Crohn's Disease "Patient"

I really feel for you.

Your tale sounds like a play by play of what I am going through. Mine is so bad I've filed for SSDI as it isn't possible for me to be hired, much less retain a job (2 BS degrees, a separate AS and a tech degree, with CIO experience....can't get hired due to this). At some point it triggered (or released) my bipolar and schizophrenia...

MJ is the only help that works without turning me into a zombie or risking side effects that are worse if not fatal...

Keep a stiff upper lip and don't give up, I changed a shrinks mind on mmj when I gave he a stack of papers and proof her own association (APA) supported the use of MMJ.

Hope you get the help you need!

 

Hon, cannabis slows the transit time in the gut (or what you have left of one ). Even in your case cannabis is a valid medical treatment! There are scientific studies that prove this and I have them for you!

See my sig down below? Click the first link for the medical studies you need to, hopefully, convince one of your pig-headed doctors that you are STILL disabled from your Crohn's and cannabis can help. I feel what they are doing to you is like expecting a leg amputee from gangrene, to walk out of the hospital because the gangrene is gone!

The section of my list that you want is "Crohn's/ IBS/ UC". My list is big, so it may take a moment to fully load. It's worth the wait. (I imagine you are thin as a rail- is cachexia on your state's list?)

I sincerely hope you will take the time to acquaint yourself with the contents of my list. It can be quite useful to the medical patient in a number of ways. You can get a free PDF of it by emailing me- see the bottom of my sig for the email address. Hope to hear from you soon!

Get in touch with the local NORML and other legalization groups. They may know of a "friendly" doctor.

I wish all states had laws as SANE as California's! Exactly why should a "safer than aspirin", medicinal herb need to be controlled in any way? I think getting a doctor's recommendation is a bunch of BS! No other half-way safe medicinal herb has such insanely complex restrictions, nor do I need PERMISSION to use them! (And the kids? We give kids hard drugs frequently,- ritalin and Concerta, to name 2- why not try the less dangerous cannabis first?) Even as a plain old intoxicant, it is far safer than alcohol or tobacco!

(sorry- medicated! I'll step off the soap box now. lol) But look at my list, hon- even just the titles will give you an education!



Granny

 

Remicade is scary stuff. The side effects listed are enough to make one go "no thanks." I tried to do without for 2 years and was totally miserable. While cannabis helped some it wasn't enough for me. Don't go on too long if your current condition is "debilitating." I was in the same boat, and I at least have somewhat of a life now. The disease was gonna kill me, so I just broke down and finally agreed to the Remicade. I figured try to get some good years and if the drug kills me, it just delayed the otherwise inevitable.

Have you contacted this group to see if there are doctors with the cajones to recommend in your state?
RIPAC: Medical Marijuana in Rhode Island

Best of luck. Terrible that laws are in place and yet doctors have to "fear" giving their patients access, or care to push pharma instead. Or, non-mmj states where people go months without their medication. (( ))

 

I know one thing you could do. Get copies of your medical records from your doctor. Make extra copies to keep for your own records. Then, look up the info provided to you by Granny Storm Crow, and put those pieces of information with your records. Then, see another doctor. Take all that info with you, and explain to him everything you explained to us. Do this until you find a doctor who will help you. Research your local doctors online, and by any other resource made available to you, even word of mouth. Just ask around. You should be able to find a doctor somewhere who will help you out.

Good luck.

 

Man, I really feel for you. For RI apparently being one of the most liberal states in the US it certainly feels like Arizona when it comes to anything that is "controversial" besides abortion. (Sorry for the rant.) Anyway, as you said you have started smoking without a MMJ card. I wouldn't let a piece of paper hold you back from feeling better. Besides, we'll hopefully see some change coming in the next few months when they decide if we get dispensaries or not.

 

I've had crohns for ten years now. I am 29 next week and when I was 19 I almost died from a hole in my gut. I hated going to the DR. so I didn't untill I was almost dead. Rite away they took 2 feet of my intestine out and told my it was from a sunflower seed or tooth pick. After a year to recover from that surgury I started to fell the same symtoms. After the colonoscopy I was told I had Crohns. Next was a Dr. who had me take 18 pills a day which inturn made me feel even worst. Not to mention I would see the pills I took in tack in my stool. Next came the Remicade. Stay far away from that shit. The Dr. that had me on that told me I would be on Remicade for the rest of my life, even after I told him I felt worst. Needless to say he was very upset at me when I told him I will not take that drug anymore. To bad all these Doctors want is their kick back from these drug companies and don't want to fix the problem just cover it up with a bandaid of man made drugs with horrible side effects.
During this entire time I would smoke pot and had noticed it helped me in many ways. My pain was more tollorable and I was able to get the munchies and maintain my weight of 115 lbs. Im 5'7" and should have a healthy weight of 145lbs. I must go at this time to get my grand daddy purp meds, but I will get back on here when I get home to finish this true tale of living with crohns.

 

If you have been diagnosed with Crohns then thats it there is not a cure! I was diagnosed with Crohns when I was 12 also. 20 years living with Crohns. I have taken every med under the sun. I ripped the remicade needle lout of my arm it just about killed me on the spot. Never again!!!

 

I can relate. I have Ulcerative Colitis and popping 21 pills a day and pumping a steroid drug to stop the bleeding only with bad side effects.

I already made the decision to stop it all because I already know the deal.

I just have no place to toke but will be getting some this week. I will have to find out what to do with it.

 

You might consider using tinctures! When you get your cannabis, use half to smoke, and put the other half into Everclear vodka (Use the strongest you can find and buy the smallest bottle). I get little brown dropper bottles from the health food store for a buck each- great for things like almond and lemon extracts in the kitchen, too! (Hubby like to add one or two drops of almond extract to his morning coffee- why buy the expensive stuff when you can flavor it yourself? )

To make the tincture. put finely ground bud into a bottle. Add vodka. Store in a dark place for a week, shaking the bottle once a day. Strain out the used plant material (I dump it into the brownies I make). Start with one dropperful of tincture rolled around in your mouth for a few minutes on a "I got nothin' to do" day. Wait half an hour. Figure out the dosage you need. Potency depends on your cannabis and how much you used- some tinctures are best measured by drops, not dropperfuls!

If you add mint and/or peppermint extracts to the tincture, it becomes your "home-made herbal breath freshener" and can be used anywhere!

Smoking isn't the only way to go!


Granny

 

Yeah, my grandfather is on remicade for his ulcerative colitis, let me tell you.. everytime he goes to see the Doctor they tell him they "see improvement" but he doesn't see any improvement, he also has kenesma (sp?) and hes been miserable for months now.. I hate NY for not getting their MMJ bill through

Best of luck with your situation. I know nothing has worked better than Cannabis for my IBS. NOTHING.

 

Just so you guys know the occurrence of cancer due to Remicade is extremely small. It's smaller than the chance of you dying while driving.

On the other hand the risk of cancer in inflamed organs is quite high. Inflamed joints is extremely common with Rheumatory Arthritis and with Crohn's as well (I myself have had Pancreatitis twice / had huge ulcers in my intestines for years).

I've been on Remicade for the last 6 years (infusions every 8 weeks), and I can say with confidence it's probably helped save my life. I gained 35 pounds / grew 6 inches the first year I started taking it.

Just thought that was worth posting.. I literally met with one of the leading Crohn's physicians in the U.S. a few weeks ago to discuss possible withdrawal from Remicade and had a very long discussion with him.

It works for some people, it doesn't work for others, like most man-made drugs.

 

Well said. Although the possibility of side effects does of course scare me, I was absolutely on the path to "checking out" before I went on the Remicade. I've gained back the 40 lbs I lost. I had arthritis so bad I could barely walk, and even trying to sleep was impossible I hurt so bad and was on the can 15 times a day with fistulas and abscesses. I was convinced I was going to die, and I waited two years before I finally broke down and went on the Remicade. I responded very well to it (same day I got my first infusion I was out walking the dog. It was that quick for me.) Nothing else I had tried worked, and a lot of it made things worse. Cannabis made things more bearable, but it certainly wasn't going to bring me back from the "depths" so to speak.

 

Hey man don't really have much advice except I did think that crohn's was usually accepted for MMJ from what I've heard. Anyway though just thought I would share my story. My best friend in the entire world started flaring up with chrons junior year of high school (about 4 years ago) and he is still constantly seeing doctors has had so many surgeries I even lost count. He even got a make a wish for how bad his case was and has basically been stuck in bed for four years due to his addiction to hydrocodone because he was perscribed so much of it. He has finally been better for almost a year though but not completely (he had to get the bag and everything out of his stomach). It was really sad to basically lose my best friend to this disease, he just isn't the same anymore but I still love him to death. I don't really know if you care but just thought I would share.

Best of luck man!

I respect anybody who fights this disease.

 

Monoclonal antibodies (Aka Humira, Remicade, Etanercept etc.) are basically the top treatments for Crohn's and UC.

When I say "top," I mean they're the most drastic. If you're classified as having severe Crohn's or UC (as I do, I have severe Crohn's) then they often use these to treat.

Before their introduction (roughly 20 years ago) no other Crohn's/UC medications came even close to having the amount of success that Monoclonals did.

Now, that being said, it's still not a very good success rate. Only about 50% of patients who try it respond well. But that's much better than can be said for any alternatives

 

So that was part 1 and now Im back to write part 2....
Ok so where did I leave off? Oh yeah I was ranting about the doctors. So I can't say all Dr.'s are just out for their kick backs but to me it seems that way. Here is how my current health is going without any man made drugs. I feel way better then I did on any of those man made drugs that many different Dr.'s have given me over the years. I am only taking PROBIOTICS like the kinds you would find in yogurt, Fish oil, living a stress free life style and sometimes I take D-iu400 so it keeps my immune system in check if I've been running myself to the bone.

I took the route of having a food allergy test done so I could stay away from certain foods that would upset my stomach. Then I had a stool sample test done to see what kind of microorganisms were missing from my biology. I found that I was missing good bacteria from my diet and had to much bad bacteria which in turn was eating a hole through my gut. These are the things I had to do to get away from doctors that just wanted to cover up the problem instead of try to fix it. My advise to anyone reading this is to trust you own body feelings and use the internet to your advantage. Im a strong believer that the human mind can do anything you want it to do even if that means curing a disease that everyone says has no cure. Live happy feel happy the rest of the time be positive in everything that you do in life it can only help you and it won't kill you to try.

DON"T SWEAT THE PETTY PET THE SWEATY