33 yrs w/ Crohns and Ready for Something New

[ASM]

Drugs Tried: Sulfasalizine, Pentasa, Pednasone, Entocort, Questran, Flygal, Imuran & B12 Shots

Current Drugs: Entocort, Questran & B12 Shots

I was diagnosed in 1980. I was 22 at that time. At the time I was just finishing off my academic studies and preparing to start my working career. This disease came on so fast and was so debilitating that I thought I would not finish my schooling, though I did finish. I had already accepted a job, but with Crohns, I could not do it; I did find another one more suitable. The first thing you learn is that every decision you make in life must be prefaced with: how will this affect my Crohns? Since my diagnosis I have had two resections and three fistula repairs/patches. To add insult to injury, there are the side issues associated with Crohns, like being anemic, the skin lesions, bone density loss and so on. For all those out there who are still learning about Crohns, there is a positive side to the disease, at least there was for me. With Crohns disease, you are constantly under the supervision of the medical profession. In my case, from what seems like a lifetime of living with Crohns disease, I have also had two run-ins with cancer. Both times, because of the close supervision of the doctors, led to early detection and I was able to deal with them quickly. Only scars and no Chemo.

What brings me to this site is my interest in using marijuana to ease some of the symptoms. One of my cancers was melanoma. It showed up shortly after I started using the Imuran, so I had to quite. Now, all I can take is Entocort. I am not in rough enough shape to use Remicade and I don’t want to get there. The last time I used pot was in the mid ‘80’s as a smoking cessation aide; a requirement after my first bowel resection. At that time the legal ramifications of possession were too sever to continue its use. However, my situation has changed so that now I can consider it as an option. My question to the form membership: is it worth the risk? Are the benefits real? I am aware of its ability to simulate the appetite, but how about pain and inflammation? I plan to ask my Specialist the same questions. I know I need to do more research, simply because it is still illegal.

 

[David]

Hey there ASM and welcome to the community

In short, I think medical marijuana can be an excellent supplemental medication for many. I'd start by reading this thread to hear from others about how they've fared on it.

With bone loss, I'm worried about your long term use of entocort. Yes, it's not as bad as prednisone, but it's still a corticosteroid and can can loss of bone density. How long do they plan to have you on it?

All my best to you.

 

[ASM]

I am not too worried about the entocort. Its claim to fame is that it breaks down quickly rather than float around in the body as prednazone does. It becomes the lessor of evils. In my case, the disease is active in the small bowel. It needs to be kept in check because only a small amount of inflamation can lead to a blockage rather quickly. The doctors appear to have a very limited number of tools at their disposal to combat this disease.

 

[David]

Please be careful with it. As this study showcases, Entocort (budesonide) can still very much lead to bone density loss. That study show it's WORSE than prednisone whereas other studies have shown it's not quite is bad but still bad.

In addition, studies have shown that Entocort is ineffective for maintaining remission beyond 7-12 months.

With your existing BMD and that data, I don't know that long term Entocort is the best solution for you. Yes, we don't have as many weapons as we'd like against Crohn's, but I think there may be some better ones for you. If you'd like to explore that possibility, I'd be happy to help

 

[ASM]

I would certainly be interested in learning what else is available to combat this disease. I have been told that Sulfasalazine and Pentasa are essentially placebos so patients feel they are doing something to treat their condition. Unfortunately, the best help with tangible results that I have ever received is surgery, but we try to avoid that. At present, the Doc plans to keep me on Entocort for the rest of the year. I take calcium and vitamin D supplements as well. There are many life style changes that a person can make. Quitting smoking is a must (done). Then there is de-stressing (done). Then there are the dietary changes such as only bottled wtr (I make my own), reducing the 3 sin food additives: salt, sugar and fat (working on it). Next are the harder ones: caffeine, alcohol, gluten and dairy. Now you are talking about eliminating complete food groups, which is not a good idea.

 

[Ya noy]

It's illegal? I thought Canada had legalized marijuana for "compassionate medical" purposes. Or is that just in certain regions?

 

[David]

ASM, have you looked into Low Dose Naltrexone? There is also a Canadian Biotech with an extremely exciting treatment option in clinical trial right now that you may be eligible for. Pretty much no side effects but great results. Check out http://www.qucrohnstrial.com

 

[ASM]

Hi Ya noy. A few comments on pot in Canada. Yes, they legalized it for compassionate reasons. However, you have to get the approval of a doctor and not all Docs agree it is effective or will support it. If you think you will just go to a different Doc, not so easy in CD. My family Doc retired several years back and it took me 2 yrs to find a new one. I see my specialist twice a yr and have to book 4 months in advance. There are some Docs that sign off without a patient history but I don’t know who they are.

 

[Ya noy]

Hi Ya noy. A few comments on pot in Canada. Yes, they legalized it for compassionate reasons. However, you have to get the approval of a doctor and not all Docs agree it is effective or will support it. If you think you will just go to a different Doc, not so easy in CD. My family Doc retired several years back and it took me 2 yrs to find a new one. I see my specialist twice a yr and have to book 4 months in advance. There are some Docs that sign off without a patient history but I don’t know who they are.

Good possibility there might be a member or two here who might know of some Canadian doctors you can get a subscription from. I recommend going over to the medical marihuana section and asking there.

Best of luck!

 

[ASM]

Hi Ya noy. I must say, nice avatar. I am not sure I am going to go the marijuana route. I came to this site while checking out the other threads dedicated to marijuana while trying to do my research. This low dose Naltrexone looks interesting and should be considered. There seams to be a lot more research going on for this disease than ever before; likely because of the increased incidence of the disease. When I first got sick, this disease primarily struck young adults in the prime of their lives. Today it appears it is also affecting children as well.

 

[ASM]

Hi David. Thanks for the info on this low dose Naltrexone. From what I read, this appears to be a completely different way of dealing with this disease. At present, I feel good; that is likely the Entocort. I take a very low dose of it as well, 3 mg. The drug trial for this is in Vancouver, a long ways away for me.