What I've learned about UC

It was the winter of 2010. I had always had an iron stomach and an iron constitution. I lifted weights and was as strong as a horse. My mom had had colitis. But, I could eat anything: Dave's Insanity Sauce, steak sandwiches, anything.

I should edit that. I was lactose intolerant. But, I could eat anything else without a problem.

Not that I did. I was a health nut. I lived on kefir and grass-fed meats and a diet that was mostly paleo.

Then, it hit me. I came down with an awful bronchitis. I had it for weeks. I couldn't move without coughing. I started coughing blood one night and went to the emergency room. I was in really bad shape. I knew it - and the look on the doctor's face when she listened to my lungs confirmed it. They did a chest x-ray and came out and said I needed prednisone and antibiotics.

Now, I freaking hate any drugs of any kind. I pushed back and said I didn't want anything. They said I was an adult and could make my own decisions but that my kids might not have a father within a few days if I didn't do both. I still wanted to push. I asked again and again. But, truth be told I was just not myself. I couldn't think straight and didn't have the will to resist.

I complied. I took a shot in the butt of prednisone and then filled a prescription for a four-day course of prednisone and antibiotics.

Five days later I was feeling a little better. The cough was subsiding. But, I suddenly started to feel like I was going crazy. My heart was racing. I felt like I had to get out of my body. I had no idea what was going on. Nobody had explained withdrawal from steroids to me.

Off to the hospital I went again. They gave me Xanax and sent me home.

Slowly, I returned to normal - or so I thought. My poops were really loose. It was weird.

But, I carried on. Surely, it would subside.

It didn't. But, it was certainly liveable. Two or three stools a day.

Then, I took my kids camping. It is the only three weeks of the year that I let my diet go: lots of seafood, homemade ice cream, even fries sometimes.

I woke up in the middle of the night and couldn't make it to the toilet. I was squirting in the woods.

And, it wouldn't stop. I was waking up needing to poop.

During the day, it was even worse. It seemed I had to poop every fifteen minutes.

I got back and had the usual tests and the sigmoidoscopy with a biopsy. Then the diagnosis: colitis.

I went on Asacol, absolutely refusing the prednisone my doctor wanted to put me on. There was no way I was going through that again and I told him so.

That slowed it to maybe seven times a day. Obviously, that wasn't acceptable.

Then, I started reading.

I found most of the natural stuff all of you have tried. As you know, none of it does a lot. But, all of it seems to make a small difference.

After eliminating all gluten and dairy and any artificial sweeteners, I slowly got the colitis down to two or three semi-solid bowel movements a day.

I had a sigmoidoscopy in the Spring of 2016 which showed a lot of improvement. The inflammation was at a 1+.

I was pretty happy.

This continued until last November. My doctor during a regular checkup had a new sense of urgency. He wanted my to really try to get the colitis into remission. I really haven't ever had remission in seven years. He pushed prenisone. I pushed back. Ultimately, we decided on budesonide.

Well, this stuff seemed great! I was on it for four weeks. The colitis seemed almost like it was gone. One loose bowel movements a day.

Then, we withdrew the budesonide but added in four Apriso a day.

Well, you already know what happened next. Within 10 days, the colitis returned.

I called my doctor. He pushed again for prednisone. I was teaching six days a week and there was no way I could go through that withdrawal again while doing that. What if I went into it during class? Or while driving 80 miles per hour on the parkway?

My doctor reluctant try agreed to a long course of budesonide.

This was when I found Healingwell. I got serious about curing myself.

I began to put on weight.

I was losing drive at the gym. A girl randomly came up to me one day a few years ago and gave me a sort that read, "The Animal of the Gym." I had a collection of shirts with my gym logo on them from winning Challenge the Trainer. I beat them all in push-ups and pullups.

One day a girl at the desk asked me skeptically if I'd won the shirt recently.

My hair was turning grey and receeding.

I went to the dentist and my gums were bleeding and I was developing gingivitis.

Worst of all, I hadn't been able to perform well in bed since the colitis diagnosis. But, now the problem was really bad.

Enough.

I had had enough.

My doctor retired. His back won't allow him to practice any longer. He's a great guy and open to alternative treatments. But, he's been declining, too.

Well, I'll be darned if I was going to put up with this any longer. I was going to cure myself.

I started digging and reading and digging and reading.

First, the ED.

Laugh if you wish. But, I'm a guy. There's no way I could take this.

I had tried every trick to boost testoterone. I had tried every nitric oxide enhancer I could.

Then, I tried sea kelp.

Pop!

Man, it worked!

For a month.

And, then it stopped.

Then, I thought I needed something else. I wasn't looking in the right direction. I tried weird, random searches.

Then, I found it: dopamine - not testosterone!

I got some n-acetyl tyrosine. And, it was like magic.

I kept digging.

I found the threads on here on Amino Acid Balancing.

It was like a revelation.

I have colitis. I have ED. I cured my ED by tweaking my colitis. And, this doctor named Stein was claiming he could manage colitis by treating dopamine with amino acids.

It made SO much sense. I've never smoked. But, we know that many smokers come down with colitis after stopping smoking.

So, I tried to do the amino acid balancing myself.

Three weeks ago, I also stopped the budesonide.

Three months ago, I cut back calories. I didn't lose weight.

So, then I REALLY cut calories to just one meal a day. I felt disgusting.

Nothing.

The budesonide had to go.

For the first two weeks off budesonide nothing happened with me weight.

But, the colitis came back with a vengence. And, the arthritis in my wrists, elbows and knees came back, too.

There's a guy at the gym who can barely move because of arthristis.

I didn't want that to be me.

So, I kept digging more.

I began making bone broth. I drink one every day at the end of a workout in lieu of a protein shake. I also take Marine Collagen 1&3 and Collagen 2 from chicken sternum.

I began to see how everything is weirdly conncted.

In order to make the dopamine thing work, I added choline and copper. I was already taking silica.

My hair has grown back! But, even better between the tyrosine and the copper, it has changed back to its natural color!

Wrinkles have fallen away. My skin is smooth and soft.

I've lost 10 years of age in a few months.

And, then the weight started to fall. I've lost 10 pounds in the last week after being stuck for months.

And, the arthritis has virtually gone away!

Oh, it's still lurking. I can feel it there ready to spring on me if I stop drinking bone broth.

But, the pain level is down to a one or a two!

Oh, and I should talk about my gums, too. So, I've been using Stimu-dents religiously. They did not help alone. My gums just stayed sore. Then, I started using the Stimu-dents and then immediately swishing my mouth with propolis in honey.

Last week, I had a checkup and cleaning and my dentist and the oral hygienist were amazed. They simply couldn't believe it. They both kept saying, "it's not even the same mouth!"

The only thing that isn't working is the colitis. I'm going quite a lot and it is liquid.

I'm taking four Apriso daily.

I'm also following the protocol as outlined in the original case study as posted by Canada Mark in 2013.

It's working amazingly well for ED. That problem is gone. But, it is not working for colitis, and I'm not about to spend thousands on dosage changes and urinalysis with Dr. Stein.

It's odd that my colitis symptoms are significantly worse post-budesonide than the we're before budesonide.

My latest two additions are zinc carnosine and n-acetyl glucosamine.

I am under no illusions that they will provide a cure. After all of my reading here I am convinced as most of you are that I have MAP swimming get around in my colon and a leaky gut from a dissipated mucus lining. That's why I was getting the arthritis. Until someone figures out how to get rid of MAP and rebuild the mucus lining, there will be no cure.

I know some people are taking three antibiotics for a year. Until I can be convinced that all of the MAP would be wiped out, there seems to be too much risk that only the strongest would remain.

They strongest would then multiply. Then, where would I be?

Anyway, right now I'm just trying to get back to a manageable place with the colitis. Eventually, I'll have to find a new doctor. I have two months of Apriso and VSL3 remaining to try to figure out what to do.

But, I'm not impressed with these drugs. It really seems there's a rebound effect where you pay the piper for using the. It's like that old midas commercial. You can pay me now. Or, you can pay me later.

Right now, I'm done paying later.

I don't want to do myself any more damage.

Using the drugs got me fat, limp, tired, balding, arthritic and with torn cartilage in my knees.

Getting off of them has gotten my health back.

I am back...

Excuse me. I have to poop...again.

I'd advise you both to take your medications as prescribed by your doctor. You're only prolonging your flares and prolonging your suffering by being noncompliant.

Thank you to all three of you who responded to mympost.

I agree with you, Flowers, that inflammation is bad for your entire body.

But, the Budesonide was bad for my entire body, too. I was developing gum disease because my immune system wasn't fighting the bacteria at the gum line. I got a bad cold. I was gaining weight uncontrollably.

You're right also that the doctors say the Budesonide doesn't do any of those things. And, yet, it happened.

My adrenals were tapped out. I was doing everything I could to change that. But, with the drug, I just couldn't.

I understand what you're saying that the Bude solider was controlling the inflammation. But, why were the symptoms largely under control before Budesonide and much worse now?

These drugs devastate the body. I am only now looking and feeling good again - in spite of having colitis syptoms. At least I feel my old drive, I feel fit, my hair is back, and my skin is healthy.

What now? Methotrexate and my now full head of hair? That's what my doctor had in mind for an end point if a new round of prednisone didn't work. And, I could tell he didn't think it would. You're right. Steroids simply do not work to do anything with this disease except as long as you are taking them.

So, take an old chemotherapy drug like Methotrexate?

My doctor refuses to prescribe biologics. In his words, "I don't want to kill anyone. They are really dangerous."

Losing my colon sounds really dangerous, too. But, if I can get myself back to where I was in November on Apriso and natural supplements, three poops a day, I won't lose my colon.

The one thing I think we all four agree upon is that there is a cause, like MAP, that isn't truly being addressed by any drug they give us. We are playing a waiting game in which we try to live well and fully and keep our colon healthy until they learn more.

I've been on 6MP and remicade for over 3 years, have yet to experience a side effect from either medication, and have instead found a remission. Suffering from UC symptoms sucks and is just pointless suffering. Why prolong it?

They're not dangerous drugs. Rather they've helped many of us regain a good quality of life. I believe you have a great deal of misconception about the safety of these drugs. The odds of those medications helping your UC is 65 percent. The odds of experiencing a side effect are less than 1 percent.There's some good reads/watches on risk versus benefits that'd help you, at least they helped me from the Crohn's and Colitis Foundation of America:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

I would not write off any UC treatment, as you might keep ypur remission on the horizon rather than were you can reach it.

Now, you two have introduced me to a new thought.

Rectal mesalamine. I'm definitely going to dig into it.

Thank you for the kind welcome.

One thing which I am genuinely curious about.

Every new poster which comes here seem to be a self-proclaimed health nut. It is purely anecdotal and only something I've seen on this forum, but it's - to me at least - quite striking. Where are all the people who are couch potatoes and live off takeaways and cans of beer?

Is there something protective about not being a gym bunny or not eating a high-protein/low carb diet, when it comes to getting UC?

Let me give an example of what I'm talking about. But, first, let me contextual I've my comments by saying I don't mean to say you're wrong, Tea Cup. In fact, I've noticed the same thing. There may well be something to what you're suggesting.

That said there's this couple at the gym. I really like th3m. They are in their Seventies and they ooze class. The man suffers horribly from rheumatoid arthritis. He can barely more, anymore.

I admire that he comes and gets on the elliptical machine. He stoic ally presses on and refuses to give in to the arthritis.

But, he is by no means a gym rat. He's happier with a book in his hand. He'd really rather not be at the gym.

I wanted to share my bone broth discovery in the hope that it might benefit him.

Well, he'd never heard of it.

I'm quite certain that he is not a part of the Healingwell arthritis forum.

It would simply not occur to him to do searches on the Internet that would lead him to finding us here.

Sorry if I've missed any details, but how many colonoscopies have you had, and what did the pathology say exactly? I saw you mention "colitis", was it ulcerative colitis? Did they check for pathogens? C diff?

I personally am no health nut. I grew up in a family where we didn't eat tons of junk food, compared to others, but we certainly weren't all organic, gym-goers or anything. I drink and eat takeout, and eat restaurant food often, not fast food, but I go out a lot - constantly eat sushi, and other things that are considered "bad" by some. When I had UC, I didn't eat any of the "bad stuff", but none of the dietary restrictions I put on myself did anything positive for my situation. The only one that helped was fasting, that could prevent movements all together if I was diligent and stuck to it. Unfortunately, you can't survive forever on water.

I had surgery, and while it is scary, it has vastly improved my situation. I do not understand why your doctor would write off all the biologics, seems ridiculous. I think i'd consult with a GI at an IBD center to get another opinion. Better to have all the doors open at this point, than closed. You should get stool tests firstly. Secondly, you should get a colonoscopy and pathology to find out the extent of the inflammation. You should get another opinion. You should get on some rectal meds & potentially try a different mesalamine medication. While Apriso works well for some, it's not for everyone.

Your mother's poor lifestyle choices likely weren't to blame for her UC - the smoking certainly can have an impact, but the fact that you've developed it, and never been a smoker, makes me think there is a genetic component. People often judge the chronically ill, like they are slothful, grease eaters, who brought this upon themselves. It's the last thing we need... having a chronic condition is hard enough but having people pointing fingers as if we caused it by being "worriers", "slobs", "unhealthy", "fast food eaters", "eating gummy bears", "drinkers", is very hurtful and uncalled for. Everyone wants to believe they are different, and they can beat this with some OTC herb or diet, but not everyone is so lucky. If it were that easy, no one would be here. We would all be drinking 'cabbage juice' (insert your own little folklore cure) and living life with 1 formed poop a day

Let's hope,your condition stays mild, cabbage juice doesn't work for most.

What I've learned about UC is that UC has to be taken seriously, as under-treating UC can lead to it spreading in extent and severity. I understand some are inherently-leery of medications as UC is a young-person's disease hitting many in there teen's 20's, and early 30's, all people who were healthy and have never needed medications prior to a UC diagnosis. And to that end, noncompliance is a big issue with UC, and many needlessly make it difficult for themselves. UC is likely an autoimmune disorder or at least an immune-deficiency. When it's your immune system that's gone haywire and attacking-self, it isn't something to be trifled with. Inflammation slowly builds up when we're under-treated, and we might think we're fine for multiple months until that latent inflammation builds up to a tipping-point and suddenly the sluices open up, and we have an awful, bloody, diarrhea mess of a flare to deal with.

The majority of UC patients need a daily maintenance medication, and the anti-inflammatory mesalamines are 90 percent topical and only 10 percent topical, and well tolerated by most. For those that isn't enough it's time to think about suppressing our immune system either through immunomodulators (like imuran/6MP) and/or biologics like remicade/humira.

For those who are pre-disposed to try naturals, do but add them to the anti-inflammatory mesalamines and not in-exclusion of mesalamine. There are many miracle stories of those who "cured" their UC with some alternative/supplement or diet, however, they are often selling a product or one-off outliers that cannot be broadly reproduced with other UC patients. UC isn't a puzzle that can easily be thought through using pubmed articles and easily outsmart UC. There's some heck of smart individuals here who've been trying to do so for decades, and there's no easy out. We can convince ourselves we know how UC works, and we can just do X to relieve ourselves of it, however UC is highly-illogical. I wish I could paint a rosy-picture that'd make us feel happy and warm of easy outs but the reality is cold, hard, and sucks.

What helps one individual, does nothing for another, and makes another's symptoms a whole lot worse. UC is a very individual disease, with wildly different responses from individual-to-individual. The prognosis of UC is very wildly different person-to-person. Some have very mild cases of UC that take the very mildest treatments and stay stable for decades. Some of us require very strong medications to have a good quality of life. Some of us have cases that are non-responsive to everything under the sun, and surgery quickly finds us. We don't know what hand of cards we are dealt at the beginning. It can just be a wild ride for some of us.

For me, the mesalamine enemas (Rowasa) have helped me the most. I do steroid supp about 2X/week and my doc is okay with this. While I take Lialda as insurance, I really couldn't do without the rectal meds. Also you can try a good probiotic and add fiber (such as metamucil) but slowly build up.

There are some alternatives you can still try if you are open-- some people have improvement with a nicotine patch (although if you were a never smoker start low) Also, there are some herbs such as slippery elm you could take. Finally I have been reading about a few herbal formulas that they actually recommend at Cedars Sinai hospital which has helped people...specifically Isatis Cooling (do a search on here for more comments) A bit of trial and error and hope you can see great improvement.
B

Thank you, Coffeemate.