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.