That's great news! May your remission continue for many many years!...
Every time I have flared I had to change meds because just using pred only provided temporary relief. The meds always stopped working for me. If you don't have any symptoms and only the calprotecin...
I am going to have to ask for another kit to keep on hand because he is going to want a stool test if I ever flare and I don't want to have to go get a kit, come home get the sample, and go back to...
Poopydoop -- I have had some tests where it was a paper liner kind of thing. Most times its a plastic bowl that fits in a bracket you lay across the toilet bowl. It comes with a lid so all I have to...
I only access from my laptop, if that matters...
I spoke too soon. When I posted my comment above it took a little while to post and now things are slowing down again. I hope this gets fixed soon....
All I heard from the admin was an automated reply saying the problem was being worked on. Everything seems like it's finally working ok today. Fingers crossed the problems have been resolved....
I finally met with my new GI and he had some interesting things to say about new research and some new meds/therapies. He said use of dual bologics/meds is becoming more the norm -- especially with...
For now I am staying with my employer insurance and skipping Medicare completely, I triple checked that I won't be penalized later for not signing up when I turn 65 in January. Since I work for a...
I am still having problems so have sent a message to the admin. Hope this gets resolved as the site is fairly unusable to me. Pages load so slow (if I can even get to the forum at all -- some days it...
How are you doing? Have you had improvement in your symptoms and quality of life? If you haven't had any improvement at all then the trough level could be concerning. If you are doing well, then I...
How do I contact the admin? Been having lots of issues....
Very interesting. I googled it more about it and it says that 2/3rds of patients in the trial had never taken biologics or jaks. I am curious how well the other 3rd did on it. 1 pill a day sounds...
I am glad your doctor took time with you and answered your questions, but I don't understand what she said about rectal meds. While they don't reach your entire colon they do treat the area that...
Mesalamine enemas don't work for me. Steroid ones helped and I found them easier to retain than the others. I never had any side effects from them like pred, but some here have said that they did....
It took me 2 years to get in complete remission with remicade with several dosage and frequency changes (see my signature). I was functional pretty quickly, but it took that long to get rid of all...
Try not to worry about the shape of your stool. I don't have a perfect poo every day ... sometimes it's one big snake, other times it in big pieces, and sometimes it's mushy. I am in remission and I...
Please double check that dosage. Maintenance dose is 5 mg twice a day, I have never heard of anyone doing 5 mg once a day. You are doing well. You don't want to go backwards....
That's good news, Wayne! Don't get discouraged if you have some bad days. Healing is an up and down process sometimes. As long as you keep having more good days than bad you are on the right path....
Sorry to hear you are struggling. I've never had a flex scope but the thought of doing one while flaring sounds horrendous. I've had full colonoscopies while flaring, but I was knocked out for them...
Keep us posted. If this works it's a game changer!...
That's interesting, Midge. I don't remember the names of what they gave me. It was 5 years when that happened. Also had 2 bags of blood when I was in the hospital....
No blood, no urgency, no midnight dashes to the toilet, 1-3 bms a day -- all in all not bad at all. Depending on how bad your colon was you may never return to fully formed stools, but with more time...
That would be awesome!...
Hey Midge -- what is the difference between iron infusion vs iron transfusion? When I was in the hospital they did a slow IV push of iron, but then later I had to get a 4 hour "transfusion" of iron...
What your mother did is messed up....
How many trips to the toilet every 24 hours and do you have to go in the middle of the night?...
I didn't have the Hep vaccines. You might want to check about them. I sorta remember that there were multiple doses over a period of time. But that may have changed now. Have you had your blood work...
Sorry it didn't work for you MB. Most of us would love to be med free, but I know I can't function without meds. Quality of life dictates. At least you know you tried. If Humira doesn't help (not...
Have you been med free or are you on any other meds? Oral mesalamine doesn't release until it reaches the colon so it's essentially a topical for your entire colon. I would be hesitant to use it with...
Are you having problems with the j-pouch that make you hesitate to go anywhere? How often do you need to go and do you have control without urgency? Most people I see here say that the surgery gave...
Just curious ... were you in remission and had clear scopes when that happened to you? I have been fortunate and never got worse after a scope when I was already flaring. I've only had 2 scopes when...
MB ... I wasn't being negative ... just realistic. I went a couple years in a "simmering" flare (or "almost remission") trying alternatives. I was doing mostly ok symptom-wise but still kept seeing...
"almost remission" = still flaring, just saying....
Have you finished your loading doses? Were you on pred during the loading doses? If the answer to both questions, give it more time. Enyvio is slower to kick in than other meds. I think I was told...
I believe ipoop was talking about the rules for Reddit...
When flaring I limit what I eat and stick with chicken, salmon, rice, very well cooked vegs, etc. Dairy has never bothered me so I also eat cheese. In remission I eat pretty much everything except...
When I was 1st diagnosed I had a million questions and used Google to search for info. Healing Well was always popping up in the search results. I lurked for about a year before I actually joined. I...
This site slowed down when Google stopped putting it near the top when you search for questions about UC. I found HW when I was first diagnosed and was searching for answers to questions. Seemed like...
According to Rinvoq's website the starting dose is 45 mg once daily for 12 weeks (for UC it says 8 weeks), then drop to 30 or 15. You should probably clarify with your doc...
Private messaging would be a nice feature to add. I would like to echo Old Hat and than Peter and the mods for making Healing Well the best site to find and follow all kinds of info related to UC....
In general, people over share on social media - who needs to know every time you brush your teeth lol...
I am also one who will delete my account if they have it linked to other accounts so hopefully ipoop is correct and that it won't be mandatory....
Thanks for posting this poopydoop. I haven't received an email either and would never have seen the article. I just hope the new owners keep the same basic format and don't turn this into a new...
Sorry that things got so bad! Many here have had success with Xeljanz so hopefully this will do the trick for you. Are you starting it while tapering the pred?...
Clo -- I am not on Medicare. The example I provided is through my UHC employer insurance. It worked pretty much the same way when we had BCBS except everything was billed (med and infusion) through...
Clo -- my question was for Curious Crapper Curious Crapper -- did you get this straightened out? What were you billed for the infusion?...
How much were you billed for the infusion? Like I said for me the infusion charges are a fraction of the med cost....
If you are in a solid remission I would be very hesitant to switch meds unless you are having some sort of reaction as there is no guarantee that a jak inhibitor would work as well for you as the...
Something doesn't sound right. My insurance covers 100% AFTER my max out of pocket is met. That usually happens with the 1st infusion of the year. Example: Inflectra is billed@ around $8000...