Doctor is FINALLY making changes

Early this morning I had a Doctor appointment. I have been looking forward to this appointment for 2 weeks. See 2 weeks ago I had a terrible flare up, fever (102.7), mouth sores, abdominal cramping, diarrhea. Fellow chronies you know this is a typical flare up. My problem is I had 3 great months (April, May &June). I didn't wake up sick once & now it seems like I'm right back into my old habits. Feel good for a week then I'm sick for 10 days & it's a terribly vicious cycle. So July flare ups weren't this bad, but now they are back and I hate every moment of them. I also started a new job & I can't take off but I am not productive & I feel awful on a daily basis so I'm struggling. So today I went to my doctor and made him well aware that everything is no longer good, I'm fearful of my disease and the fact that we haven't controlled it yet. I made him aware of my new job & the symptoms I have, along with the number of accidents I've had post surgery, which I still find to be so embarrassing. I feel like with my doctor you have to become stern if you want results otherwise he doesn't take me seriously. So today I was stern & shocker he decided that we need to reevaluate my medicines. So I was ordered a stool test, a MR enterography, a specific blood test (test Remicade effectiveness),added an all natural iron vitamin, & added Ciproflaxcin to my list of current medicine. I go back on September 10 for results and the new plan. Lets hope we have answers as to why I'm having these flares up & a new method to fight my disease. I am just so sick of being sick. Those 3 months were amazing & I will hold onto those moments as long as possible. However, being so sick again is making those great months seem like such a distant memory, almost like it was all just a dream. Crohn's Casualties please give me your suggestions on how to handle the day to day activities while battling a flare up...I've added Imodium as needed to help make it so I have less accidents when I know I can't make it to a bathroom for a period of time as per my doctors instructions. We all know curling up on the curling up on the couch to indulge in a good memory is preferable solution, but I do not have this option with work. Thank you for any suggestions in advance. I and my bowels appreciate it. I hope everyone enjoys their Labor Day weekend. Take Care

The magic of black tea

     So about 2 weeks ago I woke up one morning and had a sore eye that had some redness.  I didn't know what it was or what it could be from.  I went to work and was talking to a co-worker about it, and she suggessted that I place a hot black tea bag over my eye for approxmiately 10 minutes.  When I returned home from work I thought about it, but I don't get home until midnight and to be completely honest my thought was to just do my nightly routine and jump into bed.  So that is exactly what I did.  The next morning I awoke and I still had some minor redness and my eye was a little sore.
     I start off my mornings with tea all the time.  I love tea, and each month I switch flavors from Earl Grey, English Teatime, Orange and Spice, Lemon Lift, etc.  You name it I've probably been on a month kick of it.  So I found my plain black tea bags, and at the time was on an English Teatime kick so I was a little upset that I had to alter my routine. 

My Current Obsession!

Nonetheless I made my cup of tea, once it steeped I took out the tea bag and placed it on my eye.  I had read online that the antioxidants in the tea bag help heal some bacterial infections in the eye, and I thought why not before I call the doctor.  I left the tea bag on my eye for 20 minutes.  After words I left my eye alone for about 45 minutes and before I applied my makeup for work I put a hot wash cloth on my eye for 5 minutes, and wiped my eye clean.  I then patted dry my eye and applied my makeup like I usually do.  I went to work, and had my day the next morning I awoke to no more eye pain and the redness had disappeared.  I was so grateful, and will continue to use tea bags if this problem ever happens again.
   If you know someone with the start of a eye problem, I highly recommend trying a black tea bag.  I'm sure you could repeat the process if necessary, I just didn't have to.  Hope this helps someone out.
Take Care, and have a great week.

Infusion day is here again!!

     Sorry I haven't posted in a very long time. I have started a new job and switched to working afternoon/evening shifts & I always lose track of time. I always think of writing a post, but by time I'm about to get around to it I've run out of time. 

     So in the time that's passed I've started a new job, which is with the company I wrote the blog post about. Super excited I was offered the position when my interview was less than 100% because of Crohn's. I have received additional insurance support through my hospital for the last year & that ended the 1st of July. I had forgot it ended until July 5, and that meant I had to postpone my last infusion date originally scheduled for the 11th of July. I resubmitted my paperwork to be covered this year & although I am waiting for approval I made less money last year than the previous year so I am thinking I will receive 100% coverage like I had before. 

    I was going to wait to receive an infusion until I was positive I was covered but my body won't allow me to wait that long. I find it difficult to understand my body and come to terms with the fact that my case of Crohn's is so moderate to severe that Pentasa alone even after surgery is not enough. So here I am once again sitting in the infusion room praying that I don't get sick tonight since I have to work 3:30-11:30pm. 

    I knew I had worn out my Remicade when I started having issues with holding it. I got to a point where when I needed the bathroom, I NEEDED THE BATHROOM! Walking stead fast through a mall is not the easiest thing to do when you got to go. Let alone having to turn around & walk the same route again because you still have to go. No shame from this girl in using a public toilet...mostly because I have no other choice so mine as well OWN IT!  Then the mouth sores returned & I am currently sporting 2 of them. I'm overjoyed about them, note the super sarcasm in above comment. The thing I still can not deal with is the accidents of any degree. I had one this morning and I was so embarrassed for no reason. No one was home & being in the comfort of my home I could take care of myself & had all the clothes in the world. But still the feeling of disbelief, embarrassment, and sadness washed over me. I can fully admit that I don't understand enough of my disease to comprehend the losing of the bowels, but it doesn't mean it doesn't happen. So I'm sitting here being pumped full of Remicade hoping that in 24 hours my body will start to return to remission, and I can return to minor worry about my Crohn's. I highly doubt I will ever become ok with this aspect of my Crohn's. So then there isn't much else to do but move on, no use crying over spilt milk. I hope everyone has a glorious week & can you believe it's almost August!?!

Take Care

Life's Grand, But Bowels Need A Rest

     So readers...I told you about my interview experience, and I believe that most of my issues were related to stress.  However, earlier this week I received a phone call extending me the job offer.  So I graciously accepted, and can't wait to begin.  Looks like my inner struggle was only inner, and I succeeded at selling myself and not my disease.  YAY ME :)! Thank you for all the kind words, and encouragement during my waiting game.
     This week I have been in Niagara Falls visiting my grandma, and I think I need to return home to give my bowels a chance to clean out.  I've been eating food that is healthy minus her cinnamon rolls, but I am constantly snacking here and my stomach is like enough already but I can't seem to stop.  I'm not even bored it's just everything looks so appetizing so I take a bite of it.  My intestines are begging for a holiday of their own.  I believe that Metamucil will become my best friend this weekend just so I can help my intestines out.
    It's been an amazing getaway, but I miss my man.  Next time I come up he's coming too.  I've grown up around the falls, and I've made many visits and don't always get to the falls, which is a ten minute walk from her house.  This time though I've walked the falls, and last night went to Buffalo on a wine and wind sailboat cruise.  It was amazing.

 

The plan was to stay until Friday, but I may pack up and head home this evening.  The nice thing about this mini-vacation is that I can make split second decisions.  So I am going to go back to sipping my tea on the front porch, and continue to not have a care in the world. 

 

 

    **A quick note:  My grandmother owns a Bed and Breakfast and Wedding Chapel right on Rainbow Blvd.  If you are looking for a getaway I encourage you to make a trip here if you can.  Her website is http://www.aromanticweddingchapel.com/bbhome.php3

If you'd like to have a small intimate elopement she also has a wedding chapel.  Check it out!**

 

I hope everyone enjoys their week/weekend.

Take Care!

Getting through an Interview

So today I had an interview, and I've never been able to relate to a commercial as the one I have posted above.  I'm sure you all have seen it and for those fellow crohn's casualties you've experienced it first hand.  Well this is the first time I've been worried or concentrated about my Crohn's in an interview.  Prior to walking into the interview I felt as though I needed to poop, but thought eh I'll hold it.  Now Crohn's casualties you understand it was brave of me to even consider holding it let alone make that my final option.  Let me explain, I have not have any issues with flare-ups lately so I thought I'd be ok.
I pulled into the parking lot early so I sat in the car and decided that I could hold it and wasn't going to find a gas station.  When it was 15 minutes prior to my interview I walked in and checked in with the receptionist.  She told me that it would be a little bit before my interviewer came out, and directed me over to a seating area.  While I was listening to her explain where to go I could feel my intestines wrenching...no abdominal pain but they were wrenching.  I tried to focus, but I kept thinking well maybe I should of went to the bathroom it was too late at this point.  So I sat in the seating area and waited.  While my intestines continued to gurgle I just kept thinking that I hope they aren't loud during my interview.  I attempted to remember my interview rules so I didn't fidget in the waiting area, and reviewed my resume trying to put my mind on something else knowing that the receptionist was watching my every move.  She was my 1st impression, and I believe I left a good one.  The interviewer called me into the room, and I thought ok think of anything besides your stomach.  Well that worked well for the first ten minutes and then the gurgling started.  I heard it and I'm sure she did too, but it was just a little noise then disappeared.  I was able to focus and finish the first part of the interview.
The noise or wrenching didn't return the whole interview.  It's as if my body knew this was an important moment and it needed to behave.  My intestines behaved, and I am now home so they can do as they'd like now.  I believe the interview went well, and I should know by tomorrow evening if I've been offered the job. 
So readers I hope I have your well wishes because I've sent out resumes to 50 different positions, and this is only the 2nd phone call I've received regarding a position.  It's extremely discouraging, and proves that the economy hasn't fully mended yet.
Hope everyone has a wonderful weekend.
Take Care.

Pentasa and side effects

     So I have been taking Pentasa for 2.5 months.  It's extremely costly for me, but it has put me into a stable state along with my Remicade.  I thought ok I can spare the expense if it means that I will be able to live a semi-normal life in regards to health.  In the past 7-10 days however, I have noticed that I have hives, headaches, and frequent urination.
The other night I jumped to the Internet in an unrelated search to find, if any, long term effects of Pentasa, and make sure that there wasn't a trade-off to being in Crohn's remission now and have something like liver failure later as a result of the medicine.  What I found was that there isn't a long term trade-off to Pentasa, which calmed that nerve, but what I read irritated another.  My symptoms that I have noticed may be side effects to Pentasa.  If this is the case I'm left asking myself "now what."  I've been on so many medicines prior to surgery, and after surgery I struggled to get my Crohn's under control.  So now my Crohn's is under control, but my body doesn't like the medicine I am taking...Enter a sarcastic "AWESOME" here. 
     According to http://www.drugs.com/pentasa.html, http://treato.com/Pentasa,Frequent+Urination/?a=s, and http://www.gihealth.com/html/education/drugs/pentasa.html these websites list side effects and potential causes of the said side effects.  The first thing that I read was the importance of taking Pentasa as prescribed.  I'm sure you are thinking "well DUH," but I've mentioned before my issue with taking medicine.  I was able to swallow the pills whole for about 2 months.  I then resorted to just swallowing the contents inside the capsules.  I learned that Pentasa is a timed release formula and the capsule along with the granules inside are designed so that Pentasa releases it's medicine into the intestine, where our issues of inflammation with Crohn's relies.  Even though I have been taking the medicine improperly for the last month or less I have not had any flare related issues.  I have just been experiencing frequent urination and my bladder is always full each time, wicked headaches that I put on the low side of a migraine, and hives that are itchy....combined this is all very irritating.
  Now I am taking the pills as prescribed for the 2nd day in a row.  I still have all side effects, and the headache is unbearable at times.  I've determined to continue taking the medicine for a total of 4 days as prescribed originally to see if there is any subsiding of side effects.  If there isn't any progress then I shall call my doctor, and make an appointment to discuss the experiences I am having with Pentasa.
     I am nervous about what medicine is next.  My gastro tried to prescribe Cipro and Flagyl prior to Pentasa, but I had to take those both after surgery and I puked trying to take the two.  When I did get Cipro and Flagyl down I was nauseous through out the whole day.  So I'd be less than thrilled to take those again. 
     I've been discussing all natural medicines with my friend Tori, and at the start of next week I should have them to take.  1 of them is for controlling my anemia, and raising my iron intake levels.  The other is to help repair the intestinal tract that has been damaged due to Crohn's.  If I'm going to become allergic to Pentasa then I hope that the 2nd medicine could potentially substitute Pentasa, and work with my Remicade infusions.
     The life of a Crohn's Casualty is always so medically interesting.  I'm getting extremely tired of this non-constant life.  I wish for everyone a splendid week.
Take Care!

What is Crohn's

This is the best blog post that I have seen describing what is Crohn's.  All credit of this post goes to The Crohn's and Colitis Effect, and the link to the blog is http://cceffect.org/feature/what-is-crohns-disease/



Crohn’s Disease is a type of Inflammatory Bowel Disease that affects the gastrointestinal tract between the mouth and the anus. Crohn’s Disease is an immune deficiency disease whereby the immune system attacks the bacteria in the gastrointestinal tract causing inflammation throughout the body. It’s estimated that roughly one million people within North America and Europe are currently diagnosed with Crohn’s Disease.

Symptoms of Crohn’s Disease can be diarrhea and bloody stools, frequent and irregular trips to the bathroom, abdominal pain, vomiting and weight loss. Crohn’s Disease can also lead to other complications outside of the intestinal tract such as chronic fatigue, inflammation of the eye, skin rashes including pyoderma gangrenosum, rheumatoid arthritis, and fistulas.
While Crohn’s Disease can be diagnosed at any age, most diagnoses are between the ages of fifteen through twenty four and again between fifty through seventy. Tests used to diagnose Crohn’s Disease are similar to that of Inflammatory Bowel Disease and can include colonoscopy, endoscopy, CT scan, biopsies of the gastrointestinal tract, and blood tests.
Currently, there is no known cure for Crohn’s Disease. Patients work toward managing the disease to achieve periods of remission. Managing the disease usually entails diet, medication, surgery, and lifestyle changes. It should be noted that surgery can not cure Crohn’s Disease but is used to remove parts of the gastrointestinal tract that have been heavily damaged by the disease. It can also be necessary for repairing strictures and for ileostomies.
Several medications are currently used to aid in achieving remission. Those include 5-aminosalicylic acid ( 5-ASA ), prednisone, Infliximab ( Remicade ), Methotrexate, Mercaptopurine ( 6-MP ), and Azathioprine.
The ability to achieve remission, regardless of medication, surgery, diet, or lifestyle change will be different for each patient as Crohn’s Disease affects each patient differently. Some may be able to achieve remission just through biological medication, others will need a few or a combination of efforts.

A Bird Bus Romance

     The weather here today is cloudy, and kind of makes me gloomy.  So to brighten up my spirits, and yours I thought I'd finally share the story of Seth and I.  This is not our current love story this is one from a younger age.  It starts when we were just in elementary school but it's our beginning, and every love story is beautiful, but ours is my favorite.

      So I have mentioned before that Seth and I have known each other since we were in elementary school.  We lived exactly 1 mile from one another until I was 17.  Seth and I got our start on the Bird Bus, this is the bus we rode to and from school everyday.  I was in 5th grade, and he was in 4th.  So we got our start innocently enough.  Him and I would sit together on the bus, and it slips my mind as to who asked who out but we were dating.  Elementary school dating is very innocent...we sat together on the bus, sometimes we'd hold hands, and occasionaly we'd sit together at lunch.  That was dating, but he was my boyfriend for the whole year, which is a lifetime when you are that young.  He was teased a lot by his older brother and friends for dating me, it was all in good fun, but the ribbing probably started to get to him.
     We used to have Field day at the end of each school year.  All that meant is it was a structured free for all at school.  We ate lunch outside, played games at different stations, and were allowed time to just sit with friends.  The morning of Field day I kissed Seth for the 1st time in our long relationship on the cheek.  The poor boy spooked, and at lunch time during Field day he sent his best friend Phil to break up with me.  Phil approached me, and my friend Katrina and said that Seth was breaking up with me.  He had no explanation and just walked away after that.  So I've always been a little confrontational and I walked up to Seth, and bullied him into telling me why he broke up with me and had sent his best friend to do it.  I gave him a bunch of grief for not doing it himself, and he finally said it was cause I moved too fast (kissing his cheek was too fast).  I believe he to this days is one of only 5 boys to break up with me, and he is the only 1 who sent their best friend to do it.  :)  We were in 4th and 5th grade...the relationship was bound to end anyways because we wouldn't see each other all summer.  I was heart broken for probably about 3 days, but I will admit I held some resentment against Phil for the next year or 2.
     After the summer break it was like nothing had happened, and Seth and I had remained friends all through out high school, and continued to stay in touch during college.  I found out after we got together this time that he broke up with me because I scared him.  He just didn't know how to handle an older woman at the time. :)  Now he embraces my age, and reminds me all the time that I'm older than him (1 year, 4 months, and 10 days).  There is a country song by Ronnie Mcdowell, and when ever it comes on the radio Seth will blast it cause "Older women are beautiful lovers..."
     I love him very much, and I'm so blessed to have him by my side through it all.  I hope everyone has a wonderful week.
Take care!

Medicines, Money, Questions, & Stress

So today is infusion day, Yippee skippie!!

I also received a phone call from my pharmacy & my Pentasa needs to be refilled.  I refilled it, but I'm nervous to pick it up & be told once again that it will cost me over $200.  I qualified for charity care through my hospital & have been receiving 100% coverage for all DR visits, infusions, & specialty tests since last June. This worked out perfectly because my surgery, all CTs, MRIs, & 4-7 hospital stays were taken care of. However, it does not cover pharmacy costs & I'm left to pay Pentasa out of pocket after insurance.  It's a lot of $$ & my income just got cut. So my life is on a severe budget. Why does being sick have to be so costly?  I have to reapply for charity care before my next infusion or else I won't be able to afford Remicade either. Prior to being covered it was costing me after insurance $350-500 every 6 weeks. That's $ I don't have! Needless to say I'm sweating some things. I'm lucky that currently minus this momentary stress related flare-up my Crohn's seems to be under control.  The reason it's in check is from my medicines & now I may not be able to afford the medicines, so if I can't afford the meds I go back to crazy flare-ups. This is a vicious cycle & when I think I'm ahead I fall behind. Well can you see why I'm having a stress flare-up?!? Plus things got worse with the family member & now we aren't speaking at all, which may be beneficial for a cool off period.  We're both so emotionally invested.
Fellow Crohn's Casualties this next part is for you. I don't go see my gastro for a little bit & calling him doesn't really help.   I'm curious about a few things & I'm looking for your answers to my questions.
1) During a flare-up when you have diarrhea & you've emptied the bowels, but still feel the need to go, has anyone ever had a mucus substance come out w/ some blood? Does anyone know what this is? My Dr. says he's only concerned if its a large amount of blood because blood in my stool is a constant.
2) Has anyone found anything to settle or lessen the abdominal cramping pain?
3) Has anyone had any luck with writing to a pharmaceutical company to supply meds? Specifically Shire which is the parent company to Pentasa? I was on Shire's website & they don't even have contact info that's close to me. Closest one is Massachusetts & their headquarters are in Ireland & all that's listed are mailing addresses.
4) I was told by my Dr. to not work out seriously, like lift weights or run long distances, which is ok by me because I hate to run.  Does anyone have any exercise tips that are not strenuous to keep my body in shape besides walking?

I believe that's all the questions and stress related talk for now. I hope everyone has a blessed day & thanks for reading, I was able to cut 45 minutes out of my infusion time.
 Take care!

Stress from family and Crohn's

I hope everyone enjoyed their Memorial Day Weekend, and took a moment to remember why we all had a long weekend.  My boyfriend and I went camping, we just bought a 5th wheel this year, and this was our first outing of the year.  This was suppose to be a weekend of nothingness.  Just to relax and unwind.
Well, that isn't what happened.  & I ask you to read at your own risk.  There's potty talk involved.
My weekend was ruined because of family drama.  It got so bad at one point that I was nauseous and I'm emotional, but this was an all new emotional point.  I've never had such a profound flare-up due to stress.  I understand that stress exacerbates Crohn's but this weekend I learned to what extent.  Sunday afternoon is when everything went down with one of my family members, and I tried to calm myself down.  So I stepped away from our company, and went inside our camper for about 20 minutes.  When I had finally composed myself I returned outside, but I had the worse abdominal cramping, and I had spiked a fever in those 20 minutes. 
I knew that the stress that had just been added to me would make itself known eventually.  Typically when I would stress prior to this situation I'd get abdominal cramping and diarrhea but it would subside after an hour or two.
That was not the case.  I spent the rest of the evening with abdominal pain and a fever.  The emotions had also drained me.  I went to bed on our last night of camping at 7:45pm.  I slept until 11pm and then I tossed and turned all night battling a slight fever, abdominal pain, and disgusting gas.  At 6am I just barely made it to the bathroom. It was nice that we had a private bathroom in our camper, but the whole camper smelt by the time I was done.  I would compare my bathroom use to that of when I had my colonoscopy.  I couldn't leave the bathroom for an hour...it was absolutely disgusting, and I wish I could leave because of the smell.  Once I had emptied out my bowels I still had some minor cramping, but the fever subsided.  I had expected their to some Crohn's repercussion, but I really had never had it be that extreme before.  We packed up camp after I was done using the bathroom, and tried to leave as quick as we could.  I didn't want to be there anymore, and the fun of our weekend had deflated like a balloon.
I know life has its ups and downs, but what went down with one of my family members is a huge down.  I trusted them whole heartily, and I was thrown by the way side for all the wrong reasons.  My mini-vacation was ruined, and not only my time but that of my boyfriend and others we went camping with. 
Now that my flare-up has subsided except for the obnoxious gas, I will move on. I am resilient, and like a Phoenix I will rise from these ashes.  Take care readers, and here's to better days!

Happy, Happy, Happy

     It seems that in the last few weeks I've heard quite a few of my clients tell me how unhappy they are in life.  Some seem to be content with the fact that they manage day to day, but wish that they had ultimately chosen a different path in life.  The issues with life seem to vary from career choice, family, spouses, money, location, etc.  Now I understand that one probably can't be happy all the time, and that life has a way of beating us up sometimes.  However typically a person can make a change in their life to have their happiness.  I wish these people would because as they live their life in some sort of a lie they are not only hurting themselves, but they are hurting others that are involved with them, be it family, friends, coworkers, whomever.
     Why does it matter to me?  Well it's been almost a full year since my surgery fiasco and stroke, and having Crohn's means that I've altered how I view my life on this Earth.  I'm 24 years old and I have a great grasp on the fact that our time here on this Earth in this form of a human is limited.  Why would anyone want to live it being anything but happy?  Happiness, as I view it, can not come from possessions, money, or things, but comes from the company one keeps and the memories you make.  To quote a television show (The Real Housewives on BRAVO) " Money just gives you Money."
     To me, happiness is success.  I use to think that I wanted to be a successful business woman, and make 6 figures while working 80 hours a week, and have a family some day.  That's way too many hats to wear, and with my Crohn's I haven't even been able to work a 40 hour week let alone 80.  So my happiness is simple.  It's to do something I love, and currently that's cleaning houses.  I'm good at what I do and I have my OCD to thank for that, but I also enjoy knowing that some people rely on us because for one reason or another they are incapable of cleaning their house.  Customer Service has always been my line of work, and will continue to be forever even if I stop cleaning I will most likely pick another career that deals with human interaction....I enjoy and find satisfaction in knowing that what I do no matter how small can impact a person in a positive light.
     My love life...at 24 years old I can say I have found my soul-mate, the one, my other half, & any other extremely cliche name for my life partner.  His name is Seth, and I have known him since the 5th grade.  We grew up 1 mile from one another, and in 5th grade we "dated" for the school year.  Of course dating in 5th grade consisted of holding hands on the bus, and sometimes sitting together at lunch.  Needless to say our young love didn't last, and with the school year ending he broke up with me (I'll tell that story in a different blog post), but we were friends throughout our time in school.  I am a year older than him so I graduated and went off to college, but came to his graduation party from High School and with social media we kept in contact.  Almost every 6-8 months we 'd ask each other for life updates.  Well, we reconnected in January of 2012 & we've been together ever since.  I love him with all my heart, and finally understand when people who were truly in love use to tell me that when you find that person you just know.  I know that I am truly blessed, and on the day when we finally do wed it will be till death do us part relationship.  This may come from the fact that we both have parents who divorced, but I know that I will marry my best friend.  I use to tell my mom that no matter how long I had to wait to get married that I would because I refused to go through "the BIG D & I don't mean Dallas."  I'd become a crazy cat lady before I married just to marry, so when our day comes, and I walk down that aisle I will know that he and I are my favorite love story.
     Money is always a problem, and will probably always be a problem.  There never seems to be enough.  Seth and I spent our last couple of weeks dreaming of winning the powerball, and what we would do with our winnings.  It was great to dream of having 300 million lying around, but sadly we don't live anywhere near Florida so we did not win the jackpot or anything at all.  We still enjoy playing numbers and will continue too, but we understand we have to work for what we have.  We are currently saving for a house, and with me being self-employed my income can not count so we are limited in our mortgage approval.  So we are looking at houses, and hoping we find that one that can be our starter home, and trying to save money for a deposit while trying to down some bills to help boost our approval amount.  Student loans suck, end of discussion!  But we are working at it, and know that this will take time, and that patience truly is a virtue in this instance.  So money limits us all the time, but money won't make me happy....it just makes it easier, and maybe someday I will have an exurbanite amount of money, but I don't need it to be happy.
     Basically what I'm trying to say is find happiness in what you have, and the situations you are handed.  This life is a gift and I hope you treat it that way.  I know that I will probably die from Crohn's complications, and I hope that it's 90 years from now, but the likelihood of that is small.  So I wake up everyday and am thankful I woke up and try to appreciate all the little things life gives or has given me.  And when life does get you down remember that with each sunset their is a new sunrise.  Enjoy this life because you only live once, and when you are on your death bed you don't want your one regret to be that you wish you had been happier.  Find your happy, and do whatever it takes to keep your happy.  Like Phil Robertson always says "HAPPY, HAPPY, HAPPY."
Have a great Sunday Y'all!

When an old problem becomes a new problem

     I have found that having Crohn's has resulted in other body ailments re-upping themselves.  So not only am I struggling to keep my Crohn's in check, but I'm adding doctor appointments to try & figure out what else is going wrong with my health.
     About 1.5 years ago I noticed my skin flaking like crazy.  I would wear long sleeves because my arms would be so red and flaky that I was embarrassed.  I had remembered my doctor talking about how my skin could develop a rash due to Crohn's so I ASSUMED (which no one should ever do, and I should know better than to) that it was just a rash that was Crohn's related.  I also was living far from my doctors at the time, and it would of been a pain to travel 3.5 hours to my doctors for them just to tell me that it was Crohn's related... I ignored the problem and thought it would go away, and it did clear itself up.  Until this winter, my dry spots returned & they were painful to put lotion on.  So I finally spoke with my Gastro. Dr. about my dry spots, and he gave me a referral for a dermatologist.  I saw the dermatologist, which was a nightmare. 

     Side Story...I do not enjoy going to the doctors, and dislike that I've been to a doctor more times in the last year than in my 23 years of life before that.  So the dermatologist walked in looked at my one dry spot and said it's eczema, here's a prescription if it doesn't work call back & we will see you again. Signed my paperwork, and out the door she went.  I have never felt more like a number than in that instance, I was just an insurance paycheck to her.  I walked out of there irate, and have not been back since.  There was no Hi how are you?, what's going on? nothing! It was so rude.

     So I was diagnosed with eczema, and as a kid I had had some issues with eczema but it was little red itchy bumps just on my arms.  My eczema had changed, and I'm assuming it's because of my Crohn's messing with my body's chi.
     My other old problem was low iron count in my blood.  A typical hematocrit level (one measure for calculating iron, the other is hemoglobin levels)  so a typical hematocrit level in an adult female is 34.9 to 44.5  Proper Iron levels.  My hematocrit level before I was diagnosed with Crohn's or had really extreme symptom of Crohn's was typically 33.  Now my hematocrit levels are 30-31 in my last 2 blood draws.  My doctor asked me to start taking iron supplements every other day because of the constipation iron pills cause.  He wants my iron levels to rise, but doesn't want to throw my intestines into a tizzy especially since we've come so far, and finally have my crohn's in check.  He's mentioned 2x now that if we don't raise my iron levels there is a possibility of needing a blood infusion, which I'd like to avoid.  But my blood type is A positive, ARE YOU MY TYPE? :)  A little blood humor there.
     SO I have a new problem, and am looking for any guidance (fellow Crohn's Casualties) before I call my doctor.  When I take the iron supplement I end up with 3 hours of fairly intense intestinal cramping.  I can only fathom that this is a result of me upsetting my infected areas of my intestine.  I have 2 portions of infected intestine left in me, and I'm wondering if the digestion process of the iron pill is causing the pain.  Has anyone had to take or takes iron pills?  Do you know this cramping that I speak of?  Does Metamucil help all?  Should I try liquid iron?  Suggestions, I know none of us are doctors or maybe a few are, but y'all aren't my physician and it'd be best to contact him. But I am looking for ideas or to hear I'm not the only one who has this issue.  So today I didn't take my iron pill, and I've been feeling BLAH all day. When my iron is low I usually have chills, joint pain, and feel sluggish, and I've felt this way all day.  I can't find a happy medium, but the sun is out and it's 65 here so I am sitting inside in flannel pj bottoms and a sweatshirt with the sliding glass door open.  I may be cold but I am trying to enjoy the sun, and now hopefully to enjoy my weekend.
Take care y'all!

Selfish Homemaker

     I've mentioned before a few of the perks to co-owning a business, and today's perk is being finished by 1pm.  Granted I started cleaning at 6am, but I am already home and changed into comfy clothes.  I love being able to put on my relax pants (PJ bottoms) and do whatever I need to get done around the house.  Today when I got home I started some laundry, and I still have to wash some dishes, and then I'm making Chicken Parm. for dinner.  I wear the Suzy Homemaker apron well, and my boyfriend doesn't understand how lucky he is, well maybe he does :).  Anyway...
     I wanted to tell y'all that after I finished my last blog post I had thought I jinxed myself, but it was sort of a false alarm.  The next day after my blog post I had ate breakfast and made myself a homemade latte.  I went off to work and about 2 hours after I ate I cramped up pretty badly, and wasn't very useful cleaning for about 3-4 hours.  I came home and relaxed that night and thought that I was starting a flare-up.  Which threw my mind into overdrive figuring out what it meant for me now cause it meant Pentasa wasn't working with the Remicade.  The next morning when I awoke I had a little clearer thought process, and thought maybe the coffee had thrown my system into an abdominal cramp so I had my bowl of cereal and got ready for work as usual.  We arrived at the 1st house, and 2 hours after eating I cramped up again, and laid on the floor until I was able to move and get back to work, at a much slower pace, but I was still working.  My mom, who works with me, asked me about my eating habits and if anything had changed, and I told her about my new cereal and coffee intake 2 days ago, and how I just had cereal that morning.  So we determined together that I should stop eating the cereal, and I haven't had any issues with abdominal cramping since.  I'm so grateful to my medical team that we have found a solution to keep my flare-ups at bay.  The change in my personality is easily noticeable, and people tell me the color has returned to my face.  I hope this lasts for a long period of time. 
     For my fellow Crohn's Casualties that are still experiencing flare-ups, I'm sorry.  I feel your pain, and 3 weeks ago I was in the same boat.
     I wanted to take a moment to talk about why I started this blog.  I've received a few comments from readers, friends, and families telling me how brave I am for sharing my story.  I thank y'all for thinking I am brave, but I must admit I have selfish reasons for this blog.  I was having issues coping with still being sick after having surgery, and felt like the only person my age who had Crohn's.  I think the last concept came from being in the hospital 4-5 times after surgery I was always with elderly people.  I had thought about starting a blog for quite some time, but didn't think anyone would read it.  I finally got over my fear of no one reading the blog, and knew that this vent session would be therapeutic to me. I find myself much less emotional about my life, and people who I don't know read my blog as well as friends and family.  I think this is a great way for me to share intimate details about my crohn's life while remaining behind a computer screen so judgment doesn't matter.  Although since being in the hospital I think I have no shame left...the lack of privacy while staying there has opened me up to be honest about things that go on with me, and I believe that's the only way my advice can be useful to those who have crohn's or are interested in learning about crohn's.

I wish y'all a marvelous week!

Long time, no posts & Final to my surgery

     Sorry about not posting for quite some time, but I have been rather busy.  So I want to start with saying that I am doing and feeling great!  This is a drastic change from 10 days before my last post.  Before surgery for approx. 2 months I had been feeling awful, and then my surgery nightmare, and post recovery were not too well for me on the health field.  Well that all has changed...Pentasa + Remicade = My great feeling/mood.  My body is finally starting to repair itself, and the major sign of that was my period came back.  I'm sure plenty of women would love for their period to disappear for a month or 2, but I know that I'm really not doing well health wise when it does.  So for now I am grateful for its return.  Before my doctor and I had this figured out this combination I was finding it rather difficult to be up beat about life in general.  I've always tried to maintain a positive attitude, and think I put on a good front for those people who I wouldn't consider extremely close (mom & boyfriend).  Extremely close people get to listen to me gripe, cry, whine, complain about crohn's and how I feel that day.  I've missed about 50 days of work in the past 7 months because of my illness...fortunately I co-own a housekeeping business and my partners have been very understanding and picked up my slack.  So quick recap, I'm feeling great and everyone is noticing, which must mean I'm a grump butt when I don't feel well.
    Rowan Atkinson is hilarious.  Whenever I write a new blog I start up Netflix and choose a movie at random from the different categories.  Today I chose Mr. Bean's Holiday, and I'm enjoying it and becoming distracted by it.

     Now I'm going to finish telling everyone about my terrible surgery experience.  I had told you about my drainage bags, and how my intestines didn't heal to one another for a few months after surgery, and my surgeon discussed possibly going back in for a colostomy.
Well I was in my hospital bed and my surgeon came in and said my drainage levels were finally stabling, and if all went well I could go home on Monday, which was 1 day away.  So I was feeling great even with my lack of sleep, and my boyfriend was there.  We were watching Food Network because I'm a glutton for punishment, and it was 9:30am from what I remember.  My mom had just texted me saying she would be in to see me later that day because she hadn't had much rest either.  I never even had a chance to respond because the next thing I remember my heart felt like it was racing, and my breathing became abnormal.  I told my boyfriend that I didn't feel good & thought I may puke; he handed me my bucket that was at my bedside table and I grabbed on to it just waiting.  The next thing I knew my vision started to go in and out, and I told Seth, my boyfriend, that I couldn't see and then my muscle control went.  My head dropped down, the bucket fell from my arms and my vision was gone entirely.  After that I only remember that I was trying to tell Seth to call my mom, but I couldn't say anything.  At this point in my mind I started freaking out, I couldn't see, move, or speak.  Then I sort of blacked out, and the next thing I remember is a nurse asking me how many fingers she was holding up.  I was panicked because I still couldn't see, but my speech had returned.  She proceeded to ask me about my sight, and I told her that it looked like an old television screen all black and white little squares.  She then asked me to squeeze her fingers with each hand, make a fist and push against her hands.  My vision restored itself.  She moved to my legs, and asked me to do the same but with my feet.  I tried with all my might to move my left leg, but couldn't.  My leg was numb from the knee down.  I was stable though, and my heart and breathing had returned to normal.  After 3 hours my left leg returned with full capabilities. My boyfriend told me that 5 nurses had rushed in after he had left the room to grab someone when I slumped over in the chair.  They hoisted me up on the bed, and when they had done so they opened one of my Hickman ports, and I began to bleed out as well.  I was then informed that it was suspected that I had a TIA /Mini-Stroke and Pulmonary Embolism.  I had to stay in the hospital for an additional 6 days after my stroke to make sure that it didn't happen again, and I had to be cleared from neurology, cardiology, and gastroenterology.  This sucked!  My brain scan came back clean, but my heart scan showed I had a tiny hole in my heart.  My cardiologist would not fix the hole unless I have or had another stroke or another heart complication.  So this means that I will be on a low-dose aspirin regiment the rest of my life.  I am so very grateful that I had no residual damage from my stroke, but it makes it hard explaining to new doctors what happened because they expect something to be wrong with me.  I do believe that from my stroke my depth perception is off because I have noticed that I seem to bump my head a lot more than I use to.  It's almost like I lose sight of things and a concept of how far away they are like when I lean over or into things.  I understand that sounds so weird, but has anyone else experienced anything like this?      
     But there you have it, My whole hospital surgery story, and let's hope when I have to have gastro surgery again that it goes better than my first.  The reason I say when is because my surgeon already said I will need to come back in 5 years time for my other infected portions, but I currently feel great.  My current medicine list is as follows;
*Remicade every 6 weeks
* Pentasa 8 pills every day
* Iron supplement 1 every other day
* 81mg Aspirin 1 every day
* Multivitamin 1 every day
* Metamucil as needed
Total count of pills in a day = 12

    Well I hope to get into some structured schedule for writing this blog, but with this nice weather I don't know how likely that is to happen.  Please stay tuned for more on my life of being a crohn's casualty.

Day to Day

     Good Evening readers!  I'm finding that when I want to write I don't.  So I apologize for inconsistency in my posts, but hope that you enjoy my posts when they do pop up.  The weather in upstate is finally warm, today we hit 70 and I loved every minute of it.  This weekend I finally got a massage appointment, and it helped my neck a little but I still don't have full range in turning my neck so I see a Chiropractor tomorrow afternoon.  I'll be so grateful when I can look to my sides without turning my whole body.
    Last week I went back to my gastro doctor because I have been having issues while being on Remicade.  He had placed me on Pentasa (3 weeks ago) to work with the Remicade, but I have been seeing him every 2 weeks to see if I get any better or not.  Well when I went 2 weeks ago I felt awful, and he ordered all these tests to be ran to see how my body was coping with the Remicade.  When I went back on Friday I felt great so he canceled 2 of my tests.  But I go for an infusion this Thursday, and since having surgery I haven't found a solid non-flare-up-time (made up word).  I receive my infusion and am great until about the 10th day after infusion, but then I get so sick with a flare-up for 7 days.  It's hell and I have been missing a solid week worth of work during this time because my flare-up is so bad; I end up with fevers, mouth sores, diarrhea, and abdominal pain.  After day 6 going into day 7 of being sick I begin to feel better.  Then the flare-up begins to subside, and I spend about 5 days feeling BLAH, not really sick but not feeling well either. After that the flare-up subsides, and I feel fine then I get another infusion and repeat cycle.  I have an infusion every 6 weeks due to the severity of my Crohn's, but since surgery I don't seem to be doing as well, but this infusion is the 1st one that I've been on Pentasa for so we will see how I fair.  I'm hoping no more weird flare-up in between so I can have some normalcy in my life.  Plus my BFF's wedding is day 9 after infusion, and I really need to be feeling great on that day.  I have responsibilities as a bridesmaid plus I don't want to disappoint her by being a party-pooper cause of my Crohn's, but I know she is understanding.
     So my doctor and I have an appointment 8 days after my infusion to monitor how I am doing, and I have to have blood drawn before the appointment so they can see how the remicade is reacting with my body.  If I am sick when I go to this appointment, he will schedule me for an intestinal CT scan, and possibly a specific blood test to see if I am developing an allergic reaction to Remicade.  I really hope this isn't the case because what I've seen my medical options are severely limited, and I've almost completely ruled out Humira since I don't want myself or family injecting me.  Anyone been on or still on Humira?  What have you experienced?  Am I being a big chicken?  Help a girl out, please.
     Another reason why my boyfriend is the one and how I knew.  Let's face it fellow Crohnies we do not always get the choice about our gas, and it's not always sunshine, rainbows, and a bed of tulips.  Dating means that you still don't do certain things in front of one another or at least you're not suppose to.  I can definitely admit I was the first one to fart in this relationship, but once I did we crossed a bridge and haven't looked back.  Although the first one I let rip was on accident, and really rancid....I was so embarrassed I wanted to cry.  We were leaving our mall and walking to the truck, and I was having a flare-up and let one slip while walking and thought OK it will air out before we get to the vehicle, and no biggie.  Boy was I wrong...it smelt the whole truck up he rolled down the windows, and I just apologized profusely.  He was so sweet...he said everyone does it, who cares, but are OK?  We can head home, we don't have to go to X (I don't remember where we were headed).  Don't get me wrong I was still terrified, but he did calm me down a little, and at least made me feel as though he didn't mind although I'm sure he did.  Heck, even I wanted to hang my head out the window like pooches do.  He's so understanding, and has been since day 1.  I love him dearly, and am so appreciative that he loves me for me (Crohn's and all)
     I know I still have to write about what happened at the hospital, and I am trying to work up the courage to.  It's one of those moments that was so personally scary that talking about it is difficult.  Please bear with me...I will tell you what happened, but I also want to keep everyone updated on what's going on with me currently.  Until next time, Take care.

Being my doctor's first ;)

     Sorry I haven't written in a few days.  I meant to write every other day, but work has been crazy busy and by time I get home I just want to make dinner and then relax on the couch with my boyfriend until bedtime.  Plus these last 3 days my neck has been so stiff and tight I can't even turn my head, and I've called 3 license massage therapists and none of them can help me...TALK ABOUT FRUSTRATING!! 
     So now...back to my trip to the ER.  I had been sent down for a CT scan, and the techs started the scan and immediately found 2 pockets of fluid in my abdominal area.  The fluid had been coming out of my surgery site.  I had an adhesion leak after surgery.
     Side note about this.  At my pre-op my surgeon had been very confident in his ability to resection my intestine and not have any issues.  He also had never had an adhesion leak in any of his previous surgeries.  WELL, dun dun dun surprise Annika's body has to be difficult.  I was his very first adhesion leak.  See my surgery went as planned, and I seemed to be healing properly when they released me from the hospital.  But like I just said, my body had to be difficult, so my intestines although stitched together decided that they wouldn't grow back together which left an opening that allowed fluids & digested food to leak into my body.  That became infected because it's waste that is inside your body pushing against organs, and the pain was immense.
     The doctors had to relieve the pressure that was on my organs caused by the pooling fluids, and also remove the fluids from my body since they are toxic to my system.  So 2 tubes would have to inserted and the pool would have to be puncture and most sucked out, and then the tubes would remain until the pooling level was less than 10cc.  So I was given another diluadid and sent to a CT operating room area where they could use the scan to see the needle placement, and make sure they were puncturing the fluids.  The doctors decided they would try for the one in my back first, and I thought they were crazy.  Here I am a girl in terrible stomach pain and they need me to lay on my stomach, but I should of known how well the diluadid worked...I rolled over slowly still hesitant, but felt no pain at all until they got the needle close to the fluid sac.  The needle and tubing didn't hurt at all, until they were unable to penetrate (Hate that word) the pooling.  I remember screaming out in pain, crying, and pleading with the technician there to stop.  After 3-4 times of them trying to poke through they finally were able to, and what came out was the most disgusting fluid that was brown and had small floaty things in it, and yeah it was just nasty.  I couldn't keep my eyes off of the cylinder they were filling though, and the doctors removed 600cc from my back, and with that tubing in place were now ready to start on the front pouch.  I don't remember the needle placement in my stomach because the drugs make you loopy, and they had no issue with poking the front fluid pouch so I can recall any pain.  The doctors had extracted 600cc from my front pouch as well, and with all tubes in place each tube was then attached to their own bag.
     I was instructed that I would remain in the hospital until my fluid leakage levels were under 100cc, and I would not be allowed to eat because I needed to be on COMPLETE bowel rest so I had a Hickman placed.  A Hickman is a port that goes in just below the collar bone, and the line runs right into the artery that enters the right atrium.  Outside the port are 2 lines, 1 is used for feeding (TPN) and 2 is used for administering medicine.  The lines have to be cleaned out every morning and every night with saline.
      There I was stuck in the same hospital room where I was right after surgery....I was even in the same bed, the nurses thought they were doing me a favor.  I was not allowed to eat or drink anything.  I was given a swab and a cup of ice water to keep my mouth from drying out.  I would be "fed" TPN, which is a large bag of your body's daily nutrient requirement, and calories to maintain weight.  Since the liquid is going straight to your heart then there is no need for any digestion, and the heart mixes the liquid with blood then sends it to its appropriate places. 
    So I was unable to eat, and now had 3 tubes just hanging out around me on my bed.  I spent my days watching Food Network because I'm a glutton for punishment, and my boyfriend was there every day before he had to work and would allow me to smell his food.  What a loving man :) I know it sounds weird to say I smelled food, but not allowed to eat it. I missed it so I just sniffed it and thought about how good it would taste if I could eat, and imagined I was full.  I was never full, and always felt hungry even with my TPN.  Finally after 5 days my leakage had decreased to about 110cc a day in each bag, and my surgeon felt that I may be able to go home in the next day.  Best news ever for anyone whose ever been stuck in a hospital bed.  Needless to say I was ecstatic to bust out of that Popsicle stand, but once again my body had to be difficult.
     I'm going to end here for the day sorry for the cliffhanger again, but not really sorry because it means you have to return to find out what happened.  Take care of yourself!

Surgery and the beginning of what followed

     So on June 26, 2012 I was scheduled for my resection surgery.  We called the night before and were told to arrive at 7:30 am.  We'd be the 1st surgery of the day, which I thought would be best.  My mom, boyfriend, and step-dad went to the hospital with me, and we waited in a waiting room for what seemed like forever.  This absolutely did not help my nerves.  I was a 23 year old who had never had a hospital stay before or any type of surgery.  I'd only ever broken my pinkie toe and cracked a rib before; both of which can not be fixed by visiting a doctor so I had let them heal on there own.  Finally they take you into a bed and waiting chair room area that is separated by shower curtains.  I changed into the dress that doesn't have a back, and man did I wear that gown well :) I was the best dressed patient there!  I make jokes when I'm uncomfortable, similar to Chandler from Friends, and that's all I could do until they wheeled towards surgery.  My surgeon came in to make sure I was holding up well, and I responded with "Well how did you sleep?, Are you well rested?, Did you eat so you're not hungry?, & Are you in a good mood?"  Once he responded with appropriate answers I told him OK I'm ready.  Then I don't remember anything.
      After surgery, I was drugged pretty good, but some family stopped by to make sure I was holding up.  I was advised to not do much moving as my abdominal muscles had been torn and needed to heal.  I was informed that I had 2 other areas that were infected, but not as badly as the portion that had been removed.  So I spent 3 days in the hospital and then I released.  The worse car ride I ever had was on the way home from the hospital.  It was awful, I was still drugged, dazed, and every bump made me sick.  I returned home, and my boyfriend and friend Tori were there waiting for me.  She had driven from Oneonta to spend my 1st week home with me.  She was the best nurse....she helped tremendously, and always made sure I took my medicine.  I had some abdominal pain, but I assumed it was just from me pulling myself up on the couch.  When your abdominal muscles are torn you learn real quick that every movement requires abdominal muscles, and it takes a few minutes to move at all.  So I was slow at getting up, and spent the week pretty much confined to the couch, and watched a lot of Netflix.  Other down side is when everyone tries to make you smile, and you end up laughing...it hurt to laugh.  My abdominal pain seem to be getting worse not better, but I didn't think much of it, and Tori returned back home.  My boyfriend would spend every day with me until he had to go to work (at the time he worked 2nd & 3rd shift), and by time he left usually my mom was home.
      So about 2 1/2 weeks after surgery I awoke one morning in the most excruciating pain.  I was unable to lift myself from my bed.  So I laid there screaming for my mom, but the fans were on since it was summer so I was drowned out.  I had tried calling her from my cell phone, but that didn't work either.  So I had no other choice but to try and get myself out of bed.  It took me 45 minutes to get out of bed.  I can not explain how bad  I hurt, I was crying because every move, turn, motion, even breathing hurt, and I've always thought myself to have a pretty high tolerance for pain.  I woke my mom, and she preceded to call my surgeon's office for the on call doctor.  He called back right away and instructed us to go directly to E.R., which we were planning on anyway but he had notified them of my arrival.  Once we arrived in E.R. they have to ask all the typical questions, and in between my sobbing I did my best to answer.  I described my pain, told them my height, weight, that I just had surgery, and when they asked me to rate my pain I just looked at the nurse as tears rolled down my face, and she goes I'm guessing a 10 and I nodded.  To this day (although it's only been approx. a year later) I have never felt such a pain.  I was given a bed and room in E.R., and at this time my boyfriend was training in Ohio so he couldn't be with me.  I'm sure he felt terrible about not being there.
     A nurse came in and asked if I'd like some Dilaudid, and I declined.... I'm not big on drugs, but he wrote the order in so it could be filled if I wanted.  The gastro dr. that was on call came in, and started pushing on my stomach, and I winced and nearly jumped out of my own skin.  He suggested I take the dilaudid because he would be doing more poking and prodding of my stomach.  I accepted, and then he poked some more before I even had the medicine and I just cried and screamed in pain.  It took the nurse an additional 45 minutes before I received my dilaudid, which helped tremendously and I was able to nap.  Mostly because dilaudid kicked my butt.
     They had scheduled to send me for a CT to find out what exactly was going on, but I will write about what sent me to the hospital next time.  If you have Crohn's or a relative who does please feel free to share your story.  Any questions, insight, tid-bits please leave me a comment.  Thanks for reading, and have a happy weekend :)

From bad to worse

     I reconnected with my boyfriend in February 2012.  At this point in time my medicine wasn't really working, and I was having flare-up after flare-up with a small appetite.  I was worried when I was diagnosed about how to tell someone I was dating.  Crohn's isn't ever going to go away, and I will always have my moments where I feel great or I feel totally crappy.  Crohn's is a crappy disease quite literally, and those of you who have it know what I am talking about.  Although it isn't anything that is transmitted it is hereditary.  SO the conversation went a little like this... Me: "I have an auto-immune disease called Crohn's, which is a disease that attacks my intestines"  Boyfriend: "OK, that's fine."  I found out about a month later that the Boyfriend went home that night after date-night and researched what is Crohn's.  WOAH!!! Talk about sign of GREAT Boyfriend....sign #1 that he was a keeper.
     Well, as I was saying, I had started to get progressively worse.  I was already receiving Remicade every 6 weeks with a high dosage, but I was starting to flare-up after 3 weeks.  To go 3 weeks on medicine and then get severe abdominal pain, cramping, diarrhea, loss of appetite, more extreme weight loss, and mouth sores.  It was the absolute worse, I was missing work, canceling plans, and lying uncomfortably trying to soothe my pain.  So my gastro decided in April 2012 that we had exhausted our medicinal options, and sent me to a gastro surgeon.
     I'd like to take a moment and tell everyone of my readers how great my surgeon was.  His name is Dr. Todd Francone and he was AMAZING!  He had a very good bedside manner minus crying, but what man handles crying?  He has since left University of Rochester Medical Center and has moved to a location in Massachusetts.  For anyone who has to have Gastro surgery of any kind and you are in Mass. then go see him.
      Ok, my 1st meeting with Francone I went with my boyfriend with a list of questions in May of 2012.  I found out that the surgery would be by laser as long as everything went well so minor scars.  The doctors would be removing the part connection of my small and large intestine because that was where my infection had progressed so much that I had an obstruction (I was so swollen that food was not allowed to pass through & I ended up puking undigested food because my body was unable to pass it through my digestive tract.).  He also said he'd take my appendix so that no doctor could ever try to blame my pain on appendicitis.  Francone said that as long as everything went well my recovery would be 6-8 weeks.  I'd be on antibiotics when it was all over to keep infections away, and I'd have to be careful with movement because my abdominal muscles would be torn and I needed them to heal properly.  I'd stay in the hospital for 3 days then be released, and be on bed rest for 1 week after.  If things didn't go right there was a chance of an adhesion leak (my intestines don't connect and then a hole forms at the site of surgery and digestive fluids leak into my body).  My surgeon at the time of this conversation had NEVER had an adhesion leak, but I would become his first and that will follow in a later post.
My questions were:
"What's the likelihood of me waking with a colostomy?"
- Small as long as everything goes well, but if I have to cut out more then we'd fit you with a colostomy that would stay in for 6 months, and then we'd reconnect you intestines.
"Could it jeopardize my ability to carry a baby?"
- Most likely not because the surgery wasn't down in the rectal area.
"What will my eating habits be like after healing?  Do I still have to follow my Crohn's diet?"
- You should be able to eat whatever you'd like because the infected area will be removed, but it would probably be best to stick with your diet."
"How long until my body starts to attack my intestine again, and I show inflamed intestines"
- Without returning to your medicine it could return in 5 years, but with your medicine you should have no infection for 10 years.
"Will I have to have surgery again in 10-20 years?"
-Yes, most likely.

And that was the end of that consultation.  I went back for a pre-op 1 week before surgery in June 2012, and met with the nurse.  I brought my mom along so she could hear or ask any questions that she had.  The nurse said that because I have no other pre-existing conditions and before Crohn's have been healthy that my recovery should be quick.  She said that in 3 weeks my pain would subside, and I could start returning to my activities.  She stated that it'd take 6 weeks and I'd be good as new.  So my mother walked out of there thinking this was minimal surgery and I'd do great, which was an awesome outcome but I reminded her of what the surgeon said could happen, worse case scenario wise.  We left feeling good, and were given operation instructions.  Next time I would see my medical staff would be at the hospital the morning of my operation. (To be continued...)

On a completely unrelated note...Today it reached 52 for a high here in NY which is a big deal.  Spring may finally be here so I took the puppers for a walk.  They both enjoyed it very much, as did I.  Thank you spring for finally springing.

My day to day

      This is my daily regiment of medicine, and add an infusion every 6 weeks brings my medicine count to 5 types.  I am currently taking Pentasa (the big blue pill), a multi-vitamin (the yellow pill), low-dose aspirin (the small white one), a teaspoon of Metamucil (not pictured), and Remicade.  With my issue swallowing pills this is always a real fun time for me.

     

      So my day to day varies with my Crohn's and that's the worst part.  I could wake up and feel great and end up having a good day.  I also could wake up and feel great and then have a flare-up that could ruin part or all of my day.  I may wake up and feel bad because of a flare-up and  that could last all day, or it disappear in a few hours or so.  The biggest sign that I am not feeling well is I begin to hunch over when I am standing or just sit down all together. 

      Today I went to work at 6:30am and I was feeling fine.  I didn't have any flare-up issues, no pain, still have sores from getting sick last week, no abdominal cramping, no fever, and no reason to feel awful.  So we went to our first 2 places and cleaned them with no issues.  Well then we went to our 3rd and 4th house, and I started to have abdominal pain and cramping so I began to hunch.  I am now all curled up on the couch with my computer while watching some Netflix movies. 

     This is the hardest part of being a Crohn's Casualty; the inconsistency in my day to day lifestyle.  Here's to hoping that tomorrow is a better day, and that I can make it through the 5 big houses that we have to clean.

 

COMPLETELY UNRELATED... to Crohn's this past weekend I spent in Oneonta thanks to my wonderful boyfriend and friends.  They surprised me with a weekend getaway for my birthday.  I had a great time visiting Fly Creek Cider Mill and picking up some bottles of the Raspberry-Apple Hard Cider, it's my absolute favorite, and living so far away I can't exactly get a bottle at any point in time so we bought 3.  We went to dinner at The Depot, which makes wings with a garbage sauce (all their sauces combine) it's so good so I ate them even though the fried food didn't feel so hot digesting.  See Seth and I have been eating rather healthy lately because it's just better for us.  Then we finished our night by bowling, and I won the first game with a score of 145, and almost placed last the 2nd game when I bowled a 102.  I was just proud to break 100 both times.  We stayed at a Holiday Inn Express, and it was very nice.  Being a housekeeper I had to inspect the room before I said "OK we can stay."  Since the last place I stayed was anything but sanitary looking this was a breath of fresh air.  We very much enjoyed our weekend, and I'm so glad I got to see my Oneonta friends since it seems to be that we only see each other 2x a year.  That's the sad part about growing up and moving away you only have contact via phone, facebook, or when they read my blog.  I'm just grateful that I have some friends left in NY with me even though they are 3.5 hours away instead of running away to Florida like my BFF.  Luckily it's almost her wedding day so I will see her too.  Well I've ranted enough about my birthday and friends, and I'll continue my Crohn's life later.  I hope everyone has a great start to April and there week.  I'm placing a photo from my birthday of my boyfriend and I.  I was rather festive :)

 

Remicade

I'm going to start this blog post by talking about Remicade.  What it is, How it works, How it worked for me in the beginning, and How it works for me now.  Then I am going to jump ahead to today and talk about the doctor appointment I just returned home from.  I know that the 2nd part of my story will not make a ton of sense until I finish updating you on my background with Crohn's, but please bare with me.

     REMICADE(Infliximab), is a biologic medicine that is administered via Infusion.  It's a 2-3 hour process of sitting in a chair with an IV in your arm while sitting in a chair.  For anyone who is going for treatment I highly recommend bringing something to do to occupy your time, and to bring a snack because you will get hungry.  Before I could take Remicade I had to have prior approval from my insurance company, and I had to be tested for Tuberculosis.  Once I was cleared I began the first 3 treatments, which are infusions of smaller dosages working the way up to the dosage that I would receive.  Remicade is unique because it allows the doctor to prescribe a specific dosage to a person depending on weight, height, and severity.  The first infusion takes place, and as long as there is no adverse reaction then 4 weeks later you return and have a 2nd dosage.  After the 2nd dosage you return in 8 weeks and have your 3rd infusion, and for most people the infusion will take place every 8 weeks.  I was on an 8 week regiment for about 9 months, and then I began to have a flare up around week 6 and a half so we changed my infusions to every 6 weeks.  I have been on a 6 week infusion ever since.  So what does Remicade do?  It provides fast symptom relief that may take place in as little as 2 weeks, it may help people with Crohn's remain free from symptoms or have very few symptoms, it may allow healing of the damage to your intestinal lining, it may close or reduce fistulas(tunnels from the intestines to the skin or nearby organs), and it allows many people to reduce or eliminate steroid use.  Steroids are used to prevent flare-ups, and mine were prescribed with an antibiotic until I started Remicade.  Remicade allowed me to reduce my medication list by a tremendous amount.  (Read more on Remicade www.remicade.com)

     Before I started Remicade I was taking 13-16 pills a day of prescribed medicine.  After Remicade I reduced my pill number down to 2-4 pills a day.  This is a HUGE deal for me because I suck at taking pills.  I have the worst time swallowing pills.  It's like my throat knows that I'm about to take my medicine in the morning and closes up completely on me. No one can look at me while I'm taking my medicine because I can't handle the pressure.  I need about 5 minutes per pill no matter the size.  It's absolutely ridiculous, but that's my life.

So when I first started Remicade I felt amazing.  I literally walked out of my infusion feeling 110% better.  I didn't have a flare up for the 6-8 week period.  I was eating well, and gaining weight.  Before I started Remicade I weighed 99LBS.  That's right 99LBS!!! I am 5'6" and a healthy weight is 125-130LBS.  SO 99 was incredibly scary.

Notice Collar Bone, and tiny arms.  This is what 99 looks like.

To date I have had 4 infusions of Remicade since my surgery...which I will get to soon and discuss.  But ever since I have gone back on Remicade after a 4 month hiatus I have been experiencing issues.  I get my infusion and I feel great for the first 10-14 days, and then I develop a fever, canker sores, abdominal pain, and loss of appetite for 7 days.  My symptoms begin to go away and I'm usually just left with healing mouth sores after that, but I return to feeling great until my next infusion.  This is my new cycle, and a nurse at our local hospital called it my "new normal", but here's the issue no one wants to feel like absolute garbage for 7 days out of a 6 week period.  So I have talked with gastro. and he is sending me to another specialist, and going to be conducting more tests to find out if the Remicade isn't efficent or if I am developing an allergic reaction to Remicade.  Has anyone had experience of this?  Cause my gastro is as stumped as I am.  SO until my next infusion because I just finished my 7 day cycle of being sick my doctor prescribed Pentasa.  For anyone who doesn't know this is a horse pill, and I am going to have serious issues swallowing it but if it helps me to not get sick then bring it on.  I'm hoping that maybe my body is just weird and as my doctor said I'm not acting like a "normal crohn's patient."  So hopefully we will get actual answers so I can get my body under control, and live a semi-normal life.  I know this is a very long post, but I hope it's been useful or opens up about me a tad bit more.



Continuation of my diagnosis

So in February of 2011 I met with my Gastroenterologist. He's a great doctor, but looked at me and stated that I'd be pretty with more weight. I stifled a laugh as the nurse told him that wasn't the proper thing to say. He then back tracked and told me I was pretty, but he wants to make me healthy. Which I will admit was a nice thing to hear because being sick and not having proper treatment, for a lack of better words, sucks.

We checked my symptoms:

√ Mouth Sores

√ Loss of appeitite

√ Weight loss

√ Abdominal Pain

√Diarrhea

√ Blood in stool

√ Swollen Joints

So he ordered me to have a colonoscopy, which would let him know for sure that I did indeed have Crohn's.

Crohn's disease is named after Dr. Burrill B. Crohn, who first described the disease in 1932.  Crohn’s disease belongs to a group of conditions known as Inflammatory Bowel Diseases (IBD). Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract.  Crohn’s most commonly affects the end of the small bowel (the ileum) and the beginning of the colon, but it may affect any part of the gastrointestinal (GI) tract, from the mouth to the anus.  All of this is according to the Crohn's and Colitis Foundation of America.

Once diagnosed with Crohn's we started the treatment process.

The following link is for the type of medications that are used for treatment. http://www.ccfa.org/what-are-crohns-and-colitis/what-is-crohns-disease/crohns-medication.html  I have been on every type, and the one I am currently on is a Biologic Therapy.  The other medicines couldn't contain my flare-ups, and my gastro dr. recognized this immediately, and placed me on the biologic called Remicade.  I have been on this medicine for over a year, and found when I started the medicine it worked amazingly.  I will write my next post strictly on Remicade, and the benefits I had, and my "new normal" that happens now.  Hope this is helpful, and any questions just ask.



 

Take 2

So I had started this blog before, but the email I created was hacked.  I have no access to that account anymore, which means I can't delete the blog.  So here is the same 1st post I made under the Blog title of My Crohn's Life.  This will still be a blog about my Crohn's, life with, and other things about me.
     So let's start at the beginning...I started to take notice that my body wasn't functioning properly with about 2 months left of my sophomore year, but didn't think anything of it. Just thought it had to do with my college life (class, work, homework, stress, partying, & campus food). So I ignored my body, and dealt with the weight loss, the loss of my period, loss of appetite at times, the fevers, and stomach pain. The symptoms seemed to come and go (exception my period: I didn't have a period for 2 years)
In 2010-2011 I was a senior in college, and worked a full time job at a major hardware department store. I was having consistent stomach pain that started when I awoke, and varied on the pain scale all day long. I use to stand at my register hunched over because it felt better than standing up straight. I used to get asked all the time if I was ok, and I'd just respond yes I'll be ok. I was losing weight even though I was eating enough to feed a small family. Food has never been an issue to me....I love to eat almost anything. I finally lost enough weight where I became concerned, and scheduled a doctor appointment back home. I went to school 3.5 hours away from my hometown so that was rather hard to do. So I went to my doctors in February of 2011 and found out I weighed 103lbs. My nurse preceeded to ask me in the nicest way possible if I was eating properly or at all. I looked at her in astonishment and stated that I LOVE FOOD...food just didn't love me. I then waited for my doctor, and when he came in I was able to make a specific request for blood work specifically to look for Celiac or Crohn's disease.
The waiting game was torture. I had to wait 2 weeks for a phone call with my lab results, and all I kept thinking about was I hope it's not Celiac because I can barely afford everything as is. A diet restriction would of made it impossible for me to pay all my bills while buying gluten free food. Celiac is a gluten intolerance, which means that a person's body cannot digest gluten which is primarily found in bread, pasta, and many other foods containing wheat, barley or rye. On February 24, 2011, I was called and informed that my Celiac results came back negative, but the rest of my lab work was abnormal for my age so they referred me to a gastroenterologist.
I'm sorry this post is so long. I will write more about the 1st time I met my gastro Dr. next time. I'm going to try and steady my way into this so as that I don't get bored or bore you. I have 2 years of information to catch you up on, and then continue with present day. Once all the background information has been given about me and my crohn's then my blog will consist of my current crohn's state, recipes, life stories, etc. Hope you'll follow me, and maybe find this to be slightly helpful!