Bizarre Flare-Up Experience

Hello, hello! I'm a long-time lurker but a first time poster. I want to thank all of you for sharing your experiences and wisdom. I don't know why it's taken me so long to post, but reading about everything has made managing this so much easier.

First, a little bit of history. I was diagnosed when I was young, and I took a low dose of mesalamine for a couple of years before getting bad reactions to it. I stopped taking the medicine and cut out wheat and gluten, and I was fine.

Fast forward a couple of years. I had had no trouble at all. I even spent a year of school in China, and nothing happened. I could exercise normally and even eat wheat once a while. Then, my best friend in school passed away. I immediately had diarrhea and then began to bleed. I didn't want to take any medicine because the side effects get to me, and I was really depressed - stupid, I know, but it was a bad time. It was a minor flare-up, but it was persistent. I lost lots of weight, but the second I started taking suppositories, I healed quickly. Here's the weird part: exercise ruined my gut. If I so much as tried a pull-up, I knew it would make the pain and bleeding much worse. The worst part of the flareup was losing muscle and strength when nobody around me knew what I was going through.

I had another bad flareup a couple of months later. It went away with suppositories, but it took a while this time.
I had yet another bad flareup a couple of months after that. Suppositories did nothing, but 1.2 g x 4 lialda per day did it. The side-effects were terrible, though.

Now, we are September 2012. I have another flareup because of too much exercise, and I don't want to take medicine this time. Dealing with the headaches while at college was just too much. It made studying so difficult. So - I meditated a lot. Meditation has always helped. It took a while, but I went into remission. I thought I was fine. This was November 2012. I put muscle back on and felt good.

January 2013: I was under immense stress because of school, and I had a very mild flare-up. I let it go for a week and then got at it. Meditation got me to bloodless, but I kept healing and then the wound would open. After a while, I decided to try mesalamine again. It made things worse. I kept ramping up the medicine - at one point I was one 2 mesalamine enemas a day, 1 suppository, prednisone, and 4.8 grams of lialda - while meditating 2 hours a day. The medicine did nothing. I went off it - and to my surprise, I healed.

But then I had my wisdom teeth taken out and a colonoscopy. This is in June 2013. That interfered with my sleep schedule, and I bled again. I then traveled to China for work, and I went into remission briefly, but stress from work and occasionally some bad food (very hard to control in China) brought blood again. I've been in and out of remission since. My longest streak was a week and 3 days, but then I decided to go out and have some fun after doing nothing but sleep and work for 5 weeks. I bled the next day. That was last week, and I've been bleeding on and off since.

Now that we are done with history, here's the summary of things.
Basically, no medication I have tried does anything for me. I've tried a lot. The only thing that seems to work is meditation. My GI refuses to see this. He doesn't believe me. He also doesn't believe that I have to be strict with my diet and not exercise to go into remission.

I just feel so fragile. This flare isn't that bad, all things considered - minimal bleeding all the way through - but it's just gone ON AND ON. All I can really eat is white rice and pork and egg.
Even though the bleeding is minimal, it makes me super tired and really screws with my biochemistry. I'm angry and depressed on and off. I'm on some St. John's Wort to help with that but am worried it is an anti-coagulant.

Has anybody else had similar experiences? I'd like to know.

Thank you all so much! Sorry for the length of this post - this has been a very rough 7 months.

I've had similar experience with mesalamines not being the best. I have never tried meditation for a flare but I feel like I read something recently about that-look in the recent posts something about mind/body. Have you failed meds other than mesalamines and steroids?

I say if the meditation helps you keep it up, but I don't know that it can heal you. Perhaps as far as stress can be related to flaring, de-stressing should relate to healing. I've been actively flaring for quite some time too so I know it's frustrating. Had to stop exercising in January and I think losing that has been just as mentally difficult as being chained to a toilet. What is your gi suggesting as the next step?

I think that the mesalazines only do so much but stop working after a certain period of time. To me it sounds like you're allergic to it.

I would honestly consider different drugs. I know prednisone is awful but it will help your colon to heal. Then you can go with Azathioprine or whatever your GI thinks would be good to maintain your remission. It sounds like your flare has been simmering the whole time. Please don't let it get worse because it can. I ended up with pan-colitis at least twice so far and let me tell you it's not nice. Later on suppositories won't be helping much anymore if you wait too long.

Btw I was always under the impression that food in China is healthy and good. Is it really bad?

Thank you so much for sharing your experience. Many here, including me, believe that diet plays a factor in this. I also don't benefit from exercise. Stress is also a factor. It all plays together. No matter what your GI thinks keep doing what your doing for better health. But please take medicine!

gillipsie,

Welcome to the forum.

Sounds to me like you are intolerant of the mesalamines based on what you described.

Also, on the side effects listed for the mesalamines it says it can make your UC symptoms worse!

Anyway, your doc doesn't believe stress and diet has anything to do with UC - what an idiot! Those are major factors in UC, IMO.

Besides slippery elm powder, you can also try l-glutamine.

Are you on any probiotics? they are impt

What are you levels of vitamin d3?

They should be in the high 50's IMO, and yours are probably in the lows teens or twenties.

I hope you start to feel better soon, and if any of these things interest you,  there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Sure people will keep suggesting horror drugs like Imuran, etc.
The fact is that you are not bleeding heavily and you have your own personal experience that meditation once brought you into remission without any meds.
Dont spoil your body with these drugs.
Just have a basic anti-inflammatory drug like Balasalazide(since mesalamine creates headache for you)
Clinical theories prove that Balsalazide+VSL3 is one of the most effective combination to bring clinical relief/remission within 8-12 weeks..
balsalazide directly targets your colon unlike mesalamine.

GIs have common theory, they go by the book.
Try this, thy that, try the previous one again, Then preds, then Imuran,Humira,
Then ultimately they will suggest you surgery.

just keep up the spirits.
I am no expert, but still this is my take on your condition

thanks soystud... I feel some Guys are just hell bent on suggesting meds that will do more harm than good.

we can't argue though that meds work for the vast majority of people. I have no problem taking pred, immuran, remicade, humira, etc if it means I get to leave my house and spend time with my family.

I've been fortunate to not have too many side effects. With pred it was a bit of around face. Immuran gave me some sore joints. However, I was able to do my job, spend time with people I love, and live a somewhat normal life.

I've tried diet, meditation, and even some of that hippy crap. At the end of the day the I love big pharma.

so poop, it's not you that's pro-drug, it's your darned colon ! please have a long talk with it/him !