Introduction:
My name is Jason. I am 23 years old from NJ. Last year I was diagnosed with UC after having the classic symptoms. I was in my last year of college and it really sucked but I didn’t let it screw me up and I graduated and just landed a great job :)
Some more about me:
I like going to the beach, playing/listening to music, snowboarding, working out and socializing with friends. I am known for doing really funny accents and speaking a lot of languages. Every time my family gets together my sister makes me do all of my funny accents/characters that I have created from meeting a lot of international people. I never insult anyone’s culture, I just enjoy impersonating accents like on SNL, MADtv, and those comedy central shows. I also enjoy cooking and eating nice food and ulcerative colitis really hasn’t stopped me from that. I’m a pretty easy going guy, smart when I want to be and very caring for others (sometimes too much). That’s me in a nutshell.
Symptoms:
I’m currently in remission.
Getting of 6MP?
When I was diagnosed last year, I was given asacol HD at its max dose of 2 pills 3x daily. That didn’t do a thing for me and I felt dizzy and had bad headaches so the doctor told me that I would have to take prednisone so I started at 20mg and it didn’t really work right away so after a week the doc increased my dosage to 40mg. I was on 40mg for a couple of months and that got me having normal poop again and it felt amazing. (No lie, I actually called my gf to tell her I had a solid sh*t and was almost crying from joy). Anyway, Getting off of prednisone sucked a lot even though I followed the taper instructions from my doc….I had terrible headaches and just felt really tired from getting off the steroids. Shortly after starting my prednisone my GI doc put me on 75 mg of 6MP so that when I weaned of the prednisone I had something to back me up plus I was also taking asacol at its max dose at the time. A few months ago I stopped asac ol completely because I felt it just made me dizzy and gave me headaches. my GI had given me permission to reduce the dose until i wasn’t on it anymore. So, currently i’m taking just 75mg of 6MP and I really don’t like how serious of a drug this is. I really want to see a homeopathic doctor and my family is on my case about it, too.
Here’s my question:
Has anyone here successfully gotten off of 6mp and went all natural? If so, how did you go about it and how did it work out for you? In addition, what are you currently taking?
I spoke to my GI about it and he immediately shut me down and said I have to stay on the 6mp. I really don’t have side effects from the 6mp and I have been flare-free for a year now, I just don’t want to have any problems down the road with my health and i’d love to go natural.
I’ve heard of a lot of natural remedies that could keep me in remission, but am a little scared of taking the risk of having another flare up. I just started my new job and don’t want to have to run to the bathroom 10 times a day.
I would appreciate any guidance, feedback, opinions, etc.
Thank you in advance for your comments and have a great day!!
Medications:
currently on 6mp. want to get off of it asap!
written by Jason
submitted in the colitis venting area
I am 23 years old from NJ. Last year I was diagnosed with UC after having the classic symptoms. I was in my last year of college and it really sucked but I didn’t let it screw me up and I graduated and just landed a great job :)
Jason,
It was a total coincidence, but the story that was submitted one day prior to yours is from Nikki who has some direct experience with getting off 6-MP naturally. here story is:
https://ihaveuc.com/stopping-6mp-thanks-to-scd/
One thing you might want to consider is seeking out advice and/or a second opinion from another GI…nothing wrong and no shame in doing that.
Also, no matter what…don’t stop impersonating characters and having FUN. Seriously, that’s going to be more important than any 6mp, XYZ, pill, diet, gas, whatever.
Best of luck Jason, and thanks for sharing!
-Adam
Hi Adam,
Thanks for posting my story and leaving the comment. I will take your advice and see another GI doctor for a second opinion. I’m not sure if I would be able to handle the SCD honestly, but I’d give it a shot. I’m already skinny as it is and fear that I’d loose a lot of weight…Is it similar to the paleo diet? Or not really?
I’ll keep everyone posted. I’m also going to see a food allergy doctor to see if maybe I have some type of intolerance to certain foods.
PS: Thank you for creating this site – it’s really awesome to get people’s insight!
Hi Jason,
I totally feel your pain. I am also taking 6mp as well as Remicade and I HATE HATE HATE being on such strong medication. The potential long term side effects are enough to make me crap my pants! HA! And I realllly don’t like the side effects I am already experiencing. 6mp whooped my butt the first few months. (started it in Dec 12) In the beginning, my hair fell out, I barfed every day, still pooped a lot, and then gradually, things started to get better. But man I still hate the way I feel and now I’m taking TWO monster drugs. (still poopin a lot too) Why??
Besides that, there are so many people out there who have achieved remission by following a strict diet and taking probiotics and all kinds of things! I’d rather be a guinea pig taking herbs and berries and drinking bone broth or whatever than pumping my body full of poison. Right?! Right.
I’ll have to read Nikki’s story that Adam mentioned. Gosh! Good timing. This site is a wealth of information! So many amazing stories on here :)
Be well!! Talk soon!
Richele
Richelle,
Thanks for the comment! I’m sorry you are having a bad experience with 6MP…I hope you achieve remission soon! Have you ever thought about getting a second opinion? Also, when was the last time you got a sigmoid/colonoscopy?
I recently saw my GI and he said he might be willing to get me off 6MP if he does a sigmoidoscopy and sees that there is no inflammation or traces of inflammation cells he would be willing to get me off it. However, if there is still even slight inflammation in my colon, he believes that if I stop taking the 6MP I will have a full fledged flare up within a couple of months. I’m definitely willing to give it a shot and will make an update when I find out. Worst case scenario, he’ll still see some inflammation and I will just stay on the 6MP. Don’t get my wrong, it seems to be working for me pretty well it’s just the severity of the drug freaks me out.
I noticed that when I am stressed out my UC symptoms start to kick in, even with taking the 6MP. For example, this week I had a super stressful week at work plus I got a tooth removed and I was kind of nervous about that on top of everything going on at my new job (I’m a huge baby when it comes to the dentist). What I’m getting at here is that managing stress is key to managing UC symptoms for me. You know your body best…I know that when I start feeling so stressed and overwhelmed my body gets pissed at me and my UC symptoms start to kick in. I usually go to the gym a couple times a week to release all of the tensions of the day and eat really healthy, which definitely helps. I sometimes go to the Yoga class that’s offered at my gym which definitely helps manage stress, too.
Anyway, enjoy the rest of the weekend and if you are stressed — control it or your body will you control you!
Take care :)
-Jason
Hi again!
As it turns out, my DR wants me to stop 6mp and Remicade! Bad news is, he wants me to try Methotrexate….we’ll see about that I guess. I’ve developed “serum sickness” while on Remicade and 6mp wasn’t working as well as we had initially hoped. My last colonoscopy which was done back in April of this year showed a lot of inflammation throughout my entire colon. I FEEL ok while on 6mp but there is still room for improvement.
I have recently eliminated wheat and grain from my diet…well…I am trying to! Basically I am taking baby steps towards a healthier diet, free of processed garbage and HOPEFULLY will be off ALL meds soon. One day at a time. It’s all we can do.
Oh yeah, and I totally feel you on the stress thing. It’s all a vicious cycle of stress, bad food, flare, stress, sleeplessness, flare, stress eating….etc.
Anyways, take care!
Richele
Not sure if im lucky or unluck but i was on 6mp 8 days before drug allergies appeared. Woke up with fevers over 101-102F the last 3 days. Sudden knee (joint) pain came on and i could hardly walk.
Doc took me off 6mp, next morning 98.6F. Joint pain took longer to go away.
15 mg prednisone
1.2G Lialda
8 days of 6mp…and off. Lol. Miserable experience
Jason,
Our son was diagnosed with UC almost 6 years ago. My wife and I are originally from India. We tried some natural (ayurvedic) remedy that some folks swore by but we didn’t find it very effective and gave up after nearly two years. But in case you are interested, please email me and I will provide the details. I am hesitant to disseminate info to a wider audience about a medication that didn’t work for us. Also please be aware that homeopathy in general offers only a slow recovery. We didn’t want to try it since for UC you need immediate or at least fairly quick results.
Our son was on 6MP but we are currently experimenting with the cabbage juice remedy recommended in this blog. We are fairly successful with limited flare-ups in the last 5-6 months. You may want to start with it in case you haven’t already.
Good luck.
Suresh