Hi everyone. I'm a 23 year old graduate student that was diagnosed with Crohn's when I was 19. My disease is not as severe as some others, but still affects my life. I'm currently on sulfasalazine, doctor doesn't want me to be on immunosuppresents or steroids and neither do I. I've been managing the disease by taking several anti-inflammatory supplements, vitamins, sulfasalazine, and using marijuana. Marijuana has been the most helpful of any of these. Unfortunately earlier this month I was forced to quit using mj because I may have upcoming drug testing for my master's of social work internship next semester. Needless to say I've been feeling pretty bad for the last few weeks. I hope to gain some knowledge and support from the community here.
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Hi and welcome to the forum! 
What are your symptoms? Which anti inflammatory supplements? Have you had all of your vitamin levels tested so you know what you need to be supplementing?
Do you know where your Crohn's is located? Mine was in my ileum and part of my colon and I was taking Asacol (time release and releases in the TI and colon) for a while which is a similar drug to the one you're taking now. The sulfa drug made me pretty sick when I took it. To me it sounds like the Sulfasalazine might not be enough especially since you're not able to take MM for the time being. Although I'm wondering if you were still having symptoms while you were using the MM?
Check out the subforum on MM here: http://www.crohnsforum.com/forumdisplay.php?f=63 There's a fair amount of people on the forum who use it and have noticed a difference when starting it or stopping it completely.
What are your symptoms? Which anti inflammatory supplements? Have you had all of your vitamin levels tested so you know what you need to be supplementing?
Do you know where your Crohn's is located? Mine was in my ileum and part of my colon and I was taking Asacol (time release and releases in the TI and colon) for a while which is a similar drug to the one you're taking now. The sulfa drug made me pretty sick when I took it. To me it sounds like the Sulfasalazine might not be enough especially since you're not able to take MM for the time being. Although I'm wondering if you were still having symptoms while you were using the MM?
Check out the subforum on MM here: http://www.crohnsforum.com/forumdisplay.php?f=63 There's a fair amount of people on the forum who use it and have noticed a difference when starting it or stopping it completely.
I have not had much testing done, b/c my crohn's has been relatively mild and hasn't greatly impacted my life for the last several years. Coincidentally I have also been a regular user of MM for much of that time. Using MM I still had more bowel movements than the average person but never had the diarrhea/ constipation problems I've had since stopping MM a few weeks ago. Still also had periods of dull abdominal pain when using MM but wasn't as intense as it is currently. I assume that mine is located in the ileum judging from the lower right abdominal pain. I have also found a gluten free diet helps prevent flares in my case, my flares usually occur from eating something I shouldn't, or during periods of high stress. I know I have anemia so I usually take iron, along with turmeric anti-inflammatory,a supplement called transfer factor (it's supposed to help regulate the immune system and has helped somewhat), and a multivitamin.
When was your last colonoscopy or have any tests been done recently so you know how things are going on the inside? There are a lot of people on the forum who have mentioned very little/few symptoms yet wound up having some pretty serious issues inside. Its important to have tests done on a regular basis to make sure you're on the right treatment plan. When in a flare I'd have a colonoscopy once a year and once I started going into remission it was every other year and now its every 4 years. You were diagnosed 4 years ago so I was just wondering if your doctor was doing regular testing. People with Crohn's are at a higher risk of getting colon cancer so its good to have regular testing done even while if you were in remission.
Are you sure you're taking enough iron? Did you have blood work saying it was low, started supplementing and got retested a month later to make sure it was within the normal range? For me it took a couple months to get the right dose to put me in the normal range. I take 650mg/day along with a multi (only 18mg in that though).
Sorry, so many questions. Will you eventually be able to start using the MM again in the future? Hopefully in the near future we wont have to deal with all the drug tests for MM so people don't throw themselves into a flare.
Are you sure you're taking enough iron? Did you have blood work saying it was low, started supplementing and got retested a month later to make sure it was within the normal range? For me it took a couple months to get the right dose to put me in the normal range. I take 650mg/day along with a multi (only 18mg in that though).
Sorry, so many questions.
Will you eventually be able to start using the MM again in the future? Hopefully in the near future we wont have to deal with all the drug tests for MM so people don't throw themselves into a flare. Yes I should be able to start using again within the next few weeks. I don't know if I'm going to be drug tested yet, but to be on the safe side I stopped. I'm going to be extremely annoyed if I find out my internship placements don't drug test! Also sucks that I don't live in a medical marijuana state currently, I'm convinced without MM I would not have been able to finish college. I'm already planning on moving to a medical marijuana state after I graduate with my master's.
My blood work last visit did say my iron was low, but I was only taking like 100mg, now I take 325mg. Maybe I should start taking 650mg like you.
Well, I have a few unique health conditions in addition to crohn's that make my doctor wary of doing colonoscopy's and other tests. Basically to give you the short version, I was a premature baby (1 lb. 11oz., born at 24 weeks) because of complications from the umbilical catheter that was used back then to save my life, I developed portal hypertension of the liver (basically total blockage of main vein to liver), this caused internal bleeding, and eventually a shunt was put in to route blood around the liver when I was 8. The shunt worked, and my body also formed capillary veins to route blood to the liver. But, when they went in during my initial diagnosis they found a lot of varicose veins in my lower abdomen and rectum (most likely caused by the portal hypertension, doctors still don't really know why they are there) so my doctor is wary of doing a colonoscopy because of bleeding risks. My doctor also doesn't want to put me on immunosuppresents or steroids b/c of my unique liver.
My blood work last visit did say my iron was low, but I was only taking like 100mg, now I take 325mg. Maybe I should start taking 650mg like you.
Well, I have a few unique health conditions in addition to crohn's that make my doctor wary of doing colonoscopy's and other tests. Basically to give you the short version, I was a premature baby (1 lb. 11oz., born at 24 weeks) because of complications from the umbilical catheter that was used back then to save my life, I developed portal hypertension of the liver (basically total blockage of main vein to liver), this caused internal bleeding, and eventually a shunt was put in to route blood around the liver when I was 8. The shunt worked, and my body also formed capillary veins to route blood to the liver. But, when they went in during my initial diagnosis they found a lot of varicose veins in my lower abdomen and rectum (most likely caused by the portal hypertension, doctors still don't really know why they are there) so my doctor is wary of doing a colonoscopy because of bleeding risks. My doctor also doesn't want to put me on immunosuppresents or steroids b/c of my unique liver.
wow thats quite a story you have will, its great to hear that you managed to control your crohns with mm, and supplements, not many can do that without resorting to immunosuppressants or steroids. for the times that i did try mm, i noticed that i had pain that im assuming my mind would ignore, but i think the mm would shed light on the pain, and boy i was craving things i shouldnt eat. what has your doctor said to try or be on to control your crohn's, have you tried the 5asa? like lialda and asacol?
and for imaging, have you had an MRI?
and for imaging, have you had an MRI?
With the iron you want to keep track of the doses and blood work. My iron was low so I started taking 325mg/day and then tested it again a month later and it didn't go up at all. I upped the dose to 650mg and tested again a month later and its now in the normal range. You might want to start low at 325mg (that's the usual amount in one iron supplement) and then retest a month later to see if that helps. No need to take extra if you don't need it.
If you can't do colonoscopies there are many other tests that are less invasive such as an MRI, MRE, CT scan, small bowel follow through, barium enema, possibly a pill cam and even an ultrasound when done in the hands of an experienced technician.
Sorry to hear about your past health history. Its hard going through this stuff when you're a child. It makes sense now why your GI and you are avoiding certain meds. Thank you for sharing.
If you can't do colonoscopies there are many other tests that are less invasive such as an MRI, MRE, CT scan, small bowel follow through, barium enema, possibly a pill cam and even an ultrasound when done in the hands of an experienced technician.
Sorry to hear about your past health history. Its hard going through this stuff when you're a child. It makes sense now why your GI and you are avoiding certain meds. Thank you for sharing.
