New Crohn's Diagnosis......?'s on Medications (Naltrexone)

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Krystal
New Member


Date Joined Sep 2008
Total Posts : 3
   Posted 9/10/2008 8:32 AM (GMT -7)   
Hello,
 
My 25 yr old daughter has been recently diagnosised with Crohns by her colonoscopy. She has been told the terminal ileum has a moderate amount of inflammation and some ulcers. Of course as a lot of you know there are a lot of different medications. She was started on Entocort after the colonoscopy. She recently had her followup appointment  at 2 weeks post procedure and was still having some days with 3-4 loose stools and her worst day maybe 5, but also some great days. Her pain is better and overall is she is doing better, but of course not without periods of diarrhea.
 
The GI specialist wants her to go on Imuran now while on the Entocort. She will stop the Entocort and continue on the Imuran if she can tolerate the medication. If she doesn't tolerate it she mentioned Remicade and Humira. Now I'm all about researching, and I have a friend with Ulcerative colitis and I'm concerned about my daughter going right on these medications before trying some others with less side effects and costs. For one she can not afford these meds.
 
In my research I came across a medication called Naltrexone. Has anyone tried this yet? It has been found to have great affects on Crohn's symptoms while treating a different disorder. Also has anyone started on Asacol before some of these bigger meds and had luck with it? So many questions. I know treatment is different for everyone, but I do believe in advocating for our own care. I will pass this wonderful website on to her, but any info you can suggest as far as diet and medications would be great. Has anyone found antibiotics to help after that initial diagnosis?
 
Thanks,
 
Concerned Mom

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/10/2008 1:21 PM (GMT -7)   
There are some folks on here that have had some success with LDN (Naltrexone). I think there is a post about medications on one of the first few pages that may help you there.

I have had Crohns for almost 33 years and the only Crohns med I take is Asacol. It does the trick for me. I also have a mild form of Crohns. I think it can't hurt for her to add the Asacol with the Entocort and see how she does. Asacol is such a mild medication, I think I too would want to start with the mildest type of meds first. Good luck and keep us posted.

God Bless
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


menegayjj
New Member


Date Joined Mar 2008
Total Posts : 4
   Posted 9/11/2008 4:04 AM (GMT -7)   
I've had crohn's for over 5 years. I started on a short run of Entocort and Pentasa for maintenence. The Entocort worked great for me for about 2 years. I would flare up once a year Entocort would help. I then had to move on to Prednisone.
My doctor really wanted to get me on Imuran, but I refused. I just don't believe killing your immune system is the answer. I honestly think a lot of gastro docs are more interested in getting people in and out for colonoscopy's and listen too much to pham reps without doing their own research.
I think it would be a mistake to start your daughter on such a strong med this early. I've done some research on LDN and would try that first since there are less side effects. The scariest thing about Imuran was that a potential side effect is cancer. I talked at great length with the surgeon who removed my Gallbladder and he feels Crohn's is a smoldering infection. He started treating me with long term antibiotics about 4 months ago. This seems to have helped more that the Prenisone I was on. I have only had 2 days where I have felt sick since I stated taking them. Do some research on this if you want more info let me know.
My advice is to try the entocort, heal up, eliminate most of the processed foods she eats, take a probiotic every day, and exercise. These have all helped me feel great. I have put on 30 pounds of muscle since my last flare up in Feb. and feel great. I never liked running but it makes me feel great and gives me so much energy, I recommend it to everyone.

Good Luck

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 9/11/2008 5:48 AM (GMT -7)   
There are many people using LDN (low dose naltrexone) for CD and UC... if you wish to learn more, go to the yahoo group lowdosenaltrexone and sign up. They can answer your questions!

It's possible, though, that your daughter won't need all that the doctors are recommending. We refused our doctors when they wanted to bump my son up to Imuran. We wanted to give diet change and supplements a chance to work; to allow healing if possible. That was last October. In June his docs told us he is in remission. I am like you, though. I would use LDN if we needed it. Thankfully we have been able to control my son's CD with complete diet change and probiotics.

Good luck! smilewinkgrin
Mom to 16 year old boy diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3, a good multivitamin, SCD legal yogurt, weaning off Asacol.
Started The Maker's Diet in Sept. '07. Gradually learning/using more SCD recipes, too! (cooking challenged)


Krystal
New Member


Date Joined Sep 2008
Total Posts : 3
   Posted 9/11/2008 3:10 PM (GMT -7)   
Hello,
 
Thanks to everyone who replied. Is Asacol only used for Crohn's when it is also in the colon? My daughter was told she was months away from probablly having to have surgery, and her disease is just in ileum at this time. The physician said Asacol is not used when just in small intestine. She would consider putting her on an antibiotic like Flagyl for just 2 weeks, but wants her to start on this Imuran at a low dose of 25mg/day. My daughter doesn't know what to do, and I'm feeling like there has to be some other options. I guess because her condition is severe the Dr. doesn't seem to think anything would help except the Imuran. I'm doing some research on the Naltrexone as her Dr explained it to only work on pain and not help put her into remission. Can the MAP bacteria be treated with Flagyl?
 
Thanks,
 
Concerned Mom

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 9/11/2008 9:17 PM (GMT -7)   
Krystal said...
Thanks to everyone who replied. Is Asacol only used for Crohn's when it is also in the colon? My daughter was told she was months away from probablly having to have surgery, and her disease is just in ileum at this time. The physician said Asacol is not used when just in small intestine. She would consider putting her on an antibiotic like Flagyl for just 2 weeks, but wants her to start on this Imuran at a low dose of 25mg/day. My daughter doesn't know what to do, and I'm feeling like there has to be some other options. I guess because her condition is severe the Dr. doesn't seem to think anything would help except the Imuran. I'm doing some research on the Naltrexone as her Dr explained it to only work on pain and not help put her into remission. Can the MAP bacteria be treated with Flagyl?


How about a second opinion? Always a good thing... and what about Pentasa, Asacol's sister drug? I thought when the location was not right for one, the other was then used. Maybe someone else can chime in on this...

To answer your MAP question, it is treated with a combo of 3 or 4 different antibiotics (used simultaneously) over a 2 to 3 year period, if I remember correctly. If you are thinking of using Flagyl for MAP purposes, I don't think it alone would do the trick--especially not for only two weeks. It's my understanding that not only is MAP extremely difficult to culture, but it's also extremely slow to reproduce and VERY difficult to eradicate--even with this powerful antibiotic combination. Scientists still have a lot to learn about the best way to treat it, imo.

Though I know some people have not had success with LDN, others have had *great* success. Those who have had success would most likely disagree with your daughter's doctor's opinion of LDN. Ironically, the doctor who pioneered its use now advocates a diet similar to the SCD to rid the body of candida which allows LDN to work more effectively.

Along those lines, many here would recommend the book, "Breaking the Vicious Cycle" by Elaine Gottschall. She was taught the diet that healed her daughter by an elderly doctor in the early 1960s. Elaine then named the diet the Specific Carbohydrate Diet (SCD) and went on to spend the rest of her life studying food and its effects on the intestines at the cellular level (she obtained a degree in microbiology). It's an interesting read, the online resources are extensive, there are cookbooks published to comply with the diet, and doctors won't tell you about it. As you will read here in another thread, it doesn't work for everyone, but it has worked for MANY.

You mentioned your daughter's condition is considered severe? Another option, though possibly tough to do, is a liquid diet. This is discussed here periodically, is accepted by the medical community, and is considered as effective as prednisone in stopping a flare--if you can tolerate it. You could discuss this with her doc...

I hope she feels better soon!
Mom to 16 year old boy diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Gradually learning/using more SCD recipes, too! (cooking challenged)


Krystal
New Member


Date Joined Sep 2008
Total Posts : 3
   Posted 9/12/2008 8:22 AM (GMT -7)   

 

The dilemma now is does she take an antibiotic like Flagyl before going on any of these medications. She was just started on the Entocort, and as you know the Dr. wants her to go on Imuran. I can't help but think what if she has an infection in there and she is taking steroids and then maybe started on this Imuran. My daughter will make her own choice on starting these medications. Is it worth a try to take the Flagyl? I know Flagyl is not without side effects, and I remember it being a nasty medication. So much to think about here.

Yes I think a second opinion is a good idea, and I'm working on that.

 

Concerned Mom

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