Check my profile, my email will be visible for the next hour or two. Feel free to email me....
Hi there, I haven't been on here for awhile, and then when I do, I see a post asking about my very own GI doc, Dr. Garth Swanson! He is at Rush university in Chicago, as is Dr. Mutlu(female in case...
I am way late on this thread, but I cannot imagine trying to eat well period while on prednisone and having the emotional side effects! They are the worst! Chrissy, if I were you, I'd just give...
I say Remicade as well, it does have the longest track record of effectiveness with UC versus the other two, and from what my dr tell me, once you fail one TNF blocker, the chances of another working...
This is a fascinating post... I think how I define myself definitely depends on how I am currently feeling, if you asked me 6 months ago, I'd say, yes, I am sick, as I had a long weird flare that...
Hi bootstrap, I am a little late coming into this conversation, but I just wanted to say I have been exactly where you are emotionally--trying to wrap your head around the idea of surgery. That's how...
OMG, I am laughing so hard at this thread!! I wish there was a 'like' button so I could like some or all of these posts! This one is copying Red a bit, but you know you have UC when you come out of...
Hi Old Hat, I know I am a little late to join this discussion, but just wanted to let you know I have uterine fibroid and its not a big deal unless it gets too big(Judy2's experience). Mine grew a...
Ronnielee, I am very much hoping to have the success you have had so far with Remicade!! Thank you!...
This is kind of related to this conversation, but am I the only one who didn't laugh hysterically in the movie Bridesmaids when the bride poops her pants in the street? I remember being in the...
Thanks everyone! Its hard explaining to someone who has never had these horrid mouth ulcers how bad they really are, but you all (unfortunately) get it, and for the empathy I am very grateful....
A very belated thank you for all the support. Between our power being out for a couple days, the holiday and then going out of town for the weekend, I wasn't able to reply to any of you. I talked to...
Thanks for all the replies and advice everyone. The freaking mouth sores are finally on their way out, still not eating many solid foods until the bad ones on my tongue heal, but very slowly they are...
Fndcureforuc, thank you for your kind words. vb4girl, your story is very compelling. Navigating between allopathic medicine and, well, anything else, is very tricky. I began seeing a functional...
Thanks for the feedback. I don't know if Benadryl is given where I will be going, kind of hoping I can opt out as have heard it can wipe you out for a day or so. Mryne, I certainly hope what that dr...
Thanks for the feedback and support everyone! The Benadryl thing is interesting, I don't know yet how that is handled where I will be going, but being out of it for a day does kind of suck..I will...
I had a similar experience with a non GI dr who thought he knew all about IBD. This happened with a dermatologist(yeah, I know, why would they even touch this one..). I have some IBD related skin...
The Cimzia shots are tricky for sure. Do you have the video they send to help you through it? After I was trained by a nurse, I watched the video and then before every shot, I read through the...
Hello everyone, So it looks like I am onto my 3rd biologic--tried Humira last year, then Cimzia as my insurance wouldn't cover Remicade and my recent symptoms necessitated either another increase in...
Thanks for the replies. Good to know I am not the only one with these isolated symptoms! And you guys definitely get how crazy painful these sores are, the worse ones are on my tongue. I do think...
Thanks for the replies. When I was in the hospital in February for severe mouth ulcers and crazy sinus swelling, I was tested for a whole mess of things including HSV and probably Bechet's and about...
Since the beginning of this year(dx almost 8 years ago) I have had mouth ulcers off and on. This is now the third episode this year where they started up and are extremely painful and I have tons of...
Hi, I have been on Cimzia since last September and it saved my colon. I did have to double my dose to 2 shots every two weeks and I have had a bunch of extraintestinal symptoms, but it really seems...
I was doing really well, working hard staying on the Paleo diet and exercising a lot..and then little stuff started in like my skin issues(non specific acne painful cyst like acne on my face and...
Thanks everyone. I am seeing my dermatologist today to see if this is erythema nodosum, I was told over the phone I would probably need a biopsy so they can say definitely if that is what it is....
So I have been having skin issues likely related to my UC/possibly Crohns colitis and I have a new one. I have been noticing a couple red raised bumps on my shins and lower legs, kind of sensitive...
@quincy, I am on a erythromycin-benzol peroxide topical gel, before that I think just erythromycin. I would hope that the pred is just about out of my system, I was on it just a month and its been...
So Humira would potentially be your second biologic drug? I ask because I was on Humira last year and it did not work at all for me, and I was put on my second biologic, Cimzia and it literally keeps...
Does anyone think these are related?? Only this year, when my body has gone totally haywire with all the extra intestinal symptoms have I gotten acne. Big, painful pimples that take forever to heal,...
I just switched from VSL#3 tabs, probably around 6 a day to 2 sachets of VSL#3 DS a day and I would have had some major painful bloating, so much so I backtracked and just did 2 sachet for a week and...
Hi Mathias, Its interesting that you mentioned hard stools--I have been on the Paleo diet for about a month and though I can't really tell yet if it is helping, one thing I noticed right away was my...
Yeah, I wonder if this is PIANO study out of UCSF, I originally heard about it in a CCFA newsletter and signed up in probably 2009 when I was pregnant. Though you just never know, flared in my first...
When I saw your topic, my first thought was 'no, no, no! Avoid prednisone as long as you can!' Also, I think you answered your own question about this when you said you are back on gluten for celiac...
Thanks for all the feedback and support everyone! @quincy, I am not worried about carb intake as you get carbs from fruit as well as from grains. Regarding the autoimmune issue, the theory with this...
So over a month ago I began seeing a functional medicine doctor to get some more answers about keeping my UC in control. Cimzia is keeping my GI symtpoms pretty much under control, but the extra...
While Humira didn't really help me at all when I was on it last year, I had no problem getting it approved with my health insurance. That being said, they later wouldn't approve Remicade for some...
I have two things to add-- I live just outside of Chicago and have seen the 'Hot Dogs cause Butt Cancer' billboard on the highway..interestingly, my husband says its doesn't phase him anymore as he...
Yeah, maybe you can inspire one of them to be an IBD specialist, we sure need more of them!...
I am so sorry about all your stress about getting off pred(if that isn't enough!) and deciding on Remicade. Can't hurt to try diet modification while waiting to start Remicade and waiting for that to...
Actually, the doctor I am seeing told me the test he uses looks at least 6 different antibodies that one can have to gluten and then it will look at specific glutens and those on the fringe like oats...
I will just echo all these posts and say that I too have suffered from mouth(tongue, sides of mouth and inside lips) and throat sores, they can be brutal. Some of you on here know I was hospitalized...
Hi, Navigating the diet thing can be very overwhelming, especially if you aren't feeling well. I think rarely will a dr acknowledge that diet can contribute to or cause UC symptoms, which is annoying...
CoLah, The unpredictability of this disease is what tires me out emotionally the most--the roller coaster of maybe today will be good day, but then it isnt and then on and on it goes. I would suggest...
Ha! I was once also duped by Costco Kirkland toilet paper..now I get the Charmin brand they sell there and its great. I actually got a compliment on it from a relative who was using it to blow his...
Very happy for you to get support from those who get it! I have yet to find a regular support group near me..odd too, as I live in a very near a big city, the group by me meets once every other month...
Starting just this year(dx 2004) I began to get skin manifestations like you described as well--really painful large pimple type things on my butt, groin and scalp. I saw a dermatologist and was told...