I have been dealing with both infections for many years. Usually my treatment is an antibiotic with rectal steroid suppository. The infections go into remission for a few months and then return. This time the infections' progress was very fast and the pain level jumped to a 7 in a matter of days so I am taking an oral steroid as well as Cipro and the suppositories. I rotate antibiotics to avoid antibiotic resistance. Is there anything else I should do? Have any of you taken an oral steroid with your usual treatment?
You might be able to prevent cuffitis flares by using rectal mesalamine (e.g. Canasa suppositories or by enema). It's probably helpful not to think of either of these as infections. Cuffitis especially is just like UC in the small remnant of colon that you have (the "rectal cuff"). Pouchitis seems to be connected to the bacterial mix in the pouch, and antibiotics alter that mix - but it's not an ordinary infection.
Thank you for your reply. Unfortunately, my uc never improved with either oral or rectal mesalamine. I have done everything I could try to keep the bacterial mix in my gut healthy but nothing has worked. Ibd diets and VSL #3 did not work. I tried each diet for a minimum of three months except for following the AIP diet for six months. It worked the best but my family hated it.
Sometimes a combination of things will work when a single one doesn't. It's much harder to explore, though.
You've lured me into suggesting one more thing that you've perhaps tried but not revealed in your posts: Short chain fatty acid enemas.
I am intrigued...what is a short chain fatty acid enema?
Short chain fatty acid enemas are a venerable treatment for distal (near the anus) colitis. Some people get good results. The ingredients aren't particularly expensive, so (assuming your doc agrees) you would want to shop for a compounding pharmacy that is reasonable.
Also: just because topical mesalamine failed for you with UC doesn't necessarily mean it will fail in cuffitis.
I'm in constant need because I keep getting pouch inflammation or cuff inflammation. Why ? what can I do to prevent this from constantly happening?
I took antibiotics and that did nothing? last time I had this I was admitted and given IV antibiotics and it seemed to work. well this time when I felt the same symptoms of last time. I asked and thought I was crazy for such a request! I did not think so if it worked why not go that route again at an infusion center somewhere? Anyway is there anything I can do in the meantime? any home remedies that would work?
Thank you for the suggestions. I have an appointment with my gi to explore them.
I am very sorry you are going through this too. I do not have any answers for you. The preventive measures I tried did not work. Try placing your own post titled "How to prevent flares?" and you should receive more informed answers.
All the best,
For awhile I used antibiotics PLUS Budesonide ("designer" oral steroid) to treat pouchitis. Generally it isn't supposed to be a maintenance drug (although there are trials using budesonide as a maintenance drug for UC going on now), and I always flared when they tried to wean me off it (and they didn't want me on steroid suppositories long term either, due to concerns about thinning tissues).
Ultimately I switched to antibiotics PLUS Immuran and that combo is working well for me.
How is your energy level on the Immuran?
To be honest, I think my energy level may have taken a slight hit, but I've adjusted. I have 2 kids and work 50 hrs/wk, but I don't let it slow me down. Biggest difference is I used to be able to really push myself and more easily get by on fewer hours of sleep, and Icant really do that to myself anymore. Like where I used to routinely get by on 6 hrs/night, now, I can do 6 hrs a couple nights/wk, but I need 7-8 on the others to keep up. I couldn't function well with pouchitis though, so needing more sleep is a reasonable tradeoff for me.
Well I saw Dr. Shen yesterday for a pouch scope. What he found was a small ulcer not in the pouch itself but above. How he wants to treat is IV medication Entyvio. that will treat both infection and ulcer , according to Anne Feldman, according to his nurse practitioner Anne. I hope this works I missed a whole week of work last week and do not want to be replaced!
I've been in Entyvio for 2 years with good results
Thanks had the 1st treatment on Tuesday. I felt nothing until the next day. I ACTUALLY felt normal the next day and then after that i havent felt very good. Does it take more than 1 treatment? Also was given a list of side effects and the brain damage is so scary!!! Do you also take any steroids? I did years ago whe i had my stoma and felt fabulous. Ever since i had the jpouch surgery i have been in and out of the hospital. If this treatment doesnt work im really considering going back. My husband feels its not a good choice but he is not the patient although he had been with me every step of the way. Should i mention to Anne and Dr. Shen about the steroids? By the way they were oral steroids and at that time my weight was up and mow weigh 96 lbs at the age of 40 so not very happy about that! I just want to live my life pain free. Ya also now on disability can only work like 2 days a week is this truly a life???
JJA, turns out I have a very bad reaction to Imuran, uncontrollable vomitting and a blinding headache so bad that I temporarily lost the vision in my left eye. It was a useful suggestion though. My gi wants me to try humira before trying entyvio. He considers Entyvio the very last solution he recommends before surgery. He is nervous about the viral vulnerability to patients using it.
I was on and off steroids for about 25 years. I suffer from bone density issues because of how long I used it.
I am very sorry your treatment is not working. Trying all of these drugs feels more like Russian roulette than a treatment plan. I hope you feel better soon.
Subzero-Yikes! That sounds scary-sorry! My docs say my next steps are Humira or Remicade, with Entivyo to follow if/when those don't work. I thought I was facing surgery a few years ago. Now I just keep hoping I have enough time left on immuran and then roll through these biologics once that stops working to buy enough time for something new to come along to keep staving off surgery. I wish you the best!
Entyvio can take a while to work but I was lucky after the first infusion. This is my last hope drug but there is no way I’m removing this pouch, no no no more surgeries for me. Don’t worry about brain stuff, not one case has been found. Yeah, I sometimes get a delayed reaction. it’s very strange drug, lol, I do get premeds with solumedrol and benedryl. It has helped with some dizziness and nausea And bone pains I would get. I still got a spell this infusion of extreme tiredness but it seems to be improving. Don’t worry everyone gains some weight on Entyvio so for you that’s good! 2 years for me, I hope it continues until something else comes along. Check out Entyvio warriors of Facebook
Wow,you have been through the mill! And here i am complaining. I pray we can both get through this"nightmare" Dr. Shen did want to do another surgery too because of the angelation of pouch but im terrified! The alternative is going for pouchouchoscopys every 2 months for dialations of the pouch. This does work! Do you have children,work, travel some? These a the things i want in my live and also a succesful career. I need to finish college had to drop out wben this all started when i was 25. I dont think im asking alot but right now im not able to do any of it! It sucks when i see people around me doing these things and i cant. Anyway i feel nausiated today i assume from the Entyvio,hoping it goes away. Thank you so much for responding and telling me your story.i really helps me to keep trying! Looking forward to hear back from you soon. Where do you live? I live in Akron, Ohio��
I've been disabled for 17 years due to all this entyvio even with the side effects has given me the closest resemblance of a normal life My bathroom trips which were 15 a day or more now IDK I hardly go, lol I can sleep thru the night I do not have what I call the UC sickness I can eat anything I don't feel sick I feel normal except for a few days where I'll feel tired achy headaches I don't even think about my pouch health anymore I have not gotten sick in 2 years and I'm around a germy grandbaby for the last year I have gone on a cruise to Mexico ����♀️I was sweating that one but was fine and did things I never thought I could do I was complaining to my daughter the other day how I was not feeling good from the Entyvio and she said would you rather have a few days than be in bed like every day Ok I am retired but I spend a lot of time with my grand baby we go to parks and walks and play IDK whatever else u do with a one year old, I work out with weights, I'm seeing my friends more, I spent a weekend with my friends in the Hamptons, been going into the NYC a lot making up for lost time The Entyvio got me thru 2 carpal tunnel surgeries and extensive oral surgeries and next week cataracts This kind of stress would have put me in a flare It's doing its job The side effects should get better after a while otherwise talk with your Dr about pre meds. it worked after the first infusion for me and was able to reverse after the second I have not even had a scope in 2 years a miracle in itself lol good luck you can message me anytime
Oh and to Subzero try adding 3000 mg of turmeric pills every day it works great fir inflammation do not do more than that I work with a functional Medicine dr I take about 1500 I'm suppose to take more but I forget my evening dose lol
Dont know if anyone has any symptoms that im about to explain but if you have i would sure love to know. Im not even thinking its a side affect from Entyvio? Anyway i am now experiecing slight tummy ache, but is like on fire down there,and feel like i constanly have to go. Its quite uncomfortable, anyone have an idea what it is? Thanks so much plan on calling Dr. Shens office first thing in the morning but if anyone out there a has any idea what it is i would sure love to know??? Thanks again Leslie
Thank you for sharing your story��
Yes I get that sometimes as well for a day or too
What is it? Also having incontinents, real gassy, and butt is on fire!
Yeah lots of gas, either your body is adjusting, not working yet, or side effects. Gas is very common so it seems. Take pepto bismuth
check out entyvio warriors group on Facebook
Well today i have to say that i havent felt this good in years!!!! Entivyio must have taken a while to kick in for me. My 2nd treatment is this Monday i cant imagine feeling any better than i do right now. But if i do feel even better, all i have to say is wow!!! I cant believe how good i feel at the moment! Hoping it stays!! My thought is why did they wait so long to give it to me? I havent felt this good in at least 4yrs, when i first had the jpouch surgery. Im thankful for today the you God!
Recently i had to quit the Entyvio , my doctor GI mind you sent me to a nuerologist. After all the testing they dicovered brain atrophy. I was like what me?? Well they they discovered that the Entyvio can cause you to have this infection of the brain called PML that's for sure what I had. I was confused a lot, dizzy all the time, loss of balance. I was tested for PML and it was negative, thank God! after all the testing its being malnurished and not absorbing things the right way. which they have been working a lot . But I just want to inform others if taking Etyvio You can develop PML its happened to people using Entyvio. so Beware!!!!