just diagnosed

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miki
New Member


Date Joined Apr 2010
Total Posts : 2
   Posted 4/25/2010 3:18 AM (GMT -7)   
Hi
My 20 years old daughter has just been diagnosed with Crohn. She had horrible Stomach Aches first Appentix was suspected but after CT that was ruled out.
For the past three days she is suffering from severe diarrea- how long do these flare ups last? What meds work best for you.?

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 4/25/2010 5:49 AM (GMT -7)   
I'm so sorry to hear about your daughter.
I would seek a good GI doctor so the she can be treated properly as there are many medicines that can be used. Some will work and some won't, it is all trial and error until you find the best one.
Good luck to you and your daughter and I pray that she will find remmission soon.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/25/2010 7:23 AM (GMT -7)   
Hi Miki, and welcome to the Healingwell forum. When first diagnosed with Crohns it can take some time to find the right med for each of us. So don't lose hope. I want you to know that while Crohns is incurable, it is not a death sentence. I was diagnosed at 18 and am now 52 years old. I have lived with this darn disease for nearly 35 years. I have 3 adult daughters, 5 grandbabies and been at the same job for over 20 years. So as you can see I have still be able to enjoy life. While we do have some bumps in the road occasionally, within time you will learn little tricks to help.

One thing I will tell that I have learned with this dd (darn disease) is that it must be treated at all times. You should always be on some type of maintainence medication at all times, even when feeling better. If you don't treat it, it can still be in there doing its damage unbeknowst to you until all of sudden you are very sick. This happened to me, and I wound up having to have emergency surgery and it took me years to get back to remission.

Also, diet is very individual for each of us. One suggestion might be a good idea to keep track of which foods irritate you and those that agree with you. I personally follow a low residue diet all the time, as this is what works best for "me". Some others have had success with the SCD or Makers Diet, but for some these have been too restrictive, while others have successw with them. But your daughter will need to find what works best for "her".

Now on to my questions for you. Have they put her on any meds yet? The usual starting meds while in a flare are Prednisone or Entocort (steroids) and something like one of the 5ASA meds, such as Asacol, Pentasa or Azulfidine. The steroids are fast acting meds that help to get things quieted down while the maintainence meds kick in. Some of the maintainence meds can take 4-6 mos to fully kick in.

Please come and ask any questions you might have. Or you can even have your daughter create an account and ask any questions she might have. Again welcome to forum, you will find alot of wonderful support here from folks who truly understand what you are going thru. Also many of the folks on this forum are really sick, so don't let this scare you. There are varying degrees with this disease, I luckily have been blessed with a milder case and am currently in remission. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
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"*

miki
New Member


Date Joined Apr 2010
Total Posts : 2
   Posted 4/30/2010 1:43 AM (GMT -7)   

Sorry for the late reply. We have been busy going from doctor to doctor....

My daughter got prescribed Pentasa 4mg a day. Are you familiar with this medicine? I should add that we live in Israel and maybe the meds name are different than in the States. She is feeling better now I say that tentatively after a week of pain and diarrea I am keeping my fingers crossed that the flare up is behind her

Miki

 

 

 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/30/2010 6:25 AM (GMT -7)   
Pentasa is the sister med to the med I take, Asacol. For some folks it works wonders and for others their Crohns is too severe for these milder meds. If its working for her great, do NOT stop it when she starts feeling better. Its important to stay on your maintainence meds such as Pentasa. Crohns likes to continue doing its damage on a microscopic level if not always treated. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
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"*

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 4/30/2010 6:35 AM (GMT -7)   
miki

Sorry to hear about your daughter. I was diagnosed at 19 so I understand how frustrating it can be being diagnosed so young.

I'm glad the docs figured out so quickly what was going on! Hopefully through trial and error you'll find what foods bother and comfort her. You should use the search function to look at posts about different meds and also on comfort foods. As nanners said this disease is so different for different people, so it's all trial and error figuring out what will help or hurt your daughter. Some meds help people well, while others have to try a couple different ones, or combinations of meds to get things controlled. You also have to be an advocate for your daughter, or teach her to be her own advocate so she can be educated about herself. Sometimes knowing your body and learning what helps or hurts you can help your doctor help you, especially since this disease is different person to person. Also, knowing exactly where the disease is active helps to know typically what symptoms are "normal" for the disease.

As you have questions, post and there usually is someone who understands or has been in the same position she is in.

Good luck!
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 4/30/2010 12:52 PM (GMT -7)   
Welcome to the board! I'm 21 years old right now (going on 22)... and I was diagnosed when I was 18 years old...

So, if your daughter needs someone to talk to that's her own age, well... I'm here... *There are some others here that are around my age, too*

This disease can be really sucky... I really hope your daughter's flare is over with, but it's not uncommon for a flare to last more than a week... It took me a long time before my disease calmed down....

And there's always the chance it will come back... but like Nanners said... it's not a death sentence, and it doesn't mean you can't live your life... Some dietary changes will need to be made (I highly recommend a food journal)... and sometimes, it will be difficult to do some of the things you used to do because of being easily exhausted... but, for the most part, you can carry life on like normal...

For instance, I'm in college right now... and doing pretty well... I plan on being a biochemist... and I work, too, as a peer tutor...

Oh... Something else.... If your daughter doesn't have a heating pad... buy her one.... During mild flare-ups, it can be an effective way to negate some pain without pain medicine...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 4/30/2010 3:28 PM (GMT -7)   
If Pentasa works, that's great, as it is one of the meds with milder side effects. Like Nanners said, if it works, it's best to use it indefinitely. Sometimes when patients go off a med and then try going on it, again, it is not as effective. 

Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past three years. March '09 colonoscopy showed stricture gone but two spots of inflammation in TI. Used LDN to taper off Entocort last fall. (Was on Entocort since April 06.) Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 5000IU vit D3, 1000 mg calcium, 27-54 mg iron, monthly B12 shots, daily oral B12 1000, 10mg zinc. SCD diet modified years ago to include potatoes and rice. 


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 4/30/2010 4:22 PM (GMT -7)   
Very familiar with it. At 16 pills a day, taking it sucks, but it definitely has benefits for me. Sulfalazine made me deathly ill in a few days, so I was forced into these more expensive 5ASA drugs.
Flares last as long as they last. Mine typically last a few months to a year for REALLY bad ones. No one can predict that.
Sorry your daughter has joined our motley bunch!

Sincerely,
Matthew
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