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My Crohn's Life

What is this nonsense?

A majority of the people I know do not have Crohn’s Disease.  Many people with Crohn’s express that there should be no whining or complaining because those with cancer have life much worse.  I am now in a category that uses those diagnosed with cancer as a means of comparison when considering quality of life.

I intend on using this blog as a means of expressing some of my thoughts regarding my life with Crohn’s.  It has become the one thing in my life that everything else revolves around.  My favorite part of having Crohn’s has been hearing people explain to me how their (insert family, friend, neighbor) deals with Crohn’s.  For example, I once had someone become upset with me when I could not accept a slice of pie.  This person insisted that she knew I could eat this specific item because her boss had Crohn’s and he had eaten it and he was fine.  Not only did I not get to eat pie, I managed to offend a friend by just existing.  Unfortunately, this kind of thing happens and I am not going to expect anyone to understand Crohn’s.  I am not even able to understand it.  One day I can eat something and the next day I might eat it and spend the afternoon in the restroom.

I am promising myself that I will document my experiences with Crohn’s.  I hope this will not only be an outlet for myself but maybe someone will stumble in and learn something from my ramblings.

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I was going to add a pic but I don’t feel like it.

Opium Tincture was prescribed and my life was getting back to normal. Then my Entyio infusion happened and it was two weeks of misery. I really just don’t want to take it anymore. I have not liked this shit since Infusion #1 and I keep giving it time. I’m also trying to trust this doctor but I am beginning to wonder how much he makes to prescribe this rotten shit.

That is all.

It’s Been Awhile

I’ve stopped taking my Colestipol and Lomotil most of the time. Once in awhile, I am not able to manage things and I will take one of each. Sometimes I double-up on Lomotil. I do not even take the Opium Tincture unless I have to work or leave the house. My symptoms haven’t gotten any better. I am just numb. I’ve leveled out on the weight gain since I’ve stopped taking medications but I also kind of stopped eating most of the time. I eat dinner and that is my one meal per day. I’ve also started ignoring my symptoms. My sister is dealing with a high risk pregnancy and was unable to paint her deck. So I took my Opium Tincture and painted her deck. By the time I came home I was bloated, my legs and feel swollen and I was too tired to even eat an entire meal. My stomach pain was incredible but that just helps me go to sleep. I was blessed with the ability to sleep when things hurt. I have never realized how fortunate I am to have this ability. Even if the pain is sharp and wakes me, I will soon go back out so I can avoid dealing with it. It seems to be working as I am able to get through a 10-12 hour day at work now. Block.it.out. I just kind of repeat that to myself until I stop feeling it. I even cleaned up my backyard.

On an unrelated note, my fish have died. I brought the little buggers in for the winter so they would not suffer a harsh winter in a yard pond. All did very well until last week. Suddenly, four of the six died. Three days later, a fifth died. The last fish appears to be well but I am frustrated with this.

Instead of focusing on frustrating things, I immediately begin thinking of my accomplishments. I assembled the canopy for my backyard. I cut the ornamental grasses and burned them. I cleaned up the backyard and prepared it for the first cutting once Mother Nature decides what season it is. Seriously, 77 one day and 32 the next–it’s unreal.

Oh and my car has hail damage. I am hoping insurance can cover repairs and it is n’t totaled but if it is, I’ll likely owe on it as I haven’t owned the car long enough to cover depreciation and insurance covers the value of the car, not the loan.

Toxic

I am toxic to myself today. I first noticed it last week. I promised myself to document my journey with Crohn’s so I could recognize the good and the bad. I thought it would help me get through the rough patches and realize that things do get better. Even if I just used this to vent, I would be letting it go by writing about it instead of keeping things bottled up. Becoming toxic was not part of the plan.

Last week, hunger was making me miserable. Feeling my stomach twist and turn was just as miserable as if I would just give in and eat real food. After spending time doing all sorts of things to distract myself, I decided to eat a safe food that I was able to eat in the hospital after not eating for 14 days. Scrambling an egg seemed to take forever. I ate it. Immediately, my stomach began a full rage and I couldn’t swallow the third bite. I tried but I gagged. Moments later I was vomiting the few bites of scrambled egg I had eaten. After this happens, I usually feel sad and defeated. Not this time. This time was different as I felt empty and satisfied. I am dipping my toes into a danger zone and I know it.

Sometimes I wonder why I keep trying. Even if I manage to overcome the actual Crohn’s symptoms, the disordered eating patterns that it is triggering will take me down. Oh well, hopefully I can provide a source of entertainment to those with dark humor that can handle watching me self-destruct.

Just Nothing

I don’t have a title. I have 0% trust in doctors today. I visited my primary care doctor and she suggested that I have anxiety and depression. The nurse provided me with a questionnaire and I circled some things. Do I feel like my family would be better off without me? Yes. As a matter of fact, my family would financially be better off without me. Emotionally, not at first but eventually they would probably be better not having to worry about eating in front of me and worrying about all of my health issues. This doesn’t just impact me-my entire family feels the impact of Crohn’s and short gut – whatever that is.

Anyway, moving on. I lied on the questionnaire and I advised my doctor I did so. I stated it would be best not to treat this as it would likely require medications that also had side effects that would also need treating. I am really doubting I will go to my next infusion. I told my Dr. I would give Entyvio a fair chance but I may have lied. Maybe doctors should trust me. It has made me worse. I now take this Opium Tincture that seems to help control diarrhea but I want to be finished with treating my Crohn’s.

Also, I’ve gained more weight. How I manage to do that when I don’t really eat food I still am wondering. Whatever at this point. If I am going to gain weight, I’d like to enjoy the foods that cause such things. So my unhealthy new habit had started. I put on clothes and they did not fit. I actually skipped my meds that day and called in to work. I had diarrhea all day and I drank just enough to keep me from being lightheaded. The next day I fit into my clothes and I worked. I took my meds and limited my water intake. I realize that this is not healthy but if I eat a healthy diet, my Crohns is not manageable. If I stick to liquids and baby food, I gain weight even though I’m eating fewer calories than I am using. So at this point, I don’t care if I’m jacking around my metabolism. I’d say it is very likely that it is already fouled up anyway.

Lymph Nodes

Maybe this is just not my area of expertise but I feel a bit foolish.  I was lying on my stomach trying to sleep and I could not get comfortable.  I had a pain that could not quite be described as stomach pain.  It was more like inner-thigh pain.  I was able to brush it off and eventually fall asleep.  The next day, more of this pain.  I was a bit embarrassed because I could not even think of the word to describe this area.  How might I call my primary care physician and ask about a place on my body that I am unable to name?

My brain works overtime in moments like these.  Before I know it, I have decided this is not a real pain because there are no actual organs where I am feeling the pain.  How do I know there are no organs?  My logic in this moment is that if there were organs in this area, it would be impossible for women to have “thigh gaps” because this would mean that they were missing the organ that would normally be found in this area.  This kind of logic tells me that it is bothering me more than it should and I am not going to be able to ignore it much longer.

As much I am do not want to, I look up this area of the body on a popular search engine.  Within moments, I am convinced I have cancer.  It appears my lymph nodes are swollen.  I also feel like a complete fool.  Lymph nodes in the throat area?  Yes.  I was aware there were hundreds in the body but evidently, I believed these were all located in the throat. Brilliant, huh?  Even more brilliant was worrying myself to the point I called my primary care physician’s office anonymously and claimed to not have insurance and looking for a doctor.  After being told that I could not be seen without insurance, I asked if I should go to the emergency rooms.  I was given information to watch for.  Pathetic, I know.  I do not care.  Judge away.

So anyway, it’s been a few days and the pain is getting pretty intense.  I have an infusion tomorrow and a GI specialist appointment next week.  I will see what happens.  I plan on making an early morning appointment with my primary care physician next week as well.  Someone will hopefully be able to tell me why I am suddenly painfully aware of these lymph nodes.

Minor Details

That picture was taken seven months after I was released from the hospital. I had been trying to take a picture of an albino hummingbird for weeks. I never did get a picture of the albino hummingbird but managed to get some really good pictures of other things happening in the yard. When I initially took this picture, I had not even realized there was a creature included.

This morning I woke up in quite a mood. I decided to reflect on how I have been feeling recently. How do I really feel? I feel like murder. This is not to be confused with feeling like murdering as I definitely do not feel like harming anyone nor would I have the energy. I just feel like what I imagine the act of murder would feel like. Anger, Sadness, Regret, Remorse, Rage, Disgust, Terror, Fear, and Contempt. Watching documentaries in the middle of the night sparked this thought. I wonder how someone can physically harm someone? I am unable. I had an opossum family living in my barn and I couldn’t even bring myself to allow someone else to harm them.

Most of my front yard contains plants that feed hummingbirds and bees. When I think of what a peaceful life I attempt to live I often wonder why I have the medical issues I do. I could choose to believe there is no method to this madness but if I ever believe there is no reason or lesson to be learned, I will also have no reason to continue fighting to maintain a somewhat decent life. I choose to continue trying to understand as I am sure the answer is right in front of me just as the critter in flower was.

Remember When…

I didn’t have a disease that ruled my life. Sometimes I feel like my spirit has been squashed. I used to be full of life and now when I am not at work, I am in a bathroom or sleeping. I do not enjoy anything anymore. Lying has never been something I would consider but now I have joined the masses. How am I? Fine. How was my weekend? Great. And for those that sometimes see through my bullshit…Are you feeling okay today? Fabulous. Nobody wants to hear it.

I remember a time when I did not gain weight because my body thinks it is starving or some bullshit. I remember a time when I didn’t spend 13 months in a constant flare. I remember a time when I didn’t cry because I wasn’t sad. I remember a time when my wrists and other joints did not feel like they might explode.

It sounds insane but I’d give almost anything to go back to the days immediately after my bowel resection. I had inflammation but no symptoms other than diarrhea. I didn’t take any medication other than Colestipol and Lomotil. That was before MTX, Humira, Entyvio, D3, B12 injection, Calcium and osteopenia. I know there are others that take other meds but I am not comparing myself to others-just remembering a time before my life was consumed with everything Crohns and short gut.

I think the short gut or whatever may be worse than Crohn’s. I don’t know anymore. What I do know is that I sat in my car and cried like a maniac when I left Doctor #5’s today. That was after I refused labs with a reason that if ONE more thing happens I will lose my shit so I would rather not know. I even stated that I would know eventually how things were anyway…and if my liver was angry, I’d turn yellow.

Ugh. Dealing with my nonsense today must have been challenging but honestly, I am at the end and not quite sure where to go from here.

Pickled Beets?

I am 4 days away from the date that resulted in a loss of 4-5 feet of intestines. For the last month or so, I’ve been eating a jar or two of pickled beets per week. Sometimes, I eat a jar in one day. WHY?

I do not eat breakfast. I have water. I do not eat lunch during the week. I have water. If I feel like I will not survive, I will go to McDonald’s and get an oatmeal for lunch. That may happen once a month. During the week when I get home from work I have dinner with my family if my guts feel tame. If not, I have a banana, peanut butter and rice milk smoothie. I drink a lot of smoothies because my guts have been angry for 361 days.

On Saturday and Sunday, I have a cup of coffee. I know this angers the Crohn’s beast but I am miserable anyway. I sometimes will eat normal food too because I know I can stay in the house the entire weekend. It seems like my food intake combined with vitamin supplement would be enough but for some wicked reason, I crave pickled beets. Not only do I eat the beets, I drink the juice like it’s my job.

If I liked beets I would probably not write about it. What puzzles me most is that I do not like beets. I usually cough after drinking the juice because it takes my breath away. However, I feel like it is something I need to do. If I ignore this craving I can’t stop thinking about how it would just go away if I would eat the damn beets.

So gross.

Knees and Elbows

The skin on my elbows and knees is dry and cracking. It is very thick and the only relief is coconut oil. When I showed Doctor #5, he responded by telling me that one of his other patients also had this reaction to Entyvio. I let him know that any soaps and lotions make my skin feel like it is on fire. The scaly grossness goes away but the pic above is as good as it gets.

I’ve always believed that if life is too hard or a specific thing in life is too difficult, it is probably wrong. This does not mean that I do not like a challenge. I most certainly do. However, when I am doing something and it seems like there there is brick wall after brick wall, I generally change my course. I was not getting what I needed in life until I changed my course and returned to college. After getting my degree, I found a job I loved. After years of dedicating hours upon hours and things continued to get more challenging each day, I changed careers and again was happy and satisfied and things in life stopped falling apart. This just seems to be the way life works. As silly as it may sound, I believe I need to stay fluid enough to roll with the tides in life. There is no one career or place that will ever be a final draft for me.

With all that being stated, I feel like I am hitting brick wall after brick wall with Crohn’s. I question if I should receive any treatment. I wonder if removing the amalgam fillings caused this. I wonder if anyone will ever look into what caused the mass or “tumor” in my intestines. I wonder if there is a diet change or herbal remedy. I wonder if the well water in my home has contributed. I did not make any New Year resolutions. I did make a bucket list though.

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