That is how I feel after all of mine. I can never drive home because I am so out of it and then need to sleep the rest of the day. I've never had premeds so I know it is the iron making me feel like...
Everyone's normal is totally different. Before my UC diagnosis in 2006, I went poop maybe 2x a week and strained a lot due to how dry and hard the stool was. I had constipation from the time I was...
I started simponi in 2013 and still take it. I usually have to stretch my shots every 5-6 weeks due to chronic neutropenia. My WBC is way too low when I do it every 4 weeks but delaying the shot...
so far, my doctors have done absolutely nothing because my bloodwork and xrays are normal. i just suffer every day and don't know what to do or what other doctor to see....
Things will get back to "normal" eventually once your gut's microbiome is healthy again. Ingest as many probiotic and prebiotic foods as you can and include lots of resistant starches in your diet to...
I have found that a low carb diet helped my symptoms a lot. I discovered it when I was doing the Specific Carbohydrate Diet and drastically cut my carbohydrate intake. I was able to leave the house...
I have had great success with nicotine and I was never a smoker. I started using the 4 mg lozenges and then worked my way up to patches. I still use them 4 years later. It was the only way I could...
I have had a lot of scopes but most of them were when I was very ill. My current doctor recommends every 2 years (no matter what) so that is what I have been doing since I have been seeing him. I was...
My joint pain has been constant since January 2017 but has worsened since then. I have seen so many doctors for it and they have tested for arthritis and lymes disease. Both negative. I've gotten...
Serenity, I just used magnesium citrate. It seems to work well for me and it tastes good. Countess, food only goes fast when my IC Valve syndrome is flaring but it hasn't in a while. I take Welchol...
Thank you Kara, Ipoop, Spring, Mom, and Flowers!! Spring, it just means that the ending of my small intestine has opened up so wide that it is the same size as my colon and there is no flap there...
Still in Clinical Remission!! Woohoo!!!! It went really well today guys. Everyone was so nice and I had the best anesthesiologist. She put the oxygen mask on my head and once she did that, I was...
Hey Andrea!! I'm sorry you are so sick. I hold off on meds when I am throwing up. No point in them going down the toilet. I'd let your stomach and intestines get out the offender and then resume...
Thanks, momto2boys. Hope you are doing well!!! 3timechamp, oh gosh. That is a lot of scopes!! I plan on reading as much as possible tomorrow. I just started the Dexter series so that has been really...
Hey guys. I know I'm not on too much anymore but just wanted some of that healingwell comfort you all seem to give. I go in for my colonoscopy Jan 3 at 9 am and I am so nervous. I do a two day prep...
I've had chronic neutropenia for years now and my GI doctor will not lower my simponi dosage so I take it every 5-6 weeks instead of every 4 weeks. I don't tell him that I do this but it seems to...
I always eat right before I go to sleep- usually 700-1000 calories and I usually eat this meal in bed! Haha I don't go to bed til around 12 am or 1 am so I will eat around 11:30 pm/12 am and then...
hey, my loves. mark, i sent you an email : ) linda, how are you doing?? still in that gorgeous house?? that sounds good, lonnie. what else was on it?? life is going just fabulous and i am happy. i...
NCOT, I should have specified what I meant by multiple. More like excessive. I usually go between 15-40 times per day during flares even though I am eating as much as I can. I usually ate more during...
You can't absorb any calories if you are pooping out all your food multiple times per day. It doesn't stay in your digestive tract long enough. When I went through my worst flare, I went from 130...
Why not use Vancomycin indefinitely?? My doctor offered this to me as a treatment and has other IBD patients on it for longterm treatment. Obviously, it costs a fortune but if your insurance covers...
If you are set on using your abdomen, I'd just go in the pooch area if you have one! I have such low body fat that the abdomen shots hurt me but the top of the thigh was just as unpleasant. I'm...
I think that has happened to me and it makes sense since the left side is where the end of the colon is. It's been a while since I dealt with the diarrhea aspect of this- I'm ALWAYS constipated now-...
Well, Welchol is just cholestyramine in pill form so if the powder didn't help, then darnit!! My main symptoms are burning pain in lower right side, lots of gas, bloating, nausea, and either diarrhea...
I'm not on Humira anymore but take Simponi and even though it isn't a "studied/recommended" site, I always do it right below my butt cheek. I am under 100 lbs so my meatiest area is right there. The...
Has your doctor prescribed you anything for bile acid diarrhea? Welchol has been very helpful for me during remission when my Ileocecal Valve Syndrome is acting up. This can cause food to run through...
I don't know much about Stelara and think it was just approved recently for UC patients. I can only comment on Remicade and Simponi. Remicade worked fast and really well for me but only in...
Oh yeah. I totally understand the Highmark versus UPMC crap. It's such a pain. That is pretty nice that they prefer home infusions. I've never met anyone around me that gets them but it's much more...
Hey KulinaryKidz, Where in Pittsburgh are you moving to?? I've lived in Pgh my whole life and currently am in the South Hills. I've never had any home infusions but have been to my fair share of...
Serenity- that is great. I hope your remission lasts forever : ) Ewa, I don't think my doctor will ever agree on cutting my simponi dose so I will just have to deal with the side effects. It is too...
That really blows, Andrea!! I've never had shingles but have heard it is a real pain. It sucks when our meds work so well for our UC but give us a weak immune system. Healthy people (family, friends,...
Hey Lonnie. You have a new name every time I come on here! haha Things are going better now. I had a scare a few months back but all is good. Turns out my Simponi dose is too high for my body weight...
I am curious how you are doing and how you were diagnosed, madcat. I had some routine bloodwork done by my PCP and then she ordered a bunch of other tests. A few things turned up and she told me I...
I have always had to miss my biologic dose when I have c diff. It will make everything worse because you can't fight the infection off....
I failed Remicade and Humira and have been on Simponi since 2013. Entyvio wasn't out at the time but I am not a candidate for it anyway. I go for my colonoscopy in the spring but I think I am still...
No, it's not for long term use. It doesn't sound like it is working for you if you are in severe pain....
I usually have hardboiled eggs, bacon, and sausage/tuna/salmon. Depends what I have in the freezer or in the pantry as far as meat goes. I also have a hot cup of bone broth if there is some in the...
I wouldn't get too down about it. You can reverse it with hard work!! I was diagnosed with osteopenia in 2011, osteoporosis in 2014 and then reversed it back to osteopenia by my 2016 DEXA. The lab...
I did remicade first with good results but it didn't last long. Humira made me super ill and I regret ever taking it. I have been on simponi since 2013 and still doing well!!...
I would stick to it for a couple of days or a week. If you haven't noticed a positive improvement by then, I seriously doubt you will. My gut tells me what it likes and doesn't like very fast so I...
I've been using the pills for years. I've never tried the packets though. They work very well and I only need one at a time to take away my burning pain and diarrhea....
I use ACV in my broth all the time. Granted, I always have IBS symptoms but it doesn't cause UC symptoms if that is what you mean....
I'm glad you posted about this and are not seriously ill. I have been having symptoms of pneumonia/flu since Monday night but started a new job today. There was no way I could not go in. I was able...
so you are not in a flare at all?? that is very weird to have all of these symptoms if you are in remission....
The past doesn't really matter at this point so I wouldn't be concerned about what has been going on the past 15 years. If your colonoscopy showed no UC, then it was very unlikely that you had it....
hey lonnie. just wanted to know that i'm going to pray for you and hope things go smoothly. i've taken blood thinners during all of my hospital stays and don't think they had a negative affect on my...
It's my 3 year anniversary of being on Simponi and so far, I haven't flared. I didn't get a lot out of Remicade before it failed and then Humira made me deathly ill. I don't even take it every 4...
I'm having the same problem. I'm on day 3 of my period and my cycle stopped in January 2011. I forgot what it was like and I hate having it back again. Tylenol doesn't do anything for me so I'm just...
geez. im so bummed reading this. i guess i haven't been on here much and didn't know you were flaring. i'm so sorry. i'd definitely get as much out of remicade as you can. we all know there are such...
I had a lot of problems sticking with running when I was in remission. It has caused me to flare or experience symptoms every time I have tried. It is sad but it is what it is. I was a "chronic...