Ulcerative Colitis Tips


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Tom’s Success Against Colitis with Fexofenadine

Introduction:

I’m a 26 year old man living in Austin, Texas. Online advertiser by day, musician by night. Diagnosed with ulcerative colitis on New Year’s Day, 2 years ago.

Symptoms:

Currently, symptom free.

My Colitis Tale:

I never trusted the doctors I had. The symptoms began in late 2009. Typical stuff, loose stools, occasional blood, cramping, etc. I went to a general practitioner, who directed me to a gastroenterologist. The specialist wanted to run tests on my poop for bacteria and such. After submitting the sample, I waited around for the result which came back as “healthy” so he put me on anti-diarrhea medicine (Immodium I believe).

I stumbled through until Christmas when I went to visit my family. I came down with terrible flu like symptoms and was in bed for days at a time with fever. Worried, my family took me to the emergency room in their town who gave slightly better advice that something might be wrong. It was beyond their specialty though, so they gave me some food and drink to rehydrate and sent me on my way. Back in bed, finally a family member was worried on new year’s eve and took me to the big hospital. I was checked in and diagnosed with UC within a day.

I was immediately put on Prednisone, I.V. pain killers and had multiple blood transfusions due to the very low blood pressure and loss which was continually occurring in the bathroom. I left the hospital after 5 days, with the typical Prednisone side effects of megalomania and extreme appetite. I ate like a maniac (coolest side effect I’ve ever experienced from medicine). Unfortunately, the majority of Prednisone’s side effects are terrible, including the chest, neck and back acne, joint pain, and what can feel like absolute insanity in your thought process. For the better of a week, I was unable to walk at times due to the pain in my knees from the medicine. Nearly had to call on friends just to get the pain medicine I had left in the car at one point as I was barely able to even crawl. Needless to say, I’m not a fan of taking whatever the doctor writes on the paper.

Where I’d like to be in 1 year:

In 1 year, I’ll be taking my anti-histamine pill each day and happily enjoying an allergy free and UC free life.
Colitis Medications:
Rewind to when I was dismissed from the hospital. I was given no information about what I could/couldn’t eat, where I could look for more information about the disease, what causes it, what it’s associate with. Nothing. I was given three prescriptions (Asacol, Prednisone, and the pain meds which I forget what they’re called.. maybe Tramadol?). That’s it. Luckily research is nothing new to me.After getting off prednisone ASAP and having my follow-up appointment, I began to research the disease on my own. Important things like water soluble vitamins I quickly began to supplement as they are absorbed in the colon and by my assumptions, mine wasn’t working at max efficiency. After more research, I started to see that a lot of papers show UC as being an issue tied to the immune system.

Histamine levels immediately caught my eye as I have seasonal allergies (one for each season!) that I just sort of “live with.” It has been reported that histamine is high in patients with UC, specifically in the colon. This is like a reaction to something you’re allergic to and causes inflammation in the areas where histamine levels are higher. I decided to try an anti-histamine, Loratadine (Claritin), which did nothing but dry out my throat. I switched to Fexofenadine (Allegra) and immediately noticed my allergy symptoms disappearing (not completely, but considering how much mold is in the air in Austin, I’m not doing bad). Since the medicine was cheap, I got enough to last 2 months. What happened next was awesome.

It so happens that I was in the middle of a flare when I started taking the anti-histamines. I still hadn’t figured out exactly what would cause this and it can be a terrifying feelings. For me, I simply never want to go back to the doctor for this disease. They’re entirely too quick to break out the pen and pad. I started to notice, about a week and a half into taking the anti-histamines, that my poop was becoming more solid. Typically, the loose stool is the first symptom to disappear for me when fighting a flare. That was hopeful for me.

I stayed on the Fexofenadine, curious to see where things would go. After about 3 weeks, my poop was back to completely solid, which by my reasoning meant that some of the inflamed portions of my colon were healing and absorbing water again from my bodily waste. There were still streaks of blood on the poop which wasn’t the best sign, but I felt much more engaged and alive and was only going to the restroom once a day. At this point, I still had made no diet adjustments (it should be noted that I drink very regularly and was also suspicious that alcohol was causing issues with my UC). With over a month left of medicine this was some considerable progress.

About 2 weeks later, I had my first poop with no blood. Nothing. Nothing visible on the toilet paper, in the toilet, on the poop, nothing at all. No changes to my diet (occasional fast food, sandwiches, and home cooked meals. Alcohol in some form every day of the week). Start to finish, from flare to symptom free was about 4-5 weeks on Fexofenadine.

I want to put a caveat here for anyone reading and looking for a miracle cure to their disease: everyone is different. Some people have no fear of doctors, and have symptoms and body chemistry much different than mine. My story is intended to help anyone who sees similarities with themselves and wants to try something safe and potentially very effective.

written by Tom from Texas

submitted in the Colitis Venting Area



Fexofenadine

36 Responses to Tom’s Success Against Colitis with Fexofenadine

  1. Adam
    Adam June 9, 2012 at 8:54 am #

    Hey Tom,

    WOW, that’s great you are having such great success!! Awesome and inspirational. What have your doctor’s had to say about all this? I’m guessing they must be surprised by your success since its rather “un-conventional”. Good luck in the future and take care!
    -Adam

    • Bev June 9, 2012 at 2:02 pm #

      Unconventional…if that isn’t the buzzword of trying to figure this disease out, then I don’t know what is!

      Unconventional treatment is all that seems to work, and we have to figure it out on our own, and individually yet! How novel.

      Bev:)

    • Tom June 19, 2012 at 3:02 pm #

      Hi Adam

      Believe it or not.. I haven’t seen a doctor in over 2 years. The last time I went in was for a follow-up endoscopy to check how well the prednisone had healed me up. I still remember the doctor saying, after having trouble inserting the scope, “I see Mr Tom has a tight anus!” Ugh. Just not ok. In all honesty I should have probably just switched to a new doctor but it’s been experience after experience that just underwhelmed or angered me at the risk of my own health. I figure if I’m going to risk my health, I’ll at least be responsible for the decisions that affect me the most. I certainly wouldn’t recommend it to everyone as everyone’s situation is different and unique and for those who aren’t interested or unable to take these sort of risks it’s absolutely out of the question to take on the disease by yourself.

  2. Shirl June 9, 2012 at 9:37 am #

    Thanks for sharing Tom, I agree with your conclusions on the immune system & doctors general approach to this illness.

    I had not considered Allergy meds, but I will say my daughter who is 20 also suffers from colitis as I did when I was young, and she has yet to deal with the bleeding. She takes Zyrtec every day and Veramyst nasal spray. She had taken Fexofenadine/ Allegra before as well. It does not stop her colitis. So I do suspect everyone is different and this approach won’t work for everyone, but worth trying!

    I was diagnosed at 36 last year after getting quite ill with the bleeding. A flare building over a month set me up for my worst experience with it ever. I had been sick with colitis since my young teens. Doctors just assumed at the time it was IBS & told me to just deal with it. I kept getting sick in college. Now watching my daughter follow the same path- I am better informed to help her sort out misinformation from doctors. So many are not qualified & you’re right- quick to give prescriptions.

    I didn’t have the right diagnosis until a colonoscopy while in the hospital, and from the biopsies we learned I had 2 types of colitis. I started off with Ischemic colitis, and it progressed to Ulcerative. I am fairly sure this is what is happening to my daughter. It runs rampant in my dad’s family- my cousins & an uncle already have lost parts of their colons. My daughter is stubborn with trying to get her to do the colonoscopy. She’ll get to a point though, she’ll need that diagnosis.

    Perhaps the actual underlying cause, or multiple causes, can vary person to person. I do agree on the immune component is involved. I take a supplement for joint pain & immune support. I cannot go with out it or Asacol.

    Regardless congrats of finding a way to control your UC & get your health back! Make sure to post again whether or not the success continues!

    • Tom June 19, 2012 at 2:45 pm #

      Hi Shirl

      The pharmacist told me when I was shopping for allergy medicine that people react to specific antihistamines so it’s possible you simply need to try another one for giggles. I had taken Claritin for a long time and thought it was working because my throat was dried out and my nose was somewhat better. I switched to Allegra quite by accident really, as the pharmacy I visited during lunch was actually out of the Claritin dosage I preferred so I decided to try something new. Got my allergies under control and then I realized the other side effect and was absolutely elated. Still clear to this day, with only the occasional loose stool after I drink a bunch of beer or mixed drinks.

  3. Mark June 9, 2012 at 1:23 pm #

    Tom,

    Thanks for sharing your successful experience with Allegra. I, too, have noticed a correlation between allergies twice a year and flares. I was diagnosed with UC in 2004 and take Asacol daily. Could you share the milligram dosage of Allegra Allergy you take daily? It comes in doses of 180 mg every 24 hrs or 60 mg every 12 hrs. Sounds to me like it is worth a try. I just went into a flare last week.

    • Tom June 29, 2012 at 8:57 am #

      Hey Mark,

      I’m currently doing 180 mg once a day. I haven’t tried the twice a day treatment yet but I’ve been wanting to try it to see how I do. I have enough trouble making sure I always have the bottle with me already though, so doubling that worry doesn’t sound tremendously appealing!

  4. Bev June 9, 2012 at 1:58 pm #

    Holy crap, Tom! Very inspirational! And you simply researched, and tried something yourself.

    Boy, you said a mouthful about doctors. I gave up on them a long time ago. So quick to prescribe, aren’t they? It’s what they are taught, I guess. After researching my guts out on the web, I am med free as well, after trying probiotics, just for the hell of it. Never believed that they would work. Well, for me, they worked! It’s not that way for everyone, I know. What works for one, does not necessarily work for another, like you said…although I do wonder if we sometimes bail too soon, when things don’t work as fast as those awful medical drugs that we are used to. I was once an impatient patient, but not anymore! Hell, I’m not even a patient anymore! Hurrah!!!

    That last niggly symtom of blood…same thing with me…it took a few months before it finally disappeared. But it did…

    Cheers, and thanks for the fantastic post!

  5. Evelyn June 9, 2012 at 6:52 pm #

    Good for you Tom. I agree with your philosophy on doctors. I am 67 years old and was diagnosed with UC in March of this year. Doctor says I have atypical ulcerative colitis – very atypical because of my age (usually much younger people initially contract UC). And also atypical because it doesn’t seem to behave like other people’s. No blood or mucous or pain, my only symptom was dozens of trips to the bathroom every day. After a bazillion stool cultures during a week in the hospital due to dehydration, they finally did a CT scan with contrast and definitely said it is UC. Now I’m weaning off prednisone, taking Asacol and Imuran (to replace the prednisone). I want to get off all meds, but doctor says I’ll be on them for life. I don’t believe it, or don’t want to. I do take probiotics – although the doctor said it’s a waste of money. I’m going to try Allegra, what do I have to lose. I’m tired of going to the doctor every two to three weeks. I also have 3 other auto immune diseases – Hashimoto’s thyroid disase, eczema, and degenerative joint disease. I am thinking of going to an immunologist for the Sage food testing. Does anyone have experience with this?

    So glad to your of your success Tom. Thank you for sharing

    • Bev June 10, 2012 at 8:31 am #

      Evelyn…ain’t that the truth…the doctor says I’ll be on meds for life…I wonder how they’d feel if they were told that. It makes you want to prove otherwise, doesn’t it! You are correct…don’t believe it! You have nothing to lose…try EVERYTHING safe and/or natural, until you maybe find something that works for you. Probiotics worked for me (after a couple of solid months), and I got off all meds after 13 years on them. Of course, my doctor is most displeased with me! Screw him, I say. If something works, and the doctor does not believe you, then just what does that tell us?

      Antihistamines worked for Tom, probiotics worked for me, the SCD diet worked for Adam. This disease is extremely individual, in it’s causes, symptoms, and remedies. I really think that we have to do what is right for ourselves…not for our doctors, or anyone else. Keep trying to find what works for YOU.

      Cheers:)

      • Evelyn June 11, 2012 at 9:18 am #

        Bev, I so agree – different strokes for different folks. Whatever works is wonderful, just a matter of finding out what it is. And I realize the doctors have their own agendas for keeping us on meds, and in their offices. But this is our life and lifestyle, not our pocketbooks, that’s under attack.

      • Lynn April 1, 2014 at 6:24 pm #

        Bev,
        So happy to here that you are in remission. Would you please share which probiotic you used and how often.
        Thanks,
        Lynn

    • Tom June 19, 2012 at 2:39 pm #

      Evelyn – sorry to hear that you were recently diagnosed, and at 67, how strange! I’m lucky to have figured out my trigger so quickly (though I don’t expect my body to remain the same forever, I’m lucky for now) and I wish you the same luck. I really don’t care for the methodology of doctors, at least what I’ve been exposed to, so I really had no choice but to make a move on my own despite the risks and my otherwise good health and age.

  6. uma June 9, 2012 at 8:12 pm #

    Hi everyone,My story, How i put my colitis under remission is in the happy stories or cures. Now it has been two years of total remission no symptoms what so ever.I feel like my pre colitis days and this is after suffering for 21 years. I dont know what actually worked for me. I started the probiotic Garden of life Primal defense,slippery elm and boswellia at the same time.Here i would like to mention that about the same time my triglycerides was high and my family doctor put me on a statin called Tonact TG (atovastatin and fenofibrate tablet).This is what it is called in INDIA.Now i dont know what exactly put me under remission. I have stopped the slippery elm. I want to stop the boswellia too but a bit scared to do that.

    But i think it is either the probiotic or the statin which has made my symptoms disappear.
    I continue my conventional medicine salazopyrin and folic acid too.

    • Bev June 12, 2012 at 6:37 am #

      Wow Uma! I know what you mean about not knowing exactly which thing put you into remission. I’m inclined to think that it was the probiotic for me, as well, because that was the only thing that I changed when it happened.

      I am so happy for you…and for me! I just hope and wish that everyone could find their ‘THING’.

      Cheers:)

  7. Maggie June 10, 2012 at 6:35 am #

    Histamines passes through the lining of the gut (leaky gut syndrome) causing our bodies to detect a foreign object and fighting it with antibodies and that is what causes autoimmune diseases–a body attacking itself. This isn’t the sole cause but likely Tom’s cause so that’s why the antihistimine helped him. I, too, have allergies and take an antihistimine, cetrizine, and unfortunately, it doesn’t help my UC. Tom, I’m glad it works for you.

    • Bev June 10, 2012 at 8:25 am #

      Thanks Maggie…good insight there…

    • Scott June 16, 2012 at 12:33 pm #

      Maggie – I’ve had some success with antihistamines as well, in particular benadryl. You may want to try some others before you call it done as different allergy medications have different inhibitory actions on different processes of immune response, e.g. TH1, TH2, etc.

  8. Suzy OC June 10, 2012 at 7:09 am #

    Just curious Tom, do you smoke cigarettes?

    • Evelyn June 11, 2012 at 9:15 am #

      Glad you mentioned cigarettes, Suzy. I read about the connection between nicotine and the lack of UC patients who smoke. Asked the gastro and he waved me off, saying we wouldn’t want you to subject yourself to a destructive substance. I had asked about the nicotine patch – would never even consider smoking again. He didn’t have an answer. I am curious is anyone has tried the patch, and if so, did you have success?

    • Tom June 19, 2012 at 2:28 pm #

      I do on occasion. I’m a bizarre creature, not really prone to substance addiction so I will sometimes have a few cigarettes in a night, and then go weeks or months without touching one. I’ve never noticed a tie between the two (having a cigarette and a flare). The typical correlation I see is between eating a LOT of fatty foods typically combined with high consumption of alcohol. This is still a loose correlation for me as I haven’t focused heavily on the cause-effect relationship.

  9. Peter Rye June 11, 2012 at 11:20 am #

    Tom

    I recently had a terrible skin eruption during a spell of hot weather and I saw my Gastro Doctor who thought I had chicken Pox although I did have it when I was 2 years old. I have been on the dreaded Azathioprine ( 4 x 50 mgs ) for the last 2 years which does have the effect of lowering your resistance to sunlight as well as dampening down your immune system. The Gastro Doctor immediately took me off the Azathioprine ( hip hip hurray ! ) and put me on an Anti-Viral ACICLOVIR ( 800mgs x5 per day ) + an Anti-Histamine LORATADINE ( 10 mg per Day ). I have been on these for 7 days and my skin problem has got a lot better, but more important is my UC is still stable inspite of being off the AZATHIOPRINE, which I really want to stay off for good !

    • Bev June 12, 2012 at 6:38 am #

      That’s great Peter!

    • Tom June 19, 2012 at 2:35 pm #

      Peter – skin eruption sounds terrifying! I think the skin is one of the first things to go for me when I am having immune system issues. Soon to follow would be a light flare. I get little zit looking deals on my face and chest and the skin begins to flake as well. By and large this went away when I started up on the Allegra, but sometimes still I will have a bad day of allergies (stuffy nose and the like) and likewise will get a zit or dry skin. It’s a strange correlation but I definitely notice the two go hand in hand.

      • GT June 20, 2012 at 2:35 am #

        Tom,
        Thanks for taking the time to share your story and congratulations on your success. I will note the use of Allegra if I have a flare-up. Right now I am in remission — and it seems what pulled me out of the last flare-up was “Essential Enzymes” [digestive enzymes] (Source Naturals brand). I take it religiously now — and as with everyone, I hope I have found the answer or a cure. I am also using a probiotic that is different from others I have seen: saccharomyces boulardii. I have found two brands. They are both a little expensive. One is Florastor and the other is a Jarrow’s brand. Both are over the counter. I also take the traditional probiotics. But I believe it is the “digestive enzymes” that are making a difference. Take care and best wishes. GT

        • Tom June 27, 2012 at 4:11 pm #

          Hi GT,

          I dabbled with probiotics in the past year but didn’t notice myself feeling any different or particularly healthier. I may try again with a different variation but I’m glad to see you’ve found some good results.

  10. Gayle June 20, 2012 at 6:11 am #

    After reading all the above I may try antihistamines. I am currently on Immuran and ProBiotics and was doing great for about a year until a recent flare. Now my doctor is talking about me trying Humira. Has anyone tried this yet… with all the “possible” side effects mentioned on TV commercials, I’m kind of leary.

  11. Jane June 20, 2012 at 7:29 am #

    You guys–DIET__DIET__DIET…that is what is going to get you off all those crazy pills!!!I’ve had UC for a couple years–and at 48 yrs old–I went through it all too–just not all the crazy meds you guys are still on.You MUST get off sugar and dairy..seriously!!!You will see a MARKED improvement–plus carbs–READ THE BOOK–BREAKING THE VICIOUS CYCLE–that book will save your life I’m telling you!!!!I kept a food journal–and religiously followed it to see where my problems lie–stress is a huge factor I know–and being anxious right before my kids perform for something really makes me want to run to the bathroom–but I have noticed I do it to myself–get myself worked up–I started keeping bags in the car–if I am at an event and fear of no bathroom–I already know I will poop in a bag in my car (tinted windows and no one can see in) if I have to–takes the pressure off of worrying if there is a bathroom there or not–then I really calm down and won’t have to go–IT WORKS!!!!!! Once you have to poop in a bag in your car, you will get to be a pro and it will be a lifesaver I promise!!!!!!!!!!! If I am going to an outside event–NY City–I will not eat much 2 days before–the morning of, I pack food and only eat a small snack till later in the day when I will be soon coming home–just in case–it works so well I cannot tell you–I ALWAYS have a bag with me so I can duck behind a building–or even between buildings in an ally–if you are with a friend, have them cover for you.PLAN AHEAD!!! I live a good life like this–AND NO MEDS!!!Re-evaluate your DIET!!!!!!!!!!!!No fried or greasy foods or sauces!!Use olive oil in almost everything and fresh veggies–you will thank me later.Oh and the biggest thing–I DO YOGA!!!!!!!!!!!!!!!!!!I am 130 lbs and am in good shape–

    • Tom June 27, 2012 at 4:10 pm #

      Hi Jane,

      Unfortunately, dietary changes did not help me at all. Before I was diagnosed, diet was the first thing I reevaluated. I have always been fairly thin/fit as I’m not a junk food eater, nor a fast food binge eater. After diagnosis, I again looked at my diet, which was already low salt (I don’t like salt much at all) and dairy free. I know I’m allergic, mildly, to lactose so that was already off the list. It got to the point where if I had to keep diet in the mix as a possible cause of my problems, I would have been eating nothing! I didn’t consider that a solution so I kept looking…

      For people who DO eat a lot of fatty foods, there are studies that relate this to increased symptoms of UC. But then again, eating excessively fatty food puts a strain on a normal person’s innards as well so I don’t see that it’s directly tied to UC so much as it is being a healthy individual.

      As for now, I’ve actually become a more voracious eater as Austin has so much great food to offer. I don’t consider Fexofenadine to be a particularly scary pill to take (after all, it’s a single pill). The strangest side effect I’ve experienced has been 2 nightmares in the past year. It’s an actual listed side effect that I even know was a side effect until I had one and looked up the information afterwards. Who would have thought? Anyhow, it’s a much less frightening substance to ingest than something like Prednisone, Cymbalta, welbutrin, all of which I’ve been prescribed before. Nowadays, it’s like fexofenadine is part of my diet. It’s also the only pill I take daily so I have much to be thankful for.

  12. Jennifer June 20, 2012 at 7:13 pm #

    I am so grateful for this website and this post! My 16 year old son has been struggling since he was diagnosed last November.He has been on Prednisone continuously as well as Azothioprine and Lialda. He has always been an “allergy kid”….. Many strep and ear infections when he was little, allergy shots for 4 years now. He is red headed and his skin is very reactive.He has been on an antihistamine for years as well ,but stopped it for quite a few months now as his allergy symptoms were gone due to all the prednisone.I read your post and immediately started him back on Zyrtec and the first night he slept all night!!!He had been getting up several times every night, and I felt like I heard the bathroom door close everything. After 10 days now he has only gotten up twice at night, and the number of trips during the day is much less!!His stool is becoming more normal as well. Tonight he was able to go to soccer practice without any issues!! I plan on calling his GI tomorrow to make a follow up appt as I am sure we are really “on to something” finally! Thanks so much for everything!

    • Tom June 27, 2012 at 4:02 pm #

      Hey Jennifer,

      That is some awesome news! I have had allergies all my life and noticed when I was on Prednisone that I definitely was the clearest I had ever been. No sniffles, morning congestion, boogers, snot all that garbage. The fexofenadine doesn’t completely clear those symptoms up but I get pretty good relief, not to mention the anti-UC benefits. Keep updating here, I’m dying to know if this helps other people as well. I feel like it’s a neat little trick, but if it applies to other people as well there may be some people out there who can get some much needed relief and peace of mind as well.

  13. BobB June 21, 2012 at 3:18 am #

    Hi Tom,
    How much Allegra did you take ? I am pretty much allergic to everything one can be allergic to – dust, smoke, prawns, sea food, sulphur drugs etc .. i will try the anti-allergic and see if it helps

    • Tom June 27, 2012 at 3:58 pm #

      Hey Bob,

      I take 180mg of Wal-Fex (Walgreen’s Allegra knockoff) every day.

  14. Jennifer June 26, 2012 at 7:42 pm #

    Hi Bob,
    My son is taking Allegra 180 everyday……still helping! Hope you are able to see some improvement as well!

  15. Terijo March 14, 2014 at 10:50 am #

    Diet is every thing! I was diagnosed 5 years ago with UC although I suffered with it for some 15 years. I had been taking medication everyday and still suffered several flareups every 2-3 months resulting in further medications sometimes for weeks at a time… until 10 months ago. When returning home from yet another horrible hospital stay I was determined to find REAL ANSWERS and without Medications that would inevitably harm my liver and put me in further jeopardy.
    I am happy to say I have been symptom free, medicine free and healthy for 10 months. Two huge impacts on the change in my health was finding the SCD web site (scd.com) Please read the book “Breaking the Vicious Cycle” by Elaine Gottschall, and this amazing story by Danielle Walker (“http://againstallgrain.com/”) I was stunned by the similarities in our stories. Another excellent site for children with the disease is Mrs. Eds ( http://mrsedsresearchandrecipes.blogspot.com). All these sites have wonderful recipes as well as helpful information.

  16. Kevin April 10, 2016 at 6:48 pm #

    All, I am 56 and suffered with allergies since a kid. Diagnosed with colitis back in my late 20’s. Frequent sinus infections from allergies. Within 2 weeks of taking any antibiotic I always end up with a flare up. Predisone resolves flare-up. Thru my back out a couple of times over the years, used ant-inflammatory drug (Motrin/Advil). Same situation as antibotic, within 2 weeks was having flare-ups. Have had multiple colonoscopies. Used Allerga and Claritan off and on forever and never noticed a difference. Latest Gastro doctor told me to take a multi-vitamin along with calcium pill once a day. That did the trick for me. Still get flare-ups after taking antibotics. I only use Tylenol for pain. Hope this helps someone.

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