Time to Think

    It's been a little while since my last post...mainly, I think, because there has been so much swimming through my head that's it's been difficult to decide what to write.
    I had a check up with my GI about a week ago and things could have been better, but then again, things could be a lot better with my health. I've been dealing with a "flare" since late February and it's really begun to drain me. We've tried a couple different meds (Uceris, Asacol HD) and even had a blood test done to determine if Remicade is still working and to make sure my body is not developing antibodies to the medication (based on the test - it should be working and my body is not making antibodies). Finally I had to start prednisone again in March. Usually once I get bad enough to go back on steroids I can count on things getting better within about a week or so and starting to taper off them fairly quickly. Not so this time...
    It's been over a month and I'm just now seeing a difference in my stool and only have had about 4 consecutive days with no blood loss. It seems like my "flares" are getting worse, more frequent, and harder to get back under control. Because of this my GI ordered another colonoscopy to take place next week so he can physically see how my disease has progressed in the past 2 years since my last colonoscopy.
    We also had a little surgery discussion. He told me what we would do - if we did it. A total colectomy since I have Pancolitis. He would also like to have my spleen removed at the same time to try to help my ITP. I would then, at a later date, plan to have a J-Pouch created. I've done EXTENSIVE research on these surgeries including delving into the lives of those that have been through it and are generous enough to share their personal stories with other through various online forums. While the thought of permanently removing a vital organ is not something I want to take "lightly"...I also have to think about my quality of life going forward.
   The last 2 years since being diagnosed have been quite interesting. I've spent a lot of time adjusting and really just trying to figure myself and my body out. Can't say that I've gotten there completely yet and the addition of high doses of steroids dose not help the matter. Anyone that has been on high doses (40mg per day or more) of Prednisone for a substantial amount of time can tell you that it's all most people can do not to let it ruin their life. I told my Mom the other day that this drug, in a nutshell, does everything possible to make you repulsive to other people. When I'm on it I get bloated, my face gets red and fat, I sweat constantly therefore I stink constantly, I have crazy mood swings, I get acne, I get body hair, I get terrible insomnia therefore during the day I am groggy and exhausted, I get jittery....and the list goes on. The fun part is even after Asacol, 6mp (scary toxic drug that can cause cancer) and Remicade (scary toxic drug that can cause cancer #2), I still have to be on steroids all the time..I flare, I start Prednisone, it takes me about 4 months (usually at least) to taper off them and another couple months to feel like the drug is out of my system and AS SOON as I start to feel like a somewhat normal person, I start to flare again and have to get right back on them.
    This is the basis for the surgery talk and my pondering on "Quality of Life". I see so many people that have had their colon removed and are now living happier and healthier lives than they have in years and can do things that they couldn't even think of doing and I just want that so bad. I just want to feel good. I haven't felt good in so long I honestly can't even remember what it feels like...
    I'm 29 years old, yet most days I feel like I'm in my 50s or something. I also get joint pain from the chronic inflammation in my body so, add that to the pile I guess.
    I don't know. I'm interested to see what my colon looks like next week and what my doctor will have to say after the exam...until then, there's nothing left to do but think about it.

F.O.O.D.

    I last left off with an intro to my diagnosis of Ulcerative Colitis and a quick back-ground on me and what to expect here. I said I would save the beginning of managing this disease for another day and, honestly the more I think about it, the more I realize I am still in the beginning of managing this. So let me tell you something I deal with all the time - including today. Part of managing UC is food...food - food - always food. When you have UC people tell you to eat this but not that, try to limit this and eat lots of that, take this supplement but stay far away from that one, lots of small meals vs. three squares, chew your food, juice your food, blend your food, grow your own food - ALWAYS something to do with food. I've tried a couple different things so far, unsuccessfully - the specific carb diet with it's heavy reliance on nuts to substitute for grain threw me into an awful flare last summer that resulted in a few months worth of steroids and I came pretty darn close to a hospital stay. I've tried limiting my fiber intake which seems to help...maybe? I don't eat raw fruits/veggies because everyone says that is bad though I would literally sell my soul for a huge cold house salad with lots of cucumber and carrots and ranch (mouth now watering). I've tried herbal supplements, all kinds of vitamins (I like the liquid kind!), fish oils, blah, blah , blah....Not one thing really sticks out as something that really helps. There are some foods I have found I really cannot tolerate anymore: the most recent being sugary cereals. I thought a bowl of the generic Lucky Charms would be no big deal but have had quite a bit of blood in my stool for the last 2 days as a result...sigh...When this happens I try to go back to bland foods and I always drink LOTS of water.
    On my way home from work today I decided I was really exhausted and didn't want to cook anything and just wanted a stupid cheeseburger and would accept the consequences - though I have not found burgers to trigger anything in the past. So I did it. I admit it. I ate a cheeseburger after work. Slap my hands, I know. Weird thing is - I FEEL BETTER???!! Why is this? It's happened before too! I don't understand why a greasy cheeseburger always seems to make me feel better. This is just so counterintuitive. I go from watery stool and blood this morning to soft but slightly formed stool this evening. Maybe I'm giving credit where it is not due? I don't know. I started keeping a food/symptom journal over a week ago to try to help me track any correlations between my food intake and IBD issues that I may be missing. I hope to find a nutritionist in my area that has experience in UC or Crohn's that I can get help from because to be honest, right now, I have NO CLUE what to eat anymore.
    When I think about food (which is all the time since I'm on prednisone at the moment) my head starts swimming and I just want to take a nap. And not the nice "I had a fantastic meal now I want to slip into a food coma" kind of nap..no, the "I'm so confused the only thing I can think that may make it better is to go to sleep and start over when I wake up" kind of nap. I'm sure there are answers out there but I have yet to find any. I often miss the days when my food choices were as involved as 1. can I afford this, and 2. does this look tasty. Now it's 1. can I afford this, 2. does it look tasty 3. does it scare me 4. how will I feel after I eat this, 5. is eating this worth how I may feel later, 6. is this considered "gut friendly" 7. is eating/drinking this going to put me in the hospital, etc. It's really never ending and very frustrating at times.
    To make a long story short, I need a personal chef with an unlimited pantry/fridge at my disposal so I can try this or that and maybe one day many years from now I can make some sense out of something that seems like it would be so simple - eating food. If anyone knows any that want to work for free and come live in my kitchen - I'll be happy to give you my number :)

-Kate

Newbie

    So this is my first post, hence the Newbie title. I'm hoping, with this blog, to shed some light on my own disease by journaling my adventures in living with Ulcerative Colitis. I was diagnosed not long ago, in March 2011 and have had some ups and downs since then. I'm lucky to have lots of support from family and a few of my friends, though I must say a few friends that I thought would stick around have not. It's interesting what you learn about other people when you must begin facing your own personal struggles. 
    To start with, I was diagnosed with a form of Inflammatory Bowel Disease (IBD) called Ulcerative Colitis (UC). There are two types of IBD - one being Crohn's disease and the other is UC. Many people have at least heard of Crohn's disease thanks to the ever present circle of never ending bathroom - oh my god hold my hand over my guts while I look worried Humira commercials on TV. Usually when I explain UC I start with Crohn's so people have something to connect to. There are also several types of UC - I have what's called Pancolitis. This means my entire colon is effected. My doctor labeled my disease "moderately severe" 

at diagnosis. This basically means - pretty bad but not the worst in known history. The story of how I got to this diagnosis is short compared to some who suffered symptoms for years before finally finding out what was wrong. I began to notice around Halloween of 2010 that foods were "moving through" faster, my stool was less formed and I would have bouts of severe bloating for no apparent reason. By the beginning of 2011 I was having 10+ 'bowel movements" (I guess you could call them that) a day and was starting to feel the effects of chronic diarrhea like fatigue, weight loss and dehydration. Finally by the end of February 2011, I was spending the day packing my apartment I would soon be moving from with my Mom, after the 10th time having to run to the bathroom in about an hour, she gave me no choice and took me to the hospital to get checked out. Mind you up until this time I NEVER had health issues. I never even had blood drawn from my arm. I was always the picture of health and only not quite 27 years old. I stayed at the hospital for a few hours, was administered about a liter of IV fluids, had several blood tests, stool tests, and urine tests. The ER doc told me I must have some kind of infection in my GI tract because my white blood cell count was high and said they would know for sure once my stool cultures came back in about a week. He then proceeded to demonstrate how to wash my hands after using the bathroom...since I had never done this before in my 27 years of life, I was thankful for this knowledge...(sense the sarcasm?) I was discharged and thought that was it. Take the antibiotics he prescribed and feel better in about a week....If only...

    Things only continued to get worse and not a week after the ER trip I was at the office of a general practitioner with now more than 30 bowel movements a day, severe weight loss, blood and mucous in my stool, and so dehydrated that my eyes were "gooey". I was also so weak it was all I could do just to walk. The doctor took one look at me, listened to my story and immediately called a gastroenterologist (GI) and got me in to see him about 2 hours later. There I met the GI doc...little did I know, this guy would be my new best friend...after all..he's seen places on me that no one else but my Mom and Dad have seen. I once again relayed my symptoms and he told me he suspected Ulcerative Colitis and ordered a colonoscopy to take place 3 days later. He also started me on Prednisone - the evil little pill that now rules my butt (and life at times when I'm on it). 

    March 3, 2011 - a day that will live in infamy - at least for me. My colonoscopy and subsequent diagnosis of UC. I showed up with my Mom as directed at the crack of dawn - starving and completely devoid of all material of any kind in my guts. I was EMPTY! But still somehow felt like I needed to poo. I got checked in and soon was taken back to the lovely little changing room and put on the beautiful gown they generously supplied for me, got hooked up to all the little bags and pumps and machines to monitor me while under anesthesia, and shortly afterwards was wheeled back to the "scope room" to begin the procedure. All the while my Mom (also my rock) was trying to be strong and hold it together while watching her youngest and only girl be whisked away by a few really nice people in scrubs. The room they took me to was dark except for the monitors and a tiny little lamp on a desk where my GI sat, feverishly scribbling in my chart. "Hellooo Kathryn.." he says in his fun little diluted Irish accent...I would get to know this voice quite well. The nurse rolled me over to my side, gave me a brief rundown of what would happen then told me they would start the "drugs". FYI: Michael Jackson knew what he was talking about...anesthesia is ammaaazziinngg! In about 2.25 seconds I was blissfully sound asleep. 

    From what I was told about 30 minutes later I began to wake up - back in the little changing room with my Mom and GI and a definitive diagnosis of Ulcerative Colitis. Honestly, after 5 months of suffering I was relieved to finally know what was wrong. I remember being very stern with my GI for some reason. "So it's colitis?" I slurred - "Yessss" - "And you're going to put me on medication?" - "Yessss" - "And the meds are going to help" - "That's what we are hoping for." - that sat well with me and I think I nodded off for a few more minutes. Then went back to my Mom's house and got comfy on the couch while she went to the pharmacy to fill the first bottle of my new prescription - Asacol. The little brownish red pill that has yet to leave my side at all times. I have been taking 12 of these per day until about a week ago when I was prescribed the same medication, just bigger. Now I take 6 a day but each pill is double the dosage (800mg as opposed to 400mg each). At the time I was also taking four 10mg prednisone tablets in the morning. So I went from no health issues to 16 pills a day in a matter of a few months...and have never looked back. 

    So that's how I got my start in the IBD club. I think I'll save the beginning stages of managing this disease for another day. It's such a long, involved story even though it's only been 2 years and 2 months since my diagnosis. Since then, I've been fortunate enough to come in contact and find so many others dealing with various forms of IBD that are truly inspiring and brighten my every day. I have to say the IBD community is the silver lining of this disease. Even though most of these people are far, far away, through contact with them I know I would never have to walk this road alone, even if I was not so fortunate to have the support I do from my family. And that makes me smile. 

So that's an introduction to my colon from a newbie blogger. We'll see where this goes. 

If there is anyone out there that has questions about IBD, has it and needs an ear to listen, or is interested in any form of IBD awareness - feel free to get in touch with me. While I'm not full of resources I would be happy to help in any way I can. 

-Kate