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Crohn's Disease Forum » Your Story » Newly Diagnosed with Crohns


01-27-2012, 09:14 AM   #1
Equestrian Girl
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Location: near Ottawa, Ontario
Newly Diagnosed with Crohns

Hi........I have just been diagnosed with Crohns ......and have just found this Forum. I am hoping I will hear back from others who may have some advice they can share with me.

I am a 33 yr. old female - living in Ontario Canada......who up until Sept. 2010 had literally never had any illnesses (other than the common cold and a broken ankle).

Starting in Sept. 2010, I started having Gastro issues.........and to make a long story short - after 4 Colonoscopies, a CT scan, hospitalization, visits to my GP (almost weekly)......and 3 GI Specialists.........it has now been confirmed that I have Crohns.

From Sept. 2010 to yesterday.........all of these Specialists thought I had one of the most severe cases of Irritiable Bowel Syndrome they had ever seen. As a result I was being treated for IBS - which is different than being treated for Crohns.

I have been off work for the last year and a half.......and my life has come to a screeching halt.

Now that we know it is Crohns - I have been started on Prednisone and Mezavant........and have a follow-up appointment with my G.I. in 10 days. I am taking Tylenol Extra Strength for the Pain.......and this is not working at all.

I have SEVERE stomach pains and cramps, and am running to the washroom at least 15 times each day. I also have severe joint pain in my right ankle.

Is there anyone out there with any suggestions or comments ???

Many thanks, Equestrian Girl

P.S. - I need to get back riding again......and the sooner I can get this condition under control.....the happier I will be. My mare misses me and visa versa.
01-27-2012, 09:20 AM   #2
bozzylozzy
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welcome to the forum equestrian girl! im sorry to hear about your diagnosis. but at least you and doctors can now start to combat it correctly.

everybody is lovely on here and im sure you will receive plenty of advice and support from those who are going through a similar situation.
im undiagnosed at the moment so cant really advise on meds and treatment etc.

I just hope you start to feel better soon and get riding again
what is your horse's name? x
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Grumbling Appendix removed OCT'11
Chiari Malformation diagnosed JUNE'12 (surgery 5th July)

Alternating diagnosis of:
Seronegative Inflammatory Arthritis / SAPHO syndrome

Meds:
Vitamin B12 injections
Sulfasalazine
(Previously Prednisolone.. worked a treat!)

Watch out.. there's a blonde about!
01-27-2012, 09:21 AM   #3
Crohn's 35
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Join Date: Oct 2009
to the forum. Canadians have been flooding this forum as it has the most incidence in the world. Some info for you is www.ccfc.ca so you can get in touch with a local chapter , fund raisers, information and peace of mind. Here we know how you feel. Prednisone is one of the worst drugs, and long term is NOT good. I would suggest you get something like Tylenol 3's from your doctor. I know you can ask for Tylenol 1's with codeine in Shoppers drug mart. They are a bit of a help til you get something stronger.

The new approach to getting the disease under control is hitting it hard, not mild so it can be under control and then a maintenance drug. Joint pain is common, and if it is where you broke your ankle that wont surprise me. Get your Vitamin D and b12 checked, magnesium as well, they are the most important as lack of it , can be common in a dx.

Glad you found us. Keep us posted ok?
01-27-2012, 04:31 PM   #4
Angrybird
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Hello and welcome to the forum As Pen says the key is not to be on the pred any longer than you absolutely have to. Whilst it is fab and getting inflammation down - symptoms therefore improve - it can have some side effects that are not great (bare in mind we are all different so you may not get any/many though) it is the potential long term effect it can have on the bones that is the worst - this can be a real problem with long term use at high doses. If they haven't already please make sure your docs have you on a calcium supplement asap as this helps as a preventative towards bone deterioration. Also what has been mentioned to you about diet? Since you started having problems have you noted a particular intolerance to certain foods? I really hope the meds kick in soon and get you feeling better so you can get riding again.
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
01-28-2012, 09:20 AM   #5
xJillx
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Hi and welcome! I am sorry to hear you are feeling so badly. Pred should work quickly to get the inflammation under control, which will reduce your pain. But until it fully kicks in, rest and eat carefully. When I am unwell, I stick to a low res diet. Things like rice, chicken, crackers, applesauce, toast, etc. are easy to digest and hurt less passing through the GI tract.

I sure hope you start to feel better soon and can get back to riding! Hang in there!
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Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
01-29-2012, 10:41 AM   #6
Equestrian Girl
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Join Date: Jan 2012
Location: near Ottawa, Ontario
Thanks to all those who sent me their kind words and advice. I greatly appreciate you taking the time to reply.

As I mentioned earlier........I was recently diagnosed with Crohns on Thursday, Jan. 26th (after 18 months of being told I had one of the most severe cases of Irritable Bowel Syndrome).......and all that time I was being treated for IBS......when I should have been treated for Crohns. It is now 3 days later (i.e. Sunday, Jan. 29th) ........and I am still in massive pain and having horrible cramping. I have been taking large doses of Prednisone and Mezavant for the past 3 days (Fri, Sat and Sun. morning).......and I haven't noticed any improvement. How long does it take before I start to have some sort of relief from this pain and cramping ??

Thanks again........for any and all comments and advice. It is most welcomed.

Equestrian Girl
01-29-2012, 10:45 AM   #7
Crohn's 35
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What dosages are you on for Pred?
01-29-2012, 11:14 AM   #8
Equestrian Girl
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Location: near Ottawa, Ontario
The GI suggested......since I am in this Flare-Up........that I take 6 Prednisone tablets in the morning (5 mg. each)......for a total of 30 mg. I am also taking Mesavant Mesalamine ER 1.2gm/cap.......and I am taking 3 of those in the morning along with the Prednisone.

Since I was previously being treated (incorrectly)....for the past 18 mths - for IBS........I was also prescribed additional meds. in an attempt to decrease the issues of IBS. I am back to see the Gastro-Enterologist on Feb. 8th - and he said he did not want to make too many changes to the other meds I am on until we get this flare-up under control. Right now I have been prescribed:

A Multi vitamin - as well as Vitamin D - and Vitamin B12
Dicetel
amitriptyline
feramax
dicyclomine hydrochloride
Colestid
duloxetine
Lomotil
Celexa

Equestrian Girl
01-29-2012, 12:28 PM   #9
Crohn's 35
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Join Date: Oct 2009
6 Prednisone does help some but most people start at 40mg and usually withing 2 days it works. The only downfall is as soon as you get down to 20mg you may start feeling more pain. However seeing that you are on Mesavant it could help when you taper down. Dicyclomine really doesnt help much, not for me anyways. and that others I have not been on. It takes a while to find out what works for you. Your vitamin b12 is better to be sublinguals.
02-17-2014, 06:04 PM   #10
Licorice
 
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Hey, I know this is super late but, I was daignosed at around 13 yrs old and have not had relief until now, finally two years ago at around 30 when I started Remicade. It, in combination with an anti anxiety (slash other stuff) medication has really improved my quality of life such that I can be extremely active with only little concern. So to nutshell, I've been through a lot of meds, but I think the docs have to jump you through the hoops of least consequential to most effective with kind of scary potential side effects in order to see what works for you with the least impact on your other organs.

(while hammering with prednisone when it doesn't work out)
02-17-2014, 06:26 PM   #11
Axelfl3333
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Join Date: Mar 2013
Location: Coatbridge, United Kingdom
Try buscopan for the cramping,speak to your doctor first,it can help.good luck
02-23-2014, 09:12 AM   #12
marcygarb
 
Join Date: Feb 2014
Location: Bensalem, Pennsylvania
Have you tried an anti-spasmatic medications for the cramps? My husband was recently given Levsin which has been very helpful.
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