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Lady R
New Member


Date Joined May 2010
Total Posts : 4
   Posted 5/17/2010 12:47 PM (GMT -7)   
I was diagnosed with UC at 13 (1995) , I took asacol for most of my teenage years, I had few flares during that time, when I wouldn't take my meds. I have only had to take Prednisone once.
I felt relatively good for many years, until the day after my wedding September 9th 2006, it all went down hill.
I had the worst flare ever, a few months after I developed an abscess, then an anal fissure, I had no idea why this was happening, my husband suggested it might be Crohn's, after we couldn't get the abscess to go away.
Finally I convinced my doctor that it was a fistula, after a year (the first year of my marriage) of being sick, and traveling to a university hospital I got my answer.
I went through a round of Remicade and was put on Imuran.
I got pregnant a few months after my last Remicade infusion, I had already quit taking the Imuran (not good with keeping up with my meds, I know, I know, lol, doing much better now)
I was able to go med free during my pregnancy, I felt great the whole time, and even breastfed (med free) for 6 months before my symptoms started creeping up on me.
I take Imuran now and have been feeling okay, waiting for it to kick in, I guess.

I am starting to think all of my other health problems are related to the Crohn's as well, I have sciatica and back pain, my jaw has been bothering my like crazy, TMJ, also I have these sores on my scalp, that for the life of me I cannot get to go away, and general fatigue.

Hoping to join this as a reminder to take my meds, I cannot afford, financially, mentally, or physically to get that sick again, at least if I am taking my meds I can say I did my best to control/prevent it :)

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 5/17/2010 7:54 PM (GMT 0)   
Welcome, Lady R!  I'm sure you'll find the information and people on this site to be very helpful and not just a reminder to take your meds.  =)  It's great to talk to others who understand what you are going through and there are so many different people on here who have experienced just about everything you can imagine.  I'm sure they will be along to welcome you soon.   
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


Lady R
New Member


Date Joined May 2010
Total Posts : 4
   Posted 5/17/2010 1:04 PM (GMT -7)   
ZenaWP said...
Welcome, Lady R! I'm sure you'll find the information and people on this site to be very helpful and not just a reminder to take your meds. =) It's great to talk to others who understand what you are going through and there are so many different people on here who have experienced just about everything you can imagine. I'm sure they will be along to welcome you soon.


Thank you, I am definitely looking forward to talking to people in a similar situation as myself.
First diagnosed with UC at 13 (1995) After becoming really sick in 2006/2007 diagnosis changed to CD. I take Imuran. I have had one round of Remicade infusions to heal a rectal- vaginal fistula.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/17/2010 1:36 PM (GMT -7)   
Hey LadyR and welcome to Healingwell. I am one that is an advocate for maintainence meds at all times. I learned my lesson the hard way by ending up having to have an emergency resection that wound me up in ICU for two days. Now I am a good girl and ALWAYS take my meds. And I hope that you learn your lesson too:)

This is a chronic and incurable bowel disease that really must be treated at all times. When I was not taken my meds and busy getting on with my life, the Crohns was still in there doing its damage unbeknownest to me until I ended up completely obstructed. Please stay on your meds so that you can enjoy that little one. Many moms on this very forum, have been on meds such as Remicade, Humira and Imuran/6mp while pregnant and all have healthy babies now. The thought is a healthy mom produces a healthy baby.

Welcome to forum LadyR and we look forward to hearing more from you.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease 
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"*

Lady R
New Member


Date Joined May 2010
Total Posts : 4
   Posted 5/17/2010 1:50 PM (GMT -7)   
Nanners said...
Hey LadyR and welcome to Healingwell. I am one that is an advocate for maintainence meds at all times. I learned my lesson the hard way by ending up having to have an emergency resection that wound me up in ICU for two days. Now I am a good girl and ALWAYS take my meds. And I hope that you learn your lesson too:)

This is a chronic and incurable bowel disease that really must be treated at all times. When I was not taken my meds and busy getting on with my life, the Crohns was still in there doing its damage unbeknownest to me until I ended up completely obstructed. Please stay on your meds so that you can enjoy that little one. Many moms on this very forum, have been on meds such as Remicade, Humira and Imuran/6mp while pregnant and all have healthy babies now. The thought is a healthy mom produces a healthy baby.

Welcome to forum LadyR and we look forward to hearing more from you.

Hugs
Gail*Nanners*


Thank you.
Yes, I have been very lucky, no surgeries for me yet, I would like to keep it that way as long as possible.
Really, I was under the impression that Imuaran was one you couldn't take during pregnancy? I guess we'll see down the road, we wont be ready for another baby for a couple of years :)
First diagnosed with UC at 13 (1995) After becoming really sick in 2006/2007 diagnosis changed to CD. I take Imuran. I have had one round of Remicade infusions to heal a rectal- vaginal fistula.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/17/2010 2:15 PM (GMT -7)   
Lady R, have you discussed your joint pain and sores with your doctors? These might be Crohn's symptoms, but they can also be symptoms of other autoimmune illnesses, so I think it would be a good idea if you had some extra blood tests (if you haven't had these already) to rule out some of Crohn's dear friends, like lupus and psoriasis etc.

That's horrible, getting sick the day after your wedding, but it doesn't really surprise me. I can imagine you were holding things together through all the busyness and rush before the ceremony, and then things just fell apart on you?

It must have been a real shock, and very upsetting and disappointing.

Welcome.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Lady R
New Member


Date Joined May 2010
Total Posts : 4
   Posted 5/17/2010 2:28 PM (GMT -7)   
ivy6 said...
Lady R, have you discussed your joint pain and sores with your doctors? These might be Crohn's symptoms, but they can also be symptoms of other autoimmune illnesses, so I think it would be a good idea if you had some extra blood tests (if you haven't had these already) to rule out some of Crohn's dear friends, like lupus and psoriasis etc.

That's horrible, getting sick the day after your wedding, but it doesn't really surprise me. I can imagine you were holding things together through all the busyness and rush before the ceremony, and then things just fell apart on you?

It must have been a real shock, and very upsetting and disappointing.

Welcome.

Ivy.

Thank you, just recently I started thinking about the other symptoms as being a problem.
I have talked to other doctors about them, but mostly they write the jaw pain off as TMJ, and the sores I have tried all the dandruff shampoos, and anti-itch stuff, which just made it burn and itch, lol. The back pain was attributed to work.
I have been thinking it is all related though, and I may have more going on.

I am just thankful to have a supportive and understanding husband, we have been together since we were 16, so he has been through all of the ups and downs with me.
First diagnosed with UC at 13 (1995) After becoming really sick in 2006/2007 diagnosis changed to CD. I take Imuran. I have had one round of Remicade infusions to heal a rectal- vaginal fistula.

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