Ulcerative Colitis Info
I was debating writing this earlier anyway, but with the Jansen Podcast info on the board I figured I'd throw some info out there about Ulcerative Colitis - what it's been reported that Ambry Thomas has. I'm not a doctor, or a Colitis patient, but my wife was diagnosed with UC about 4 years ago and we've been pretty active in the community and with the Crohn's and Colitis Foundation. There are an estimated 3,000,000 Americans with IBD, but it's not a particularly discussed disease - probably because it involves poop.
Here's what the Foundation says about UC:
https://www.crohnscolitisfoundation.org/what-is-ulcerative-colitis
"Ulcerative colitis is a chronic disease of the large intestine, in which the lining of the colon becomes inflamed and develops tiny open sores, or ulcers. This condition is the result of your immune system’s overactive response."
And another one-pager:
https://www.crohnsandcolitis.com/Content/pdf/ulcerative_colitis_101.pdf
Basically, UC is one form of Inflammatory Bowel Disease, the other being Crohn's. They are similar but a bit different. UC is an auto-immune disease that "attacks" the colon (Crohn's can be more systemic). Patients most generally lose weight because they don't absorb nutrients from food, the food just goes right through them. Frequent bathroom trips are a common symptom.
In general, as an auto-immune disease, UC patients are in one of two states - either they're in remission or in a "flare". The first flare and symptoms usually lead to a diagnosis. Now that Ambry has been diagnosed, the goal will be to get the flare under control and get him feeling healthy. If he's gaining weight, he may be on his way to remission. Most IBD patients manage their disease with biologics, drugs like Remicade, Humira, etc. There are also steroidal treatments - like prednisone - to try to get patients into remission. For some patients, surgically removing part or the entire colon is the only option. Some patients find a treatment that works for them and they are symptom free. Others can struggle to find treatment that works, it's a pretty individual disease. There is no cure, it's a chronic disease.
Here's hoping that Ambry finds treatment that works for him and that he's feeling healthy soon.
More official information here:
https://www.crohnscolitisfoundation.org/
https://www.crohnsandcolitis.com/ulcerative-colitis
August 16th, 2019 at 1:14 PM ^
It's a complex thing ... the Wikipedia article ( link ) is pretty comprehensive.
I've had colitis-like symptoms, and it's no fun. No fun at all.
Let's hope Ambry Thomas's condition is short-term and that he regains health and strength.
Related: the whole topic of the colon, the microbiome (gut bacteria), and its relationship with the rest of the body's health is really fascinating from a technical perspective. I'm no doctor, but I've read enough to know there's a complex inter-relationship, and nobody really knows the whole story yet.
August 16th, 2019 at 5:00 PM ^
There's actually a bunch of research on the relationship of your gut and depression as well. Low serotonin contributes to depression and the vast majority of they body's serotonin is produced in the gut, not the brain.
August 16th, 2019 at 1:30 PM ^
Thanks for this:
here's a link to a diet that may help: http://gaps.me/
Since it's a diet not drugs it's non standard treatment that cant be recommended by professionals.
However, I did it for a short time and saw marked improvement quickly.
Good Luck to Ambry and all who suffer.
Worst part is it can easily lead to avoiding social situations and lead to that most serious topic ...depression.
August 16th, 2019 at 3:20 PM ^
My wife's found benefits from the Low FODMAP diet as well.
August 16th, 2019 at 4:00 PM ^
No doubt it's the carb exclusion diets that are key, we were only meant to processes them during inactive winters and in small amounts.
August 16th, 2019 at 2:07 PM ^
Thank you JeepinBen, you have provided some good information. I have had ulcerative colitis for 25 years, and yes it is an autoimmune disease and can be quite difficult to control. The relatively new biologics are a godsend for many (the one I take blocks or reduces white blood cells going to the colon). Before those, I just had to rely on pretty high doses of prednisone (which help to suppress the immune response), sometimes for long periods of time, to go into remission (and then of course when going off it, having to taper off). In addition to the biologic, I have two other medications that help me keep the UC under control.
Since a severe knee injury I suffered 40 years ago, I have put on weight and definitely weigh more than I should. About 20 years ago, I was in really bad shape because of the UC and lost a lot of weight. It was really weird to get compliments about how good I looked; I was malnourished and anemic (due to the constant bleeding from my colon).
There can also be other manifestations besides just the colon. I have had attacks of acute iritis related to my UC. It seems strange to have the eyes be affected, but it is a result of it being an autoimmune issue. It can also take some time to figure out a remedy that works: a diet or medication that works for one person might not work at all for someone else.
August 16th, 2019 at 3:12 PM ^
Yep, my wife's waiting for insurance pre-authorization to start a biologic. She's been on mesalamine and it's not working for maintenance anymore. Tapering off budesonide isn't working, so it's on to a biologic.
August 16th, 2019 at 6:28 PM ^
Yes the cost can be quite high. I get infusions of Entyvio every 8 weeks. On the insurance information it shows the cost for the drug plus the administration (through IV) without insurance would be over $17,000 (for each infusion). Now that's a bit inflated, I don't think anyone or any insurance company ever really pays that amount, and the most I've ever paid out of pocket is $1,500 per infusion, and after 2 or 3 I've met my deductible. Still, it's not the kind of thing most are going to be able to afford without decent insurance.
August 23rd, 2019 at 12:54 PM ^
Your comment about receiving compliments on your weight loss really hit a nerve with me. I had very bad flare up that lasted many months. Few people can understand the level of discomfort that comes along with that.
Yet, the amount of compliments that I received about my weight loss was incredible, and frankly, disorienting. There I was feeling as if I'm rotting from the inside (with little control over it) and people were asking for fitness tips.
It taught me to empathize with those that have body image issues. We have a societal view that all weight gain is bad (with a few exceptions, of course) and all weight loss is good. That's far from the truth in many cases.
August 16th, 2019 at 2:26 PM ^
My son was just diagnosed with UC this morning. He's been dealing with symptoms for 4 years. Hopefully the medication helps him.
It's not a pleasant disorder to live with.
August 16th, 2019 at 3:10 PM ^
Sorry to hear. The CCF has been very helpful for us, and having an active GI doc has been huge. You've got my twitter, let me know if we can help at all with info or resources.
Also, just knowing what you're fighting can be a huge relief. Now there's a name to his symptoms, and something he can research, and a known toolbox.
August 16th, 2019 at 2:29 PM ^
For the record, I just visited the site in a long time
BUT
How do we know Ambry actually has UC? Its mentioned he has colitis. They could be infectious colitis (short term thing) or a non-chronic subtype of inflammatory colitis. Just wondering.
August 16th, 2019 at 3:11 PM ^
Good point, I hear "colitis" and I think UC. Not sure of any confirmations one way or the other.
August 16th, 2019 at 4:18 PM ^
sam webb confirmed it as ulcerative colitis on the WTKA mgoblog roundtable yesterday.
August 16th, 2019 at 3:02 PM ^
I was diagnosed with colitis, do not remember being told there was more kinds than ulcerative, but this was in 1976 or 77.
Was prescribed azulfadine, 8 pills
a day for a week, then 6 a day,
supposed to then be 4 a day for a week, then 2 daily for a week.
Fortunately, after two weeks it disappeared, so far, not to return.
I consider myself blessed.
August 16th, 2019 at 3:20 PM ^
Thanks for the education. That disease sounds absolutely brutal.
August 16th, 2019 at 3:47 PM ^
Flares sure are rough. But once folks get into remission, if they can stay there, life can be pretty normal. I know plenty of folks with zero symptoms, once they find treatment that works.
August 16th, 2019 at 5:26 PM ^
Allow me to shed some light on this. I have had Crohn's since just before my freshman year at Michigan in 1985. Had never been so sick as I was for that week.
Crohn's and UC are very similar, but Crohn's affects the ileum (junction of the large and small intestines) and UC is only the colon (large intestine).
I went another 14 years without being diagnosed,which was a mystery as I frequently ran a low grade fever, until 1999 when I had my second and last flare up.
Fortunately, a GI doctor diagnosed me and put me on mesalamine, a medicine with aspirin-like properties that calms the inflammation.
Fast forward 10 years and the medicine wasn't working so my doctor put me on Remicade, a biologic infusion that has worked ever since.
With the exception of those two times, I have lived a normal, non eventful life. Besides the infusion every 7 weeks, I'm healthy in my 50s. I do get more colds than usual because biologics lower your immune system.
As long as Ambry takes medicine regularly, he will likely live well and can compete at a high level. Sure, there are severe cases, but if one medicine doesn't work or stops working, then the GI specialist will prescribe something new. There is now Remicade, Humira, Xeljanz, Stelara, Entyvio, and soon others.
The only risks that Thomas faces are Lymphoma (usually only affecting younger people that take a biologic and another medicine called methotrexate), so these aren't prescribed together often, and lymphoma is still rare. He also faces a higher risk (2x the normal rate) of colon cancer which affects UC but not as many Crohn's patients.
I've been fortunate to have the top doctor in the country for this disease and the guy he trained. According to my doctor, what you eat probably has little to no impact on the disease. I find that caffeine can sometimes make me achy, but that's it.
Without knowing Ambry's case, I would say he could be back very soon. I don't think it's season ending. The medicine works right away, within a few days.
August 16th, 2019 at 5:40 PM ^
Interesting your doc says what you eat doesn’t matter. Have heard many say dirt is important.
August 16th, 2019 at 5:57 PM ^
Glad to hear you are doing OK. A grad school classmate of mine had really bad Chron's Disease issues 2 years ago to the point where he lost so much weight and looked like he had end-stage cancer. That's how bad he looked. The last straw was he woke up in pain one day and basically bedridden and could not do anything. Parents got a second opinion at a top hospital in NYC and the doctors finally realized that part of his colon was so diseased, they had to resection it--as bad as it could be. He got through the surgeries OK and still does the Remicade infusions. He is doing much, MUCH better.
Here's hoping Ambry Thomas' case isn't at a critical-advanced stage where he needs an invasive procedure (doesn't sound like it, but still has to watch himself).
August 16th, 2019 at 7:40 PM ^
Thanks. I've had excellent care and maybe super fortunately it's under control. As for resection, I can't comment on this particular case, but my doc said resection in the end doesn't work. The disease ends up attacking another section.
There's tremendous progress towards a cure. I asked my doc if he was ever going to retire, and he said no because of the rapid rate of progress towards a cure. He said they're even looking at Chinese herbal remedies.
I know a number of people that I grew up with who were diagnosed, which is unusual. This leads me to believe it is a combination of something genetic and environmental to trigger the onset.
August 17th, 2019 at 9:35 AM ^
Prayers for Ambry. I was diagnosed with Crohns when I was 16 years old and during a flare up I dropped down from 140 lbs to 112 and had to be admitted to the hospital.
It can be a very scary thing to deal with when you’re flaring up and things are out of control. I found that managing stress and diet as well as the right medications helped me manage Crohns.
In 1999, about 4 years after being diagnosed with Crohns, I had a pretty amazing religious experience and believe I was healed from the disease. I haven’t taken any medication for it since then and haven’t had any flares. I’m still blown away by this.
Prayers for everyone and their loved ones dealing with these chronic conditions.
August 17th, 2019 at 12:25 PM ^
Shit-post.
I mean that in the most appreciative, thanks for sharing expertise and knowledge way possible.
August 17th, 2019 at 10:18 PM ^
Lots more known about this disease than say 40 years ago.
August 18th, 2019 at 3:27 PM ^
My daughter was also diagnosed in college. Hers was controlled quickly, with only a couple of flares. (They predicted a flare in during pregnancy but that didn't happen) I know that the disease can vary from mild to very severe. Hope Ambry has a quick remission.
August 18th, 2019 at 8:27 PM ^
I have UC. Was diagnosed two years ago. I take multiple supplements to complement my medication and I am doing fairly well. But I went through several very long and painful months before I found a regimen that works for me. I am religious about taking the supplements.
It won’t be an easy task for Ambry to return to the field this year. UC hits from all angles - zaps your energy through anemia, some joint pain, weight loss, dehydration, and the emotional pain. It really wore me out for the first several months. I was in very good shape prior to the diagnosis, and now it’s tough. I’m just grateful for the relative health I have. Now I’m on cruise control.
I hope Ambry gets on the field ASAP. That would be amazing to see!
August 18th, 2019 at 8:30 PM ^
I've had Ulcerative Colitis for over 20 years. It's a tough disease as frankly most of the medical treatment out there treats symptoms and not the root cause (which is tough to find). A lot of the drugs come with potential very unpleasant side effects.
If anyone is here looking for something to try, I followed a protocol from the book "Restoring your Digestive Health" by Jordan Rubin and Dr. Joseph Brasco (GI). I followed about 90% of what it recommended and it made a GIANT improvement in my health. Warning - the book does read in spots like a bit of an infomercial as it recommends products from the company Jordan Rubin was at when he co-wrote it. Outside of that, it was super helpful.
Hope this helps someone.
August 19th, 2019 at 1:02 PM ^
Alternative surgery is out there for severe cases. I struggled with UC for several years in the early nineties and it kept coming back worse with every flare. I had a BCIR in 1994 and have lived symptom free since. No diet restrictions, no athletic restriction. I hope Thomas is only in need of medication.
August 19th, 2019 at 7:28 PM ^
A good probiotic formula can help tremendously for any gut related problems. I had C. Diff and took probiotics and it helped alot. What u eat can increase flare ups. Certain foods cause inflammation in the body especially all the GM foods.
August 20th, 2019 at 1:42 PM ^
I'll second the probiotics. A few years back I was given unnecessary antibiotics for something that was misdiagnosed. I ended up not being able to eat anything but the most basic, bland foods. No more dairy, cabbage, many veggies, etc. Bread bothered me. So I started making my own yogurt and sauerkraut. It took about 2 months of eating those two items every day and I was eating normal again. I still eat yogurt and kraut every day. I can't stand the taste of the sauerkraut but I eat a tablespoon or so a day along with my normal vitamins. I read once that a 1/4 cup of homemade kraut contains more probiotics than a 100 count bottle of the top brands.
August 20th, 2019 at 9:02 AM ^
I've had UC for 6 years and once you learn the trigger foods it can be manageable. The worst are bad flares which, for me, are triggered by stress. Usually getting on prednisone (a steroid) and going to a diet of veggies that are easy to digest works. I gotta say tho........wearing tight yellow pants on Saturdays would make me nervous as hell. We are with you Ambry. It does get better and no doubt the best in the business are helping you.
August 21st, 2019 at 7:30 PM ^
I grew up with a stepfather who had Crohn's disease. He married my mother 45 years ago, and at that time, Crohn's was a relatively unknown disease, and the treatment was surgery -- cutting out large swaths of intestine -- which resulted in massive weight loss. It was a lifelong challenge for him, especially because he traveled a lot for business. He used to joke about knowing where all the best airport bathrooms were. His sense of humor helped him get through. His daughter found out she has Crohn's 15 years ago, at age 43. She controls her Crohn's with diet and has been pretty successful at it. As you know, with your wife, it's a disease that's with you all the time, 24 hours a day. I wish my stepfather had lived to see all the different treatment options. He died 15 years ago of Crohn's related kidney failure.
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