Crohn's Disease Forum » Your Story » Helping a friend


05-17-2014, 08:15 PM   #1
Seahawk
 
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Helping a friend

Hello,
My friend's 19 year old son has just been dx'ed with Crohn's. I am trying to learn more about the disease and thought this site would be a good place to start. I am type 1 diabetic and have some experience understanding autoimmune disorders,
05-17-2014, 08:35 PM   #2
theOcean
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Welcome to the forum! If you have any questions I'll be happy to answer them.
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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
05-17-2014, 08:38 PM   #3
nogutsnoglory
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Welcome. We have a great wiki chock full of info on IBD
http://www.crohnsforum.com/wiki/Crohns-Disease

I'd encourage you to check out the Northwest chapter of CCFA http://www.ccfa.org/chapters/northwest/

They also run a crohns support group in Seattle http://www.ccfa.org/chapters/northwe...eattle-wa.html

You're a great friend. Please let them both know they are welcome to join us.
05-22-2014, 07:05 PM   #4
Seahawk
 
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Here's a quick update on the 19 year old newly diagnosed crohnie.

Last Saturday he had acute pain and was running a temp of 101, curled up in a ball and weeping from the misery...His mom took him to the ER and they ran more tests. He had not yet received the final official diagnosis but the doctor went ahead and prescribed Prednisone, 40 mg day. He woke up Sunday feeling almost normal.
Yesterday they went to a natural path and saw their MD. The natural path ordered blood work and suggested a gluten, dairy free diet and a hemp powder of some sort. The natural path is waiting to see the results of the blood test and then plans on recommending Cannabidiol. The MD wrote a prescription for Azathioprine and ordered a 2 month Prednisone therapy.
This is all new to them and this is a very complex condition and there seems to be a lot of pharmaceuticals available all with scary side effects. They are leaning toward natural therapy and wheening him off Prednisone.
05-22-2014, 09:31 PM   #5
afidz
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The scary side effects are rare.
You are more likely to develop colon cancer from untreated Crohn's then you are from the meds. Honestly, the meds do more good then they do harm. When he starts getting off of the prednisone, if he isn't on anything else, it is likely his symptoms will come back.
Why gluten and dairy free? Does he know those things effect him in a bad way?
There is a lot more to Crohn's than just changing the diet, it is a very complex disease that baffles doctors and scientists most of the time.
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Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
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05-22-2014, 11:31 PM   #6
theOcean
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Agreed with afidz. Crohn's medication looks scary if you look at the side effects but you have to remember it's mostly all liability. I've been on prednisone, Azathioprine, Remicade, Humira, 5-ASAs and never had any problems or side-effects -- at most some of them just weren't effective for me. Diet alone really isn't enough, and with Crohn's it's so inconsistent anyway.

I do believe in Cannabidol and that it helps, but I don't think there's a single member here that relies only on that. They're usually on at least one medication in addition to that.
05-23-2014, 01:25 AM   #7
Seahawk
 
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Thanks guys,
theOcean. Has any drug or combo made you feel "normal", if so, for how long.

afidz. Looks like you are having a hard time, I hope things go well for you.

My brother has colitis and AS. He's was on Az for over 20 years with several periods of Prendisone therapy. (Getting off Predisone sounds rough) He is 58 and seems to be comfortable.(lots of pharma drugs) He says get on the pharms asap. Would it be dangerous to experiment with alternative therapy being that he is young and has only had 3 flare ups so far? Her thinking is try alternative,and keep a close watch, if all hell breaks loose again there is always traditional treatment.
05-23-2014, 01:32 AM   #8
theOcean
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Thanks guys,
theOcean. Has any drug or combo made you feel "normal", if so, for how long.
When I originally flared, a lengthy dose of prednisone was enough for me. Some other medications I was taking eventually triggered another flare after a year, and I was hospitalized multiple times until I was treated for a fistula and given more prednisone, then put on Humira. I've been in remission since last November and Humira is the only medication I'm currently taking, and it's been doing wonders for me. I feel totally normal and don't have any problems. I'm in complete remission.
05-23-2014, 01:37 AM   #9
DustyKat
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You can fall back onto traditional treatment, yes. BUT, there is always a but! The problem is the amount of damage that is being done whilst the disease is not being treated. This period of unchecked inflammation may lead into drug therapies that may not have otherwise been required and/or surgery.

I personally would not go down the alternate path at this point, it needs to be done at all then it is far better from a state of remission, with their disease well monitored, and since your friend is 19, further down the track when they have a far greater understanding of their body and can read its signals.

It must be understood though that many people do not have the opportunity to go without medication. It is no failing on their part, it is simply what it is.

Dusty. xxx
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05-23-2014, 02:19 AM   #10
afidz
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I completely agree with DustyKat, and she makes a valid point that its best to experiment with alternative methods after he learns how to listen to his body.
Crohn's not only affects your digestive tract, it affects your whole body. There are things that a weathered Crohnie will look out for to hint that they need to get in to see their doctor. For example, my eyes swell and my vision decreases.(Iritis)
In addition to what Dusty said, you also have to keep in mind that Crohn's is life-long and your friend's son is only 19. He needs to try and reverse what damage has been done now while he still can, if he can. The way I look at it, I know I have Crohn's in my colon. I know that there is a high chance that someday I will have to have it removed. So I need to do everything in my power to put that off for as long as possible. You can have so much of your intestines removed. And resections, even though they help, they can come with consequences.

In regards to me having a rough time, that is a bit of an understatement. But my problems aren't directly Crohn's related. I started Humira a week ago and I can't believe how much better I feel. Humira is used to treat several autoimmune diseases, one of them being AS. I haven't felt back pain since the night I started it, I see that as a probable sign that I do in-fact have AS. I will be going to a rheumatologist sometime this summer.
05-23-2014, 04:40 AM   #11
Cross-stitch gal
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Sometimes it does take time to get the right meds as well as the correct dosage. In my case, that has been true. But, I would keep track of how your friend or brother are doing as you go, even if it's a log of symptoms, medications and such. If at all possible, I would also keep your doctor informed as well. IBD in any form is a challenge no matter if you have Crohn's or Colitis. But, we're here for you. Please keep us updated.
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Diagnosed:
Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

Current Meds:
Pentasa 1000mg 2xday or Mesalamine DR 1.2gm 2xday, Canasa Suppositories (when needed) 1000mg 1xday, Tylenol 3 with codeine 300-30mg (when needed)

Non-Meds:
600+D Calcium 2xday, Multivitamin, 65mg Iron 1xday, Fish Oil 1000mg, Vitamin D3 5,000 I.U., Eye Drops 2xday


UP Support Group http://www.crohnsforum.com/showthread.php?t=68350
05-23-2014, 06:37 AM   #12
Catherine
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My DD went on same drug combination at dx. She felt much better with in days of started pred. She is now in first year of university and teaching swimming 3 times a week.

Her disease in remission. We tried diet prior to her dx, but she just got sicker on the diet.

I would go with get the disease control before changing. Big diet changes are hard for teens who just want to be normal.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
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