Thank you! I will try the j-pouch website. :)...
I had a colonoscopy yesterday and it's not looking good. My GI doctor suggested I make an appointment with a colorectal surgeon and the main one in the Austin, TX area is Dr. Thiru Lakshman with...
Happy to hear you are doing so well, mkl11. I hope Entyvio works as well for me. I've had 2 infusions so far and I feel like I am doing a little better, with some decrease in frequency/urgency and...
I have UC and have almost zero sex drive. I used to have a much higher sex drive, but UC that is not in remission can be terrible and debilitating. You should talk to your boyfriend about how he is...
It always blows my mind that other people might consider someone's personal decision not to have children as "selfish". Please don't ever feel that way. It is your life to live as you see fit. I also...
Definitely bring your questions on paper and submit them to the doctor ahead of time if you can. Stand firm and make sure they go through each of your questions! If it helps, bring a trusted family...
I did some more googling and found the actual scientific publication the article was based on if anyone is interested. Prolonged fasting reduces IGF-1/PKA to promote hematopoietic-stem-cell-based...
I read an article recently which suggested that a three day fast can possibly help reset the immune system, even in the elderly or immune compromised (like cancer patients). However, while the...
My general experience has been trouble food just exacerbates my symptoms, doesn't cause the underlying inflammation. Plus if you have IBS on top of IBD, good luck separating the two with regard to...
May sound silly, but when I was having serious urgency issues, I was seemingly able to gain a little more time to reach the bathroom using sheer mental power. On my speed walk to the bathroom, I...
I'm receiving Entyvio as a first biologic (meaning I haven't already tried Humira or Remicade). I suppose I was lucky that my insurance agreed to cover it, but I met all the guidelines as far as it...
Brilliant idea. Why didn't I think of that?!...
iPoop - I agree, the studies aren't there, and it's sad considering how long LDN has been around as a possible anti-inflammatory. I think the reason for lack of studies is the money isn't there. The...
Jujub - Last night was the first night in months where I actually slept through the night instead of getting up every 2-4 hours. It's amazing how much better I feel. I'm hoping this is a sign that...
Follow the schedule. If you taper too fast you'll only need to start over when your symptoms return. You may even find that 5mg is too fast. My doctor has me tapering by 2.5mg every two weeks and I...
I asked my GI about trying LDN and she basically said she would only consider it if there were significant studies done supporting it. The only studies out there I found were small samples so not...
I can relate to all of this. I've been in active flare for a long time, and taking prednisone for way longer than I would like. I'm foggy, scatterbrained, and sometimes have trouble speaking...
I had assumed (perhaps incorrectly) that my response to Entyvio would need to be monitored with regular blood work, like it did when I started taking 6-MP. Waiting for my GI to call back though....
You say you consider yourself to be lucky in that your case is not severe or unbearable but that you are also having accidents. Personally, I consider having accidents to be very unbearable, and I...
The oral mesalamines are mostly brand name (I think) but there should be a generic mesalamine enema that is very cheap....
Hi and welcome to the forum! Sorry to hear you are still having trouble. Since you have been on meds for a month and still having symptoms, you should definitely call your GI and let them know....
I had my first Entyvio infusion last Thursday 6/30 and my 2nd is next Thursday 7/14. My GI has not put in any orders for blood work yet. I'm going to call and ask them about it. But first, I wanted...
They should do a full blood panel to check stuff like liver enzymes. It's possible you've developed an intolerance to mesalamine medications. That happened to me and I was actually being made sicker...
How long have you been flaring? Don't starve yourself. It helps to eat smaller meals more frequently, I've found. They are a little expensive, but I would recommend getting Ensure Plus shakes (or...
Thanks. Just signed up :-)...
You absolutely can develop an intolerance to mesalamine - it happened to me. I had a 2 year remission using mesalamine meds (2x Lialda and 1x Canasa daily). When I started to flare, my doctor...
I also became intolerant of mesalamine. It kept me in remission for 2+ years and then suddenly stopped working. Did it cause you liver issues? My liver enzymes went way out whack and I also had a...
The fatigue is the worst symptom for me too. It doesn't help that I'm sometimes having to get up 2-3 times in the middle of the night to go to the bathroom, and getting good rest/sleep is so...
After doing some reading on Entyvio Ulcerative Colitis studies, my doctor saying 80% did seem wildly optimistic. I was reading more like 44-48% obtain clinical response after 6 weeks, and 42-45%...
Just an update as I saw my GI doctor today.... I thought it was odd, but she did not want to increase my dose of 6-MP despite my weight increase and WBC results. She does want me to start a biologic,...
I take my probiotic (VSL#3) in the morning mixed in cold water. I avoid eating/drinking any hot food for a while afterwards, though, since supposedly heat can kill the bacteria. Not sure how it...
That is interesting, thank you for sharing!...
Thank you, iPoop. Your response was very helpful and informative. I'll ask my doctor about the Thioprine Metabolites blood test as you suggest. I was very ill when first put on 6-MP and only weighed...
I developed intolerance to mesalamine, so I've been on 50mg mercaptopurine (6-MP) for the last 6 months. My blood work is fine, supposedly, but my year+ long flare shows no signs of letting up. I'm...
Thanks for the tips and suggestions, everyone! Perhaps I should look into buying a couple more probiotics and either alternating which one I take daily or combining them. That way I could get some...
I was put on a low dose of prednisone after a knee injury from running. Shortly after tapering off of the prednisone, my first UC symptoms manifested. I'm currently prednisone dependant to keep my UC...
Hi all, Mesalamines kept my ulcerative colitis in remission for 2.5 years but don't work for me anymore. In fact, I got VERY sick last year when my doctor tried to double my dose of Lialda to stop my...
If you are prescribed steroids, you should ask about Uceris. It's a steroid but supposedly targets the GI track so may have less side effects than regular prednisone. I've been on it for a week and...
You could ask your doctor about an alternative rectal steroid medication. My insurance only covered a fraction of Cortifoam so the alternative my doctor prescribed was generic hydrocortisone enemas....
Hi CCinPA, I think there was a misunderstanding. I haven't stopped taking Lialda, in fact my doctor increased my dose from 2/day to 4/day with this latest flare. My concern was that I shouldn't be...
Hi notsosicklygirl, and thanks for responding! I definitely realize using the restroom 8-10x daily is not normal. Before diagnosis and during remission the past few years I was only needing the...
Hello! I've been a longtime lurker, but this is my first post here. I thought I should introduce myself. I'll try to keep this short, but I'm afraid this may be a long read... I am female, age 33....