I was diagnosed with Crohn's in October at the age of 46 after two years of problems and four colonoscopies. At the time of my diagnosis my GI said it was mild and be mindful of joining any support groups because people are much worse than me. Now for the past three or four weeks food has not been my friend and was just told I am having a flare. I will be having another colonoscopy next week and am not looking forward to it. I was also just put on budesonide in addition to the lialda and omeprazole I am already taking. Can anyone tell me are the steroids a temporary medicine? I was given a 90 day supply and didn't get a chance to talk to my GI to ask the question. Thank you.
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New to forum
- Thread starter trajk1612
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Angrybird
Moderator
- Location
- Hertfordshire
Hello and welcome to the forum 
The aim with steroids is for them always to be used in the short term to get inflammation under control and the tum back to a settled state. Usually a maintainence med will get then get introduced when you start lowering the steroid dose so there is some overlap and then the ideal is the steroids are stopped and the long term med takes over the treatment for your crohn's. Out of interest had you been following anything diet wise, do you notice whether certain foods do make symptoms worse?
Wishing you all the best with the upcoming scope and please keep us updated on how things go.
AB
xx
The aim with steroids is for them always to be used in the short term to get inflammation under control and the tum back to a settled state. Usually a maintainence med will get then get introduced when you start lowering the steroid dose so there is some overlap and then the ideal is the steroids are stopped and the long term med takes over the treatment for your crohn's. Out of interest had you been following anything diet wise, do you notice whether certain foods do make symptoms worse?
Wishing you all the best with the upcoming scope and please keep us updated on how things go.
AB
xx
There doesn't seem to be any specific food that bothers me except popcorn. The only meal that doesn't bother me is breakfast. The Lialda is supposed to be my maintenance medication. The doctor doubled my dose when I saw her on the 4th. I am really hoping the steroids help because this has been a miserable month and the pain seems to be getting more constant.
Dukeis
Dynastic Overlord
Wonder why your doctor told you to be mindful of support groups I find that strange. Are they telling you the Crohn's is just in the colon? The reason I ask is because Lialda doesn't work but in the colon. As Angrybird has said the steroids are not a long term treatment. BTW you said your doctor is a her. Would you happen to be seeing a doctor across the river from you at Barnes/WUSM?
I have to say, support groups were not my friend when I was first diagnosed. They were scary and no one seemed to have a happy ending. That was a long time ago and I was young. I am the same age as you are now. I do not personally know anyone with a success story (other than myself - in remission for 20 years). That is why I took to the internet. I had a desire to search for others like me and also to help other people. I want people to know that you can be ok and have a great life.
That being said, support forums are quite a different thing. I am new to this forum and extremely impressed that they have a spot for "Success Stories". This is a wonderful thing, especially for newly diagnosed people. It gives them HOPE!! I would not have joined otherwise.
I was on short term steroids. I did not like taking them, but if I hadn't fought it, and taken them sooner, I don't think I would have gotten so sick. Back when I took them, there were not a lot of treatment options though. Today, there are a lot of other options so if the steroids don't seem to help, you can try something else.
I have learned that if breakfast feels good, eat your heart out at breakfast!! I have some odd eating habits and often eat large meals early on and then graze or eat soup or cereal later in the day. I try to stay away from large quantities of food in the evening or later at night because I almost always wake up in the middle of the night with gut pain. I think my body just can't digest right after dark, lol. Grazing works best for me.
So where is the area of your disease?
That being said, support forums are quite a different thing. I am new to this forum and extremely impressed that they have a spot for "Success Stories". This is a wonderful thing, especially for newly diagnosed people. It gives them HOPE!! I would not have joined otherwise.
I was on short term steroids. I did not like taking them, but if I hadn't fought it, and taken them sooner, I don't think I would have gotten so sick. Back when I took them, there were not a lot of treatment options though. Today, there are a lot of other options so if the steroids don't seem to help, you can try something else.
I have learned that if breakfast feels good, eat your heart out at breakfast!! I have some odd eating habits and often eat large meals early on and then graze or eat soup or cereal later in the day. I try to stay away from large quantities of food in the evening or later at night because I almost always wake up in the middle of the night with gut pain. I think my body just can't digest right after dark, lol. Grazing works best for me.
So where is the area of your disease?
She told me to be mindful because people are a lot worse off than I am. Yes she is at Barnes/Wash U. After seeing 3 different GI's in IL who gave me 3 different diagnoses she finally gave me an answer. I haven't been told where my disease is. I will ask when I go back for the follow-up after my scope. Does it make a difference where it is?
As Dukeis suggested, different medications target different areas.
Dukeis
Dynastic Overlord
As others have already said different med target different areas. Wonder why she never told you where the Crohn's is active. If she is who I saw there I think I know why she wouldn't want you to become more informed. She doesn't like to be questioned at all.
David
Co-Founder
- Location
- Naples, Florida
Hi there and welcome to the community!
Dukeis nailed it. You need to find out where your Crohn's is located. If the disease is in the small intestine, you are on the wrong medication. Heck, considering this Cochrane review of mesalamine (the active ingredient in Lialda) one could argue that you're on the wrong medication no matter what as it's shown to not be very good for Crohn's disease. But definitely if it's in the small intestine.
Dukeis nailed it. You need to find out where your Crohn's is located. If the disease is in the small intestine, you are on the wrong medication. Heck, considering this Cochrane review of mesalamine (the active ingredient in Lialda) one could argue that you're on the wrong medication no matter what as it's shown to not be very good for Crohn's disease. But definitely if it's in the small intestine.
Dukeis
Dynastic Overlord
I don't know if you can name doctors in the post. There is a place to review your doctor if you want to do that. Remember each person can have total different experience with the same doctor. Also let me clarify I said questioning the doctors actions, I never meant asking questions.
Angrybird
Moderator
- Location
- Hertfordshire
My thoughts are that the Lialda is not going to do the job for you considering you have flared on it already. With regards to diet try and see if very bland, low residue foods help ease things at all for you.
Hi there and welcome fellow newbie -
Be sure to ask you GI what your vitamin levels are, especially Vitamin D. This is a very important piece of the puzzle.
Be sure to ask you GI what your vitamin levels are, especially Vitamin D. This is a very important piece of the puzzle.
Well here's my update. Unfortunately there won't be a scope on Friday as I have apparently caught the flu. Since my GI suspects a flare because of the constant diarrhea how do I know if the fever isn't related to the crohns? It got up to 103 earlier but seems to be going back down now. My family practice doctor told me if I have any fever tomorrow morning he is admitting me to the hospital. This is terribly frustrating for me because he is telling me while I am on the steroids I will probably get sick a lot and I never used to get sick. Thanks in advance for reading my vent. My kids are great but my family just doesn't understand this and right now I am just about ready to scream.
David
Co-Founder
- Location
- Naples, Florida
It can be hard to tell. Other than the fever, do you have flu-like symptoms? And I agree with your family practice doctor. Flaring and a high fever at the same time needs to have some stuff checked and ruled out.
Hi trajk1612,
Welcome to the group. This group is wonderful because people with mild, moderate and severe Crohn's symptoms post here. There is a wealth of information in the subforums here.
Entocort is a steroid medication that is helpful for people with right sided inflammation. The medication does not break down until it gets to the intestines so it has much less side effects than prednisone. That being said, it is still a steroid and doctors generally do not want to keep a patient on it permanently. I was prescribed Entocort along with Asacol and 6mp and I stayed on Entocort for several months until the 6mp built up into my system and became effective.
Since you are new to the forum,you might want to go on the Treatment subforums and read up on the introductions to the various Crohn's medicines. This might be very helpful to you.
Welcome to the group. This group is wonderful because people with mild, moderate and severe Crohn's symptoms post here. There is a wealth of information in the subforums here.
Entocort is a steroid medication that is helpful for people with right sided inflammation. The medication does not break down until it gets to the intestines so it has much less side effects than prednisone. That being said, it is still a steroid and doctors generally do not want to keep a patient on it permanently. I was prescribed Entocort along with Asacol and 6mp and I stayed on Entocort for several months until the 6mp built up into my system and became effective.
Since you are new to the forum,you might want to go on the Treatment subforums and read up on the introductions to the various Crohn's medicines. This might be very helpful to you.
Welcome to the forum. I hope this flu, flare or whatever does not last long. There is great information on this site. Be a well informed patient. The folks here will help you think of things to ask and discuss with your doctor. Write down your questions and concerns before going to visits, it will help clear things up.
Next question. I received IV fluids the past two days yet I remain light-headed. My doctor said between the virus I am fighting and the diarrhea I am still dehydrated and I need to drink as much fluid as possible. I have been drinking at least 6-23 oz bottles of water a day and am going to the bathroom frequently. What is the best thing to drink besides water to help?
David
Co-Founder
- Location
- Naples, Florida
Mineral water (water with the calcium and magnesium) is about as good as it gets in my opinion. Others may have better ideas though.