there wouldn't be a choice - I'd take them. It is never good when you have to choose between less than desirable alternatives. I'd rather choose between good alternatives - but we have to play the hand we've been dealt. Frowner

How are you feeling kjeane?
TE Marie

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