I've been on Entyvio for almost 2 years. It was used as a rescue drug for me during a horrible flare where I was very close to needing surgery. No plans to come off of it. Too risky given the history...
Yes, I had a baby girl! She was born healthy and perfect! My CRPs are always measured as mg/dL. Hope that's more informative!...
Hi! I realized I never updated after all the craziness! Entyvio actually ended up putting me into a relatively fast remission. All of my doctors were incredibly surprised as it is not usually used as...
I had a flex sig done this morning and things are apparently worse case scenario. I haven't been able to see any pictures yet - was sedated for the procedure. They told me if I wasn't pregnant they...
I'm currently on Simponi but they're planning on switching me to Entyvio at some point...
Okay everyone, after struggling at home for too long they finally hospitalized me. Because of my pregnancy the communication with the GI team is so insanely slow. My GI doc isn't on rounds this week...
That's good info! Thank you! Hopefully the prednisone kicks in and we get the opportunity to try some other drugs. Unfortunately I don't think she'll mess around with trying other drugs while...
Yes I believe my GI said Xeljanz is not advised during pregnancy. She said if I've failed Simponi that Humira probably won't work either. There was another in the class she mentioned, too, but can't...
Thank you. We talked about the antibody test but didn't do it because of the time it takes to get the results back. I think the focus now is to get back to remission then we'll play around with the...
Also I have been using nutrition shakes provides by my nutritionist to make sure I'm getting enough calories. I was having a really hard time eating enough on the low residue diet with the extra...
No rectal meds. My doc mentioned steroid enemas when I was on budesonide but now that I've been switched to pred I think she's more hesitant to put me on them because if the pregnancy? I am currently...
Hi. So, I'm currently 23 weeks pregnant and in a horrendous flare of my pancolitis. My CRP is 15 (highest mines ever been and I've been close to surgery twice with past flares) and sed rate is...
Thank you! Yes, I'm so bummed about this flare (pun not intended lol) because I've been doing so well for so long. And I made sure I was in remission for the appropriate amount of time before getting...
Hi everyone, I used to be a pretty regular member here but upon achieving clinical remission 2 years ago, I haven't stopped by/checked in as much. It was nice to almost "forget" about my UC for...
The symptoms Im experiencing are very similar to the symptoms outlined in the form that came with my enemas as mesalamine intolerance. The symptoms are similar to UC, though, so I'm not sure how to...
It is. As I posted earlier, I was hospitalized last year from blood loss. Had to get a transfusion. I have a pretty good idea of what is too much blood and how the loss affects me....
My theory is that the enemas reduced inflammation which allowed me to have multiple bms, but then the frequency of the bms irritated my rectum and caused inflammation again. Either that or I have...
Thanks all! The rolling is working well! Ive gotten the hang of it now. So..it's been a little over a week of daily enema use. For about five days things were definitely improving. I had very little...
While I have you all here..any tips for actually getting all of the enema out. I can only ever manage to squeeze out about 2/3. I feel wasteful throwing it out, but haven't found another way. If only...
I have an absurd amount of enemas for some reason. I will try twice daily and see if that helps. My flares have a tendency to come on fast and progress quickly and aggressively. Hoping I can stop...
My other symptoms are gas, mucus, and a mixture of diarrhea and semi-formed stools.Which indicates to me that the inflammation hasn't traveled the whole way up my colon yet. I have switched to enemas...
I was once hospitalized for blood loss BUT I was on two different blood thinners at the time. Believe me when I saw you will absolutely know when you've lost too much blood. The toilet is like a...
Mesalamine. I have Canasa and enema form....
Hi all! I'm never sure how much history to provide before asking a question. I'll make things brief. I have pancolitis and had my last major flare in Nov. They upped my remicade dose which caused me...
My antibody level was 46 ng/ml. I guess maybe my remicade isn't why I've been feeling so good? I'm so confused by my body....
Hello all! I am asking for some information, personal experience, advice, etc. I was diagnosed with pancolitis last July (it had progressed from just UP). My doc put me on an 8 week course of pred...
I have a clotting disorder as well. Factor 2. Can you explain a bit more about how Remicade affected/interacted with your clotting disorder?...
I see that now! The paper says an acceptable level is between .3 and 16. Which seems like a really huge range? But .7 is definitely on the lower side of that range.....
Hello all!! I have a Remi question. Let me give you a quick background with just the necessary information. Don't want to overload/bore you! I was diagnosed with UP in November 2014. Over the course...
The last bloodwork I got showed that my albumin was 3, but that was about 2 weeks ago. Not sure what it would be now. I actually had no idea what albumin even showed....
I have the little box for the remicade test. Just have to go and get it done! A TPN honestly sounds amazing right now. I would love to give my bowels a rest and still be getting nutrition. I feel...
First, thank you everyone for these replies. I don't know anyone else with UC, so it is so nice to come here and get such great info and feedback! This can be a very isolating disease. I have had...
I'll give you a quick background.. I was diagnosed in November 2014 with just Ulcerative Proctitis. I stuck with a terrible GI way longer than I should have. She "managed" my symptoms first with...
Thanks for your reply! Remicade is the only biologic I've tried so far. I believe the next one she wants to try is simponi. She definitely has the mindset that she wants to exhaust all medical...
Hello! I had a flex sig done yesterday to determine if I have improved at all from being on Remicade. Turns out I haven't and that my condition is actually worsening (woohoo). On my paperwork from my...
Well, I only weight about 108 pounds. That's why I'm such a low dose....
THANK YOU! That is great information, thank you!! I will definitely ask my GI about getting that test. I'm assuming they could just draw blood for it right before my infusion? Another thought I had...
Hello all! I have a remi question for you all. Let me give you a somewhat brief background. I was diagnosed with pancolitis (after having just UP for a few years) at the beginning of July and shortly...
I experienced a massive abdominal clot, a DVT that clotted the length of my abdomen to my knee, and a pulmonary embolism. I definitely had other major contributing factors that led to all the clots,...
Hello! I have an interesting diagnosis/medical history and therefore am on a weird combo of meds. I was wondering if anyone out there has a similar history or meds. It would be nice to compare notes!...
Thank you all for replying! I did end up emailing my doctor and she gave me similar information. She said they've had several patients carrying a healthy baby full term while on 6mp and breast feed...
This might have been mentioned in one of the replies above, but I didn't quite read through all of them for the sake of time. I apologize if this is a repeat of info! I was put on a Prednisone taper...
Hello all! I took my first dose (50 mg) of 6mp today. I was then talking to my friend, who is a nurse, about the new drugs I am on. She recently had a baby and mentioned that while she was pregnant...
Thanks again everyone! I had a flex sig done today to see if there was any improvement. The test shows no improvement in inflammation and slightly more ulceration from the time of my diagnosis in...
No, upper endoscope was because I have dark, almost black, spots in my stools and they're not sure what's causing it as I haven't had a change in diet. I think it's the Canasa creating the dark spots...
Thanks for all your input. I really appreciate it. Let the search for a new GI begin. Wishing you all well!...
Maybe I'm just whiney, but I feel like doctors would really benefit in their practices if they validated their patients feelings. They might be textbook experts on the disease and treatment (even...
I don't expect my Dr. to have all the answers regarding vitamins, but she should definitely be knowledgeable regarding probiotics. and I'm sure she coul have easily referred me to a...
My rectal biopsy report was mailed to me, but never discussed. There were a bunch of boxes the GI was supposed to check but they're all blank and at the bottom it says "rectal biopsies c/w...
Long story short: I was diagnosed with Ulcerative Proctitis this past November after getting a colonoscopy done. At the time of the procedure I had really awful mouth sores, both on the corners of my...