Hi Fellow Crohnies, I posted this to the Ostomy forum, but I'm thinking anyone with a successful reversal probably doesn't go back to the forum very often. I've scoured it and haven't found much to...
If it's working for you, STAY THE COURSE! It's more dangerous to have active disease than to be on Remicade long term. I was similar to you -- Remicade + Immuran for two years, then Remicade alone...
Hi Everyone, I usually frequent the Crohn's forum, but have been lurking here since my emergency temporary ileostomy. I had my reversal surgery eleven days ago. The cramps have been intense and my...
You're correct. They usually form post surgery or when the body is healing itself after severe inflammation. Ten years ago I was pregnant and had a severe flare. The doctor at the time told me I had...
When it rains it pours! I've been unwell for a month now. Each week there's a new diagnosis. Long story short--About ten years ago I had the worst flare of my life and almost lost my baby. Everything...
Just putting this here in case someone needs to search for this later -- Vivonex isn't too bad WHILE you're drinking it. It's think and it coats the mouth, so I opted to drink through a straw. But...
Hi Barbz, Hugs to you. I hope you are able to get answers soon....
Hi bforeal, I had something similar to what you're talking about. And it was on my face! My husband tried to tell me it wasn't noticeable, but he was trying to get me not to stress about it. I didn't...
Turns out the flavor packets were discontinued...... But I did find this link to flavoring options on a medical supply website:...
Hi All, I have scoured the internet trying to find Vivonex flavor packets. All I can find are comments saying, "Don't forget the flavor packets!." :( I'm supposed to start drinking these next week...
I drank my supply and went back to the store to purchase more.... They were out! So I went to the children's section to find some Pedialyte. They also have a new product. Looking at the labels and...
Thank you, everyone for your responses. Long story short, the fever broke and I was able to get my infusion (about 50 hours later). I felt fantastic! And then.... I ate a small meal. Two hours later...
Hi Everyone, A little over two weeks ago I had a fever. It spiked at 103 and slowly went down everyday for the next few days. It would always rise a little in the evening, but each day and night the...
I found this article via the Medscape app, but Reuters published it. It may also shed light on how to make better choices in terms of medication. "Psoriasis Shows Bidirectional Association with IBD"...
Yes! Answers! And then hopefully solutions. :)...
I would recommend going with Stelara or Entyvio. Humira is the same type of drug as Remicade (anti-TNF), so it's probably not going to be as effective for you since you've already tried Remicade and...
I've been sick for the past few days. In addition to a high fever, I've not felt like eating or drinking much. Needless to say, I've had a tough time staying hydrated. My husband went to Walmart to...
Hi Samantha -- Please make sure you are in communication with your GI. Pregnancy and CD together are no joke. I've had one marvelous pregnancy and one that was the opposite. Luckily everything turned...
Try not to stress until you have results from the tests. (Easier said than done) As mentioned by the others, having low iron (or any other vitamins, etc) is common -- especially if the small...
Markers have never been a 100% indicator of how I’m feeling. They can be perfect, yet I have abdominal and joint pain. They can be elevated and I feel just fine. I was coming off a really bad flare...
Thanks for the reply. I've been online and enrolled. The plan *appears* straight forward. It's when the doctor sent the prescription to the specialty pharmacy that things went sideways. The plan said...
Hi All, It's been awhile since I've checked in, but I lurk from time to time. :) Does anyone have experience with ACA ("ObamaCare"/Marketplace) Healthcare in Arkansas? I recently moved back to the US...
Hi Z. Welcome to HW. I'm a US citizen living in Japan. I also lived in Korea for almost four years. I've visited Hong Kong several time and love it! So here's my two cents: 1). First ask your current...
I found this group about a year into my diagnosis with a doctor who wouldn't communicate with me, only gave me massive scripts of Asacol and Pentasa! HW and all the regulars at that time got me...
I don't know if they still have it, but the Crohn's and Me website has information on US based students with Crohn's....
Follow whatever the doctor tells you! I went into labor at 26 weeks because of a flare. I had to stay in the hospital on bed rest and pumped full of drugs to keep the labor under control. While all...
Hi CarolinAlaska, Welcome to the forum, but I'm sorry you have to be here. I have had crohn's for over ten years now, and I can't imagine if one of my kids get it! You must be having a lot of things...
Hi Vande, Please, PLEASE, P.L.E.A.S.E., do not go without meds during pregnancy. EVEN IF you are feeling "ok." I was in remission and dealing with an ob/gyn who said they knew about CD and its...
Try to see Dr. Scott Plevy. I'm pretty sure he's still at UNC. He's one of the best in IBD. PTSD?!?! In you gut?!?! Did that doctor actually go to med school? That is just rediculous and insulting. I...
Welcome to the forum! This place has been my saving grace on many occasions. So here is my story--and it it that, just my story--everyone and every BODY is different. From junior high through high...
Hey BU-- I hate it when people say, "oh, I'm so sorry" or something like that (no offense to anyone who may have said it). Well, he&@ yeah, we're all sorry--no one on this forum would wish this nasty...
Hi Canon, With all crohn's medications, sometimes it takes a little while to start feeling the full effects. And unfortunately there are times when the meds just don't do enough for us. This disease...
Hi Dusty, Glad to hear you are feeling better. However, it sounds like you are still having issues. If you truly cannot try any other meds because of other health problems, then try some other things...
Hi NY, About two years ago I had complications with a pregnancy that included an abscess. Long story short, the abscess was about golf ball size and a small fistula from it to my small intestine. At...
Yuck. I hate that feeling of "what they're going to find.". Have you had a lot of CD problems outside the States? I agree that having surgery in a place you are familiar with is much less stressful...
Hi Richard. I just moved to Seoul a few weeks ago. Let me know if you need anything while you're in the hospital or if you would like to meet up for coffee sometime. Email me any time....
Hi Chronie, I started having "acne" after my second infusion. The GI didn't think it was related, but the Derm did. However, since I was on birthcontrol, we didn't try tricycline (sp?) We tried...
Wow....that is unbelievable!!!! Per your questions: 6-mp/Imuran--These DO NOT work immediately. Usually you start at a low dose, take labs every two weeks or so, and if the labs are ok, then you go...
I am stunned......I've been out of the loop for a while, off and on. I've been quite busy with a move, my own CD preg/hospital stay, etc. I can't believe this..... My condolences to Kasper's family...
If your current doctor will not give you an infusion--GO TO ANOTHER DOCTOR!!! Please, please, please get help! I had a serious flare during pregnancy and it caused serious problems. A flare can cause...
Hey krw, Dr. Kim Persley is in the dfw area. I think some others on here see her. The link below gives some info including which insurance she (her office takes)....
I am so sorry to hear about this. I know what it's like to be in the hospital and not know what's going on. (I just got finished with a lengthy stay in the hospital myself.). I know it's hard, but...
There IS an app for that!! Here in Japan the ladies have always been embarassed by the sound of nature. For years they flushed while doing their business (#1 and/or #2) and then flushed when...
Dear BeCool--GO TO YOUR GI IMMEDIATLY!!!!! If you don't like him, then find another. But you need to treat the disease. PLEASE, please listen to me. Today I get to celebrate TEN WEEKS I'm the...
thank you for all the well wishes and prayers. I think that's all we can live on sometimes. Well.... It's always an adventure?? The doctor came in today and told me my crp was down to 1 and I might...
Hi all. Thanks for your replies. I am SO frustrated!! I had a small bowel follow through two days ago and the doctor says, "there is no apparent leak from the small intestine to the abscess.". So I...
Hi All, I am in need of lots of info! Here's the backstory: I moved to Japan last July. I was in complete remission and the next month became pregnant. BIG surprise!! I had what I thought was normal...
Hi Nanners. My symptoms right before starting X ranged from fatigue, joint pain, abdominal pain/tenderness (especially around terminal ilium area), and constipation. When my dr said he wanted to try...
Something I forgot to mention--I usually have whatever strange side effects there are from medications. I have never had any from xifaxan. I felt like a normal human being for the first time since dx....
I started taking Xifaxan in the spring of 2006. I had already tried 5-asas, other antibiotics, and Entocort with no real relief. My doctor started it as a trial, but I felt so much better and my labs...