Ulcerative colitis - worried about medications

Posted by laura l @laural1, Aug 12, 2011

grandson 8yrs old has had colitis since 3yrs old, now facing prospect of surgery, as he has been on steriods for to long, Anyone who has child of this age, to share information…..we are in Ca with Drs in Roseville pediatric center

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@dval

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…

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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.

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@ejlouboutin16

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.

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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!!

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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…

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@dval

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…

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Kindly send me the medication for hemorrhoids

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@ssin20

This is my first time postings, so excuse me for any mistakes. I was diagnosed with ulcerative colitis 23 years back. I was put on Asacol and prednisone. The beginning 6-7 years were really exhausting with flare up everytime the steroid was cut back. After I was introduced to azathioprine in 2003, my symptoms started getting better and the inflammation really got controlled. Since, then I had very few minor flares that got controlled with enemas. But, this year my flare up has really come back, with lot of inflammation in the entire colon, the doctor is thinking of switching me to a biologic Entyvio. I am really scared as I read about the side effects of this drugs, has anyone ever had experience with it? Any help is greatly appreciated.

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Sorry to hear about your situation. Have you tried diet at anytime during these years? I went on a Gluten Free diet almost 6 years ago and my bouts with colitis are rare unless I inadvertently eat something with gluten in it. It really isn't a hard diet to follow and many shack foods, are gluten free as well. Wishing you the best..

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@ssin20

This is my first time postings, so excuse me for any mistakes. I was diagnosed with ulcerative colitis 23 years back. I was put on Asacol and prednisone. The beginning 6-7 years were really exhausting with flare up everytime the steroid was cut back. After I was introduced to azathioprine in 2003, my symptoms started getting better and the inflammation really got controlled. Since, then I had very few minor flares that got controlled with enemas. But, this year my flare up has really come back, with lot of inflammation in the entire colon, the doctor is thinking of switching me to a biologic Entyvio. I am really scared as I read about the side effects of this drugs, has anyone ever had experience with it? Any help is greatly appreciated.

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@ssin20 Goo morning and welcome to connect we all care for each other and try to help. As baz10 said diet is so important with what you have . fruits and vegetables not much sugar and gluten free as much as possible ,no fried food or spices. At this point in history it is easier to get more gluten free food as there are so many stores carrying G.F. and websites you can order from . Research them and about colitis to see what you can do yourself. Good luck

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This is my first time postings, so excuse me for any mistakes. I was diagnosed with ulcerative colitis 23 years back. I was put on Asacol and prednisone. The beginning 6-7 years were really exhausting with flare up everytime the steroid was cut back. After I was introduced to azathioprine in 2003, my symptoms started getting better and the inflammation really got controlled. Since, then I had very few minor flares that got controlled with enemas. But, this year my flare up has really come back, with lot of inflammation in the entire colon, the doctor is thinking of switching me to a biologic Entyvio. I am really scared as I read about the side effects of this drugs, has anyone ever had experience with it? Any help is greatly appreciated.

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I have been suffering with uc for 5 years. I have tried Humira, Entyvvio and now Sterlera. So far I'm not in remission.
What to do?

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@johnson53rl

I have been suffering with uc for 5 years. I have tried Humira, Entyvvio and now Sterlera. So far I'm not in remission.
What to do?

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I had been on Entyvio (remission for 13 months, then stopped responding). Next biologic was Stelara, which just made things worse. I have been hospitalized 3 times in two months, dehydrated and put on IV steroids. I am currently on high doses of oral prednisone and just started Remicade (had first loading dose infusion last week). I will have the second loading dose on Wednesday and the third 4 weeks after that. If the Remicade doesn't work, I will be scheduling a proctocolectomy because I cannot stay on this roller coaster of hell. I have only had UC a little less than 4 years and it has escalated to pancolitis. My advice would be to talk to your doctor constantly and stay on top of things. Sometimes the biologics take several weeks to work. I have noticed a slight decrease in symptoms since starting the Remicade, so I am almost hopeful…. The prednisone is the worst for me – I shake constantly and I am miserable. This disease has ruined my life. I wish you the best and I hope and pray for a cure for all of us suffering with this unpredictable, debilitating disease.

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@uconn

I am looking for information of Entiviyo for UC. What are side effects that real people have suffered?

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I may not be the best to answer this but….currently I’m still on Entyvio & it worked amazingly (the light went out!). No side effects of any kind! However after 10 months I’ve had my 1st flare. Working w/ dr to get it under control w/ additional meds (hoping to stay on Entyvio). Hope it gives you as much relief as it did me….but for longer.

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Good evening. I have UC for 18 plus years. Took numerous medications from remicade to Stelara currently on Xeljanz 10 mg twice daily. Which worked very good. Unfortunately my insurance made me go down to Xeljanz 11 mg ER. After a few weeks I am back in a flare. So back to prednisone and Xeljanz 10 mg twice daily. Drs are concerned that I might not have the same response that I originally had with the Xeljanz. Has anyone experience the same thing? Thanks

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@jjob73

Good evening. I have UC for 18 plus years. Took numerous medications from remicade to Stelara currently on Xeljanz 10 mg twice daily. Which worked very good. Unfortunately my insurance made me go down to Xeljanz 11 mg ER. After a few weeks I am back in a flare. So back to prednisone and Xeljanz 10 mg twice daily. Drs are concerned that I might not have the same response that I originally had with the Xeljanz. Has anyone experience the same thing? Thanks

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@jjob73, welcome. I moved your question to this existing discussion about UC:
– Ulcerative colitis – worried about medications https://connect.mayoclinic.org/discussion/ulcerated-colitis/

I did this so you can easily connect with fellow members like @mauionmymind @dval @ejlouboutin16 @baz10 @ssin20 @johnson53rl who are dealing with ulcerative colitis and talking about medications. I'll also tag @trying1975 @candrgonzalez who have experience with autoimmune conditions and taking Xeljanz (tofacitinib).

Did your doctors explain why they think your response to Xeljanz (tofacitinib) may not be as good this time?

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