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Just discovered I have Crohn

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Crohn's Disease
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Posted 1/15/2008 1:32 PM (GMT 0)

Hello everyone!

I am from Brazil and new in this forum, I have just discovered that I have Crohn's Disease and I am totally lost, I could not find any good virtual community in portuguese and few information too.

I think it began when my father died in 2005, my BM incresead a lot, but I thought at first that could be just the stress and sadness of loosing my father, but thing go on for 2 years and in NOV/2007 I checked some bruises in my legs, a lot of them, and they were really painful not mention that my ancles were very swollen too, beside this I had a lot of pain in my joints, I could not get up from the bed, and I was having 10 - 12 BM/Day, it was terrible, I lost 20lbs in 2 weeks, I went to the ER 7 times through this period and the doctors simply did not know what I had. After the 7th time at the hospitable, one of them decided  to do a Blood Test, and the result was terrible, I had a serious anemia, after that I did a colonoscopy and the result was Crohn's disease. I am taking the meds, but I do not know if it is working, I still feel a very strong pain in my belly, and it seems that everything that I eat makes me get ill again...

I am taking Pentasa - mesalazina 3 times a day...My doctor said that I will enter in remission, but my question is, how long to enter in remission?

Does anyone here follow a special diet?

Thanks and sorry about any english error!!

Veronica Nunes

Posted 1/15/2008 1:53 PM (GMT 0)
Hi and welcome to HW!

If you are only on pentasa I seriously doubt that you will achieve remission. You need to go back to your dr. or find a new one, and tell him that the pentasa isn't working and that you two need to figure something else out.

As far as diet, it varies from person to person. What bothers some doesn't bother others. You can keep a food journal to see if there is a pattern to increased symptoms. Some on here follow the SCD diet or the Makers diet.....

Those painful bumps/bruises on your legs are likely erythema nodosum. I have had those when I was really sick. I was put on 60 mg of prednisone, and they went away in a few weeks. It also helped my joint pain and stomach issues until the imuran could get in my system.

Don't worry about your English...you did a good job! :)
Posted 1/15/2008 2:26 PM (GMT 0)
Veronica,

Welcome, I agree with Chroniemom. Pentesa is a good medication once you have acheived remission. I would go back to the doctor and have them try a stronger med. It's usually prednisone. Pred should put you in remission and then you can continue with pentasa.

My suggestion for you and all people who just found out about Crohn's is to do lots of research. Ask question and don't despair. It does get better.
Posted 1/15/2008 3:15 PM (GMT 0)

Hi Veronica and welcome to the board, I am from Greece and I also suffer from Crohn's the last 9 years.  Crohn's is a very rare disease here in Greece and I assume Brazil too, maybe that's why it was so difficult for you (and me) to get a diagnosis.

Don't worry you will achieve remission, but Pentasa is a very mild medicine and you may need something stronger to control the disease.  If you see that your symptoms are not better, maybe you should get in touch with your doctor to find a right combination of drugs.

Don't worry, you will get there, it just takes some time.

Christina tongue

Posted 1/15/2008 3:34 PM (GMT 0)
Hi, good luck with the Pentasa. The recommended dosage to achieve remission is 4 grams a day. It is a mild medicine...takes a few weeks to achieve full strength.

If it works for you, great, but I agree with the others that you might have to use something stronger to achieve remission. After that, you could try using the Pentasa for maintenance medication.

Pentasa is said to have fewer side effects than other medications, which is probably why your doctor wants to give it a try before jumping to stronger drugs.   

Also, I have seen some doctors claim, at conferences, that medicines like Pentasa are less effective after a patient has been put on prednisone.

Posted 1/15/2008 5:06 PM (GMT 0)
Hi guys!!
Thanks for your reply, actually my doctor said something about this prednisone, but he also said that the side effects are kind of bad, that is why she decided to start only with Pentasa, 3mg/day, it is doing a week today. I will see her again this week, maybe she could get me something else.
Another thing, is it Pentasa very expensive in your country too?? Here in Brazil is something about $250.00 the box with 50 pills.

Athensgirl, I think you are right, CD is kind of rare here in Brazil, the doctors do not seem prepared to diagnose it. One of them suggested that I had HIV because of the diarrhoea, can you believe that, another one said I had cancer, and another was so unpleasant that suggested that is everything in my head, that I should see a psychiatrist. I did a lot of Exams, for everthing, even for tuberculosis, hepatitis B and C, Syphilis, HIV, everything resulted Negative.

My doctor suggested that I should try to cut milk products at least while I am in flare. Do you guys agree with this?


It was good to find this forum...I was feeling te only person on earth with this problem...Never heard before, and there is few information in portuguese, almost of them say the same thing.

Thanks guys!! You are very nice!

Veronica Nunes

Post Edited (Veronica Nunes) : 1/15/2008 10:09:05 AM (GMT-7)

Posted 1/15/2008 5:21 PM (GMT 0)
Welcome Veronica! over the 10 years I went without diagnosis I was also told It was in my head. I know how you feel. I was a little relieved to know I have CD it means I was right all these years and something was wrong! Good luck with your new medications! Give them some time to work. I am still trying to get my meds right with my Doctor so it may take a while. Karen
Posted 1/15/2008 6:32 PM (GMT 0)
Hi Veronice and welcome to Healing Well. On your question about milk products, many of us do have to avoid it as it doesn't agree with most of us.
Posted 1/15/2008 9:58 PM (GMT 0)
Hi Veronica,
Welcome to Healing Well. There are alot of good ppl here. For any advice questions and a good place if you need to just vent.
Posted 1/15/2008 11:44 PM (GMT 0)
Hi Veronica,

Welcome and I hope you can sort out your medications soon. I waited a long time for my symptoms to receed with the medications the doctor prescribed when I was first diagnosed. Finally I called the GI and told him things were not improving. He said "why didn't you let me know earlier, as I would have put you on something stronger? " He had no idea things were not going right - his opinion is no news is good news, and I later realized that he is not psychic! Since then, I have developed a very good report with him. I also come to this site to check other people's findings. I've been helped a great deal from so many people here, because as you say, you sometimes feel you're the only one with certain unusual symptoms, until you check in with the forum. We often have experienced similar problems.

I hope you start to feel better soon,


Bev
Posted 1/16/2008 12:32 AM (GMT 0)

Hello & Welcome,

I am also new here.  I just learned I had Crohn's less than 2 months ago.  I spent 13 days  in the hospital then.  I am also taking Pentasa, but I just started that last week.  I was taking something similar called Asacol, but it would not dissolve.  I am also taking Prednisone and beginning to take Imuran.  Maybe you can ask your dr. about Imuran.  First, it was explained to me that I had to take the Prednisone and as I taper off of it, I will increase the Imuran for a long term drug to keep me well.  I am now back at work.  You will need to be able to keep your blood checked for side effects.

Also, there are many things you may take that are not prescription.  I take iron, calcium, vitamin D, a multivitamin, and a probiotic.  Like you, I am new to all this.  I am so glad to have this forum.  I am not going to give you much advice because I do not know much yet.  But, I can tell you that you have come to the right place to learn.  The people here are great.

Posted 1/16/2008 1:44 AM (GMT 0)
georgiabeach, thank you so much for the really kind words about the people on our forum! You are right, the people here are fantastic and I feel blessed every day to have people to talk with who understand CD because they deal with it everyday too. Welcome to both of you!
Posted 1/16/2008 5:25 AM (GMT 0)
Prednisone does cause a lot of side effects. I hope the Pentasa helps.

Meanwhile, I noticed your question about diet was not answered. 

Some people with Crohn's have found  "Specific Carbohydrate Diet," also known as the SCD diet to help them. You can find more information about the SCD at www.breakingtheviciouscycle.info

The SCD diet is also explained in the book, "Breaking the Vicious Cycle." The book has been translated into Spanish, "Romper el Circulo Vicioso." I don't know whether it is also in Portuguese. 

Another diet that seems to help other people with Crohn's is the "Maker's Diet" by Jordan Rubin. 

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