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

@ejlouboutin16

@contentandwell, I will try to see a doctor as soon I get health insurance back, so it could be at least a couple of months before I find anything. Inclusively, besides bloating, I tend to notice anal itching and even cramps in my case. So i personally hope that it’s just something as minor as IBD or fissure/hemorrhoids

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@ejlouboutin16 That's too bad that you need to wait to see the doctor. I do not have itching, and not really cramps, more of an upset stomach frequently when after eating dairy and something else that I have not yet isolated.
You may be confusing IBS with IBD. They are not the same. If you google IBS vs IBD you will find more information about both of them, but frankly, I find it sort of confusing. That's why I think I do need to see a doctor about it, so that he or she can sort it out and suggest what might help.
JK

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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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@contentandwell I just hope, that it’s nothing cancerous, like I mean I’m just 21, but I just want to be sure

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@ejlouboutin16

@contentandwell I just hope, that it’s nothing cancerous, like I mean I’m just 21, but I just want to be sure

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@ejlouboutin16 I totally understand. That is a concern for me also, which is why it is important to get checked out by a gastroenterologist.
I have two different things that require an appointment with a gastro, but these days at the major medical centers the gastros specialize so much that I will need to go to two! One for my Barrett's Esophagus, and a different one for this.
JK

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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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Hi. When I posted this, I thought space was limited and didn’t provide many details. I am a 62 year old female, diagnosed with UC 2 years ago. I have been on oral mesalamine, which worked for 3 months until I developed acute pancreatitis. Prior to that, I had been prescribed Canasa (suppositories), Uceris rectal foam, hydrocortisone (oral and rectal). GI doc is pushing ENTYVIO and I am terrified of possible side effects. I am in good health, never smoked, do not drink, eat a healthy diet and exercise regularly. I am about to make an appointment with integrative medicine doctors to try acupuncture and herbal treatments like aloe vera and Boswellia? Has anyone been on Entyvio or more natural things and have they helped? The fact that I developed pancreatitis from 8.4 G of mesalamine daily was frightening and GI doc said that was a rare side effect. This is a horrible debilitating disease and I just want my life back. Has anyone had good or bad results with their UC treatment? Thank you so much!

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@dval

Hi. When I posted this, I thought space was limited and didn’t provide many details. I am a 62 year old female, diagnosed with UC 2 years ago. I have been on oral mesalamine, which worked for 3 months until I developed acute pancreatitis. Prior to that, I had been prescribed Canasa (suppositories), Uceris rectal foam, hydrocortisone (oral and rectal). GI doc is pushing ENTYVIO and I am terrified of possible side effects. I am in good health, never smoked, do not drink, eat a healthy diet and exercise regularly. I am about to make an appointment with integrative medicine doctors to try acupuncture and herbal treatments like aloe vera and Boswellia? Has anyone been on Entyvio or more natural things and have they helped? The fact that I developed pancreatitis from 8.4 G of mesalamine daily was frightening and GI doc said that was a rare side effect. This is a horrible debilitating disease and I just want my life back. Has anyone had good or bad results with their UC treatment? Thank you so much!

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I don't have UC, but you might find a separate forum on the Mayo site just for IBD. Might find more help there. Hopefully a moderator will jump in and direct you to the right place. Sorry you are having these problems.

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@tiss

I don't have UC, but you might find a separate forum on the Mayo site just for IBD. Might find more help there. Hopefully a moderator will jump in and direct you to the right place. Sorry you are having these problems.

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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!

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@dval

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!

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Best of luck to you!

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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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Thanks so much! I see my GI doc on Tuesday and I am armed with a list of questions and several clinical trials. 🤞

Liked by tiss, courtneyt

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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…

Jump to this post

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.

REPLY
@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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@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

REPLY

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…

REPLY

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.

REPLY
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