Hi Kanva, Sorry you had to deal with such a crappy GI doc. Glad you were able to get back on antibiotics. I was also doing the same as you, 2 weeks on Cipro and 2 weeks on Flagyl, and had the same...
Hey class/j-pouchers! I wanted to let you all know about a product I'm using on the advice of my naturopathic doc. It's called GI Benefits, made by DaVinci Labs. I completely forgot to mention it in...
No I asked my doctor about this and they said there is no need. I'm really concerned that eventually they will start to not work since I've been on them for so long. Again, when I asked my GI doc...
Hey All, Nice to see everyone doing better. I feel almost completely normal (finally), but still on antibiotics but they seem to be working now. I take 500mg of Cipro in the morning and 500mg of...
I really hope the FMT works and you finally get some relief Valli....
Hey all, Sorry I'm MIA. Dealing with a heavy workload, daughter's high school graduation, my pouchitis and about a million other things. I talked to my doc again and they said if the antibiotics are...
I did talk to my GI about biologics and they said they don't treat pouchitis with them, only antibiotics. It was really frustrating to hear. I haven't tried a combo yet, I think they are holding off...
Glad you were able to enjoy your trip Valli. I also have days where I have no appetite but other days I can't stop eating. It's crazy. LOL I'm still battling pouchitis. The doc switched me to Flagyl...
I agree, 6 weeks is a long time to wait. My doctor will also see me if needed within a day or two. I think I will email my doc now and ask about rotating antibiotics after this long round of Cipro....
That's great news!!! Glad the meds are working for you. If you reduce them and symptoms return, can you go back to the original dosage?...
I had one and it's was uncomfortable but not painful. And it was an enema. I actually got to see the screen while they were taking the pictures so it was kind of cool to see my Jpouch....
I was also on lovenox shots for 3 weeks after my first 2 surgeries. I hated them. He ordered them after my last surgery but I never took them. I was moving around so I figured I didn't need them....
Hi Kanva, I understand how you feel. I've been dealing with pouchitis since January (though I think I had it from takedown). My doctor just keeps giving me Cipro too. This round they want me on it...
Woogy, Sorry if I wasn’t clear, I was recommending alternating every week, not skipping days. Switching/rotating 3 weeks and then skipping for week, this way you don’t build up a tolerance for one...
I would try the Uceris and see if that helps. But I went on and off prednisone and the last time I was on them for almost a year. I wish I would have tried the biologics sooner but I was afraid of...
They didn't do a biopsy, my doc said during the procedure that it's not Crohn's based on what it looked like. It was just standard pouchitis. Ugh. I have tried pepto and it makes it very hard to...
Well saw my doc today. Since the antibiotics work, this is their course of action. They will keep me on 500mg twice a day, then down to 500mg once a day for two weeks, 250mg once a day for two weeks...
Thanks. I was really hoping to be med free but yes I think I would rather take a biologic once a month than these antibiotics every day. I noticed this last script he gave me is now 500mg twice a day...
Yes I am back on Cipro again. It seems each time I go back on them they are taking longer to work. The first time it was within 24 hrs that I felt relief. This time, it was around day 3 that I...
Hey Valli, Is your doctor keeping you on the antibiotics for a month? I've also been on and off Cipro since January. When on it, I feel great and normal. But like you, after a few days of stopping,...
I have Coloplast convex 2 piece pouches along with stoma powder, barrier rings, adhesive remover, etc. not sure if you would use any of this. if so let me know where I can send them....
I tried several different meds, probiotics, diet, the canned spinach diet, oil of oregano, etc. They would work for a bit and then stop. So keep trying whatever you can and hopefully one or a combo...
Yes I did mean a biologic. I think I will discuss this with my GI after I finish this round of antibiotics. After reading the side effects of long term antibiotic use, specially Cipro, the biologic...
My symptoms are more like what KS described - noise, discomfort, difficulty emptying, frequency and just feeling unwell. Oh and very gassy no matter what I eat which also causes pain/discomfort. I...
Yes I believe I had issues from day 1. Even in the hospital after my takedown, I had issues going. I could never empty my pouch fully. Then I started to feel normal for a little while - but I wasn't...
Hey Valli, The only time I ever had any problems with foods was when I was in a flare. Ice cream never bothered me before, but I couldn't eat it if my UC was flaring, it was bad if I did. So maybe...
Hey Valli, Sorry to hear you're back in pain. I have also noticed increased gas if I eat sugar and I have a lot if I have ice cream. I don't think it's the dairy because I have milk in my coffee and...
I've only had Cipro. The first round was twice a day for two weeks. This round it was twice a day for two weeks and once a day for a week. My last dose was last night. Though all this week I can feel...
Hey Champ, I hope your closing went smoothly today and that you got some rest afterwards. Glad your surgery went well. Here's to a speedy recovery....
Hey Valli, Sorry to hear you're still having so many issues. I really hope the Prednisone works for you. I know how you feel, I'm still having issues with the pouchitis. I felt good until this week...
Sorry you are having such a hard time. It's a big adjustment and especially when you didn't really have a choice. But it does get better. How are you feeling now? I know I felt great after I had my...
This is so true!! I got to the point where I didn't tell anyone about my UC because some would say "you don't look sick". Others would try to give advice even though they had no clue what they were...
Well....I guess I spoke to soon. The pouchitis is back. I noticed 2 days ago that I was getting up every 2 hrs at night again, the pressure slightly returning and the having to go as soon as I eat...
This does not sound like remission especially since there is urgency. I wonder if you still have inflammation in the beginning of your rectum/colon that is not seen on the scope....
Hey peeps. Sorry I haven't been online much. Been busy with work, kids, etc. The antibiotics and suppositories have seemed to help. It's been a week since I stopped taking them and I feel pretty...
KS - I'm taking the Cipro twice a day, with breakfast and before bed. Song - glad you got to go on your trip but sad you're not doing very good with your pouch. hopefully our issues are resolved soon....
Doc gave me Cipro. But it's a 30 day supply. I thought it's normally 2 weeks?? But I'm already feeling better and only had to get up one time last night in a span of 7 hrs. Man was that nice!!! lol I...
Thanks KS. I have Florastor and another probiotic (that I can't recall the name of) so I will try those. How long of a time span do they need to be taken apart from the antibiotic? So I will probably...
So since I'm going to be taking an antibiotic, should I be taking probiotics too? I haven't taken any probiotics since I had the surgeries....
That is great new KS. Glad to hear the Stelara is working for you!! I look forward to your posts as you truly do help us since you've had issues and actually resolved them!! LOL...
I was on Humira and it didn't do anything for my flare. Before that I was on Imuran and that didn't help either. I hear it works really fast for some and they get relief. I didn't. Wasn't a fan of...
Got the results back from my doc. There are no surgical complications but there is inflammation in the pouch and the cuff. So they want to start me on an antibiotic. I did ask them if I should also...
Oh Vali, I'm sorry to hear you are still feeling crappy. I hope the docs can give you a different antibiotic that doesn't have those side effects. Maybe if you do both the suppository and antibiotic...
I'm keeping my fingers crossed that the suppositories with for you. It truly sucks to go thru all these surgeries and still be in pain. Good luck....
No I haven't tried antibiotics. The doc wants to wait for the MRE before doing anything. Yeah I have been using Tylenol now but last night all I could find was Aleve. It was 3am and I was too...
Hey guys, I've been MIA lately. Still not feeling the best. Went to the GI and they couldn't figure out what was causing the pain in my groin which got worse after eating. They don't think it's a...
I brought my kindle/tablet/phone to pass the time. A few pair of pajama bottoms to wear. They are great when you get up to walk (at least I felt more comfortable having pj pants on while strolling...
Song-thanks for the explanation. It's weird that my surgeon told me it's okay to take ibuprofen. I will stick to tylenol. Though I just bought some Arnica pellets and those seem to work well for...
I'm glad your wound is starting to get better. Sucks you had to go to a wound clinic. I used one after my second surgery because my belly button incision want closing up. They really did help, but it...
Hi Sunny, There are some stoma guards you can wear. They are raised up to protect your stoma. Here is a review of one - https://www.veganostomy.ca/stoma-protector-review/ Good luck finding something...