hi NostalgicCowboy, You can see a topic I posted recently about my good experience post-surgery. I'm 8 months out since the last surgery and in really good shape. I had UC for 20 years before my...
I've heard that it's safe. Doctors don't really know how it works but it's great for some medical issues. Last I checked (about 2 years ago) it was not approved for use for Chrohn's/ UC and would...
Thanks for all the replies! Old Hat - You are amazing to remember that! I am actually going to Europe this summer for the first time since that trip many years ago when I stocked up on the asacol...
Hi all, I used to follow this group closely and I thought I'd just report back from the other side of J-pouch surgery. I'd feared surgery for so long and was devastated when I was told that I had to...
These kinds of surgeries can cause hernias even if you are really careful about exerting yourself, so don't feel bad if that's what it is. I know of two people who got hernias from abdominal surgery...
Thanks very much for the helpful info! It's amazing what you don't get told from the surgeon's office. Marianne -- Thanks for saying that the first days after takedown are nutty. I really like that...
Hi. I'm scheduled for my take down surgery in a couple weeks. My surgeon is in a city an hour and a half from where I live. For the last surgery, my spouse and I stayed in a hotel for a couple days...
I just thought I'd follow up to say that I've had the pain again in my upper abdomen/chest/sternum area and Keith was definitely correct -- it was a partial blockage. (Interesting that the surgical...
Thanks so much, Keith! I actually mentioned the pain to the surgeon but it was in the middle of a conversation and he didn't give it much thought. The resident, with whom I spoke at length, didn't...
Hi. I'm two months post-surgery. I have a temporary loop ileostomy and will have my second j-pouch surgery in a month. Three times I have been up in the middle of the night with pain in my sternum...
Kinda surprised that no one has mentioned vulvodynia yet. A very common and often misdiagnosed condition that causes pain and uncomfortableness. Can be caused by inflammation, antibiotic use, vaginal...
Just wanted to say that I had similar problems with my hair really falling out and being thin. I think it was the asacol I was on. Could have also been the periodic doses of prednisone and all the...
Thanks for these replies. The concerns I have are that both drugs increase the risk of lymphoma and play around with your immune system -- maybe increasing risk of infection, illness? -- but I...
I'm wondering if anyone is on both Remicade and 6MP and could tell me about your experience. My doctor says that the two together have good results but I don't like the idea of taking two toxic...
Look up "pressure urticaria" and see if that's what it looks like. I've had that off and on and it doesn't seem to be related to the colitis meds. Dermatologist fixed it with a shot of antihistamine...
Sounds like the asacol alone isn't doing enough right now. If I were you, I'd talk to my doctor. 4 tabs of asacol per day is not a lot. Maybe you need more; maybe you need something else. I tend to...
I don't think it means that the vanco isn't working if you are still having D. Once the c diff is gone, you'll still have UC symptoms, which is what you could be seeing. Also, the antibiotic can...
Oh gosh. What a tale. Is the doctor who is "treating" your c diff a GI? If so, maybe you can go to your general doctor / internist to get another opinion about what's going on. For probiotics --...
Hi again. I am wondering if anyone taking Qing Dai has an update on how you are doing. I was taking it for 3 months but wound up with c diff, so I had to stop. I might re-start soon. Anyone have any...
I mix it with oatmeal in the morning: 1/4 tsp of Qing Dai 2 Tablespoons (about) of instant oatmeal cinnamon sugar or honey Add a little hot water, mix it up, and you don't taste the Qing Dai at all....
Thanks for starting this thread and re-opening the conversation. I, too, am about to start taking the Qing Dai powder. I was surprised by the post that mentioned that the herb could have sulfur in...
I wanted to share what I've been doing that has made a huge difference to my quality of life. I went to a new doctor who put me on: *Immodium pills - two pills 3 times a day. (I adjust depending on...
Hi. We had the same problem with my family member who I was helping care for. I called around and finally found a medical supply store that I could go to and get some new bags and wafers. It cost a...
Has anyone else besides Dan had a problem with the Cymed products? I'm wondering what the odds are that it will work for the person I care for. I'm trying to find something for sensitive skin and...
I'm so sorry that you are going through this disease espeically in such a stressful, awful work environment. I'm pretty sure that your job should be protected under the American with Disabilities...
I've never had this happen before but my new insurance just denied my Rowasa prescription and told me it wasn't covered under the plan. They said it's not FDA approved. I checked online and it was...
Thanks. Blksteeda, good questions. I should have mentioned that the doctor's office is an hour from here, so I can't stop by like I'd like. I'm getting monitored every week just short-term while I...
It could also be the supplements. If they are new to her regimen of pills, you might want to cut back and introduce one at a time. I found that one vitamin I took in the AM gave me stomach cramps....
This is a small rant and also a question. Forgive the rant part but I'm so frustrated with trying to manage my own care. Story is this: I have a fabulous doctor. He is widely respected and a top guy....
You were so smart to get your husband to call for medical help. I can't imagine the stress and worry you must be feeling now. Your employer should have a posted or available printed copy of the FMLA...
I've got a bit of the puffy face going on too. At work, I've tried to make light of the whole thing by just telling a bunch of my friends why I look different. Not sure if this tactic will work in...
I also find that laying in bed with a heating pad on my stomach afterward helps me not run back to the bathroom. Also, I just posted this on another thread, but there's a new version of Rowasa...
Did you use the new kind of Rowasa without the sulfa preservative? Maybe you're allergic to the preservative. I think the new one is called Rowasa SF or something like that. It's supposed to be for...
This is such a big issue for so many of us, I'm sure. Thanks for bringing it up. (By the way, I don't have kids but I've heard that some women with colitis go into remission when they're pregnant. So...
Thanks, guys. I'm relaxed about it... just wondering when I can stop doing double takes in the mirror! :) Since this is a short-term course of pred -- at least, that's the plan -- I'll just wait and...
I haven't been on pred in so many years that I guess my reaction to it is different now that I'm older. I'd never gotten moonface before and definitely didn't expect to. Been on 30 mg for about 3.5...
I'd suggest going to a good dermatologist and telling him/her about the prednisone. I had some dermatological issues from stopping cortisone and it turned out that it was something called perioral...
I've been told by my doctor not to taper Pred until I check in and make sure I am in great shape. So there's no schedule to taper -- it's based on how I feel. Also, Rowasa is a maintenance drug, so...
hi there. Sorry about that waiting period. That's tough. I would check out three things: 1) verify that the 62 day pre-existiing condition thing is really a thing. Many group plans do not have...
Acupuncturists, like other specialists, vary. Some of really competent and well-trained doctors. Others are not. I went to well-trained acupuncturist who trained in China. I was ready to check into a...
I wish people hadn't mentioned throwing it up. That wasn't what I needed to know. I just wanted to know: When was the last time you ate before your c-scope? Did you take the laxative pills?...
Thanks, Everyone. Glad to hear this is a tolerable prep. I was just thinking how strange it is that this prep doesn't have anything to do the morning before. I used to have to drink something at 5 in...
Thanks, Sam(antha). They say that I can eat jello (which I don't like) and broth and clear liquids. But they say to start the clear liquid diet in the morning, which would be over 36 hours from my...
Hi all, I thought I was a real pro having colonoscopies since this will be my 5th. But the doctor gave me a prep I've never done before and the instructions are really unclear and pretty stupid. I'm...
If there's a chance that you have to pay for it yourself, you should go to the Prometheus labs website. Last time I checked they had a form you could fill out to pre-pay with a credit card and get a...
As I understand it, the virtual colonoscopies (pill cam, non-invasive) are useless for people with UC because the doctor is just looking but not taking biopsies. For people with UC, you're supposed...
Very helpful. Thanks! I will get tested and see what my level is and what the doctor says. Old Hat - thanks for the warnings. 6 weeks to recover from a megadose is enough to make me be careful!!...
I've been told by a friend that I should order from VitaminD3 from the website vitD3.com. I'm wondering if anyone here does this. I know that I should probably call my doctor and ask him to order a...
The Sigma Tau website is so odd. The search function says that it's not carried in any pharmacies in my state, which seems truly unlikely. Also, when I click to get purchase info on the capsules, it...
Thanks for all these great responses. It really is good to get a reminder of all the people who get into remission and - wow!- some have stayed in remission for years. I go up and down with this darn...