I would ask your doctor to check your EBV (ebstein barr virus) level for this mono causing virus. High levels may go hand in hand with UC , chronic fatigue syndrome. There are drugs out there for...
I initially had my EBV checked by my GI doctor prior to me started imuran because if this is dormant in your body prior to taking a drug to lower your immune system the ebb could go wild in your...
Has any one have the actually number of their EB Virus counted? Mine ranges between 15k and 68k - for over a year now!! Both too high to start taking Imuran. I however believe there is a strong...
I have U.C. and have had a positive EB Viral Load for over a year that simply won't come down. I have blood drawn about every 6 weeks and my doctor orders a EBV count with each blood draw. He...
I will be traveling to London - I guess technically that is not Europe per se. I also have been studying the plane seat selections and I think I like the plane with two isles and seats in the middle...
Thank you all very much for the advice! I sort of visualized it working like claireean posted but i think I didn't want to believe it. I have been very lucky with this condition until now.... one...
I am currently in what seems like a really bad chronic - type flare, but am planning a trip to Europe in March. Does anyone have experience or words of wisdom for flying or information on how much...
Thanks for your advise. I know that I am fortunate, for the most part, that I can still work and that i am pretty heathy (not overweight etc.). BUT honestly the inflated stomach thing is all relative...
Hi its Charmin again, I have known Universal UC for 4 years. When diagnosed I was hospitalized for a total of 30 (yes 30) days. Prior to being diagnosed I wasn't even taken one single medication. No...
I have been on a prednisone taper (now at 20 mg - started at 40 mg) for several weeks. I think I had some improvement with daytime urgency, but there has been no change in night time "events". Pain,...
Any idea why a flare is associated with sooooo much bloating? By the end of the day I seriously look and feel pregnant! Any ideas about how to help this? I have tried small meals and not eating at...
No fever, and I did just start rectal meds. Thank you for your replies. My stomach is just talking soooooo much. As opposed to m first major flare I am wondering if this one can just be up higher. I...
Have been in remission 3 years. Just on Lialda - a fairly low dose . For the past 4 days i am having major abdominal pain in waves - with bloating and tenderness all over my lower abdomen. Stool is...
I was just started on Nystatin oral solution swish and swallow. It doesn't really seem to be helping and now the discomfort is traveling down my neck? Has anyone had a similar experience? I was told...
Hi I'm on prednisone for the first time -all of March and currently on 25 mg. I can't sleep more than 3 hrs at a time even with the use of Ambiem. I just tried Ambiem CR (as advertised on TV!) last...
Just a question for you. I'm on Remicade too. So far I have just had two doses. I don't know the answer to your question because after a 2 week hospitalization just this month I was diagnosed with...
I was really bleeding during my first dose of remicade that was given to me while hospitalized. It took about 5 days to work and for a few days and then I started making rabbit turds (seriously just...
Hi Everyone, I have not had a BM for 4 days and now I have some left sided pain, and slight nausea. Has anyone every had this problem to the point of needing more than Milk of Mag?? Do I dare use a...
meesh - i like your take on this too. maybe my doctors will react the same way. however, i'm told the clinic is m- f 9 to 3 and I work the same hours. supposedly i get benedry IV every time. i have...
Does this mean that to some degree diarrhea is "OK"? Do you just hope it doesn't lead to bloody D?...
Thanks -- that is the kind of thing i'm looking for. I'm so new at this I forgot about FMLA! I will look into that for sure!! I'm also wondering how my doctors will view my request. I was thinking...
Does true remission mean you can eat anything you want? I guess with or without medication....
I was just diagnosed this month with severe pancolitis (hopitalized almost two weeks). I ended up on steroids - currently 35 mg Pednisone and Remicade. I am having formed stools - for a week or so-...
Hi Everyone, I am fortunate to have a job with good benefits. I was just diagnosed with severe pancolitis March 1 and was hospitalized for 2 weeks and at home now for almost 2 weeks. I know we are...
Hi -- I just had my second remicade treatment last Tuesday. I was just diagnosed with severe pancolitits and did not respond to IV steroids (12 days in the hospital). Hence, I started remicade in the...
Yes, I should have told someone about my throat, but since this is all so new I didn't really realize.... Steroids are also crazy because you don't really know what you are feeling and how much is...
My headache started last night and I woke up with worsening pain. I just hate calling the doctor. What did they do for your throat. After my first treatment I felt a litttle trouble swallowing and...
I had my second dose of remicade two days ago and now I have a pretty severe headache. I usually never get headaches. I also have a sore throat. The only other medication I am taking is prednisone -...
I lived with 4 girls to one bathroom and it was pretty gross. We had to clean it ourselves (and that never happened). I think a bathroom down the hall with people going in and out would be much less...
No I'm just taking Ambiem (not Ambiem CR). I'm getting second remicade today and I will ask for it. Thanks. At least I'm posting this at 5 AM and not 3 AM!! I won't mention that I fell to sleep at 1...
thanks again for the ideas. i really need to not make lists in my head, but rather just get up and do them! also the going to work late plan is great -- my work will be fine with that. only problem...
Ok guys I'm newly diagnosed with pancolitis and just discharged from the hospital (was in 13 days!) I'm flying high on steroids and remicade and i feel normal. Can I really eat corned beef?...
thanks everyone! I guess I will just try to enjoy the "high" for now... I already screwed up today and didn't take my prednisone until 10:30! I like what you said Kspace...enjoy the time... i will...
On 35 mg with a 5 mg weekly taper schedule. Just started it over one week ago. This is my first experience with UC and prednisone. I cannot sleep more than 3 hours. I don't sleep during the day. I...
I had my first dose two weeks ago. It took about 7 days to work. Had two to three days of "normal" movements...now nothing for three days. Only other drug is prednisone and soft diet....
Is it common to take time off of work after a major hospitalization? I was just discharged after a 13 night stay. I will give you the major details, but the "back to work question" still remains......
Thanks everyone for your replies. I hope to get back to work full time too. I was just released from the hospital after a 12 day stay. Failed IV steroids--- this was my first flare and first...
Thank you so much for the reply. That really gives me a great basic understanding as I begin my journey....
Just diagnosed with pancolitis. Just spent 12 days in the hospital -- all totally new to me. Now on prednisone 40 mg and remicade. Want to start pro or prebiotics. What is the difference? I know I...
Just had my first infusion 6 days ago. All of the long term side effects are discussed everywhere. What is actually supposed to happen to me? So far I'm just really tired and basically have had no...
Thanks Blueclassring Hi Charmin here. Just wanted to thank you for the advice of finding a doctor -- i was the undiagnosed / untreated person with "night time bathroom trips" . I had 12 days of...
I just spent 12 days in the hospital and was diagnosed with severe pan UC. Some of you actually encouraged me to get the help I really needed. This is all totally new to me. I was treated with...
I was considering going to the ER last night. For those of you who don't know me I'm Charmin - diagnosed with mild UC rectum only in Jan. , but now per sigmoidoscopy have it up to a least 60 cm. I...
thank you. i like all of your suggestions. i HAVE to something to try to feel better. opening up may help -- even if I keep it is a little vague with some groups. my goodness this part is making me...
I actually did mention it to a doctor friend I know. In fact he made a few calls and that is how I had a same day appointment and a sigmoidoscopy within 12 hours. It was the first time I openly...
Need I ask more? I have managed to hide my symptoms from everyone for four months - except for my family of course. I work full time in an office environment - I share an office. Bathrooms are down a...
Thanks everyone for your comments. When I didn't get responses I was thinking my question was way too basic for you pros. Silly me I asked on a Friday evening and then was checking during the night...
Hi Everyone, I had my first official appointment with a specialist yesterday - after walking around with untreated worsening symptoms since Oct. My colonoscopy in Jan. showed 20 cm ( verbal report...
Hi everyone (Charmin here). I'm actually sorry I picked that name, but at the time I thought it was slighly funny. However I'm quickly learning this is no joking matter. For those of you following...
I really can't thank you all enough for your responses. Besides going through all of the emotions that comes with this condition I have very little information about it. Each day I was hoping to get...