I struggled with UC for four years and nothing really helped for long. I was steroid dependent, I got severe anemia, I did try Remicade infusions and they provided some relief, but stopped lasting as...
I cannot take NSAIDs orally due to j-pouch surgery (I don't know why, just that my surgeon told me to stay away from aspirin, Advil, Ibuprofin and only take Tylenol). Tylenol doesn't always do it for...
I haven't been here for awhile, but I wanted to post about the j-pouch surgery I started almost a year ago. After fighting my UC for four years, I threw in the towel and decided, fearfully I must...
I was absolutely unable to tolerate Imuran. I was on 50 mg for a week, and when it was upped to 100 mg a week later by the end of the week I really thought I was going to die from the nausea,...
Get over to j-pouch.org and register for the forums. You will find lots of good advice for dealing with your loop ileostomy and you'll learn more about getting a j-pouch and leaving the external bag...
It's from the Lialda. Any of the mesalimine drugs cause it. I experienced it with Asacol and Colazal as well. It was worse with the enemas, making a real mess. The best way to deal with it, if dirty...
The forum and more info site that Chef Patrick mentioned is likely www.j-pouch.org. Just FYI, I'm Meesh62 on those boards (Meesh is someone else there). Please, don't just rule out surgery. If all...
My two and a half years on Remicade let me get off of Prednisone and let me prepare for the surgery -- coming to terms with it mentally, finding the right surgeon and saving money for the time off I...
I have no problems sleeping now, but when I was on Prednisone I couldn't sleep at all. Didn't like Ambien, Lunesta gave me a headache -- I gave Tylenol PM a try and it did the trick. I also sleep...
Hey Old Hat, even through the worst of it I only missed ONE day of work due to the UC! That was when my bad reaction to the Imuran hit such a point I couldn't get out of bed. I often had to poo in my...
I haven't been as active here for awhile as I had been when I actively suffering UC. Once I decided to have j-pouch surgery I moved over to the boards on j-pouch.org (where I am Meesh62) because they...
I think my having surgery was actually cost-effective for my insurance company because my medications were so expensive!! Check out www.j-pouch.org. The forums there are great and the web site itself...
It's super hard, but try not to give in to the increased appetite. I was on Prednisone for more than two years and managed to keep the weight gain under 10 pounds. If you can handle raw veggies they...
I had my first surgery Jan 12 and my take down April 6. I feel great. I am still getting used to the new plumbing and things will be improving (I should have less frequency, and right now I sometimes...
burnabygirl, if the only thing you're not liking about the ileostomy is the gas, that's awesome. I had a hard time with my temp ileo and was very happy to have my take down 4/6. As far as the gas...
I recently had the surgeries and it was the best thing I ever did, no regrets. I had the first surgery (total colectomy, j-pouch pouch formation and temp ileostemy) Jan 12 and my take down was April...
Hey, I'm six days out from my second surgery (take down) feel GREAT and am already cutting my BM trips down considerably each day. I HIGHLY recommend the surgery and, as with so many others who have...
Seek a second opinion, I believe surgery is warranted when your quality of life is poor, and your wife's (and the whole family's) quality of life is poor. Also, you may want to reconsider j-pouch...
Guess you're recovering now, hope it all went well!! I had my surgery Jan 12 and the first few weeks are a challenge but then you're healing and starting to cope with the temp ileo and you'll be...
Suebear is right about www.j-pouch.org, it's a great site and you should register for the forums there (I am Meesh62 on that forum as there already was a Meesh). Another VERY good site that explains...
That study sounds pretty invasive, and if you are worried about Remicade side effects, what sort of side effects would that nerve stimulation expose you to? I was on Remicade for two and a half years...
My surgeon had a strong preference for open surgery and I figured I'd let him operate the way he preferred. It's not like I'm an 18 year old hottie with a bikini body anyway!! Meesh...
Good luck! It's not an easy journey but it's well worth it. I had my first surgery January 12 and have been coping with the ileostomy. My take down is scheduled for April 6. Aside from the temp ileo,...
You're right, this is life long so finding a good GI you are comfortable with is prime. My GI told me, right off the bat, something I was not ready to hear, but you should keep in the back of your...
WIMOMOFTHREE, have you considered the surgery? It's scary to contemplate, but with three kids to keep up with you may want that energy back!!...
UncleJ, I still have the temporary ileostomy, so I have the bag and don't get the feeling of having to go to the bathroom yet. That will happen after takedown and I've been told I will go more often...
I was on Pred for two years and my family said it was like living with me having PMS for two years. I had trouble sleeping, I managed to keep the weight gain to ten pounds but I was CONSTANTLY...
I could never get enough sleep when I had UC. I'd work and come home and lie down on the couch, fall asleep watching TV, get up to bed and fall right back to sleep again ... the fatigue was one of...
Shorty, not sure what you mean by "the reversible surgery." Once you have your colon out there's really no turning back. That said, it's the only "cure" for UC and if you've been suffering for more...
I came to within an inch of my life on Imuran and was very hesitant to try Remicade, but it was a really bad time for me to have major surgery, so I did try the Remi. It worked well and I tolerated...
I had a terrible experience with Imuran, but did great on Remicade for a couple of years. Tolerated it very well, didn't get ill or experience any side effects. It just stopped working as well after...
For me remicade was the last chance before surgery. I was on it for two and a half years and soon went from infusions every eight weeks to infusions every six weeks. Then my symptoms started to...
I was diagnosed almost four years ago so I didn't have to deal with UC for much of my life, like many of the others here have had to, but I never really achieved 100% remission, although Remicade did...
Sorry -- my GI was so adamant about it (even when I had a long flight I had to go on) that I guess I assumed it was off limits for all. Meesh...
Sue, how long do you have to be off the prednisone to be a candidate for 1 step -- just curious, for me that boat has already sailed ;-) I was on Pred for two years, but had been off of it for more...
My surgeon said the chance for success is much greater if the surgery is done in two steps, three if there have been further complications such a rupture or other damage. I have a client who's...
Neferet, the surgery is typically done in two or three steps, two being the most common. With two step the first is pretty major, that's removing the colon, constructing the j-pouch and making the...
Just a reminder, if you haven't had the surgery, no matter how tempting it is, DO NOT take Immodium when you have a flare (or at all actually). Taking Immodium when you have UC or CD can lead to...
I have a dear dear friend of more than 20 years who was diagnosed with Celiac around the same time I was diagnosed with UC. She sees the world with Celiac-colored colored glasses and is convinced...
I don't know, all the meds coming down the pipeline seem to be more of the same ... mesalamines with varying delivery systems (Asacol, Colazol, Lialda) and biologics (Remicade, Humira, orencia,...
For the time being you may want to research the surgery -- I was very much against entertaining the idea of surgery for several years. I was on Remicade for two and half years but by last summer it...
I was on Remicade for a long time and never had to pay a thing -- hospital medications are covered 100% by my insurance, so it was actually cheaper than my other meds I had to get from the drug store....
I was on Remicade for about 2 and half years. I never had any side effects, felt great during and after the infusions. It eventually stopped working for me, but the time it did work gave me the time...
I'm on Lialda now, been on either that, Asacol or Colazol since dx, not that any of them seem to help much. Perhaps I'd be even worst without them. What I like about the Lialda is that I on;y have to...
I'm with EvaLou, with UC there's always the option of surgery, and I think people who are suffering and have exhausted medical options should, at the very least, consult a surgeon. I was very against...
I'm only saying look into it. You deserve a quality life, not just stuck in your house, in pain, hovering near the bathroom. Work is not the problem....
I feel your frustration, and it is horribly embarrassing to be unable to control a basic body function as an adult. It is a life-altering illness when not in control. But think this through -- if you...
Your system is just always working to fight the inflammation. I am also tired ALL the time, I pretty much and then recover from working. I fall asleep on the couch in the early evening mjore often...
Consult with a surgeon. Some GIs are very oriented to medical treatments for UC. I was lucky, my GI was fine with me trying all the meds (Imuran was a HORRIBLE experience for me, had an awful...
You may want to consult with a surgeon and learn about your surgical options. Remicade worked for me for quite awhile, but now it is not, so I met with a surgeon over the summer and decided to have...