Just found out a month ago I have Crohn's Disease

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Kellznpc8784
Regular Member


Date Joined Jun 2009
Total Posts : 46
   Posted 6/11/2009 12:33 PM (GMT -7)   
Im 21 years old and just got out the the hospital 2 weeks ago and found out that I have Crohn's Disease. Was on Asacol but it made me sick so was switched 2 Pentasa 500mg. 8 a day. It helps some. I dont know much about Crohns Disease only what I have read online. I have lots of swelling in my feet,ankles,knees,wrists, and fingers and my legs swell really bad. Is there anything that can help for this I cant even walk or get out of bed sometimes. I have seen my doctor once since I found out and had blood test and my sed. rate was not normal? what does this mean??

jhicks
Regular Member


Date Joined May 2009
Total Posts : 177
   Posted 6/11/2009 1:58 PM (GMT -7)   
I have had swelling ankles, migratory arthritis in my knees and jaw pain for the last three months. I am on Pentasa, which I've been on the last four years. Docs want to put me on Remicade or Imuran, but I'm managing now with acupuncture, fish oil, Vitamin D, Isatis Cooling (a Chinese herb), Mobic (an NSAID prescription for pain and swelling) and Align probiotic. It seems to help, though I still have some daily swelling - the pain isn't as much, nor is the swelling. I was on crutches for two weeks earlier. Since I started all of this, it has gotten much better. At least I can function. My gut is not bothering me now. Welcome to the club. So sorry you're now a member. But you're in good company and far from alone!

elexis
Regular Member


Date Joined Feb 2003
Total Posts : 101
   Posted 6/11/2009 2:06 PM (GMT -7)   
Hello,
Welcome and sorry to hear of your diagnosis but, you can find out a ton of information through others and the internet. also your sed rate would not be normal because their is inflammation going on in your gut that's what that means. But I wish u the best!

Erica
Dx w/ Crohn's Disease May 2000
Medication: Imuran 150 Mg, Asacol 400MG
Dx w/ Hypothyroid 2001
Medication: Levoxyl 88MCG
Small Bowel Resection November 2008


rovin1959
Regular Member


Date Joined May 2009
Total Posts : 159
   Posted 6/11/2009 6:29 PM (GMT -7)   
I too am sorry for your dx. Believe it or not, you are fortunant sp? to have found out at a young age. Keep yourself informed. This is a great group of people. I am going tomorrow to give my "final answer" to my gastro about begining humira. Any last min. advice?
Mary Lynn


flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 6/11/2009 9:01 PM (GMT -7)   
So sorry to hear of your dx. Give yourself some time to except it. Reading to much about it on the Internet can scare you. Remember Everyone's journey is different. This web site has been a God sent. There are changes you will need to make, at first it's so forgien then little by little you get used to it.
I get swelling in my legs, ankles and knees too. It was really bad when tappering off my steroid the first year. (06) I cried if I had to move. Fish oil seems to really make a difference in my swelling. I take 2000 ieu's a day.
take care
Flowery
 41 yr old woman with 12 surgerys under my belt. Diagnosed in 2005 CD. PTSD 1999. Gullbladder taken 2000, Hysterectomy 2005, Back surgery 1998 with herniation L-4, L-5, S-1. Two-Re-sections on small intestine, total of 18 inches taken out 2006. Stomach Herniation from re-section 2007, Been getting kidney stones too! The good news...finding this website.
                Meds: Imuran 200mg daily, asacol, Bentyl, Coelestid, occasional flagyl and cipro, high blood pressure meds, paxil 25 mg, 4/20meq's potassium, synthroid...& try to get alot of laughter in.
                         


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 6/11/2009 10:37 PM (GMT -7)   
My heart goes out to you...I can't say much about the swelling, but I do have joint pain. I attribute most of this from inability to absorb nutrients properly and long term use of prednisone however.
Humira may be a factor, but I also know it can help with joints as well so I'm not sure.
What has your doctor said about it?
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics prescribed by my GI.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


Kellznpc8784
Regular Member


Date Joined Jun 2009
Total Posts : 46
   Posted 6/12/2009 4:32 AM (GMT -7)   
Thanks for all the help.... I have only seen my dr. once I live in Moorefield WV a very small town and there is no doctor around here for this so I go an hour and a half 2 Winchester 2 see the Dr. I go back on the 22nd and im gonna to ask her about my swelling but I dont get long visits with her b/c they are so busy. A lot of foods make me sick so still trying to figure out what 2 eat. I went to the bathroom 13 times yesterday and I only ate an egg for breakfast yesterday. Its like every other day im still sick. I dunno if the meds. are not helping or what. Just wanted 2 say thanks for all the advice!!

Kelly

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/12/2009 6:13 AM (GMT -7)   
Hi Kelly and welcome to Healingwell. I would suggest you get in to see a Rheumatologist also. With Crohns we also suffer with Crohns related arthritis' and I personally believe all of us should have a Rheumatologist on board. Good luck and we look forward to hearing more from you.

Hugs
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Carbec
New Member


Date Joined Jun 2009
Total Posts : 7
   Posted 6/12/2009 8:02 AM (GMT -7)   

Hi Kelly,  I agree with Nanners about seeing a Rheumatologist also.  I had such bad swelling in my knee (many years ago) and it was diagnosed as Crohns related arthritis.  I was put on Celebrex for a couple of years.  I haven't had it since but do get occasional swollen ankles and the area behind my knees.  It's also very important to have a specialist who will listen to you and take as much time with you as necessary.  I write all my questions down before my appointment, so I don't miss anything.  Take care, you're not alone!

 

 


tamsprote96
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 6/14/2009 3:00 PM (GMT -7)   
I was diagnosed in Feb 09 and had about a month where I felt almost normal again.  Last month I flared up and have had the joint pain mainly in my wrists and ankles, pink eye, Erythema Nodosum and anal fissures.  Since Feb I have had EDG, colonoscopy, sigmoidoscopy and the barium xray series.  This has definitely been more than I thought it would be.  Dr has be on Pentasa (4 pills twice a day) and Humira every other week.  I am back on the Prednisone (and Cantasa for the fissures) and I am hoping that will help.  Dr said if this round of Prednisone don't work then I may need to do the 2 hr IV route.  I don't know much about that and the thought of a 2 hr IV is not appealing to me.
.

hopeheallive
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/17/2009 7:00 AM (GMT -7)   
HI kelly,

can you talk with the doc over the phone and explain your symptoms to avoid the long rides back and forth. it sounds like you need a different med. 6mp has helped my son. he takes 50 mg a day along with pentasa. I doubt he would be well if he only took pentasa. he is in remission now from the 6mp. my heart goes out to you. do you have any support systems to help you deal with this illness? i always ask people what meds they are on and how they are working for them. It seems that crohns can not be treated the same for everyone. i know so many people that do well with remicade. my son never had to take that because the 6mp worked fine. that would have been the next med. my hope is that they can start treating this disease with homeopathic remedies. it doesn't seem so far fetched. it is the 21st century. they have come so far with technology; there has to be something better soon. in the meantime please keep us posted on your symptoms.

PinkFlipFlops
Regular Member


Date Joined Dec 2008
Total Posts : 73
   Posted 6/17/2009 6:43 PM (GMT -7)   
Wow. I am so glad I came across this post. I too have swelling in my ankles and for the life of me I could never figure out why! I was diagnosed with pregnancy induced hypertension when I was pregnant with our daughter in 2006; I had severe swelling in my ankles then, and while the swelling decreased after she was born, it really never went away. I saw my PCP about it and he basically blamed it on gravity and getting older (I turned 38 today). I had NO IDEA the swelling was related to Crohn's! I should have put two and two together; I never had any symptoms at all until after her birth. I also have "flares" in my wrists maybe once per month; lasts a few days and then goes away. Boy does it hurt. Never made the connection there either. Thanks, everyone for sharing such great information.
Diagnosed with Ileitus October, 2008. Possible Crohn's. Will know for sure in October, 2009 when I have my second Colonoscopy. Weaned off Entocort. Celiac Panel negative. Food Allergy testing negative. Trying to maintain good health and less bathroom visits with diet and probiotic.


flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 6/17/2009 7:58 PM (GMT -7)   
Yes! get a Rheumy for sure! They are great for understanding all the swelling issues.
I know that doesn't help with the 1 egg and 13 times of going to the bathroom but, I have this issue too!  My GI Dr. told me I could take an extra strength Immodium after each bowel movement up to 6x's a day. It helps! and sometimes it works great!  Makes everything  go to sleep for a bit. It's exhausting having to get up so many times a day from just a sip of water
I understand! Also, can your Dr. give you any kind of nausea medicine to just have incase you feel puky all the time. This also helps when you have to eat something and you don't want to. Just some suggestions. Good luck honey!
Flowery
 41 yr old woman with 12 surgerys under my belt. Diagnosed in 2005 CD. PTSD 1999. Gullbladder taken 2000, Hysterectomy 2005, Back surgery 1998 with herniation L-4, L-5, S-1. Two-Re-sections on small intestine, total of 18 inches taken out 2006. Stomach Herniation from re-section 2007, Been getting kidney stones too! The good news...finding this website.
                Meds: Imuran 200mg daily, asacol, Bentyl, Coelestid, occasional flagyl and cipro, high blood pressure meds, paxil 25 mg, 4/20meq's potassium, synthroid...& try to get alot of laughter in.
                         

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