My Crohn's patient is in remission !!

[itisme]

I have two buddies with chrohns. One can do this set up and the other can't, he works for the state. I will tell him though.

 

[brotherindica]

"Chefro, thats great to hear! I'm a fellow Crohn's sufferer. Similar situation but I've been solely using MMJ(edibles/vape/smoke) with probiotics for ~2yrs now....absolutely NO pharms. Its awesome to hear how your patient is doing better, and with some time she might be able to get off the Humira!"

I've dealt with Crohn's disease for the past 15 years of my life and I have to say that while cannabis is great, it can only provide symptomatic relief at best. These new biologic therapies (Remicade, Humiria) are far more effective in providing long-term relief and remission than regular maintenance medication (Mercaptopurine, 5-ASA's, Budesonide, ect). They have the actual ability to induce long-term remission, rather than just dull symptoms.

I've spent 4 years being steroid dependent, because my regular maintenance medication was ineffective. Every time I would taper off prednisone, I would get terrible migraine headaches, and my disease would flare up again, leaving me in the same place I was before. Eventually, Remicade was invented, and I was fortunate enough to have access to it. Because it was administered through an IV line, I felt perfectly fine 8 hours later, and I was able to successfully taper off of the steroids. This was the first time I felt like a normal person in 7 years.

Eventually I developed antibodies (resistance) to Remicade and had to discontinue its use. I tried various maintenance medications with varying degrees of success, but I still experienced frequent symptoms and flare-ups.

When I was introduced to cannabis, I found that it was good for appetite stimulation, bowel control, as well as pain relief. All of these things were wonderful, and helped improve my quality of life, yet, like other maintenance medications, it was not the end-all to my health troubles.

Because Crohn's disease is a progressive illness and a life-long journey, symptomatic relief would not be enough to keep my Gastrointestinal tract from destroying itself. I first became sick at the age of 8. With many years ahead of me, I felt that if, eventually, I didn't find an effective treatment, something that actually treated the disease, then I would face the very real possibility of a colonostomy, or some other super fun surgery.

Over the past 3 months, I have been using Humira. While injecting ones self is less pleasant than using cannabis, the effects of Humira have been incredible. I've put on more muscle, have had more energy, have been far more active, and over-all, healthier than I have been in 15 years. If my luck holds out, I'll be able to avoid surgery.

While cannabis is a effective stop-gap measure, please don't allow yourself to end your search for treatment with cannabis. There are some highly effective pharmaceutical products on the market that can radically alter the course of your plight, with many more in the works.

There is a huge difference between achieving a tolerable level of functionality through symptomatic relief, and actual remission. I urge anyone who deals with Crohn's disease to continue their search for a more effective treatment. In time, you will find it.

I believe that cannabis has had an appropriate place in my treatment, and has provided significant relief, but it could never achieve the results that these new biologic therapies have.

Now that I've gone totally off course of the OP's thread, I'd like to thank the brave people who provide cannabis to those who need it. When I had barely eaten anything in weeks and was too weak to take care of myself, it was the work of people like chefro420 that provided a respite from my suffering, and gave me hope.

Thank you, I am eternally grateful.

First off, glad to hear you're doing better. That is the reason we're all here FIRST and FOREMOST.

Not to be too nosy, but what are your dietary restrictions? How about when on Remicade/Humira and when off? Ever had any specific allergen testing performed?

I also need to ask about your cannabis use, how much/how frequent/how long using/etc? The reason I ask is relying on cannabis, IMO, requires a much, MUCH, more significant amount than a traditional person.

Again, purely my experience but I can easily eat 2oz a week in just edibles. Add in bubble hash and bud(mostly vape)...that can reach 4oz a week no problem. That being said, combined with a monitored diet(no personal allergens), large variety/diversity of probiotics, I've been in remission (real, actual colonoscopy verified remission) for ~2 yrs now. Not systematic relief, repression...actual remission. My Md (haven't seen him in over 6 months) is at a loss and doesn't know what to say. I'm very happy with my progress compared to where I was several years back, knocking on death's door.


I'm sorry to hear about the antibody resistance with Remicade. That is the very unfortunate downside of these particular meds, personally know 3 people that occurred to and unfortunately 2 are now having similar problems with Humira.

A concern of mine is the age of the patient using these medications. The FDA actually increased the cancer warning on these new, popular, anti-TNF meds last year. IMHO anyone, especially those in a "younger" age range, seems to be opening themselves up to a risk to other serious disease(leukemia) using these medications. These medications are fairly new and long term (15 yrs plus) hasn't really been done.

That being said, if you really are in bad shape then the "immuno" drugs work wonders. I know an individual who is ready to visit the the ER(horrible shape) before his Remicade transfusion, goes to office and gets it, eats anything and everything after....McDonald's, Taco Bell, KFC all that nasty fucking shit! Not saying its the food, but maybe he'd feel slightly better eating "normally". He is currently 20-30 yrs of age and the drug barely works for him after ~6 years of use. Long term treatment is unsure at this point since a patient develops antibody resistance to an immuno-suppressant medication they often develop resistance to other immuno-suppressant medications, usually at a quicker rate. Believe he was going back to Pred cycles for now...poor fella.

I'm very happy with my treatment and really hope to avoid any and all pharms as long as possible. They have their place....but that place isn't in my body.

I hope you continue to do well with treatment and live a long, happy, productive life.

She is on a gluten free diet . Not sure about the allergy testing , but I think she has. I will ask. Thanks for the info!!

NICE! Gluten seems to negatively affect Crohn's patients across the board.....and its in damn near everything. No problem, PM me if you need the name of a good allergen lab.

 

[dickcorn]

I'm not yet to the same level of understanding my body as some of you, but I'm working on that. (thanks again for the info brother) But has anyone else notice they get sick more often, and for longer periods with this disease? Had a sinus infection for like ten days, felt good for like two now i've been sick again for another week with a different kind of infection. This usually happens a coulple times a year.

 

[pottymcpot]

I have a buddy with Crohns, and have told him a bit about using medical mj. What strain would be most benifitial for someone suffering from Crohns? Sativa/indica? What about dosage?

 

[big mike]

Have any of you been allergic to these injectables? remicade,humira,cimzia, and simponi all paralyze me for a few days to about a week. Absolutely cannot move any of my joints and have pain beyond anything i could imagine if i do try to move.. Been up and down the eastcoast to teams of specialists and they dont understand it. in 2010 i was approved for tysabri and have been dealing with migraines ever since the second treatment, so it was discontinued after the 3rd(crazy side effects). I havnt been able to medicate with mmj because of an arrest in '08, hopefully ill be done in May.
Next month i go see dr. habba to check out if its something with the gallbladder(habba syndrome?) Anyone have any info on it or him?

sorry for the offtopic question, but i just needed to ask other crohn's patients..

 

[PetFlora]

I highly recommend that she start doing Dr Hulda Clarke Liver Cleanses, to get rid of pharma residues that build up in the liver. I have done ~ 14 of them

 

[brotherindica]

I have a buddy with Crohns, and have told him a bit about using medical mj. What strain would be most benifitial for someone suffering from Crohns? Sativa/indica? What about dosage?

I've been very happy with indica dominant hybrids for the most part. Pure indicas work well too, but may be a tad heavy for some. I find pure/very high sativa strains can be too stimulating and probably should be avoided. I prefer "stronger" strains....a brief list of stains I've come to really like.

-Qleaner (Very J.C. dominant, J.C. IMO is excellent for cramps/spasms)
-WhiteFire OG
-4SD
-Killer Queen Kush
-Alien Kush F3
-SSSDH (rather sativa dom, but the right pheno can be amazing)
-ECPD
-Herijuana or K.O. Kush

Would like to try Williams Wonder or Afghani Bullrider, supposed to be great for Crohn's. Both were two strains highly recommended by Michelle Rainey, R.I.P.

Hope that helps

Have any of you been allergic to these injectables? remicade,humira,cimzia, and simponi all paralyze me for a few days to about a week. Absolutely cannot move any of my joints and have pain beyond anything i could imagine if i do try to move.. Been up and down the eastcoast to teams of specialists and they dont understand it. in 2010 i was approved for tysabri and have been dealing with migraines ever since the second treatment, so it was discontinued after the 3rd(crazy side effects). I havnt been able to medicate with mmj because of an arrest in '08, hopefully ill be done in May.
Next month i go see dr. habba to check out if its something with the gallbladder(habba syndrome?) Anyone have any info on it or him?

sorry for the offtopic question, but i just needed to ask other crohn's patients..

Mike, I have heard of individuals getting hives after Remicade transfusions....my guess would antibody resistance starting to develop in their cases.

Can't say I've ever heard of your symptoms before, really sorry to hear that! Truly hope you find something which works for you, even more sorry to hear about the bust. Thought I remember reading the boards a couple years back and seeing your story.

Can't say I've heard of Dr. Habba, but certainly worth researching.

Hope you'll be able to get mmj soon, even if Jersey did fuck up their laws. 10% thc cap/3 strains/6 grows/dispensaries (ran by Christie affiliates too)....fucking douche bags!!!

I highly recommend that she start doing Dr Hulda Clarke Liver Cleanses, to get rid of pharma residues that build up in the liver. I have done ~ 14 of them

Thanks for the tip PetFlora. Interesting stuff worth looking researching.

 

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[brotherindica]

BrotherIndica - Currently, I am not following any sort of dietary restrictions. In the past, when I hadn't been on any medication and I would start to feel symptomatic, I would stop eating sugars, grains, dairy (with the exception of certain cheeses, which were tolerable). This did seem to help prevent me from going into a major flare-up, but my symptoms would linger.

With Remicade/Humira use, I am not actively following any sort of restrictions. Sometimes my food is healthy, sometimes its not. What does seem to make a difference is how often I eat junk food. Say I'm craving a burger, the next day some BBQ, the next day some pizza, then something else greasy for good measure. By the end of the week, I will be feeling worse, but my symptoms won't return to what they were without the Humira, provided I lay off the crap.

I haven't had any specific allergen tests done.

As for cannabis use, I would say that my intake is/was moderate in comparison to you. I smoked probably 7 grams a week during a flare up. I realize that edibles would have been a better choice, but the amount I needed was cost prohibitive. A generous person did give me 2 big freezer bags of brownies (I have no idea how many grams/oz went into it), and that seemed to work nicely and lasted about a month. I just wasn't the most functional. I do have a vaporizer, but the effects don't seem to last as long as smoking and it never seems to give the level of relief I need, unless I sit around all day using it like a hookah to maintain relief (it's one of the pencil sharpener/plastic tubing whip type vapes).

Congratulations on your remission! That truly is a blessing! Sounds like we've both worn the same (proverbial) shoes in regards to "deaths door". 2 years of remission is wonderful, certainly longer than I've gone, and I hope that you don't stop feeling good anytime soon!.

Interestingly enough, I've been in remission before without any medication other than cannabis (colonoscopy verified, like you) and still had symptoms. Another time I was symptomatic and a small-bowel follow-through turned out normal as well.

Anyhow, thank you for sharing and I hope that you continue to live life on your own terms well into the future!

Thanks for sharing! Your restriction list when symptomatic looks very good, glad to hear you can eat what you like for the most part now. I'm very happy with my diet, but do miss the real deal cheese steak or pepperoni pizza from time to time.

I never thought much of allergen testing, but had it done and found some sensitivities which made things worse. Never realized some things bothered me as much as they did. Get your posts up and I'll PM you the name of a good lab if you'd like.

Your cannabis use sounded very similar to mine initially. I used it symptomatically at first, in smaller doses. Also similar I discovered much like you, through a large batch of brownies, a great reduction in symptoms. That experience further pushed me to explore cannabis. I totally agree about vaping. Most vapes, IMO, don't seem to give the relief smoking does. I imagine this due to a lower temp, maybe missing full vaporization of CBD. I've found a few I like, Volcano, Extreme Q, SSV. Saw a new one which hits like a bong, very thick vapor, which I'm looking forward to trying.

Yeah, I've found that a good quantity of herb is needed for this treatment. Very, very, difficult unless one can grow their own or directly know one who does....unfortunately. As far as dosing, I've found starting small and working up to work best. Just starting to eat 2-3g brownies probably isn't the best idea.....hehe. Smoking/vaping small amounts more often, bits of edibles here and there...increasing as time continues. In several months it isn't hard to dramatically increase your intake without being a stoned, unfunctional mess.

THANKS for the comments! After where I was and where I am now, just feel like I need to spread the word. Help others who suffer with our illness, regardless of treatment method....know what it's like to stumble in the darkness.

Hope you continue to do well with your treatment! Thanks again for sharing your experiences.