Not Listening

For the first time, I have made the decision to not listen to my GI. I am not being disobedient because I am arrogant. I am being disobedient because I am tired. I need a break from medications, antibiotics and quite frankly ANYTHING Crohn's related. So I am doing it. I am taking a break for two weeks. I will still take my treatments but all this other crap is on HOLD.

Loading Dose Take Two

Being admitted in the hospital and having to get the resection surgery a month before it was scheduled was quite an ordeal.

It started as a visit to the ER. I was thinking the CT Scan my doctor ordered would show inflammation and I would probably be placed on steroids and sent home. Well, that would be too much like normal. My Ct Scan showed that the stricture and inflammation had gotten significantly worse and I was admitted on a Monday and my illeocecectomy was done Friday of that same week.

Recovery was going well until I contracted an infection four weeks after surgery. I would define it as a minor set back however while this was going on the diarrhea and bloody stool was not letting up. I was not able to take my regular treatment of Humira because of the infection.

So, here I am six weeks later, still a bit sore from surgery but finally able to take the Humira.
I begin with another loading dose. Four shots in ten minutes.
Lock and Load. . . . OUCH!!!!!

Negative

I haven't written much in this blog because I really don't know if I have anything positive to say.
I have tried to tell myself that I am strong and I can deal with this and I am capable and that I may be of help to someone else dealing with this but....
The downright truth is that I have no idea why I am suffering with this illness. I have no idea why the timing is now. I have no idea why it seems when I am finally at the top of the mountain I find that there is much more climbing to do.
It has been five months. In five months my life has changed and I am having trouble seeing any benefit in it.
That light at the end of the tunnel is looking mighty dim.
So right here, right now, I am embracing the negativity.
I HATE THIS FUCKING DISEASE AND HOW IT HAS CHANGED MY LIFE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I hate the pain, I hate the fatigue, I hate the nature of it, I hate the shitting, I hate the medication, I hate the surgeries, I hate it ALL!!!!!!!!!!!
Ahhhhhhhh, it felt so good to let that out!
Maybe tomorrow I can focus on something good in this.

Fatigue

One of the most difficult things for me to deal with right now is how debilitating this illness can be. I have a family at home and I enjoy cleaning my house while listening to music. I enjoy grocery shopping and cooking meals for my family. I enjoy taking long morning walks. I enjoy spending time with my extended family on Sunday's. These may seem like small pleasures to some but in my life these are some of the things I look forward to on a regular basis.

The fatigue that comes along with having Crohn's Disease has forced me to let go of these few things I enjoy so much. It is difficult to encourage myself and not feel like a complete failure as I sit in the bed, afraid to attempt walking down the stairs because I may become dizzy or faint or to have to lie down because my belly is in too much pain to do anything that requires focus on anything else except the pain. I have to send my five year old son away and tell him I need rest when actually I am just hurting so bad I am unable to make his sandwich or pour his drink.

On the days I feel well, I find I over do it. I am so happy to feel well, I try to get as much done as possible and sometimes wear myself out. I laugh and have to remember not to push so hard. I know it has only been a few months but it feels as if this entire year has been devoted to feeling this way.

I am supposed to be getting resection surgery. I am hoping that after I recover from the surgery I am able to get back to some form of normalcy. I hope I can get back to some form of activity and enjoyment.
For now I have to take joy in the very little I am able to do.

The Dilemma

I have been taking a biologic treatment made of human cells for a little over a month now. My doctor suspects that I am still flaring even on this treatment and she is going to do a colonoscopy to confirm her suspicions.
Here is the dilemma I am facing ...
The other treatment she is considering is another biologic, one that is made of live mouse cells. Now I know this may seem childish to some. Especially when my health is in jeopardy but, I just can not bring myself to take live mouse cells. I am deathly afraid of rodents. I can't even see a rodent on television without screaming and cringing. Just the thought of something of them being pumped into my body freaks me the hell out. I am hoping and praying with everything in me that the treatment that I am currently on is working because I am going to have a serious moment letting my doctor know that I can not bring myself to take the medication she is recommending.

Why Me? Why Now? Why This?

Yesterday, I cried. I cried for the first time since I was diagnosed almost two months ago. I think the reality of what is going on is finally starting to sink in. I think deep inside of me I felt like I didn't have the right to be upset about having Crohn's and everything seemed to be moving so fast that I didn't really allow myself to sit and absorb all of the changes that have occurred in the past few weeks.

I went from feeling wonderful about turning 40 and getting a physical and having my doctor say that I was in good health. It was my own personal birthday gift. I have been eating clean for three years now and  to hear that it has been working gave me this sense of accomplishment. My report showed no high blood pressure, no diabetes, my iron was only a little low but not dangerously low, I have good cholesterol levels. The only thing I needed to work on was getting to a healthy weight. I found the Paleo way of eating was working great for me. I lost 11 lbs in a month primarily juicing and eating lean meats, fruits, veggies and very little carbohydrates.

In a month, I was admitted in the hospital to find out I am not so healthy after all. The truth of the matter is that even though I was hospitalized for five days and told I have very severe Crohn's Disease, something inside of me just did not want to believe it. I did not want to believe all of what I was reading online and what the doctors were telling me about my prognosis. I seemed to think after feeling better, I should be okay, right? Oh the things we trick ourselves into believing.

Well, yesterday was my wake up call. I am still battling it out with Crohn's. Although I am determined to get better, I have to accept that it may take a long time. As I sat alone in my doctor's office, realizing that I have gone from a person who didn't even have Tylenol in her home to someone now dependent on six different medications just to get through the day without pain and the danger of a flare up, all of the emotion just filled up inside of me and I let the tears flow. Why? Why? Why? that is the only word my mind could think as I sobbed. It is the question heavy on my mind today. Why me? Why now? Why this?

Please Care For Me

One of the most important things to have when you are diagnosed with a chronic illness is a good support system. I believe that support system should include the physician who is treating you. Because I went to the hospital that was located near my home, I was seen and diagnosed by the GI (Gastroenterologist) on staff. He may very well be a good doctor and a fine man but my experience with him was less than satisfying. The first time I met this doctor, I was in so much pain I don't even remember meeting him. The second time he walked in my room it was to inform me that I needed to drink all of the poison (colonoscopy prep)  so that he could scope me. The third time, he was late for my procedure (we were literally in the procedure room waiting for him for 20 minutes and no one had a clue where he was). The fourth time, he walked in my room and said "You have Crohn's Disease. It is very very severe and you are going to need treatment right away. I am going to put you on Remicade Infusions as soon as you feel better and you will have to take that for the rest of your life." and then he left my room. My husband and I immediately got on the internet to try to get a clear understanding of what Crohn's Disease was. I called my brother who is a pharmacy doctor and he explained Remicade to me. I left the hospital and I felt good for eight days before I was sick again. When I called the office, I was told that my doctor was too busy doing procedures to call me back and that his nurse was unavailable. When I finally did see a partner in his practice, they just wanted me to go back into the hospital on pain medication until I was stabilized. I refused that suggestion. I felt thrown to the wind. I didn't trust this doctor. I was hurting and confused. I didn't feel important. I felt like another patient who was getting general answers to my very individual illness. I decided to find my own GI and began searching the internet for patient reviews of GI's in my area.

It took me approximately three weeks to find another GI to treat and support me. When I first met my current GI, she spent over an hour with my husband and me. She went over in detail my disease, she went through each medication and explained the benefits and the side effects also the disadvantages. She took the time to answer all of our questions and allowed me to decide my treatment out of my very limited options and her advice. She made sure to do her own battery of testing and has shared all results. She has called me just to check on me to see how I am feeling. Having the right GI has eased much of the stress I have been going through around this new diagnosis. I know now that Crohn's can be a very tiresome, unpredictable and debilitating condition and I have a long road to travel with it. I at least feel that I have a physician as a part of my support system who does in fact care for me.

The Diagnosis

It started with a little nagging pain...

This particular pain had started about a month before my hospitalization. I suspected that maybe I had a kidney infection because I felt uncomfortable on the left side of my back. It seemed like no matter what position I was in the ache would not go away. I would have my husband and children give me back massages thinking maybe it was muscle pain. I had been trying to lose weight and had started The Paleo Diet. I was eating few lean meats, some vegetables and consuming cold pressed raw fruit and vegetable juices. I had lost eleven lbs in a month and was feeling very healthy with the exception of this nagging pain.

It was May 2nd of this year when the pain awoke me in the middle of the night and forced me to go to the hospital. This was not the first time I had this kind of a stomach ache but it was certainly more intense than it had been before. I awoke from my sleep moaning and sweating. I felt like I had to vomit or move my bowels, I wasn't quite sure which because I felt like both could happen at any moment. My belly was throbbing with a spastic type of pain, similar to labor contractions. I ran to my bathroom and fell on the floor clutching to toilet. I began to sob and scream. I reminded myself to relax and calm down so I could clearly assess what my body was going through. After about ten minutes realizing I did not need to vomit or move my bowels, I had enough energy to crawl back to my bed. By the time I hit my pillow, the pain was back with a vengeance. My husband demanded I allow him to drive me to the nearest hospital.

The emergency room doctor ordered blood work, urinalysis and a CT scan. I was given IV fluids and a dose of morphine which, to my surprise, did not ease the pain. I was finally comfortable after a dose of dilauded. When the doctor came in to discuss my test results I was almost in shock when he asked "Does anyone in your family have Crohn's Disease? We found evidence of Crohn's on your CT scan, there is old inflammation and active inflammation. A Gastroenterologist will have to diagnose and treat you."

I was admitted into the hospital, I was given a colonoscopy. I was diagnosed with moderate-severe Crohn's Disease. It was there for five days until I was well enough to return home. And now the journey begins...