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Posted By : Mareve - 9/21/2010 8:28 AM
Hey everybody,
Thank you so much for this wonderful forum. I am a 25 year old female who was diagnosed with Crohn's less than a month ago.  I am trying to be strong, but this is definitely a difficult thing to come to grips with.  Right now, my doctor has me on Lialda only. I am really hoping that it will work. So far my symptoms have not improved, but I have only been on it for 4 days.  Should I give it more time, or do you think I should be feeling slightly better by now? I'd love to hear your experiences.
Thanks so much!

Posted By : Pamywyner - 9/21/2010 10:13 AM
I'm curious, I see that you have been diagnosed with Crohn's as I was recently as well. Is yours considered mild-moderate-severe? Mine is severe. I looked up info on your med Lialda because I hadn't heard of it before and it says it's used for Ulcerative Colitis. ?? I'm wondering if this is also used for Crohn's?? Anyone have any info? I'm on Entocort EC to start with but, the dr wants me on something stronger and he's recommended 6MP. I'm very worried about the side effects but, just trying to learn about the different meds on this forum.

Mareve, I hope you get some answers! Good luck to you.

Posted By : Nanners - 9/21/2010 10:14 AM
It usually takes a little time to kick in and the docs usually start it along with a steroid such as Prednisone or Entocort to help quiet down the inflammation. If you are still feeling really rough, I would call the doctor back and discuss adding in a steroid. I am really surprised to be honest that one of the steroids weren't used from the get go. Its usually the steroid that first quiets the symptoms. Welcome to the forum by the way, we have alot of wonderful people who are more than happy to share what works for them. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Posted By : Nanners - 9/21/2010 10:15 AM
By the way I am maintained on the sister med to Lialda called Asacol. Even though these meds will show for UC they are used also in Crohns.
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Posted By : vixen - 9/21/2010 12:34 PM
Hello,
 
Unfortunately any drug takes time and your doctor can take one of two approaches either start with the mild drugs and work up or go straight for the strongest drugs and work down if need be.(it's never simple is it) My son was diagnosed last Nov so I can understand how difficult it is firstly to come to terms with and secondly a whole world of drugs are mentioned and you do endless reading on the benefits/risks etc(all of it terrifying)
As for experience, son was initially put on asacol(like Nanners) ironically enough that gave him the big d(not one of the symptoms that he had) he was then switched to pentasa(which I believe to be another 'sister' med) Entocort was then added to the mix along with 71/2 weeks of enteral nutrition. He was still experiencing problems though so he was weaned off of entocort and put onto azathioprine(same group as 6mp) Tbh I didn't want him to move up the ladder as far as the drugs were concerned and reading all the side affects didn't help much either. The combination of azath and pentasa are working for him(did come off the pentasa for a short while but relapsed) he has gained aprox 25lb and is doing well(barr the relapse)
Side affects are scary but then if they control the symptoms and allow you to lead a relatively normal and pain free life I guess that balances any possible side affects. 
Different people all appear to function better on different drugs or combination of drugs it is just about finding the right ones for you. Most drugs typically take a couple of months to kick in.
If son had a say in the matter the only drug he would not wish to go back on is the entocort(caused really bad acne) but many do not experience this.

Posted By : Mareve - 9/22/2010 10:33 AM
Thank you so much, everyone.  I believe my symptoms are supposedly "moderate" (although boy oh boy do they feel horrible) which is why my doctor started me on Lialda only. I have patchy inflammation in my colon (colitis), but they are still unsure as to whether my small intestine is involved. I suppose that if it is, the Lialda may not work as well.
 
I am horrified of going the next step up when it comes to drugs. I do not want to feel nauseous or awful due to side effects. I don't want to gain enormous amounts of weight due to steroids. I just want a normal life again!

Posted By : Mareve - 9/22/2010 10:35 AM
Nanners said...
It usually takes a little time to kick in and the docs usually start it along with a steroid such as Prednisone or Entocort to help quiet down the inflammation. If you are still feeling really rough, I would call the doctor back and discuss adding in a steroid. I am really surprised to be honest that one of the steroids weren't used from the get go. Its usually the steroid that first quiets the symptoms. Welcome to the forum by the way, we have alot of wonderful people who are more than happy to share what works for them. Hugs!
Nanners - do the steroids seem to have nasty side effects?

Posted By : Nanners - 9/22/2010 10:44 AM
Yes they both can have some side effects, the Entocort seems to be less systemic and have less side effects. But unfortunately these are the best meds to get the inflammation down quickly. And you should know that many of our meds have side effects, unfortunately with our disease though you must ALWAYS be on meds. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Posted By : ronaldyoh - 4/2/2016 8:43 AM
Mareve Villanueva Pagarigan? is that you? Lialda isn't a prescription drug, it's actually a website..

Posted By : crohnie1985 - 4/4/2016 11:39 PM
Greetings, I was also 25 when Crohn's was diagnosed, it's 30 years later and I have seen lots of new therapies over the years, a lot more that what was available back then. Not gonna lie it's not been an easy road to travel, but I am still here and successfully raised 3 wonderful kids. Currently prescribed Humira and it has helped with the symptoms pretty good. Hang in there :)

Posted By : myaurora - 4/7/2016 9:56 PM
@crohnie1985, it's very encouraging to know that you have spent 30 yrs with this... what has been your experience about this affecting your quality of life in general.

I have my doc appointment next week. I have had inflammation over last four years in my terminal ileum (also ongoing hyperthyroid). Now I did a capsule endoscopy last month and got a note from the doctoe that he wants to discuss about certain erosions. So I am exploring and learning.

@Mareve - have you tried any natural treatments and diet route... I am seeing that SCD diet helps to completely heal yourself from this. I am sure you would have looked into all this..

what's a general experience here about the SCD diet...

Posted By : scifigal2k - 4/8/2016 8:44 AM
@myaurora, if you look at the dates, this is a pretty old thread and you may not get answers to your questions. It would be worth it to start a entirely new thread by pressing "Post New Topic." That way you can introduce yourself and share your experiences/questions.
CD, gastroparesis, fibro, arthritis, GERD

Meds: Remicade

"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

Posted By : myaurora - 4/8/2016 10:19 AM
Thanks. will do

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