Sorry i diD not read ever other thread before i posted about this new find entyvio..but it seems you are all way ahed of me.

Throwing out this question for all my long term pochitis co sufferers.

At present (ABOUT 2 YEARS OR SO NOW) my rotating 4 antibiotics has worked and given me a life again..Igo 30 days on each antibiotic and just switch at that point.Doing this i seem to avoid any major pain and discomfort.It almost makes me feel normal again. BUT MY ENT  doctor is very concerned about me for future .He says in his experience people on continual antibiotics will run into serious situations in future.

So my question to you if you were me would you stick to what i am doing and enjoy the good days or try to switch and try entyvio.I have no side effects from antibiotics i am taking that i know of but i am in my 70`s ( a young 70 lol)and i think i might hit that wall with say a sinusitis  issue which i am prone to or some other bacterial infection that will resist treatment.

 

I am really torn as to what to do...Mind you i have no idea if vytyvio will even work or as well.Right now i have sinusitis and ent doctor gave me something to put in nose and we are hoping its viral not a bacteria i am resisting..because i am using the drugs like levequin,augmented.Thats what brought this to the forefront for me..

 

thanks for any feedback..

 

rebe

 

Original Post

My choice is to stay on the antibiotics for as long as they work, and hold biologics in reserve for if/when antibiotics fail me. Your rotation schedule will help reduce the development of any resistant bugs. I’ve had a couple of sinus infections over the years, and they’ve been treated with a completely different antibiotic with good results. It’s possible that your ENT is mixing together his concern about you with a public health concern about antibiotic resistant organisms. There’s a decent chance he’s never actually had a patient on continuous antibiotics before, and I wonder if his “experience” could be more of an expression of that public health concern. Perhaps he can point you to a real study that showed a problem?I’ve never seen one.

What does your gastroenterologist think?

 

Thank you Scott i appreciate your responding .And actually although pretty bummed about it i was leaning to your conclusion.Right now is the longest and best i have been for a solid 2 years and its been consistent which is a big part of being able to function.I have absolutely no idea why for past two years its been stable because as we all know there never seems to be a reason.I am too afraid to mess up a good thing right now so i am going to continue my rotating.

I have not been on line for awhile took a break since it was jpouch world for me since 04..But i recognize many of the folks and glad to see we are all still here and with our pouches and fighting  the good fight! 

Scott i have not talked to the G.i i am due for a visit..Iuse someone in L.A now dr. Melmed(l.a)..but dr. Shen  (cleveland clinic)was my doctor since 06.I can still write him and that is how i heard about the biologic.Iwill have to ask dr. Melmed when i see him.But unless he could say its a slam dunk which we know is never the case i am going to continuing rotating may 4 antibiotics.thanks again...

Rotating antibiotics for 2+ years led to c-diff and a bacterial transplant to replace all the bad bacteria that had been created as a result of all the antibiotics (even though I was taking probiotics) now my doctor is putting my on entyvio since it’s that or steroids- which are not good long term.

good grief POPPALEE that is awful. Sounds like  you had  an extreme case of c-diff usually upon finding c-diff you are given a drug (actually an antibiotic) which i assume you had and it did not work??? Was it not discovered quickly?What exactly happened to you?

We are all so genetically different that is always amazing to hear such extreme story.Every time i had C-DIFF I CAUGHT IT SOON and was able to arrest it resuming antibiotics again.I think i had it three times .Once with colitis and twice with pouch.I consider myself lucky at this point as far as usage of antibiotics.But its always a risk because we all react differently.

If you care to explain what happened would be informative..What is a bacterial transplant?

I will say i learned if you are on antibiotics continually any time things go south test for c- diff immediately.Its no joke.

 

IN ANY CASE BEST OF LUCK WITH entyvio..

 

 

I did take antibiotics for the c/diff but i had a reoccurrence and took antibiotics again / the bacterial (fecal) transplant involves putting good bacteria taken from other people and after being properly vetted it is placed into the digestive system either during an endoscopy or pouchoscopy - it is being used more often and has a much higher “cure” rate for c-diff and other antibiotic resistant infections- so far it worked for me

This probably boils down to a personal choice of choosing which risks you are willing to live with. I also was doing pretty well on rotating antibiotics. Between the C. diff risk and risk of superinfections, continuous antibiotic use was not recommended.

Remember, I was already on biologics for my arthritis and my GI encouraged me to switch to Remicade because there was more data available for it. It also was combined with azathioprine (oral Imuran). Entyvio is the next step if Remicade fails. I was less than thrilled to get involved with infusion therapy and the inconvenience of it. But, it has been OK and I schedule travel around it. The main thing is that I have been antibiotic free for nearly 2 years now. 

I don’t think there is any one clear answer.

Jan

 

thanks jan.. i think i agree there is no clear answer.I have at this point chosen to stay on antibiotics.  But interestingly enough i was doing so well last few years i have cut back on dosage just as an experiment and to my surprise where i i might have used 2 five hundred mil. of something i get by on one..I have done it rather arbitrarily so not sure i tried it for every one of the four i rotate but plan to do so more systematically. With that approach in mind i will probably then try missing a day every other day just to see.So in my case i feel comfortable with my choice right now.

I once took remade as a last resort when i had colitis it was not successful and so more concerned about trying an infusion type thing at this point. i prefer to think in the event things go south for me down the road i have that to try.What keeps me sane is thinking i have something i can try in the event of...Fortunately i have not had any incidence of c-diff in a very long time and if in event i need to take another antibiotic for something i just stop the one for pouchitis so not to push my luck..So far so good.

When i get more conclusive resumes that is something that works for everyone with few exceptions i will stay the course on anti biotics

 

 

 

I’ve been on a regimen of Cipro, Budesonide and Loperamide for about 10 years.  Last Spring they took me off Cipro.  Led to a lot more trips to the bathroom.  Now they are taking me off Budesonide.  It’s been over a month now and having more and more problems.  I understand the long term risks of these drugs but bone density scans are consistently normal, no other problems.  I’m not real excited to start Entyvio given the low success rate, annoying side effects and hassle taking it intravenously.  Any success talking docs into leaving you on Steroids?

I have begun treatment with the Entyvio. Received my second dose today. So far, positive results. Tapering off of the steroids. Through my 18+ year history with colitis and a colectomy I have taken all of the biologics, steroids and know Entyvio. They all have potential long term affects and my colectomy was done because I had developed colon cancer, in addition to chronic coilitis. Whther any of the medications caused or effected the cancer is unknown. At this point in my life, age 70, I just want as much relief as I can get and am willing to deal with possible, unknown and , in my view , unlikely serious side effects of Entyvio.

I’ve been in Entyvio for over 2 years and it worked almost immediately It has a very high success rating BTW 

Do I like taking it no but I’ve suffered for 18 years with this pouch and pouchitis since day 1

Finally living a fairly normal life although I do have some side effects but it’s better than losing my pouch 

To be honest the 2 times that I was really really sick and hospitalized with pouchitis was when I was on antibiotics 

i will never take antibiotics again for pouchitis I really think they messed everything up

i did well for a few years on old UC meds until I developed some sinus issues from them and had to stop and then started the antibiotics train 

 

allkat read your post and i am thrilled you have had success at last.. ITS BEEN A LONG hard road for you..I have chosen to stay with my antibiotics simply because they are working..Going on three years now..And not long ago i reduced the dosages to 1/2 each  and still going well..I also want to note diet does not seem to be a factor at all.. i pretty much can eat whatever. My only restrictions is my own preferences now.Istarted my pouch  journey in 04 and in only the last three has it gotten stable to lead as you say a pretty normal life..Although normal for us is not the old normal i am not stressed from the condition now and except for some annoying itching i get i handle the rest fine..I have no idea what will happen in the future with pouch but you and i certainly have had some serious challenges and here we are pouch in tack and still hanging in !! Lets hope it stays that way..

I've had chronic cuffitis and pouchitis and had been on cipro and flagyl rotating for 7years and as soon as I stopped talking them I would get sick so decided to try Entyvio infusions and have been on it for a year and it took the whole year for it to work and finally  in remission but just last week I started with the stomach cramps and urgency  and now I think I have pouchitis or cuffitis I can't tell the difference. They both hurt just as much. I have no side effects from Entyvio. 

i would go back to cipra and flags again if i were in your place..if it works stick with it..i rotate my antibiotics it works staying with it..and i too have to stay on it..If they caused no issues for you .i do not stop my antibiotics ever..to work one needs to stay on it..

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