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New here, new to Crohn's

Hi all. Just wanted to introduce myself to the forum.
Was diagnosed just a few months ago. Been on Budesonide and Asacol ever since. Somewhat better than I was but still sore fairly frequently.

No insurance so went through the county clinic and am grateful for it but it didn't include much consultation or information to say the least. So I'm here just hoping to gather some kind of feel for what this means and maybe some mutual support with others who know the deal.

Thanks and hoping all are fairly well tonight.
 

Judith

Crohnsforum Science Advisor
Welcome to CrohnsForum BlueMuse. I am sorry your meds have not helped your pain and symptoms more. :(
You can see more information about a variety of topics by clicking on the Underlined Links. For example, see Budesonide is underlined in your post.
Out of curiousity how did they diagnose your Crohn's? Blood Tests? GI Series?
Welcome to the Forum. I hope you are feeling better quickly. :)
 

David

Co-Founder
Location
Naples, Florida
Hey there bluemuse and welcome to the community :) I'm glad you joined.

I assume you're on 9mg of Budesonide, correct? Did they say how long you're going to be on it before you start to taper? Or do they plan to keep you on it long term? And do you know if your Crohn's is in your small intestine, large intestine, or both?
 
Hey thanks for the welcomes.

Honestly, I don't know how they diagnosed it. There were a number of tests...upper and lower GI's, CT scans, blood work. Basically, she said she found ulcers...I think in the small intestines mostly. The pain is all fairly high up and I don't have any colicky symptoms or stool problems at all. Just pain and inflammation. Fatigue, etc.

I got a prescription for Budesonide for 3 months and now that I'm on the third month I'm thinking I should start tapering. But I'm a bit nervous about it as I do still have pretty constant low-level pain/inflammation even on the steroids. So I'm assuming coming off I'm going to start feeling worse. ???
Also, I was originally prescribed Pentasa, which I understand focuses on a specific area of the intestines...but the County only carries Asacol so I have been on that instead but wonder if it is not designed for a different area of the gut than where my problem lies. I really need to see the doctor again but going through the County means long eating times...

Any info or advice is GREATLY appreciated. Thanks in any case for the support. It's great to find this site. Hope all are well tonight.
 

David

Co-Founder
Location
Naples, Florida
Asacol is only designed for the colon. If you have inflammation in your small intestine, it probably won't help it one bit.

If you taper off Entocort and are only on Asacol, I would be very concerned. I'd discuss more powerful medications with your doctor such as azathioprine or even biologics. That's just me though :)
 
Thanks for the feedback David. Honestly, it means a lot.

It also confirmed my suspicions about the Asacol. The GI doc just told me (via a nurse) that I should drop down to 6mg budesonide now and will be starting on Pentasa when it arrives through the mail in a month.
Having no insurance leaves me with really limited access to the doctor and medication options. As it is, I'm having to borrow money to pay for the meds through a Canadian pharmacy...and I don't know that they'll even work for me! Very frustrating and really, really scary honestly.

Thanks heaps for the info and support. : )
 
Hey everyone, I am new to this forum as well, just signed up today.
I was diagnosed with Crohn's and Ulcerative Colitis in April after being hospitalized due to a blockage. Though I was just diagnosed, the doctors believe that I have been dealing with this since I was 10yrs old because of all the problems I had had back then. Im 20 now and this is all a shock to me. Im not excatly sure what I am dealing with or what to expect. So I am really hoping to learn some stuff from this forum! Any advice is greatly appreciated!

I was taking Imuran and Pentasa for a couple months only to deal with the pain and nausea getting worse (those are my worst syptoms). So my doctor finally switched me to Remicade even though they didnt think I would be a good candidate for it due to consistent infections (other health problems). I have been on it for about 3 months. It seemed to work very well at first, but here lately I have felt like I am going back to the same boat I was in when I started it. Plus it is flaring up my other health problems. So my doctor just prescribed me with Hyoscyamine. It seems to be helping things a little bit more now.

Also I was wondering if anyone else on the Remicade was going through crazy mood swings and depression??? Thats really been affecting me lately! I heard nothing research wise has been confirmed that it could cause that but I dont think Im the only person on Remicade dealing with it.

So basically Im just in need of some advice and reassuance that everthing will be ok!

Current Medications:
Remicade 30mg every 6-8 weeks
Pentasa 500mg 3x daily
Hycoscyamine .125mg 3x daily
Vitamin D3
 

Judith

Crohnsforum Science Advisor
Thanks for the feedback David. Honestly, it means a lot.

It also confirmed my suspicions about the Asacol. The GI doc just told me (via a nurse) that I should drop down to 6mg budesonide now and will be starting on Pentasa when it arrives through the mail in a month.
Having no insurance leaves me with really limited access to the doctor and medication options. As it is, I'm having to borrow money to pay for the meds through a Canadian pharmacy...and I don't know that they'll even work for me! Very frustrating and really, really scary honestly.

Thanks heaps for the info and support. : )
I wanted to show you our wiki page on [wiki]Social Security Disability Benefits[/wiki]. Hopefully it will help with your financial situation.

Also, many Pharmaceutical companies have programs if you cannot afford your medication. For example check out:

[wiki]Remicade[/wiki]

and if you dont mind being a research subject check out [wiki=Clinical Trial]Clinical Trials[/wiki]

Hope it helps. :)
 

Judith

Crohnsforum Science Advisor
Hey everyone, I am new to this forum as well, just signed up today.
I was diagnosed with Crohn's and Ulcerative Colitis in April after being hospitalized due to a blockage. Though I was just diagnosed, the doctors believe that I have been dealing with this since I was 10yrs old because of all the problems I had had back then. Im 20 now and this is all a shock to me. Im not excatly sure what I am dealing with or what to expect. So I am really hoping to learn some stuff from this forum! Any advice is greatly appreciated!

I was taking Imuran and Pentasa for a couple months only to deal with the pain and nausea getting worse (those are my worst syptoms). So my doctor finally switched me to Remicade even though they didnt think I would be a good candidate for it due to consistent infections (other health problems). I have been on it for about 3 months. It seemed to work very well at first, but here lately I have felt like I am going back to the same boat I was in when I started it. Plus it is flaring up my other health problems. So my doctor just prescribed me with Hyoscyamine. It seems to be helping things a little bit more now.

Also I was wondering if anyone else on the Remicade was going through crazy mood swings and depression??? Thats really been affecting me lately! I heard nothing research wise has been confirmed that it could cause that but I dont think Im the only person on Remicade dealing with it.

So basically Im just in need of some advice and reassuance that everthing will be ok!

Current Medications:
Remicade 30mg every 6-8 weeks
Pentasa 500mg 3x daily
Hycoscyamine .125mg 3x daily
Vitamin D3
Welcome to Crohnsforum AmandaMB. I am so sorry you are having so much trouble with the Remicade. Here is a link to some posts discussing it:Remicade Club

also, you might be interested in the Wiki page on [wiki]Fatigue[/wiki]
I hope you are feeling better soon. :)
 
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