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Crohn's Disease Forum » Your Story » I believe Accutane was the beginning of my Crohn's Disease


08-29-2017, 09:56 AM   #1
Jnanabase
 
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I believe Accutane was the beginning of my Crohn's Disease

I'm 26 years old currently, and in highschool I had severe cystic acne on the sides of my face, and all over really. My derm put me on all sorts of antibiotics and they would help temporarily, then it would all come back in full force. The last ditch effort was Accutane. I went through the throws of that medication and have been acne-free(mostly) ever since. Abo it 3 years ago, I started having pain in my abdominal cavity. I ignored it for about 3 years, then the pain started getting severe. I went into my local gastro enterologist and got my first colonoscopy... I also have a long history of kidney stones, etc etc. The results were severe Crohn's, an affected 12 to 15cm of my distal ileum. I've heard awful stories of almost entire bowel resections, and colostomy bags, etc etc. I started Remicade a little over a year ago, and just here in the last couple months, I've had terrible all-over body itching, followed by a trail of hives where I've scratched. I want to stop Remicade, and find a different way to treat my disease other than pharmaceuticals. I was wondering if treating with CBD oil is crazy or not. I've heard some real positive things about it. Any replies are appreciated.
08-29-2017, 10:02 AM   #2
ronroush7
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Welcome. You should let your doctor monitor you. You should tell him you want to stop the Remicade and see what he says. I stopped remicade on my own seceral years ago and developed a flare. Let us know how you are.

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08-29-2017, 10:06 AM   #3
Jnanabase
 
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Welcome. You should let your doctor monitor you. You should tell him you want to stop the Remicade and see what he says. I stopped remicade on my own seceral years ago and developed a flare. Let us know how you are.
Okay, I think I'll drop in today before work to talk to him or my infusion nurse about it. I just don't want thrown on another immunosuppressant. I say "thrown" because my current gastro office is very busy.

08-29-2017, 04:04 PM   #4
ronroush7
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Wishing you the best.
08-29-2017, 07:51 PM   #5
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Think twice prior to taking such a decision... check other persons experience with alternative therapies in forums like this one. Most of them end up returning to meds... if you want to stop, rather propose having your doses of medicine being reduced and try that way. You may add whatever alternative therapy you want. I personally know individuals with the disease, and all of them deciding alternative therapy were forced to return back to medicine, confirming what happens in forums. Exception is EEN, but this isn't really alternative, is it?
08-29-2017, 07:54 PM   #6
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Also, I'd believe that all those antibiotics for acne you've tried have more potential to have precipitated your Crohn's than accutane.
08-29-2017, 08:19 PM   #7
cmack
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Hi Jnanabase,

If it were me I would try CBD but as an addition to the Remicade first. I hope the hives get better soon. I have hay fever, (which apparently goes hand in hand with IBD/Crohn's). For me, chlorpheniramine maleate 4mg tablets taken as directed helps greatly with itching and it is OTC in Canada. There are other antihistamines available but I find this one cheap and effective with no side effects. Also have you considered a good probiotic like VSL#3? I found it reduced a lot of my symptoms after only a few months of use. Welcome and good luck!


Warm regards,

Chris
08-29-2017, 08:28 PM   #8
aypues
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A few thoughts -

My Crohn's was found in blood testing FOR ACCUTANE (prior to starting it). For me Crohn's pre-dated my Accutane use, but it is known that Accutane can precipitate it in some patients. I would contact an attorney if you believe this is the case, as the manufacturer has been held liable in many cases already.

Re the Remicade and itching. Has your doctor ordered an antibody test - Prometheus Anser IFX? If you've developed auto-antibodies to the Remicade that can be the cause. It's less common for people on combination therapy (Remicade + AZA, 6MP, or Cellcept).

Re your GI office being too busy for your liking. Are you happy with your care? I would seek out an IBD specialist if possible in your area, or closeby. Crohn's cases are usually too complex for GI generalists - they don't have the extra training.

Re CBD. I wouldn't do anything (ANYTHING) over the counter or alternative without your doctor knowing. They can sometimes really mess you up.

Good luck!!!
08-29-2017, 08:44 PM   #9
cmack
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Yes! Your doctor should always be aware of anything you plan to change regarding your treatment plan.
08-29-2017, 08:54 PM   #10
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aypues, were you put on antibiotics for your acne? Reason is that many persons have been put long term on antibiotics for acne, when usually for other conditions it's only 7-10 days. Some of those antibiotics like tetracycline have been associated with Crohn's: https://www.ncbi.nlm.nih.gov/pubmed/20700115 I personally know someone who's symptoms have started JUST AFTER its use and been diagnosed within months. While because of confounding factors it would be hard to link Accutane with Crohn's, because for acne antibiotics have been usually used (that might be changing though) prior to the use of Accutane.
08-29-2017, 10:19 PM   #11
cmack
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Interestingly enough, I was on long term tetracycline and minocycline for acne as a youth. I wonder how that may have played a role. The trouble started eight to ten years later but maybe there is a correlation. I never had accutane but I do have IBD.
08-30-2017, 03:54 AM   #12
eleanor_rigby
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There is IBD in my family - my dad has colitis and I have Crohn's. This puts my brother at greater risk for IBD. He had a few years on acutane in his teenage years but so far has not developed any gut related problems. He's 26 now. Hopefully he will continue to not have problems.

I would be wary of alternative treatments as your only treatment for "severe Crohn's". I do think we all have these thoughts when diagnosed and it is part of the acceptance that we have a long-term serious incurable disease. The complications of this disease can be life-changing and deadly. So it really isn't that surprising that the treatment is serious and potent. They wouldn't have us on these kinds of drugs if the benefits did not outweigh the risks. Far more patients with Crohn's will need surgery at some point in their lives than those who won't. I've already experienced open abdominal surgery once and will now do everything I can not to repeat the experience.
08-31-2017, 11:40 PM   #13
aypues
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aypues, were you put on antibiotics for your acne? Reason is that many persons have been put long term on antibiotics for acne, when usually for other conditions it's only 7-10 days. Some of those antibiotics like tetracycline have been associated with Crohn's: https://www.ncbi.nlm.nih.gov/pubmed/20700115 I personally know someone who's symptoms have started JUST AFTER its use and been diagnosed within months. While because of confounding factors it would be hard to link Accutane with Crohn's, because for acne antibiotics have been usually used (that might be changing though) prior to the use of Accutane.
yes!! Minocycline! They talk more about Margolis' study here:
http://www.reuters.com/article/us-ac...67J3GG20100820

Although it is only one study, the correlation is interesting. Is it causative though? This should be studied more! I think all three of us brothers took minocycline from the same dermatologist and I was the only one to get Crohn's.
09-04-2017, 02:24 PM   #14
Jnanabase
 
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Also, I'd believe that all those antibiotics for acne you've tried have more potential to have precipitated your Crohn's than accutane.
Lucy, the antibiotics were only short term, and the Accutane use was quite some time. I can't remember exactly. I just remember one of Accutane's common side effects was moderate to severe Crohn's Disease. I appreciate your words, have a good day!

09-04-2017, 02:29 PM   #15
Jnanabase
 
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Hi Jnanabase,

If it were me I would try CBD but as an addition to the Remicade first. I hope the hives get better soon. I have hay fever, (which apparently goes hand in hand with IBD/Crohn's). For me, chlorpheniramine maleate 4mg tablets taken as directed helps greatly with itching and it is OTC in Canada. There are other antihistamines available but I find this one cheap and effective with no side effects. Also have you considered a good probiotic like VSL#3? I found it reduced a lot of my symptoms after only a few months of use. Welcome and good luck!


Warm regards,

Chris
Chris, yeah I'm interested in some form of medical marijuana, but it is not legal in Indiana. CBD oil from hemp is legal in all of the U.S. Since it is considered "food based". My post is trending today! I'm surprised, and I appreciate all these responses. Have a good one.

09-04-2017, 02:34 PM   #16
Jnanabase
 
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A few thoughts -

My Crohn's was found in blood testing FOR ACCUTANE (prior to starting it). For me Crohn's pre-dated my Accutane use, but it is known that Accutane can precipitate it in some patients. I would contact an attorney if you believe this is the case, as the manufacturer has been held liable in many cases already.

Re the Remicade and itching. Has your doctor ordered an antibody test - Prometheus Anser IFX? If you've developed auto-antibodies to the Remicade that can be the cause. It's less common for people on combination therapy (Remicade + AZA, 6MP, or Cellcept).

Re your GI office being too busy for your liking. Are you happy with your care? I would seek out an IBD specialist if possible in your area, or closeby. Crohn's cases are usually too complex for GI generalists - they don't have the extra training.

Re CBD. I wouldn't do anything (ANYTHING) over the counter or alternative without your doctor knowing. They can sometimes really mess you up.

Good luck!!!
I'm thinking of changing my Gastro office. It's been almost 8 years since my Accutane days and all of the possible legal suits against it are in the past. I think it was up to 4 years after the Accutane. I appreciate the response! Thanks for your advice, I need to think clearly and decide what to do. Have a good one.

09-04-2017, 02:38 PM   #17
Jnanabase
 
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There is IBD in my family - my dad has colitis and I have Crohn's. This puts my brother at greater risk for IBD. He had a few years on acutane in his teenage years but so far has not developed any gut related problems. He's 26 now. Hopefully he will continue to not have problems.

I would be wary of alternative treatments as your only treatment for "severe Crohn's". I do think we all have these thoughts when diagnosed and it is part of the acceptance that we have a long-term serious incurable disease. The complications of this disease can be life-changing and deadly. So it really isn't that surprising that the treatment is serious and potent. They wouldn't have us on these kinds of drugs if the benefits did not outweigh the risks. Far more patients with Crohn's will need surgery at some point in their lives than those who won't. I've already experienced open abdominal surgery once and will now do everything I can not to repeat the experience.
I think I need an adjustment of the Remicade if anything, I'll figure something out. I appreciate all these responses! Have a good one.

09-04-2017, 07:15 PM   #18
cmack
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You can talk to me any old time. Cheers!
09-04-2017, 07:53 PM   #19
wildbill_52280
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The antibiotic doxycycline, which is commonly used to treat acne, has been found to increase the risk of IBD. Other antibiotics have also been shown to increase the risk, i developed severe health problems after amoxicillin clavulanic acid for bronchitis but i also took doxy for acne a long time ago, probably took 3-4 long courses of doxy.
https://www.ncbi.nlm.nih.gov/pubmed/20700115

According to studies accutane is very unlikely to have anything to do with IBD, from what I remember any studies that did find some association, likely was just because most acne patients that took accutane also took antibiotics before that, they call that a confounded variable i think, or "hidden" variable. But what you need is a mechanism because an association is not enough to prove it caused it, and antibiotics fit the bill because other studies show extinction of certain beneficial bacteria that regulate the inflammatory response, logically thing specifically designed to kill bacteria is a more likely culprit. I've found studies showing amoxicillin can specifically inhibit the growth of the species missing in ibd patients. This is why Fecal Microbiota transplants have so much promise and cures have been reported in some patients, see more in the link below this.
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Learn How Fecal transplants restore good bacteria that regulate inflammation to induce remission and how it has potential to be a cure for IBD in the future. Follow the link below.
http://www.crohnsforum.com/showthread.php?t=52400
09-04-2017, 08:51 PM   #20
Jnanabase
 
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The antibiotic doxycycline, which is commonly used to treat acne, has been found to increase the risk of IBD. Other antibiotics have also been shown to increase the risk, i developed severe health problems after amoxicillin clavulanic acid for bronchitis but i also took doxy for acne a long time ago, probably took 3-4 long courses of doxy.
https://www.ncbi.nlm.nih.gov/pubmed/20700115

According to studies accutane is very unlikely to have anything to do with IBD, from what I remember any studies that did find some association, likely was just because most acne patients that took accutane also took antibiotics before that, they call that a confounded variable i think, or "hidden" variable. But what you need is a mechanism because an association is not enough to prove it caused it, and antibiotics fit the bill because other studies show extinction of certain beneficial bacteria that regulate the inflammatory response, logically thing specifically designed to kill bacteria is a more likely culprit. I've found studies showing amoxicillin can specifically inhibit the growth of the species missing in ibd patients. This is why Fecal Microbiota transplants have so much promise and cures have been reported in some patients, see more in the link below this.
I'm not a doctor or claim to have a great knowledge in the field. It was just the only thing I could think of that might have been a contributing factor... no family history, etc... and Accutane has an extensive side affect list, that's all. But good to know, thanks.

09-04-2017, 09:05 PM   #21
cmack
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Hey Jnanabase,

You have great manners, I'm surprised you can put up with our bunch. Everyone means well, and we always have a different perspective to add to the formula. Hang around, you may just teach me something... I hope you do.
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