Hi everyone, I've been on Entyvio for a while now (get it every 4 weeks), and last month, the day after my infusion, I had terrible GI cramps, and worsening symptoms. That has never happened before...
I just met with my doctor today and he is now saying that he agrees with waiting for now, so I think I am holding off on surgery and waiting to see how it goes. I agree with what you all have said...
Thanks everyone for the replies, right now I do not have surgery scheduled, but I am in the works of having it scheduled which I am very hesitant to do. I don't know if I should take my hesitancy as...
Hello all, I have been on almost every medication out there over the course of the last 3 1/2 years and I have not seen result with anything except prednisone. Now I am on Entyvio but not noticing...
I have been getting it every 4 weeks for a little bit now, but only because my doctor did not see any improvement at 8 weeks so wanted to try every possibility and see if 4 weeks would make a...
Thank you all for your help, I appreciate all the advice and I will try your suggestions!...
Im not sure of the dose, I am taking two packets at a time of the VSL 3 double strength. This is the same as I have always taken though. I am not sure why it is bothering me now...
Hi everyone. I used to take VSL 3 all the time the last time I got C Diff and it sometimes made me feel a little bit nauseous but it was never too bad. After I got rid of the C Diff i randomly had...
Thanks everyone for the input. I am not sure why my doctor decided this was a good choice, I guess he wants to use up every option before surgery, I feel like I have no other options at this point so...
I have been on Entyvio for 4 months or so, have had 5 or 6 infusions and haven't seen any improvements. My doctor is a firm believer in giving meds a fair chance before saying they don't work. He...
I just got vancomycin. Do you usually use probiotics too?...
Hi everyone, I was having a lot of pain and frequency and blood and some fevers the last few weeks and it turns out I have C. Diff. What are everyones experiences who has had this before? I have...
Right now I am only on Vedolizumab and fish oil and Effexor (anti depressant). I have had three infusions of Vedolizumab so far so been on it a couple months. The only other possibility I could think...
Hello everyone! About two weeks ago, I started feeling nauseous, and had a lack of appetite and then I started having fevers for about 3 days. During all this I also started having a lot more pain in...
Thanks so much for your help everyone! I have an appointment on Friday and we are going to discuss all of this with the dr as well. The only problem we have with finding a new dr is that we are...
I am currently on methotrexate and humira weekly as well as 5 mg of prednisone that I have tapered down from 60 mg since last October. I also take a bunch of supplements and an antidepressant and...
I have already tried Remicade and it did not help me and I also had an infusion reaction so I had to stop getting it. I have tried pretty much every med out there. Would it be worth trying Simponi...
I have tried many meds and none have really worked and I have been on humira and methotrexate together for 14 months now and I am still going to the bathroom 5-8 times a day and my last colonoscopy a...
Hello everyone! I was wondering what people's experience has been with acupuncture or a chiropractor when it comes to helping with UC symptoms. I have been going for acupuncture for about 6 or 7...
I took lialda as an oral mesalamine for a long time and it never did anything to help so I eventually stopped taking it, but I never had any kind of reaction to it. And I used canasa suppository...
Hi everyone! I started rowasa enemas last night and I am not sure if I had a reaction to it. The day before I started it I only had 2 formed bowel movements and the days before that I was usually 2-5...
Thanks everyone for the advice and support! I guess I just want to come off the methotrexate and humira and prednisone more than anything because they are not good to be on long term. I have been on...
Hi everyone! So I just had an appointment with my doctor yesterday and I thought everything had been going well. I had a colonoscopy a few weeks ago that shows some inflammation throughout my colon...
Thank you so much everyone for all the information! And thank you so much for being so supportive for me and for everyone else here as well! I know I really appreciate hearing everyone's stories and...
I am glad to hear that things didn't look too bad, I hope your symptoms are under control as well....
Peace&Harmony, Im so glad everything worked out, even though you had no other option..its great that you are happy with the outcome! Can't ask for much more than that! How have you adjusted to life...
I understand, that makes sense why you have the permanent ileostomy. I hope to make the best decision in the long run... I have another colonoscopy scheduled for early march and some special CT scan...
ByeByeUC,That's great! I am glad it was such a positive experience for you! My doctor is through Penn Presbyterian and I have talked to a few docs through University of Pennsylvania. I know many...
ByeByeUC, You said you got your surgeries done in Philadelphia? What hospital/doctor did you use? I have talked to several surgeons there and wondered who you used/where you got your surgery....
I have been up and down prednisone since 2011 and it is definitely not meant for long term use, and I always flare back up when I get down to low doses. I am still on it now and this time around I...
NiceCupOfTea, Thanks so much for all of your help, it makes me feel better to know I'm not the only one who "only" goes 10-12x at the worst. As of now, on 17.5 of prednisone I am going 8-10x a day,...
My fear with the biologics and lesser known/new drugs are that long term effects may not be known..like with Vedolizumab. It is going to be a brand new med, and yes they have done clinical trials,...
PoucherInTO, Thanks so much for all your advice! I have seen a two different colorectal surgeons and gotten information on surgery (both j pouch and permanent ileostomy). I definitely feel informed...
I appreciate all of your help! I know what you mean, it is hard for me to really judge my quality of life right now because I feel like I have always been up and down on steroids and therefore don't...
You really have been through a lot. Like you said on my thread, we are in similar situations as they have listed me as indeterminate colitis as well. I have always had every sign pointing to UC;...
Hi everyone! I was diagnosed with Ulcerative Colitis in 2011 which got changed to Indeterminate Colitis recently due to "giant cells" (precursors of granulomas) in my stomach and small intestine. I...
scum1, I just read your thread and I will post a reply! How long have you been on humira and methotrexate together? My doc keeps asking if I think it is helping but I cant really tell as I am on...
I am a sophomore in college right now, and was diagnosed with UC going into my senior year of high school. I lived on campus my first semester of freshman year, and my symptoms were somewhat under...
NiceCupOfTea, Sorry about that, they found the giant cells during an upper endoscopy which they did at the same time as the colonoscopy. They took biopsies from my stomach and duodenum during the...
ByeByeUC, That's so interesting that they gave you such different diagnoses, but Im so glad it ended up working out for you! I have tried a few tests to get a confirmed diagnosis. I tried a CT...
I am on vitamin D because my levels were low, I am on folic acid to go with the methotrexate, milk thistle to try and prevent liver damage from the other meds, fish oil. I am also taking nexium for...
Hi everyone, I am new to this site and need some advice from all you more experienced people! I am 19 years old and was diagnosed with ulcerative colitis (pancolitis) in August of 2011. In a more...