Ulcerative colitis - worried about medications

Hi @wendyw,

I merged your discussion about finding others with kidney stones related to ulcerative colitis (UC) into this conversation, so that you could connect with other members who've shared their experiences with UC.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I'm confident that @lisabeans, @kates56, @barens2, @lynnes, @cdancer2, @christo56, @uconn @suez will return to share their thoughts and insights. @wendyw, I realize how worried you must be, and that you're doing all that you can. I want you to know that we're here to help.

Hello Wendy, I haven't had a problem with kidney stones. I've had UC since August, 2016. Good luck!

I was diagnosed with ulcerative colitis in 2005 and went into remission in 2012. I have been in remission ever since. I took Lialida and kept taking it maintenance to keep me in remission. Since I now have other inflammatory issues, I stopped lialida and take leufanomide for maintenance and inflammation. Good luck.

Never actually had a problem with kidney stones except for a one-time event relieved with laser surgery. Interested to see if anyone else has had a similar experience to yours and what their results were. Can imagine it would be quite painful. Hope you are able to find some answers.

Hi Wendy,
I have ulcerative colitis but have not had any experience with kidney stones. I have had UC for about 33 years. Good luck to you with your treatment. I hope you are feeling better soon.

anyone using Xeljanz for ulcerative colitis? side effects?

Thank you for responding! I am searching a few sites to get information from people that have used the medicines out there for UC. It’s frustrating to say the least... So thank you for your input!

Diagnosed with UC at 60. Was in remission 4 months with max dose of oral mesalamine; developed acute pancreatitis and had to discontinue. Terrified of biologics, but may be only resort left? Please share experiences...

I am all too familiar with blood in my stool. I was diagnosed with ulcerative colitis almost 2 years ago. It was a shock, to say the least, because my health has always been good. As a result, I have learned so much about this disease. What I can tell you is that blood dripping into the toilet may very well be hemorrhoids or even a fissure, and both are very treatable! I had those things in my 20s and 30s because of anxiety and always rushing in the bathroom... My first UC flare, years later, was bloody stool, and the blood, frequency and abdominal pain became progressively worse over a period of weeks. Diarrhea increased until it was 8-12 bloody loose stools daily. I lost 22 pounds in 2 months, while I waited for an appointment with a specialist. I am fortunate to have found a GI doctor that specializes in IBD. The best thing to do is to make an appointment with a gastroenterologist as soon as possible; many of them have long waiting times, so you may want to get on a cancellation list, so that if someone cancels, you may be seen sooner. A colonoscopy is the best way to diagnose so many of these conditions, but there are also blood tests that will show certain "markers" to see if it may be ulcerative colitis or Crohns disease. They can also do a sigmoidoscopy, which is less invasive than a colonoscopy. UC is typically lots of bloody diarrhea and there is abdominal pain. There are different levels of severity from mild to severe and there are many different treatments, from oral mesalamine to biologics. Mine has progressed in less than 2 years and I have been on oral mesalamine, rectal mesalamine, rectal steroidal foams (budesonide), and since the flares continue, biologics are the next step. It is a process, and in the meantime, you can keep notes on your daily food intake, daily bowel movements and any other significant things that happen in your daily life. It will be very helpful to both you and your doctor. What I have found helpful is drinking LOTS of water so you don't dehydrate; it also helps you go to the bathroom more regularly. Get up and move around so you're not sitting for long periods of time; get enough sleep, and the hardest thing of all - try to ease your anxiety. I know that's easier said than done, and I have been anxious my entire life. Try to take just a few minutes whenever you think about it to just "breathe" or focus on something as simple as looking out the window and watching a bird or whatever you might see at that moment in time. I saw my GI doc yesterday and while I'm preparing for the biologics (updated vaccinations) I have also made an appointment with another group of doctors that do things more naturally with acupuncture and herbal remedies. My GI doc does not believe they will get the UC back into remission, but he said it can help with anxiety and ease some of the symptoms. I owe it to myself to do this and you owe it to yourself to see a doctor to find out what's wrong! I'm sure you're having anxiety just worrying about your symptoms. Once you know what's causing them, you can get a diagnosis and a treatment plan that works for YOU. Good luck to you! Do this for yourself!!

So sometimes when I go to the bathroom, I get blood in my stool, some days it’ll be a lot the point of where it drips into the toilet, otherdays it just shows on the bathroom tissue. And I dont know if it’s just because i push too much, or if it’s because I sit for too long. I also get constant bloating, pressure problems, as well as watery stools, and less frequently, hard stools. But the bloating and pressure have been ongoing for years now, sometimes it makes me think that it could be a cause due to constant anxiety that I suffer from. If anybody has any possible idea as to what it could be let me know. Thank You.