Looking for the humor in everything…even Crohns Disease

Now all of you who know me know I love to laugh. I love humor of all kinds and I pride myself on finding humor in just about anything. You could almost say that laughing keeps me going. I do have to be careful though. I can be very sarcastic and will crack a joke to or at the expense of just about anyone, even myself. (Not to be hurtful, just to be funny.) This has gotten me into trouble on more than one occasion. I don’t really have a very good sensitivity meter. If there is an opening for a cut up I take it. Most people are good sports and crack back at me and I love that. There is nothing better than a battle of wits. Especially when I win (wink, wink). You could say that I am a product of my environment. My entire family and most of my friends are just like me. We love to spar with each other. But then there are a few people who will look at me all hurt like I just killed their puppy. I have to stop and make a mental note…”Can’t have fun with this person, can’t be myself” (no offense to them of course. Maybe I’m really just not that funny…Nah it can’t be that hahaha). I had one women say to me (after I made what I thought was a very funny comment) “wow that’s kind of mean, what kind of movies have you been watching”. That story deserves its own blog post lol. Well back to my point… There are days that I can even laugh about my crohns disease. This just proves that I can make fun of myself and my situation. Again, I think it’s a family thing. You can be sure that no matter what the holiday or family function is we will end up laughing at ourselves and the conversation almost always leads to bathroom humor. I myself have many hysterical public bathroom stories. Let me just say that if there is a crazy person in the building they will ultimately follow me into the ladies room. I even have some good mens room stories!!! Ah another blog idea hahaha. So now let me just tell you what I did the other day. Some of you may think this funny, others – gross, and still others may question my insanity for even discussing it. But then again how can you blog about crohns without being funny, gross, and insane??? Lol One of the things on my recent “to do list” from my doctor was a stool c-diff. I purposely left it off my previous blog because I felt it deserved a blog of its very own. So a couple days ago when I went to have all the other blood work done she gave me my handy dandy poop kit. You know



the cute little “hat” to poop in



container with spoon to scoop in



and zip lock bag to deliver in.

So the next day I’m being the good little Crohns patient again but I’m looking at this stuff and I start laughing and thinking “REALLY!”. I mean come on we have put men on the moon and transplanted vital organs from one human being to another and you want ME to scoop my poop into a little jar and then deliver it to you so that you can test it??? Haven’t I been through enough embarrassment??? I want to know right now who is the sadistic bastard that comes up with all these horrible things that we crohnies have to do??? I can just picture him sitting at a nice big desk in a fancy shamancy office with his own private bathroom thinking of ways to torture us. Lets make them drink lots of really nasty stuff really fast and then x-ray them. Oh and don’t let them eat or drink anything past midnight the night before. Yes, yes, actually make them drink clear liquids the day before and have them drink toxic waste and gallons of water so that I don’t have to see any poop on the x-ray. Then in a few weeks we can have them do all that again but this time we’ll put the really gross stuff in the other end and then x-ray them. (Knock at the door) Dr. heres a package for you. I didn’t order this…what am I going to do with this long flexible tube…….I know….. Well its funny in a humiliating sort of way!

Love, laugh, and always know where the nearest bathroom is

Crohns confession #1

I am a liar. Yes a liar, there I said it. But don’t judge me too fast. It’s not that I want to lie it’s just become a habit and even though I have confessed I know I will continue to do it over and over and over again. It’s always the same lie too. It always starts with the same question and always ends with the same answer.

The question: How are you?

The (lie) answer: I’m Fine!

Yes I always say I’m fine even when I’m not (which is just about always). Why do I say I’m fine even when I’m not? Come on now really. EVERYONE asks “How are you” but how many of them really truly want to know??? Your family and really good friends, oh and your doctor really want to know but everyone else….I don’t think so. It has been my experience that all those other people use the phrase “How are you” as often as hello. After all it is expected. You see someone you know and you say “Hello, how are you” or “Hi, how have you been” and you reply “I’m fine” even when you’re not. I ask people all the time “how are you” and I would be happy to hear the truth. I’ve tried it though. People have asked and I have answered truthfully…..well I’m having a lot of pain today or this fatigue is really hard to deal with… Sometimes they are polite and ask what is causing the pain/fatigue and I start to tell them about my Crohns and I always know the exact moment where I’ve said too much. Their face starts to contort into this odd, eww, too much information expression. Their eyes glass over and you can almost hear them thinking “I really didn’t want to know this much about you”. So like a good little crohnie I quickly change the subject to something more comfortable to the “ask but don’t really want to hear it people”. So are you a liar too? Well tell me the truth because I really want to know…. How are you? :)

Love, laugh, and always know where the nearest bathroom is

Good news for B and his high school baseball program

First a little history….our baseball field is the worst high school field in the area, possibly the entire state. It is basically a slope a sloppy slope. You are looking uphill if you stand at home plate and look into the outfield. In order to make it level the infield needs to be raised 5 feet. So when it rains all the water drains down and floods the entire infield and I use the term infield lightly. We really don’t even have a pitchers mound anymore. Sure they add a little dirt at the beginning of the season but then the rain, rain, rain comes down, down, down and, well you get the point. We actually dig a little drench at third base to drain that puddle. All the other puddles, well they are more challenging. This field is more suited for ducks then baseball players. A small amount of rain makes our field unplayable for days. A lot of rain, well you can count on us playing the next five games away. We were only able to play 2 ½ games on our field last season. It is very frustrating to never have home field advantage.

But Now……

After a year of questions and answers and architectural plans and bids and more questions and answers and more bids and more questions and answers and one very annoying school board member who would vote no to us being allowed to breathe, our school board voted 6-2 in favor of the funding for a new multi-surface baseball field. Work on the field will begin following the 2010 baseball season and will be completed for the 2011 season (B’s senior year woo hoo). Work includes raising the field 5 feet with an artificial turf infield and natural turf outfield. Above ground dugouts are also included in the project. This is the first of four phases of improvement. The other three phases, if approved, will follow in 2012-2014.
I will be documenting these improvements for our baseball media guide so I will post some pictures as we go along. Yippee

Love, laugh, and always know where the nearest bathroom is

A Good Little Crohns Patient

I was a good little crohns patient and I went to my doctors appointment yesterday and here is my reward:

To be scheduled asap:

Liver Doctor: just to follow up to make sure my liver is staying healthy

Rheumatoid Doctor: joint pain

Blood work (I hate needles): Complete Blood Count w Differential, Platelet Count, Liver Function Test, Lipase/Amylase (to check the pancreas), ANA Antinuclear Antibody test, Anti DNA Double Strength, Anti Histone

Annual PPD Test

H1N1 vaccine

Dexa Scan: to check bone density

AND Everyone’s favorite……..A Colonoscopy Woo Hoo

Some of the blood work and the colonoscopy are to determine if the cimzia is helping and to figure out if the cimzia is causing all the joint pain (which has been very bad for about a month now). One option is to reload the cimzia to see if that will kick it into gear. Or switch to humira (more needles, whatever happened to the good old horse pill). He suspects however that this type of drug just doesn’t like me hahaha. I have made one decision this year. I am going to focus on a healthier diet and maybe add some natural remedies (nothing with needles). This will not be as easy as it sounds….I have very little willpower when it comes to staying away from bad foods that I love. Then after a quick poke and prod (nothing internal thankfully) he sent me on my way with the usual advice…..No high dose Tylenol and limit alcohol….darn.

Now this wasn’t the end of my fun. We decided to go have a late breakfast at a popular albeit dingy greasy spoon establishment downtown. (If Gordon Ramsay saw this place he would insist it be burned to the ground no matter how good business is.) I had scrambled eggs, hash browns, and toast. Yea I know so much for that healthier diet. Let me just say that the rest of my day was spent in or very close to a small room with lots of ceramic tile. I’m thinking that instead of drinking that disgusting stuff to prep for my next colonoscopy I will just go eat at J#@$%&......

Love, laugh, and always know where the nearest bathroom is

Envy

Envy, jealousy, desire, wish for, want, longing, yearning, need……….what could inspire all these feelings in me? I’m thinking of someone, someone I know well (whose name I shall change to protect him/her). I will call him/her Isaac. He/she is young but that’s not why. He/she is handsome but that’s not why. He/she is athletic but that’s not why. He/she has a beautiful smile but that’s not why. He/she is funny but that’s not why. He/she almost never has an urgency to go to the bathroom!!! Yes it’s true that is what I envy. He/she rarely concerns himself/herself with the when or where. It’s a given that he/she will go maybe once or twice a day. He/she often has the freedom to choose where and when to go. “Fiddle-dee-dee I have to go but I will wait till I get home” hahaha is that really possible. I don’t remember??? And even after waiting hours till he/she is home there still is no great urgency. Isaac slowly casually enters the house, walking upstairs. So little urgency in fact that Sir Isaac often takes his/her good old time, allowing gravity to do all the work. But wait….what’s that noise….someone frantically banging on the door….HURRY UP I HAVE TO GO NOW…. Hahaha. I’m sure all of you can guess who the person is banging on the door. Some of you may even know who Isaac is but please don’t give his/her identity away or he/she may not hurry up the next time someone is frantically banging on the door…….

Love, laugh, and always know where the nearest bathroom is (unless you’re an Isaac then just love, laugh, and hurry up :)

Which Brings Me to Now....

I lost a lot of blood during that c-section and I had a much harder time recovering. I began having flare symptoms and by the time I went to my 2 week check up I had lost all the weight I had gained during my pregnancy. Within a few months things settled down and I did very well just dealing with the fistula and the many trips to the bathroom. I continued to see my GI doctor regularly and he continued to tell me the diarrhea was due to the short gut. I continued to take antibiotics for the fistula and he was sure there was nothing more he could do for it. (At about this time that little voice in my head was saying “you need a new GI doctor”, but that other little voice was saying “you know a new doctor is going to want to put you through all those awful pre prep, contrast gulping, scope torturing tests”.) Then somewhere around 2000 the antibiotics stopped working and the fistula got worse. Another opening formed and it was very painful all the time. Still he said there was nothing he could do??? When it started to look like a third opening was starting to form he said I should just go see a surgeon. I went to the Dr. who did my resection and he recommended a specialist. I went to the specialist and he was wonderful. Not only did he feel he could help me he also felt that my current GI doctor wasn’t being helpful enough. He was sure that my crohns was still active (not short gut) and he recommend a new GI doctor. Oh he also scheduled surgery for me. He wasn’t able to completely get rid of the fistula because he could not find where in the intestine it was originating from so he placed C-tons in the fistula to keep it open and draining. This made life much more comfortable. I went to see the new GI doctor and he was wonderful also and yes he put me through all the horrible tests. He put me on Pentassa for a couple years and that worked well but he still wanted to try to get me into complete remission. So he put me on Remicade too for a year and it was working very well for me. Even the fistula was healing. Of course he also did lots of blood work and noticed that my liver levels were just slightly elevated. I told him they have always been slightly elevated. My former doctor said it was probably due to the crohns disease. My new doc said that was possible but we should find out for sure. I had already told him about the liver infection and blood transfusions years ago. More blood work confirmed his suspicions. I had Hep C from the blood transfusions…..for a long time. More blood work and a liver biopsy showed I had stage 3 inflammation and scaring (there are 4 stages, 4 being the worst). The length of treatment for Hep C is determined by another blood test, you may need to be treated for 6 months or a year. Of course I had to be treated for a year. Unfortunately I could not be on the Remicade at the same time so I had to go off of it. Pills every day and an injection once a week (more needles….I hate needles). It is a difficult treatment. My doctor told me that I would have a “poor quality of life” for a year but if it was successful the Hep C would be gone and the liver would regenerate itself. I went for it and he wasn’t kidding when he said a poor quality of life. It made me feel like I had the flu for a year. Very weak, your body aches all over (especially the joints) hair falling out, insomnia, and depression among other things but I made it through the year and the Hep C is gone. My liver enzymes are fine and according to the hepatologist my liver is healthy again. So now back to treating the crohns. Now the big question is….try to go back on the remicade or try something else??? Apparently once you go off of remicade your body can produce antibodies to it which 1. it will no longer help you and 2. puts you at a higher risk for a bad reaction to it. We decided to try. As a precaution I was pre-medicated with prednisone and had to take Benadryl an hour before the infusion. We tried about 4 infusions but it just wasn’t helping enough and it was giving me severe joint pain (very unusual because remicade usually helps the joints) so he didn’t want to risk increasing the dosage. No more remicade for me. Next up Cimzia which I started about 6 months ago. Did I mention that I hate needles??? Two horrible burning stinging injections every four weeks. I hate them. It is like injecting thick syrup. At first I tried them in the abdomen but I had terrible bruising so now I inject into the thigh. (Well actually my wonderful sister in law does it for me.) No bruising but still horrible burning stinging freaking syrup and I am not sure if it’s even working. I do seem to have less pain but I still spend most of my time in the bathroom. I see my GI doctor tomorrow so I will see what he thinks.

Btw….believe it or not that was the long story short version hahaha

Love, laugh, and always know where the nearest bathroom is…..

The young adult years….

We all know how stress = flare up. At the age of 22 while planning my wedding I started having flare ups every couple months. During my first year of marriage there were no more breaks. I was in constant flare mode. My pc doctor at the time was useless. He just kept giving me antibiotics telling me it was probably colitis but would not run any tests. Now at first I was in no hurry to be tortured with the long list of diagnostic tests but after a few months I was begging for them and some help. Still he did nothing so I called a new Dr. in tears begging for an appointment asap. He agreed to see me the next day and immediately scheduled all the necessary tests and brought in a GI doc to consult. Diagnosis – crohns disease. I continued to see the GI doc who prescribed prednisone and sulfasalazine. Aside from the side effects the prednisone was wonderful. It took all my pain away, but once I started it I could not get off of it. Then 2 months later on December 30th I started having severe abdominal pain. My husband had to rush me to the hospital. I kept telling them that I had crohns disease but they kept looking for other causes. I had a fever and was vomiting. I was in so much pain I couldn’t stand to have anyone even touch my abdomen lightly. Eventually they basically put me in a room to let me die, and I almost did. The nurses never came back to check on me. If my husband hadn’t stayed with me that night I probably would have died. All I wanted to do was sleep but he kept waking me up to see if I was ok. He kept asking me why I was breathing so strangely and I kept saying just let me sleep. I have no memory of the following but according to my husband he pushed the button for the nurse but no one came. He went to go find a nurse and told them I was having trouble breathing. When they checked my vitals I had no blood pressure and my heart rate was 200. They rushed me to ICU and called my GI doctor in. I was in and out. Each time I woke up they had more tubes in me. At this point they were not giving me anything for the pain. They didn’t want to mask anything but I was completely out of it and I didn’t have a clue how bad things were. They would only let my husband and family come in for a few minutes at a time. I remember wondering ‘why does everyone look so sad’??? I’m glad I didn’t know. By this time it was Dec. 31st, New Years Eve. My GI doctor brought in a surgeon. The nurses told my husband to go and have some dinner and get some rest, they would call if anything changed. He no sooner walked through his Moms front door and the phone rang. They were rushing me to another hospital for surgery. When my husband got there the surgeon told him that he was concerned that my intestines had perforated. He had no idea what he would find when he opened me up and wasn’t sure if I would make it through the surgery. He was right. My intestines had perforated and my appendix had burst. My abdominal cavity was full of bile and poison that was causing damage to the rest of my intestines and my other organs. He had to remove 8 feet of my intestine (most of the large intestine), my appendix, and my right ovary and fallopian tube. Only about 6 inches of my intestine had damage from the crohns disease. The rest was damaged by the bile and poison they were soaking in for so many hours. I woke up in the surgical ICU and my husband wished me a Happy New Year. I was in the hospital for two weeks, then in and out of the hospital for the next four months with complications. During that time I developed a fistula, a very large abdominal abscess, pancreatitis, and a liver infection that years later turned out to be Hep C form the blood transfusions they gave me. Once I got over all the complications and gained some weight back (I had dropped down to below 70 lbs. Once I hit 70 I wouldn’t let them weigh me anymore. It was too depressing) it was clear that the resection was successful. I was able to get off the prednisone. No more pain and able to eat all the foods that use to bother me. I still had diarrhea and the fistula to deal with. (I spent years on Flagal and Cipro.) He deduced that the diarrhea was due to the amount of intestine that was removed (short gut syndrome???). I accepted this and muddled through. About a year later we decided to try to have a baby. My doctors assured me that it would not be a problem with only one ovary and fallopian tube. After a year of trying with no success I started a new kind of diagnostic testing. Everything seemed fine so my doctor decided to do exploratory surgery. I had so much scar tissue and adhesions that he was not able to use the laparoscope so he opened me up and removed as much as he could. Now he was sure I would be able to get pregnant. Four months later I went to see him and he looked at me and said “I can’t believe it, you are pregnant”. Apparently they didn’t think I would ever get pregnant but didn’t want to discourage me. Not only did I get pregnant but during those 9 months I was healthier then I had ever been and delivered (by C-section) a healthy 8lb 8oz baby boy. A true miracle to us. One year and six months later I was pregnant again. Another very healthy pregnancy except for the last couple of months. I was very uncomfortable anytime the baby would move. I delivered (by C-section again) a healthy 10lb 10oz baby boy. No that’s not a typo. He was 10lbs 10ozs (oh I guess I should mention that I am only 5’ (ok 4’ 11”) No wonder it hurt when he tried to move around. That and my doctor also discovered that I was full of adhesions again so after he got my baby out he removed as much as he could.

To be cont.
Love, laugh, and always know where the nearest bathroom is…..

Roberto Clemente

Crohns lives with me: The early years…

I am not really sure when my crohns disease started. I was the youngest of 6 children and very attached to my Mom. I never wanted to go anywhere without her. So going to school was a big adjustment. I did not want to go. My mom had to push me onto the school bus. I always felt sick in the morning and we went to a private school that required two busses. The first bus took us to a parking lot where we waited for the second bus to pick us up. Many mornings I got sick on the bus and was eventually sent home. I had no control over my stomach. I felt sick all the time, especially after eating. After second grade the new public school near our house opened and I started going there. I learned to ignore the pain and nausea for the most part. For years the doctors said I just had a nervous stomach and needed to relax.

Fast forward to my teenage years…. My mom was diagnosed with cancer and she passed away when I was 14. Shortly after that I really started having problems. I began having flare ups that would last weeks with pain, nausea, diarrhea, and bleeding. I would have one or two flare ups a year at first and then they became more frequent. More years of missdiagnosis: it’s just an intestinal bug, nervous stomach, gastritis…..

...to be cont.

Love, laugh, and always know where the nearest bathroom is

I Hate Needles

I had my horrible, burning, stinging, shots last night…I must seriously consider a new course of treatment. I’m not convinced that the pain of these injections is worth it when I’m not even sure how much they are helping. It seems to have reduced the pain but my trips to the bathroom are just as frequent as before. I plan to discuss this with my doctor on the 19th. I should have known better. What was I thinking agreeing to a treatment that involves needles??? My history with needles is not a good one. First of all I HATE them. I have always hated them and I always will. You would think by now that I would be oblivious to them. After all I have been tortured with them for 20 plus years now. Yes tortured….if there is a dull needle carrying incompetent nurse/doctor/iv team anywhere within a 5 mile radius of my veins they will flock to me and proceed to poke me repeatedly with no success while they mumble things like “your veins are so small”, “I’m so sorry”, “let me just try one more time”, leaving me bruised and bloodied. No I am not exaggerating. I am sure many unskilled phlebotomists have abandoned their lifelong dreams of drawing blood from anyone who is still breathing, or at least I hope so, because of me. Most of them just can’t seem to get the needle into the vein…hmm let me try that again…hmm the vein rolled…hmm let me go get someone else. Oops I went all the way through the vein…umm you may have some bruising. One phlebotomist “in training” not only could not get the needle in the vein she hit a nerve or something and I had pain and could hardly move my arm the rest of the day. During a Remicade infusion the nurse tried and tried and finally got the iv needle in but then my arm was getting all wet. Upon closer examination I noticed a large puddle of blood…ahhh excuse me I think something is wrong. “Oh my”!!! While I was in the hospital an iv nurse tried, tried, and tried again then went and got someone else. A few days later she showed up at my room, took one look at me, and went to get someone else. I laid there thinking “that’s right honey there’s no way you are coming anywhere near me with a needle”. Then there’s the visiting nurse who would to come and give me my horrible burning, stinging injections. At that time a visiting nurse was required because the medication had to be mixed before injected subcutaneously. Now you would think that since she didn’t have to insert the needle into a “small” vein this would be EASY hahaha. No this is me we are talking about. After all her visits I was left with at least one very large hematoma. Then there’s the time that she pinched up some skin, plunged the needle in and oops she went through to the other side of the pinched area. Yeah that’s going to leave a mark. Fortunately I now receive prefilled syringes that I can inject myself with but since I hate needles (did I mention that I hate needles) I can’t inject myself so my very wonderful and very gentle and very needle savvy sister in law comes to my house every four weeks and gives me my horrible, burning, stinging shots without maiming me. Yep not even a red mark is left behind. I love her…everyone should have a wonderful, gentle, needle savvy sister in law. Well that’s all for now.
Love, laugh, and always know where the nearest bathroom is

A quick Trip down memory lane

I saw an old picture of myself yesterday. I was about 12 years old. I couldn’t help thinking how great that age was. I know I didn’t think that at the time because I was your average 12 year old going through that awkward funny looking stage. But now I look at that picture and realize how simple life was then. My Mom was still living (she died 2 years later when I was 14). My oldest brother was still living (he was in the picture with me). Not only did I not have crohns disease I had no idea what it was so there was no abdominal pain, no running to the bathroom, no pills, no injections, no joint pain, and certainly no surgery. Heck there were hardly any trips to the doctor so no waiting rooms, no paper gowns, no awful torturous tests, no awful torturous preps for tests, and no health insurance woes…. So glad I have those memories of a simpler time and even though my journey has been a bumpy one I am very blessed. I have God, a wonderful spouse, the best two sons in the world, the greatest family and friends, love, laughter, and baseball too.
Love, laugh, and always know where the nearest bathroom is…

I have escaped

I have escaped from limbo….or so it seems! After spending way too much time on the phone, on hold, then with a semi-helpful person, on hold again, then with another semi-helpful person, on hold….well you get the idea, it appears that I am safely filed into the NEW pharmacy computer as patient in URGENT need of her horrible burning stinging medication. So urgent in fact that I will be receiving my prefilled syringes a day later then my scheduled injection day. I am promised that this is fine and I can have my horrible burning stinging injection a day late without any ill affect. Yippee
Love, laugh, and always know where the nearest bathroom is!

The following essay is worth the read. It helps healthy people to understand what it feels like to make choices every day based on your health. It also helps people with a chronic illness explain what it’s like to make choices every day based on your health.

www.butyoudontlooksick.com/the_spoon_theory

The author’s disease is very different then mine but I can relate to her and her daily choices, her spoons. I try very hard not to let this disease stop me from doing what I need/want to do. I definitely have to alter things and plan ahead depending on what I need/want to do on any given day. I would have to say baseball games are my biggest challenge for obvious reasons (no bathrooms) and way too important to me to miss. So I do what I’ve got to do and I’m thankful for the strength that God gives me to get through every day.

Disclaimer

Well that last one was bordering on serious and I prefer not to be serious….which makes me feel the need to post a disclaimer: I am not now nor have I ever been a professional or even an amateur writer. You will find an abundant lack of proper grammar and punctuation. I will try my best to form complete sentences but I do tend to ramble so you may find them very long and wonder where I am going (kind of how you must be feeling right now). You may also notice many spelling errors. These errors can be just plain typos because my brain tends to go faster than my fingers can handle. They can also be caused by years of a condition I like to refer to as spell check dependency. Then again many of them are a result of sporadic brain farts. I’ve been having more and more of these lately. I also blame these on the large amounts of prescription drugs and anesthesia that I have been exposed to over the past 20+ years.
Love, peace, and where is the nearest bathroom...

2010

2010….2010….2010….It just does not seem possible. Wasn’t it just yesterday that 2010 was the year portrayed in a cheesy sci-fi movie? You know the ones where we live in space like the jetsons or earth has turned to ruins. Yet here we are…yes we have made some great advances in technology and some are still trying to ruin us but here we are. Hmmm I guess it is not in Hollywood’s or government leaders hands. Thank you God for 2010 and keeping us in your hands.

01-01-10

*•♫♪ HAPPY♪♫•*¨•.¸¸.•**•♫♪ NEW♪♫•*¨•.¸¸.•*¨• YEAR♪♫•*¨*•.♪♫ Welcome 2O1O!!