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Crohn's Disease Forum » Your Story » Success Stories » One year into remicade.


11-15-2013, 12:38 PM   #1
araceli
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One year into remicade.

It has been a year since my daughter started remicade. We decided to do remicade due to fissure, she was on asacol before remicade and did not have any tummy issues but her disease was silently progressing into perianal disease. I am grateful for this treatment, it scares me but for now is giving my daughter a "normal" life. She is on her final year of high school and will be graduating with honors. Thanks to all of you who made my life easier with your support, advice, hugs etc.
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Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.

Last edited by araceli; 11-21-2013 at 08:00 PM. Reason: I put fistula instead of fissure.
11-16-2013, 03:24 AM   #2
Jennifer
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That's awesome araceli! I'm glad that your daughter is doing so well and I hope her remission lasts for a long time (hopefully forever).
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
11-16-2013, 06:26 PM   #3
araceli
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Thanks Jennifer.
11-18-2013, 07:23 PM   #4
Clash
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I'm glad to hear that the Remicade is working for your daughter. What an awesome accomplishment as well in academics! May she continue with great success with both Remicade and her academic endeavors!
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
11-18-2013, 09:37 PM   #5
nogutsnoglory
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So happy to hear of her success. Is her fistula invisible or largely sealed up now?
11-20-2013, 09:39 PM   #6
Ckoenig
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That's awesome araceli! I'm glad that your daughter is doing so well and I hope her remission lasts for a long time (hopefully forever).
Hey Jennifer... quick question.

I see you take something for PVC's and tachycardia. Is that anything to do with the Crohn's? I ask because I frequently have had palpitations, flutters, etc. I ate what I can only imagine was msg in Thai food the other night and went into atrial fibrillation. I've had heart tests, halter monitoring, they can never find anything, they always say anxiety, so I dunno. Just wondering if there is any relation?

Thanks in advance,

Christina
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Christina 34, MS Clinical Mental Health Counselor NCC at the Center for Integrative Therapy in Westport, CT. Trader Joes employee part time.

Mother of Tyler (13) Twin Girls Rian (11) Victoria (11)
My girlfriend is amazingly supportive!

Dx'd with Crohn's Disease 8/29/2013 6 inches of diseased terminal illeum. As of December 2014 currently in remission!

Humira as of Dec 18
B-12 injections monthly
2,000 iu Vit D daily
250 mg florastor probiotic 2 x daily
.25 Xanax as needed
11-20-2013, 10:07 PM   #7
Jennifer
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Ckoenig, Crohn's itself isn't the direct cause, Crohn's can cause other problems which can then lead to heart palpitations.

Vitamin and mineral deficiencies can cause an increase in heart palpitations like magnesium, folate, vitamin B12, vitamin B6, iron, vit C and even having too much vit D can cause palpitations (yet many people with Crohn's are deficient in vit D). Anemia can cause heart palpitations as well. Have some blood work done to see if you're low in anything and if you are then you can begin supplementing to see if that helps.

Stress is definitely related to an increase in palpitations. That and drinking alcohol, smoking (both alcohol and smoking are stimulants which means caffeine and certain medications can also be a possible cause) and lack of exercise have caused an increase in palpitations for me. So I've cut out what I can and have tried to increase the amount of exercise I do.

Lack of sleep is also a major one that increases palpitations yet I'm having a hard time with this one (and anxiety so they're likely related). Even viral infections can increase palpitations which many medications can cause us to be susceptible to.
11-21-2013, 02:03 PM   #8
Ckoenig
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Ckoenig, Crohn's itself isn't the direct cause, Crohn's can cause other problems which can then lead to heart palpitations.

Vitamin and mineral deficiencies can cause an increase in heart palpitations like magnesium, folate, vitamin B12, vitamin B6, iron, vit C and even having too much vit D can cause palpitations (yet many people with Crohn's are deficient in vit D). Anemia can cause heart palpitations as well. Have some blood work done to see if you're low in anything and if you are then you can begin supplementing to see if that helps.

Stress is definitely related to an increase in palpitations. That and drinking alcohol, smoking (both alcohol and smoking are stimulants which means caffeine and certain medications can also be a possible cause) and lack of exercise have caused an increase in palpitations for me. So I've cut out what I can and have tried to increase the amount of exercise I do.

Lack of sleep is also a major one that increases palpitations yet I'm having a hard time with this one (and anxiety so they're likely related). Even viral infections can increase palpitations which many medications can cause us to be susceptible to.
Thanks

I've had more bloodwork for everything under the sun than you can possibly imagine, oh wait you probably can imagine. My magnesium levels are surprisingly good considering. My b-12 was dangerously low before I was dx'd and I get monthy b-12 injections. my level is around 500 now, it was below 150 and I was having tons of palpitations, was anemic etc. It is much better now. I feel the heart palps I am having now are prob anxiety related. I am just very sensitive. I can have 1 glass of red wine and have my heart race all night. It is NUTS. I don't drink or smoke as a result, both of which I used to do. At one point I didn't even drink caffeine but now I have calmed down and can have one cup in the am.

Thanks for the info.
11-21-2013, 07:58 PM   #9
araceli
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So happy to hear of her success. Is her fistula invisible or largely sealed up now?
Sorry, it was not a fistula, it was a fissure. No more signs of it.
11-22-2013, 02:04 AM   #10
nogutsnoglory
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Ah ok another unpleasant crohn's variety lol!
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