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jamiii sayys
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 3/9/2009 9:21 AM (GMT -7)   
hello everyone,
 
I have just joined this site. I was released from the hospital on wednesday and diagnosed with crohns disease. When I first got out of the hospital I was feeling really good but now im just in alot of pain. I dont know how to deal with this and im so overwhelmed. any advice would be wonderful.

Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 3/9/2009 9:36 AM (GMT -7)   
I hate you have to be here but WELCOME! You'll find everyone on this board to be extremely helpful, honest and upfront about how they've dealt with their Crohn's. I found a lot of comfort here when I was first diagnosed because I didn't know anyone else with this crazy disease. It was great to find a forum where I could talk about "unmentionable" stuff and people UNDERSTAND what I was talking about and going through.

My advice is to STAY POSITIVE. I know that's easier said than done when you're hurting. Just know you're not alone. Treat your body as well as YOU can. Read as much as you can about CD from the people who have had CD for years. Talk to your doctors openly and teach them about how YOUR Crohn's affects YOU. I've learned that the doctors are still in the learning stages of this disease, too. I've also found the book "100 Questions & Answers about Crohn's Diease and Ulcerative Colitis: A Lahey Clinic Guide" to be very helpful.

Take care.
Diagnosed in October, 2004 at age 32.
37/F/SC
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 3/9/2009 9:56 AM (GMT -7)   
I'm so sorry you were diagnosed with Crohn's, but may I extend a warm welcome to the Healing Well family! You will find a wealth of information and support here. May I ask what medicines you were placed on? What are your current symptoms? Are you taking anything for the pain? Blessings, Julie
Diagnosed with Crohn's March 2006, Fibromyalgia November 2008
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 10 mg, Miralax,  Prevacid 30mg, Vit B12, Vitamin D, Slow-FE (Iron), Hydrocortisone enemas
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg three times a day, 1mg at bedtime (for anxiety attacks)
 
 
 
 
 


jamiii sayys
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 3/9/2009 10:55 AM (GMT -7)   

thank you for the responses.

when i went into the hospital i was having abdominal pain, diahreah, weightloss, fevers, and tiredness. basically everything. I am now taking pentasa, prevacid, prednisone, and amoxiciline (sp?). Right now im just having abdominal pain and lots of back pain but i dont know if the back pain is related to crohns or not. As far as pain, my doctors just recommended tylonol.

thank you again. it helps just having someone to talk to.


catpower
Regular Member


Date Joined Nov 2008
Total Posts : 192
   Posted 3/9/2009 11:25 AM (GMT -7)   
Welcome to the forum. The people here are so friendly and helpful.

As for the back pain, the only time I had severe lower back pain was when I had a UTI/bladder/kidney infection all at once. Hopefully you can get a follow up appointment soon so your doctor can better assess the problem. I hope you get some relief soon!
Diagnosed with Crohn's Disease; Meds: Entocort & Asacol; female in late 20s.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/9/2009 11:28 AM (GMT -7)   
First off let me also add my welcome to Healingwell. We have alot of wonderful and supportive folks trying to live with the same disease.

A suggestion to ask the doc about for the cramps/pain is Bentyl or Levsin. These meds are good for the abdominal spasms we all suffer with.

Also, sometimes when the intestines are all in an uproar, we can get referred pain into our lower back. Very common. Also, antibiotics can sometimes cause alot of diarrhea for us, so be sure to take a good probiotic two hours after each dose of anti-b. This helps to avoid getting a bacterial overgrowth, and keeps the bacterial levels (good/bad) even. I take a basic lactobacillus everyday.

Glad to have you with us, sorry you have to be in our club.

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"*

Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 3/9/2009 11:58 AM (GMT -7)   
Oooh, thanks Nanners for that tidbit about taking a probiotic after each dose of an antibiotic. I've never heard that before. I take a probiotic in the morning, but never thought of up'ing the dose while on antibiotics.
Diagnosed in October, 2004 at age 32.
37/F/SC
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date


jamiii sayys
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 3/9/2009 12:05 PM (GMT -7)   
what is a probiotic?

catbird4077
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 3/9/2009 12:21 PM (GMT -7)   
As the mother of a son recently diagnosed with CD, I should also tell you that he had back pain for about a year before his diagnosis. It turns out that during a hospital stay this month, a rheumatologist took a look at his back Xrays. Turns out he has Sacariliitis (SP) arthritis. It is just a thought. You might want a rheumatologist to take a look at any back xrays you had taken. The Dr says it is related to CD

Good Luck.

Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 3/9/2009 1:09 PM (GMT -7)   
A probiotic adds extra GOOD bacteria to your body to balance out the imbalance of good/bad bacteria in the intestines that often causes diarrhea and/or constipation.

I get lower back pain when I've had a lot of bowel movements during a flare. Catbird is right, too. I went to a Rheumy last year because my ankles often swell to the point I can't walk/drive. She immediately asked me if I'd ever had lower back pain. She had my sacroiliac joints X-rayed as a baseline. It's a 3-point X-ray of the pelvic joints. It's in the overall arthritis category of Ankylosing Spondylitis (AS), which many of us Crohnies on this board have.
Diagnosed in October, 2004 at age 32.
37/F/SC
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 3/9/2009 1:56 PM (GMT -7)   
Hi Welcome to Healing Well and glad you joined us.. I follow low residue diet easy to chew easy to digest foods.. There are alot here that also take B-12 shots once a month ,me for one.. There is alot to take in when just diagnoses but this forum has help me alot.. let us know how things go...lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/9/2009 2:07 PM (GMT -7)   
Let me add my welcome too. The best thing you can do for yourself is to educate yourself, but please understand that while everything is a possibility with this disease most things are not a probability. If that makes sense. The majority of people with CD are out in the world living their lives with very little daily thought given to CD. They may have an initial flare up when they are diagnosed and the occasional bad time, but for the most part they take some daily meds and are off living life. Then there are some who are more severely affected, or don't respond to the medications, or are still seeking diagnosis. A lot of them are posters here. And then there are some of us who have had the disease for many years and can offer a long term point of view/advice. If there is a complication out there, someone on this board has probably had it. If you have any questions, this is the place. Because of the nature of CD, we pretty much discuss anything. So feel free to ask what you want.

Nanners point about cramping pain medication was good advice. Also, GI doctors tend not to want to give out pain medication. They want to fix the cause of the pain, not mask it. However, a lot of the Crohn's medications take time to work, leaving us to live in pain while they work their magic. If you are in pain that is affecting your ability to function, you need to make your doctor understand and give you something to help you function. There have been many threads on this topic. You can try to do a search if you want to get some background info.

Try looking at the resources to the right for more books on Crohn's disease or check some out of the library in your town, but the more reading you do the better. Just don't scare yourself.

Take care,
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

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