Doctors and Lupus and Transfusions, Oh My.

I last wrote here in December.  I had tried to make a Rheumatologist appointment in October...the first time they could see me was February 24th, because doctor's offices make it so difficult to be seen by a specialist.  On March 14th, I was diagnosed with Drug-Induced Lupus.  The Humira I had been injecting was acting like poison in my body.  I had symptoms of this for more than six months.  In fact, when I first saw my primary care doctor in September, we had thought it could be possibly lupus.  Dermatologist and Gastroenterologist insisted it was not from the Humira, so I kept injecting myself with poison.  The pain got worse and worse.  I couldn't open things with my hands, I couldn't walk up the two steps onto the bus without assistance from the bus driver.  I lived in constant pain.  I can't take over the counter pain-killers, because they destroy my stomach and cause significant bleeding in my colon.

My Gastroenterologist told me he'd never heard of Drug-Induced Lupus from Humira.  He insisted on more tests to see if I had developed antibodies to the Humira and to check the Humira levels in my system.

The Rheumatologist gave me a steroid shot to treat the lupus.  My body reacted poorly.  I got really sick with a horrible pain in my back.  I couldn't stand up straight.  The pain took my breath away.  I went to Immediate Care, where they diagnosed me with a bad kidney infection.  Two days later, I ended up in the emergency room after literally collapsing in pain in the lobby of my apartment.  Doctors there continued to diagnose me with a kidney infection, gave me some fluids and sent me home with stronger antibiotics.  Spent the next week on the couch with a heating pad, drinking my body weight in fluids and watching Veronica Mars.  My Primary Care Doctor got the reports from Immediate Care and the ER, realized that none of the cultures developed anything so I did NOT have an infection.  She rushed me to imaging to make sure I didn't have a pulmonary embolism (blood clot in the lungs) and ran some more tests.  For a month, I could barely walk, stand up straight, or breathe.  My theory is that it was all from the steroid shot and the lupus.  My Rheumatologist would not treat my pain, or even take my pain seriously as I sobbed in their office.  They told me to follow up with the Gastro and to come back in October.

I was prescribed a week of oral steroids and physical therapy by my Primary Care Doc.  The steroids allowed me to feel perfect during my trip to NYC.  I was able to walk more than 6 miles a day, which sounds like nothing for someone as active as I typically am, but I honestly at the time, I could hardly walk the half mile to my office.  After the oral steroids ran out, the pain and stiffness came back.  Over the last two months of PT, I have relearned to use, stretch and strengthen my muscles.  I go twice a week to PT, and do the exercises/stretches three times a day.  It's the most diligent I have ever been with a workout regimen.  I'm so thankful that after losing a full month of my life due to pain in April, I can finally move properly again for the most part.

In May, the Gastroenterologist emailed me with "good news" that my Humira levels were low so I could go back on Humira but needed to switch from once a month to twice a month.  I immediately started looking for a new Gastroenterologist.  Again, it's so hard to get an appointment as a new patient, which is a disgusting part of our medical system.  I refused to believe that going back on Humira was an option.  I needed a second opinion.

From March until July, my digestive system has been completely untreated.  The only good news to me was that as the Humira got out of my system, the ulcerative colitis symptoms began to reappear.  It made me feel good to feel bad, since at least the Humira had been treating the ulcerative colitis, so even if I had all these problems, at least I could hold on to that fact.  As the rest of my body has healed, my colon has begun to flare...reminding me that yes, you do have this disease in your gut, you do not have a normal digestive system.

The lupus symptoms have slowly improved as the Humira has gotten out of my system.  It takes at least 3 to 5 months for it to really leave your body completely, and I was on it for almost three years.  My feet and knees no longer ache in pain when I walk.  My hair has begun to grow back..it's weird to get excited about things like maybe shaving your legs.  I honestly had no leg hair at all....baby smooth legs for months.  But I had bald spots on my scalp, and every new hair is a chance that I won't have to start wearing wigs.  My head itches as I can feel the new hairs poking through my scalp.  It's the best itchy feeling I've ever felt in my life.   I still have stiffness in my fingers and wrists, but hopefully it will continue to improve.

I saw the new Gastro last week.  She seems nice.  She will not put me back on Humira, and believes I did indeed have Drug-Induced Lupus.  She wants me to start on a new drug, Entyvio.  She gave me oral steroids to hold me over in the meantime, which I'm already so thankful for.  Anyone who has lived with symptoms knows what a relief it can be to treat them.  I'm a little scared about the Entyvio.  It's the kind of medicine that you have to go to a transfusion center and get injected via an IV.  It will start with one transfusion, then two weeks later, than four weeks later, than six weeks, then hopefully every eight weeks.  Cross your fingers my insurance approval coverage of this and that it doesn't cost too much.  I've already spent more than $3,500 out of pocket on medical expenses in 2017 alone.

I'm scared to start on another biologic, but also excited to maybe feel normal again.  I'm scared of all the millions of side effects that come from these medicines.  I'm scared that they'll have trouble getting veins to actually do the transfusion and I'll have to get a port.  I'm scared that the medicine won't work.  I'm scared that I'll get another scary side effect.  But I'm hopeful as well. Hopeful that maybe I'll get another few years of relief.  The Humira, for all the issues I've had this past year, it did give me two full years of feeling great.  Hopeful that maybe my colon will someday stop being an issue because maybe we'll find a cure.  Hopeful that maybe someday we'll have better health care in this country, that years of fighting doctors and insurance and drug companies will some day be a thing of the past.

As most of you know, I hate writing about this kind of stuff.  I am an extremely positive person, I hate admitting that I have anything wrong with me.  I refuse to let it hold me back.  This past year has challenged me in ways I'm still trying to figure out.  My health struggles have just been a part of the emotional burden I've been holding on to this year.  But it's all welling up inside of me, making me stronger, and making me better suited to stand up for all the things I believe in, to keep fighting the good fight.   I'm thankful to you, whoever you may be, for reading this, for listening to me, for putting up with me, and for supporting me in some way.  And to my close friends who listen to me complain all the time, you know I'd be lost without you!!

  

When IBD is more than just IBD...

I guess I only write in here when it's an awareness time of year.  I still don't really like to talk about my health, but I know that I should, and alas this week is Crohns and Colitis Awareness Week.  Be IBDvisible!  

I was diagnosed 14 years ago; I have Ulcerative Colitis, a form of inflammatory bowel disease (IBD), but I've likely had the disease at least 17 years.  IBD is a disease of the digestive tract.  My type of Ulcerative Colitis is called pancolitis, meaning it affects most of my large intestine, from the very end all the way to the cecum, where your colon attaches to my small intestine).  My disease mostly lives in the end of my colon and rectum, but I've also had some erosion problems in my small intestine.  This means I could have Crohn's Disease (another form of IBD), but, for now, my diagnosis is UC.  IBD is an autoimmune disease, resulting from an abnormal response by my body's immune system.  Normally, the immune system works to protect your body from infection, in my body, the immune system mistakes the intestines for foreign or invading substances.  This sends white blood cells to the lining of my intestines, producing chronic inflammation and ulceration.  

Two and a half years ago, I started on Humira, a dreaded biologic drug.  Humira works by binding to a protein in the body called tumor necrosis factor (TNF), which is produced by the body's immune system.  In people with IBD, there's an overproduction of TNF associated with inflammation in the digestive tract.  Humira is a TNF blocker, which binds to the TNF and blocks its action in the body, helping to reduce inflammation and symptoms of IBD.  Since Humira lowers the body's immune response, people who take medicines like Humira have a much higher risk for serious infections, such as tuberculosis, and other viruses, fungi, and bacterial infections.  Thanks to Humira, I also have a higher risk for lymphoma and other cancers.  One of my cousins died from complications related to the disease that also plagues my bowels, so I took these risks very seriously.  

The risks were weighed against the benefits, and with a lot of support from my wonderful GI doctor, I started on Humira.  I give myself injections every two weeks.  It was working, and for two years, I was feeling alright.  My hair stopped falling out.  I stopped having to run to the bathroom.  I stopped having to use enemas and take 22 pills a day.  In April, my colonoscopy was completely clear and healthy.  My white blood cell counts in August were the lowest they had been in many years, and less than half of what they were before I started Humira.  

Then things started to change.

Over the summer, I had what I thought were infected mosquito bites - one in June, two in August.  They gave me antibiotics.  I got a really stiff neck in July that made it so I couldn't turn my head for few days.  More of my muscles started to cramp up.  I'd wake up in the night with cramps in my hip joints that would leave me howling in pain and leave me sore for two days afterwards.  I thought I was dehydrated so I started drinking more water and taking more vitamins.  

My arm after 10 days of antibiotics - the red line was
drawn before my first doctor's appointment,
so we could measure how  big it got.
I wish I had better pictures of how big it got
(it was past the red line before the antibiotics)

In September, I woke up one day with six spots of what looked like hives.  They quickly turned into large spots of cellulitis/dermatitis - one on each forearm, one on my collarbone, two on my left leg and one on my right leg.  I went to my primary care practice, where I saw one of the doctor's, Dr. S, instead of my regular primary care doctor, Dr. P so I could get in sooner.  Dr. S called in Dr. P into the exam room to see these welts, because he wanted a second opinion on the crazy thing going on with my body.  

At first, they thought I was having an allergic reaction to Humira, and told me to stop taking the Humira until we can figure out what's going on.  They sent me for rush bloodwork, put me on medicine, and asked that I come back in two days to get checked. Two days later, I was better, but still inflamed, and in pain.  I almost had to miss the wedding of one of my best friends because my doctors did not want me to travel downstate for the weekend.  I had to promise that I'd go to the ER if things got worse, and text Dr. P updates throughout the weekend to let her know how I was doing (I seriously have the best doctor ever).  I got back from the trip and was referred to a dermatologist.  He thought they were infections resulting from the immune suppression from taking Humira.  

Right eye with uveitis.

I saw my eye doctor on a Thursday for an annual checkup.  Everything was good, I hadn't had a bout of uveitis since I started the Humira.  Uveitis is another autoimmune syndrome dealing with inflammation in the iris (the brown part) of the eye.  Humira is also used to treat recurrent uveitis, which I had suffered from twice a year for five years before I started the Humira.   Since we thought it was an allergic reaction, I skipped my 2nd Humira shot on a Friday and by Monday my eyeball was a mess.  My vision in my right eye dropped to 20/600 with my glasses on (20/20 is normal clear vision, 20/200 is legally blind).  So I got some steroids.  Two months later, and I will be finishing up the steroids for my eyes this week and my vision is back to normal (with my glasses at least...I'll still never see without them, and I'm ineligible to ever get corrective vision surgery due to my eye problems).  I'm so thankful for my eyeballs resiliency.  I have been told that for many people with vision loss from uveitis, their vision doesn't bounce back like mine does.  Uveitis is one of the leading causes of blindness.  For some reason, it's not my destiny to go blind just yet.  

After a few weeks of antibiotics, I had a new spot on my leg.  The dermatologist prescribed me steroids and told me I was free to start the Humira once I finished the antibiotics.  I saw Dr. P again, told her how my joint pain and muscle stiffness was getting worse.  She saw how swollen and puffy my hands were, sent me for bloodwork and referred me to a rheumatologist.  The RH panel came back negative but it doesn't always have a positive response during inflammatory arthritis.  The rheumatologist that was recommended can't see me until February 24th!!  I called other doctors trying to see if I could get in earlier, but alas, some of them are not booking new patients until MAY!!!  I was calling in October...so I'll have to endure four months of pain before the new doctor can begin to try to see if they can figure out what's wrong.  

Due to my Ulcerative colitis, I can't take over the counter painkillers.  They actually cause inflammation and diarrhea in people with IBD.  I've been treating my swollen joints and muscles with fish oil tablets, Biofreeze and lots of Epsom salt baths.  The pain moves around.  My hands are so bad at times, I have to ask a neighbor to open my pill bottles. This week, it's in my right knee the worst, but it changes from day to day.  Some days, I can hardly walk the pain is so severe.  Four months of this until I can even see a doctor who can maybe help treat me?  The system is broken.  

I finished on the antibiotics, and I started the Humira again.  Two weeks later, more spots, this time 2 on my leg.  I went to the dermatologist and had them biopsied.  Nothing conclusive came from that...it might be drug induced, but the fact that I've been on the Humira for more than two years leads them to think it's probably not. So, we still don't know what's going on.  I spent $340 on copays just on doctors appointments in the month of November.  This is on top of my normal monthly prescription co-pays.  And I'm not sure how much I spent on bloodwork for the 4 times I had blood drawn that month, since I haven't gotten those bills yet.  In a world where we're not sure what will happen with health care, I am honestly terrified.

That's where I am currently at medically.  This is what Ulcerative Colitis looks like to me.  This is what 1.6 million Americans suffer with.  Sure, some people with UC and Crohns Disease might play in the NFL or compete in the Olympics.  But most people look more like me - with lots of doctors appointments, lots of money spent, and lots of pain, lots of waiting, and lots of unknowns.  I'm currently a part of several research studies to help scientists learn more about my disease.  And some day, they will hopefully figure out what causes it, how to better treat it, and noone else will have to suffer from it.

So, yep, this is Crohns and Colitis Awareness Week.  What can you do to help?  One way you can help to raise awareness is to contact your congressperson and ask them to join the Congressional IBD Caucus or to support initiatives to provide better funding for IBD research.  More information about contacting your representatives can be found here.   Ask them to support things like "The Patients' Access to Treatments Act", which is important, not just for those of us with IBD, but many other diseases where treatments are costly and getting more so every day.  And most importantly, keep fighting vigilantly for health care, because drug companies and insurance companies make a lot of money off the backs of hard working people. Everyone should have access to health services without the fear of a financial burden.

IBD Awareness Week - My Cousin and Me

My cousin was 11 when I was born.  She was 43 this week when she passed away.  In our big Italian family, she and her brother were the youngest of the grandchildren; my brother and I were the oldest of the great-grandchildren.  I loved everything about going to their house - but most of all I loved playing with Lisa.  I'm not sure how she felt about playing with her "baby" cousin, but she'd always play barbies with me.  She had the coolest clothes and the coolest bike. I ended up inheriting some of her clothes - one hoodie in particular that was my favorite for years.  And those who knew me in middle school probably remember my awesome bike that I rode to school, that was from her as well.

I didn't know that genetics would also decide I would inherit her disease.  She technically had Crohn's Disease and I have Ulcerative Colitis (for now...we're still not 100% sure and I have issues in my small intestine, but for now, my disease is technically in my colon).  For all intents and purposes, they're the same disease.  Whenever I would hear how sick she was, I could feel the pit in my stomach grow...what if that happened to me?  I'm terrified. Why couldn't genetics have given me her curly red hair?  

It's been a very hard year, full of hard decisions about my health.  It's hard to explain to people what I went through, I think there was a part of me that didn't want to admit how sick I was, even to myself.  But I think somewhere in the back of my mind, I always told myself "if Lisa can survive what she is going through, I shouldn't even complain about my condition".  Every time I'd get down on myself, I'd thank my lucky stars that at least I got to eat real food and didn't have to hook myself up to a bag for nourishment. Even when I was taking eight different medicines and enduring things that you can't discuss at the dinner table, I never felt I had it that bad, because I knew that it could be worse.  Way worse. 

I wish I had kept in better contact with her.  She grew up, went to college, moved to Vegas and didn't come home very often.  I got busy with my own life.  We should have bonded more over our disease.   I shouldn't have left it to word of mouth through my aunt telling my mom telling me.  I should have picked up the phone and bluntly said, "hey Lisa, let's talk about our bowels".  I kick myself for not doing more. But my family doesn't discuss that kind of stuff, at least not in the kind of detail we should. I kick myself for not educating myself on what ultimately could be lurking inside me as well.  The night I learned she died, I fell down the rabbit hole of internet research, learning every possible thing that can go wrong for IBD patients....trust me, you do not want to fall down that hole!  But I educated myself on the increased risks that result from IBD (and are amplified by many of the medicines we are forced to take).  I have learned a great deal in just a few days, on what the risks are and what I can do to help lower my risks.

I have decided that I'm it's time to get 100% better.  I know that I am not as healthy as I should be - part of that has been side effects from my medicines, some has been from physically being ill, but honestly, some of it is from simply being lazy.  My GI doctor has me starting with a nutritionist.  His exact words were "now that I'm not pumping you full of poisons, let's get everything else in order". Back in June, I really didn't know if I would ever get any better, and my doctor took my hand and told me we'd get through this.  I'm so thankful. He listened to me and let me remain off of the "scary" drugs until we had tried every other treatment. He knows what is going on in my life so that we can know how everything, including stress and diet is affecting my condition (even though the answer so far is "no effect").  For 12 years, my doctor has been the best advocate and ally that I could ask for.  And without him, I don't even know where I'd be. So I knew that when he said it was time for the scary medicines, it was really time.  (And Humira seems to be working for the most part).  I need to fight harder though.  I need to do everything I can to fight this stupid, stupid disease and fight for a cure.  In Lisa's memory.

So, in the spirit of IBD Awareness Week:  I will say this: I hate IBD.  Some day, you'll read all about it in my memoirs.  But until then, if you're at risk for stomach issues or colorectal cancers, please get screened. I'm excited for all the new advances that are happening in IBD research.  One of the winners of the 43North competition here in Buffalo actually is involved in UC research.  I can't wait to see what they bring to the table.  I believe that someday, we'll have a cure.

My IBD Story on World IBD Day

I posted this on Monday May 19th on a different site, then decided to move the blog over here.

Today is World IBD (Inflammatory Bowel Disease) Day! Crohn’s disease and ulcerative colitis are diseases that are often misunderstood as “a stomach ache” or “IBS”. People think they are caused and can be cured by things like diet and stress. They are not and there is no cure.  They are autoimmune diseases just like Lupus, Rheumatoid Arthritis, and so on. They are not syndromes like IBS, nor something fixed through diet like celiac disease. These diseases actually damage the digestive system causing open wounds (ulcers), fistulas (tunnels from the GI tract to another area of the body), strictures (narrowing from scar tissue), perforation (holes), blockages and more. They are managed with strong medications like steroids or chemotherapy drugs and then with surgeries to remove diseased portions of the intestine.  Approximately 1.4 million Americans suffer from IBD and approximately 70,000 new cases are diagnosed each year.  (I borrowed a lot of the information in this paragraph from Sara, an IBD blogger from Michigan).

I don’t talk about this a lot, but I wanted to get it out. I’ve written it a few times and then deleted it.  I don’t know why I’m so scared to share my IBD story.  It makes me nervous, but this is my life.  I worry that people will see me weak, when in reality it is my disease that makes me strong.  I’m stronger than it; I have been able to fight back against it and I will not let it win.  I want to learn to be better at sharing my disease, to advocate for myself and for others who are suffering.

I grew up always having stomach problems.  I always knew where the bathroom was at every store, restaurant or bank.  It’s turned into many family anecdotes.  Ask my dad to tell you about the time on the Thruway, it’s one of his favorites.  When I was 15, my pediatrician diagnosed me as lactose intolerant.  I gave up milk, cheese and ice cream.  I was still sick a lot, but hey, milk is in almost everything, so I blamed it on myself and not being careful.  I grew 5 inches during this time and ended up with osteopenia, the beginning stages of osteoporosis, due to my lack of calcium.  When I was 19, I started seeing my current general practitioner, who asked me about my lactose intolerance, and suggested I get tested.  Turned out, my body can digest lactose, thanks to my northern european heritage!  I went through a series of tests – I’ll spare you the details, but it was disgusting, humiliating and uncomfortable – and was diagnosed with ulcerative colitis in early 2003.

I started on a few different medicines.  We found something that worked, and everything was great.  Thanks to coupons from the pharmaceutical companies, I was able to stay on the meds cheaply and they seemed to be working.

In spring of 2009, I got sick again.  My stomach started up with the problems again.   Another round of tests with my gastroenterologist; another trial of a bunch of different medicines.  At one point, my doctor mentioned that I was at a point where many of his patients would be admitted to the hospital.  I’ve always been a fighter; to me, the hospital was giving up.  I could handle the pain as long as I kept going and didn’t stop to think about it.   At this time, my eyes also started acting up.  I started to have intense pressure behind my eye, feeling kind of like a sinus infection.  On Easter morning of 2009, I woke up and could not see out of my right eye.  My sister drove me to immediate care.  The next day, my eye doctor told me that I have uveitis.  It’s a disease that often accompanies IBD, and is a cause of blindness.  I began to see an ophthalmologist every week to make sure that the inflammation was going down and that the scar tissue wasn’t going to permanently affect my vision.  Later that summer, my left eye started to flare as well.

The costs of all of this have really caused me to struggle.  My medical bills keep piling up.  Health insurance is a whole other story for another time, but between doctor’s visits, blood work, medical testing, and prescriptions, they are awful.  Around this time, I started going back to church regularly.  I was at the end of my rope, and at the end of the day, all I knew how to do was pray.

In the last six years, I have had flare ups of my uveitis every spring.  Every time my eyes flare, the vision in that eye goes past the point of legally blind.  Every time my eyes flare up, I’m terrified that this will be the time that my vision doesn’t come back.  It’s painful and frightening.

Summer of 2012, the ophthalmologist spoke with my gastroenterologist, suggesting that I go on an immunosuppressant.  I went on a medicine that is used to treat leukemia.  The drug is so strong, you have to go in for weekly blood tests to make sure it isn’t messing up your body.  Since it suppresses your immune system, I had to be careful to stay away from sick people.  Which is difficult when you ride the bus and go to events where you shake hands with people.  I ended up getting really sick while I was on it.  I had rolling fevers, intense pain in my abdomen and I couldn’t keep food down.  My liver and pancreas were acting up. Thankfully, I got off of that medicine after a few months.  I stopped going to the Ross Eye Institute, b/c I couldn’t wait that long for doctors visits, since I wasn’t getting paid for the time I was missing at work.  I found another eye doctor last fall, and thankfully, he seems to be great so far.

This past October, I started to have another UC flare, which has lasted until now.  I was sicker this winter than I have ever been in my life.  There were days I could not get up off the couch.  I missed work, missed events and missed hanging out with my friends.  It’s been so hard to explain to people you can’t go out because you can’t be more than 5 feet away from a toilet at times.  I’m sorry for all the times I don’t come through.  It’s not intentional.

In January, I had another colonoscopy.  This time, my doctor found erosion in my small intestine.  Suddenly, I don’t have ulcerative colitis anymore.  Now I have Crohn’s Disease.  I know that this isn’t true, but I’ve always thought of Crohn’s as a million times worse.  My aunt and cousin have Crohn’s disease.  My cousin has to hook herself up to an IV bag every night when she gets home from work and be attached to it for 12 hours, and that is how she gets her nutrients b/c she can no longer eat any food, she doesn’t have enough functioning intestines left.  Now, maybe I’m lucky that I’ve been able to keep it under better control.  But it’s getting worse if it’s moved into my small intestine.  I don’t want to lose my colon.  I don’t want to lose my ability to eat regular food.  I heard Crohn’ disease and even in my groggy post-colonoscopy state, I was immediately filled with dread.

It’s been a long winter.  My hair started to fall out at the end of March.  I started taking a ton of supplements to try to replace the nutrients my body is refusing to absorb.  I take 15 different medicine pills a day, approximately 10 different vitamins and a suppository.  I saw my doctor on Friday and cried in his office, begging for more medicine, for something to make me not have to wake up 2 hours before I have to leave anywhere to make sure the medicine has time to work before I leave.  I’m thankful, because I really do have a great doctor.  He is willing to try things and work with me.  I actually have been blessed with a really great primary care doctor too, and my doctors all talk to each other regularly so that they can treat my whole body and not just the symptoms.  So, I have one more test next week – the kind where you drink a liquid and they take x-rays of my small bowel to make sure there are no perforations or blockages.  And then I’m likely going to be put on a biologic medicine.  I’m terrified of the side effects (which include some pretty bad infections and increased tendency to get cancer). I’m terrified I’ll get the symptoms I had last time my immune system was suppressed.  But I’m also terrified of living the way I have been.

And I know that I don’t have it too bad.  There are people out there who have it way worse.  I am lucky that I still have my colon.  I’m lucky that despite the fissures, the problems, and the running to the restroom, I’m still able to use a toilet and not an ostomy bag.  I’m lucky that I have a job that allows me flexibility to go to doctors appointments and come in a little late on days where I can’t get off the couch due to pain.  I follow a lot of IBD bloggers and try to go to a support group locally when I can.  I know people who have been in and out of hospitals.  I know people who have passed away from complications due to surgeries.  I’m so lucky.  But I still wanted to share my story, because I am tired of friends who make me feel bad when I can’t meet them out.  I’m tired of people looking at me funny when I say I can or can’t eat something.  I’m tired of getting looked at like I have two heads when I tell people that I don’t drink alcohol (except on certain rare occasions when I plan for it well in advance and after).  I’m tired of people suggesting that I try some weird diet.  I know better than you what I can or can’t eat. I can eat whatever I want, as long as I am feeling alright. And I know on the days I feel really bad the only foods I can tolerate are pedialyte, baby food bananas and unsweetened applesauce. Unless you’re the one cooking for me, it’s better not to bring it up, because drawing attention to it just makes me feel bad.  I’m tired of people telling me about some random cure that helped a friend of theirs.  Because truthfully, unless you’re a doctor, actually, unless you’re MY doctor, I don’t need your medical advice.

So take care of your colon.  Be sure to get screened when it’s appropriate.  And learn more about these diseases and recognize that people who have them aren’t just suffering from a stomach ache.  Don’t tell them that one time you had food poisoning, so you know how they feel, because you don’t.  Don’t assume that you know more than someone’s doctors.  Don’t assume that just because someone doesn’t look sick that they’re not putting a ton of effort into just being out and about.

On a side note, since I wouldn’t be me if I didn’t mention it -Dwight D. Eisenhower had Crohn’s Disease too.  And JFK had a spastic colon.